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Developmental difficulties in early childhood Developmental difficulties in early childhood Document Transcript

  • CHILD AND ADOLESCENT HEALTH AND DEVELOPMENT  ■  ■  ■  ■  ■  ■  ■  ■  ■  ■  ■  ■  ■  ■  ■  ■  ■  ■  ■  ■ DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD Prevention, early identification, assessment and intervention in low- and middle-income countries A REVIEW CAH
  • WHO Library Cataloguing-in-Publication Data Developmental difficulties in early childhood: prevention, early identification, assessment and intervention in low- and middle-income countries: a review. 1.Child development. 2.Child welfare. 3.Child health services. 4.Health promotion. 5.Developing countries. I.Ertem, Ilgi Ozturk. II.World Health Organization. ISBN 978 92 4 150354 9 (NLM classification: WS 105)© World Health Organization 2012All rights reserved. Publications of the World Health Organization are available on the WHO web site (www.who.int)or can be purchased from WHO Press, World Health Organization, 20 Avenue Appia, 1211 Geneva 27, Switzerland(tel.: +41 22 791 3264; fax: +41 22 791 4857; e-mail: bookorders@who.int).Requests for permission to reproduce or translate WHO publications – whether for sale or for noncommercial distri-bution – should be addressed to WHO Press through the WHO web site (http://www.who.int/about/licensing/copy-right_form/en/index.html).The designations employed and the presentation of the material in this publication do not imply the expression ofany opinion whatsoever on the part of the World Health Organization concerning the legal status of any country,territory, city or area or of its authorities, or concerning the delimitation of its frontiers or boundaries. Dotted lines onmaps represent approximate border lines for which there may not yet be full agreement.The mention of specific companies or of certain manufacturers’ products does not imply that they are endorsed orrecommended by the World Health Organization in preference to others of a similar nature that are not mentioned.Errors and omissions excepted, the names of proprietary products are distinguished by initial capital letters.All reasonable precautions have been taken by the World Health Organization to verify the information contained inthis publication. However, the published material is being distributed without warranty of any kind, either expressedor implied. The responsibility for the interpretation and use of the material lies with the reader. In no event shall theWorld Health Organization be liable for damages arising from its use.The named author is responsible for the views expressed in this publication.Design by minimum graphicsPrinted and disseminated with support from UNICEF (Turkey Country Office and CEECIS Regional Office).Printed in Turkey
  • CONTENTSAcknowledgements vChapter 1. Introduction and overview 1 Scope of the review 2 Terminology 2 The WHO Developmental Difficulties in Early Childhood Survey 3 Construction of the survey 3 Identification of respondents 3 Limitations of the survey 4 Outline of chapters 4Chapter 2. Early childhood development and health care systems 6 Purpose of chapter and additional key references 6 Conceptualization of child development 7 The importance of the early years 8 The role of the health care system 9 Summary of research 10 The role of primary health care 11 Developmental–behavioural paediatrics 12 Conclusions and implications for action 13Chapter 3. Epidemiology of developmental difficulties in young children 14 Purpose of chapter and additional key references 14 Conceptualization 14 Summary of research from LAMI countries 14 Conclusions and implications for action 17Chapter 4. Developmental risks and protective factors in young children 18 Purpose and scope of chapter 18 Conceptualization of risk and protective factors 18 Resilience and protective factors 18 Risk factors 19 The life-cycle approach to developmental risk factors 20 Summary of research from LAMI countries 21 Resilience and protective factors in young children 21 Risk factors in young children 22 Conclusions and implications for action 31Chapter 5. Prevention of developmental difficulties 33 Purpose of chapter and additional key resources 33 Conceptualization 34 A model for preventing developmental difficulties in early childhood 34 Research in LAMI countries 35 iii
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD An exemplary model from a developing country: the WHO/UNICEF Care for Child Development Intervention 38 Conclusions and implications for action 39Chapter 6. Early detection of developmental difficulties 41 Purpose of chapter 41 Conceptualization 41 Research in LAMI countries 42 An example from a developing country 47 Conclusions and implications for action 50Chapter 7. Developmental assessment of young children 51 Purpose of chapter and additional key references 51 Conceptualization 51 Research in LAMI countries 53 Assessment processes 53 Assessment instruments 54 Conclusions and implications for action 57Chapter 8. International classifıcation systems for developmental difficulties in young children 59 Purpose and scope of the chapter and additional key resources 59 Conceptualization 59 The Diagnostic Classification of Mental Health and Developmental Disorders   of Infancy and Early Childhood 60 The International Classification of Diseases 61 International Classification of Functioning, Disability, and Health 61 Application of classification systems 62 Strengths of the classification systems and areas that require improvement 63 Research in LAMI countries 65 Conclusions and implications 65Chapter 9. Early intervention (EI) 67 Purpose and scope of the chapter and additional key resources 67 Conceptualization 68 What are EI services? 69 Who are EI services for? 69 What major improvements are needed in the conceptualization of EI? 70 Evidence-based best practices in early intervention 71 Summary of research in LAMI countries 71 Important questions for future research 74 An exemplary model from LAMI countries 75 Conclusions and implications for action 77Chapter 10. From prevention to intervention: consensus of experts 78 Advancing policy related to developmental difficulties in early childhood at national levels 78 Bringing down barriers using common international approaches and platforms 79 Increasing local capacity by training personnel 79 Increasing capacity in other specialities related to developmental difficulties 80 Empowering caregivers 80 Conducting research 80References 81Annex 1 101 iv
  • ACKNOWLEDGEMENTST he World Health Organization wishes to express its deep gratitude to the author of this review, Dr Ilgi Ozturk Ertem, Professor of Pediatrics, Director, Developmental-Behavioral Pediatrics Divi-sion, Ankara University School of Medicine, Ankara, Turkey, and visiting professor (2006–2007) at YaleUniversity School of Medicine Department of Pediatrics, New Haven, CT, USA. The project was led and supervised by Dr Meena Cabral de Mello, Senior Scientist, Department ofMaternal, Newborn, Child and Adolescent Health, WHO, Geneva. This document was reviewed internally by members of the WHO Department of Child and AdolescentHealth and the Disability and Rehabilitation Team, and externally by international experts in the fieldincluding: Dr Vibha Krishnamurty, Director, Ummeed Child Development Centre, Mumbai, India; Profes-sor Nicholas Lennox, Director, Queensland Centre for Intellectual and Developmental Disability, Brisbane,Australia; Dr Shamim Muhammed, Sangath Organization, Goa, India; Dr Olayinka Omigbodun, Depart-ment of Psychiatry, University of Ibadan, Ibadan, Nigeria; Professor Trevor R Parmenter, Director, Centrefor Developmental Disability Studies, Sydney, Australia; Professor Atif Rahman, Chair, Department of ChildPsychiatry, University of Liverpool, Liverpool, England; Dr Chiara Servili, WHO Eritrea Country OfficeAsmara (2008); Professor Rune Simeonsson, Professor of School Psychology and Early Childhood Educa-tion, University of North Carolina, Chapel Hill, USA; Dr Aisha Yousafzai, Child Health and Disability, AgaKhan University Human Development Program and Aga Khan University Medical College, Department ofPaediatrics and Child Health, Karachi, Pakistan, and Dr Nurper Ulkuer, Chief, Early Childhood Develop-ment Unit/PDO, United Nations Children’s Fund, USA. Federico Montero and Alana Officer, WHO Disability and Rehabilitation Team, Dr Mercedes de Onis,WHO Department of Nutrition and Dr Tarun Dua, WHO Department of Mental Health provided invalu-able comments and suggestions. Thanks are due to Professor Michael Guralnick (President of the International Society of Early Interven-tion), Professor David J Schonfeld (past President of the Society of Developmental Behavioral Pediatrics anddirector of the Developmental Behavioral Pediatrics Division, Cinninnati Children’s Hospital), ProfessorMatthew Melmed (Director of Zero to Three), and Drs John M Levental, Brian Forsyth and Carol Weitz-man (Yale University School of Medicine) for their review and comments on the survey, DevelopmentalDifficulties in Early Childhood. Dr Ertem’s consultations with Professor Barry Zuckerman (Chairman of Pediatrics, Boston UniversitySchool of Medicine, Boston, USA), for this review was supported by a Leadership Development, Fellow’sCollaboration grant from Zero to Three. We also thank Zero to Three for providing the gift of an issue ofZero to Three Journal for the respondents of the survey. Most importantly, we are grateful to the numerous experts around the world for their invaluable con-tributions to the Developmental Difficulties in Early Childhood Survey. These include:Argentina: Horacio Lejerraga, MD, Head of Depart­ment of Growth and Development. Hospital de Pediatría Garrahan. Buenos Aires, Argentina. hlejarraga@garrahan.gov.arAustralia: Frank Oberklaid, MD, Professor, Centre for Community Child Health, Royal Children’s Hospital, Melbourne, Victoria, Australia. frank.oberklaid@rch.org.auBangladesh: Naila Khan PhD, Professor, Child Development and Neurology Unit, Dhaka Shishu (Children’s) Hospital, Sher-e-Bangla Nagar, Dhaka, Bangladesh. naila.z.khan@gmail.comBrazil: Jose Salomao Schwartzman, MD, Professor, Developmental Disorders Postgraduation Program, Mackenzie Presbyterian University. São Paulo,Brazil josess@terra.com.br v
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOODBulgaria: Aneta Popivanova, MD, Assistant Professor of Neonatology, University Clinic of Neonatology, University Hospital of Obstretics and Gynaecology, Sophia, apopivanova@abv.bgCanada: Emmett Francoeur, MD, Director, Child Development Program and Developmental Behavioral Pediatric Services, Montreal Children’s Hospital, McGill University Health Center, Montreal Children’s Hospital, Montreal, Quebec, Canada. emmett.francoeur@mcgill.caChile: Paula Bedregal, MD, MPH, PhD, Professor of Public Health, School of Medicine, Pontificia Univer- sidad Católica de Chile, Santiago, Chile, pbedrega@med.puc.clChina: Jin Xing Ming, MD, Department of Development and Behavioral Pediatrics, Shanghai Children’s Medical Center, School of Medicine, Shanghai Jiaotong University, Shanghai 200127, China, zhujing7@ public7.sta.net.cnEgypt : Ala’a Ïbrahim Shukrallah MD, Head of Training and Research Unit, Development Support Centre, 30 Haroun St, Geiza, Egypt, alaashuk@yahoo.comFrance: Phillipe Compagnon, MD, Hôpital Sainte Thérèse, Bastogne, Belgium philippe.compagnon@ wanadoo.frGaza Strip and West Bank: Alam Jarrar, MD, Director, Rehabilitation Program, West Bank and Gaza, Ra- mallah, Palestine, allam@pmrs.psGeorgia: Nana Tatishvili, MD, Medical director and head of neurology service, M.Iashvili Central Childrens Hospital, Tbilisi, Georgia. n_tatishvili@mail.ruIndia: MKC Nair, MD, Professor of Pediatrics & Clinical Epidemiology Director, Child Development Centre Medical College, Thiruvananthapuram Kerala, India. nairmkc@rediffmail.comVibha Krishnamurthy, MD, Director, Ummeed Child Development Center, Mumbai, India. vibha.krish@ gmail.comIndonesia: Anna Alisjahbana, MD, PhD, Professor Emeritus, Founder and Chairperson Surya Kanti Foundation (YSK), “Center for the Development of Child Potentials” Consultant & Advisor, Bandung, Indonesia. alisja_a@melsa.net.idIsrael: Gary Diamond, MD, Director, Child Development Services, Clalit Health Maintenance Organization, Dan Region, Israel, and Vice Director Child Development Institute Schneider Childrens Medical Center of Israel, Petah Tikva, Israel. diamondg@zahav.net.ilJordan: Saleh Al-Oraibi, PhD, MCSP, Assistant Professor, AL- Hashmite University , Faculty of Allied Health Sciences, Physical Therapy and Rehabilitation Department, Zarka, Jordan, so55@hu.edu.joKyrgyzstan: Nurmuhamed Babadjan, Chief of pediatric rehabilitation department, National Center of Pediatrics. nurmuhamed-babad@mail.ruGulmira Nagimidinova, Director of IMCI Center of National Center of Pediatrics and Child Surgery, assistent of department of family medicine of Kyrgyz State Medical Academy, Bishkek, Krygyzstan. nt_gulmira@yahoo.comLebanon: Moussa Charafeddine, Vice President Inclusion International, Secretary General Lebanese Parents & Institutional Associations for Intellectually Disabled, President Of MENA Region Inclusion International, President, Friends of Disabled Association-Lebanon, Beirut, Lebonon. moussa@friends- fordisabled.org.lbMalaysia: Amar Singh HSS, MD, Senior Consultant Paediatrician, Consultant Community Paediatrician Head of Paediatric Department, Ipoh Hospital, Perak, Malaysia. amimar@pc.jaring.myPakistan: Zeba A. Rasmussen, Vice Chairman, Chief Executive Officer, Mehnaz Fatima Educational and Welfare Organization, Shahrah-e-Quaid-e-Azam Near Family Health Hospital, Jutial , Gilgit, Pakistan. zebarasmussen@yahoo.com, zeba@comsats.net.pkPhillipines: Alexis Reyes, MD, Professor, Institute of Child Health and Human Development, University of the Philippines, National Institutes of Health, Manila, Philippines. alexis7591@gmail.comRomania: Adrian Toma, MD, Chief of the Neonatology Unit, “Panait Sarbu” Obstetrics and Gynecology Hospital, Bucharest, Romania. tomaotiadi@yahoo.com vi
  • ACKNOWLEDGEMENTSRussian Federation: Akaterina Klochkova, PhD, Head of physiotherapy department, St. Petersburg Pavlov Medical University, St Peterburg Early Intervention Institute, St Petersburg, Russian Federation. katya@ klo.ioffe.ruSaudi Arabia: Saleh M. Al Salehi Al Harbi, MD, Medical Director, Children’s Hospital, Consultant develop- mental behavioral pediatrics, King Fahad Medical City, Riyadh, Saudi Arabia, sssnm3@hotmail.com, salsalhi@kfmc.med.saSingapore: Rosebeth Marcou, MD, Developmental and Behavioural Paediatrician, Raffles Hospital, Singa- pore. drmarcou@gmail.comSouth Africa: Colleen Adnams, MD, Senior Specialist and Lecturer Head, Developmental (Clinical) Service and Division of Paediatric Neurosciences, Red Cross War Memorial Children’s Hospital and School of Child and Adolescent Health, University of Cape Town, South Africa. Colleen.Adnams@uct.ac.zaTurkey: Drs Ilgi Ertem, Derya Gumus Dogan, Bahar Bingoler Pekcici, Ozlem Unal. Developmental-Behavioral Pediatrics Division, Department of Pediatrics, Ankara University School of Medicine, Ankara, Turkey. ertemilgi@yahoo.comUnited Kingdom: Val Harpin, MD, Consultant Paediatrician (neurodisability), Ryegate Children’s Centre, Sheffield, United Kingdom, val.harpin@sch.nhs.ukUnited Republic of Tanzania: Augustine Massawe, MD, Senior Lecturer, Consultant Paediatrician and neonatologist, Muhimbili National Hospital, Muhimbili University College of Health Sciences, Dar es Salaam,Tanzania. draugustine.massawe@gmail.comUnited States of America: David J. Schonfeld, MD, Director, Division of Developmental and Behavioral Pediatrics Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, United States. david. schonfeld@cchmc.orgViet Nam: Tran Thi Thu Ha, MD, Vice Director of the Rehabilitation Department, National Hospital of Pediatrics, Rehabilitation Director, Hope Center, Hanoi, Vietnam. mdthuha@yahoo.comFor further information about this document please contact Meena Cabral de Mello, Senior Scientist andWHO Focal Person for Early Childhood Development in the Department of Child and Adolescent Health,WHO/HQ, who led and managed this project. This document is a part of a series of evidence based reviews intended to guide interventions to improvethe health, growth and development of children, particularly those living in resource-poor settings. Theother reviews of relevance are:● A critical link: Interventions for physical growth and psychological development. WHO/CHS/CAH/99.3 (1999).● Family and community practices that promote child survival, growth and development: A review of the evidence. WHO. ISBN 92 4 159150 1 (2004).● The importance of caregiver–child interactions for the survival and healthy development of young children. WHO. ISBN 924159134X (2004).● Mental health and psychosocial well-being among children in severe food shortage situations. WHO/MSD/ MER/06.1 (2006).● Responsive parenting: interventions and outcomes (2006). Bulletin of the World Health Organization, 84:992–999.● The role of the health sector in strengthening systems to support children’s healthy development in communities affected by HIV/AIDS: A review. WHO. ISBN 9241594624. (2006).● Early child development: A powerful equalizer (2007). Final Report for the World Health Organization’s Commission on Social Determinants of Health. http://www.who.int/child_adolescent_health/documents/ ecd_final_m30/en/● The Lancet: Child development in developing countries series. The Lancet, Vol 369 January 6, 2007. http://www.who.int/child_adolescent_health/documents/lancet_child_development/en/index.html vii
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD● The Lancet: Child Development 1. Inequality in early childhood: risk and protective factors for early child development. Lancet 2011; 378: 1325–38 http://www.thelancet.com/journals/lancet/article/PIIS0140- 6736%2811%2960555-2/fulltext.● The Lancet: Child Development 2: Strategies for reducing inequalities and improving developmental outcomes for young children in low-income and middle-income countries. Lancet 2011; 378: 1325–38. http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2811%2960889-1/fulltext● Facts for life. UNICEF. Fourth edition (2010). ISBN: 9789280644661.To obtain copies of the above documents and for further information, please contact: Department of Maternal, Newborn, Child and Adolescent Health World Health Organization 20 Avenue Appia 1211 Geneva 27 Switzerland Tel: +41 22 791 3281 Fax: +41 22 791 4853 Email: cah@who.int Web site: http://www.who.int/child-adolescent-health viii
  • 1 Chapter Introduction and overviewT he majority of the world’s children live in low- and middle-income (LAMI) countries. Often,in these countries, the health care system is theonly system that has the potential to reach mostyoung children and their families. For centuries,clinicians, researchers and advocates around theworld have been working to prevent, diagnoseand treat childhood illness, so that children canenjoy good health and reach adulthood. Thistask continues to be a challenge. There is stillan unacceptable disparity between high-incomeand LAMI countries with respect to indicators forchild survival and health. Equally unacceptableis the disparity between countries in the range The majority of world’s children live in low- and middle-of supports available to help children develop income countries, Nicaragua. © WHO-342031/C.Gaggerooptimally, and to prevent, detect and managedevelopmental difficulties during infancy andearly childhood. development, countries are categorized as high- Despite long experience in fighting childhood income or low- and middle-income according toillness and mortality, health care providers in the World Bank definition (www.siteresources.LAMI countries face new challenges in promot- worldbank.org/DATASTATISTICS/.../CLASS.ing child development. There is, nevertheless, a XLS accessed 21.04.2011).wealth of information on this topic, generated by Developmental difficulties during earlyresearchers and clinicians working in resource- child­ ood are increasingly recognized in LAMI hpoor conditions. The main premise of the present countries as important contributors to morbidityreview lies in the words of the late Professor Mujdat in children and adults. Health care systems inBasaran, a renowned paediatrician in Turkey: “We high-income countries provide multiple oppor-must generate our own science. We must search tunities for the prevention, early identificationand research for information that is pertinent for and management of developmental difficultiesour own circumstances and we must contribute in young children. Interventions to improve theto the production of the science that will help us development of young children are becomingmove forward.” This review therefore compiles the increasingly available in LAMI countries, andwealth of information that has already accumu- include low-cost strategies, such as addressinglated in a systematic framework that can be used malnutrition and iron deficiency, training car-by health care providers in LAMI countries. egivers, increasing psychosocial stimulation and In this review, the term “developmental dif- providing community-based rehabilitation.ficulties” is used to refer to a range of difficulties Infancy and early childhood are the best timeexperienced by infants and young children, for the prevention and amelioration of problemsincluding developmental delay in the areas of that could potentially cause developmental dif-cognitive, language, social-emotional, behav- ficulties and affect brain development across theioural and neuromotor development. “Early lifespan. A focus on prevention and early inter-childhood” and “young children” relate to the vention for developmental difficulties requiresage range 0 to 3 years. Since economic status is an understanding of the magnitude and naturethe most important factor determining human of the problems, to ensure a match between the 1
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD interventions delivered and what is needed by the information on specific developmental risk fac- children, their families and their communities. tors, such as human immunodeficiency virus Many families have contact with the health care (HIV) infection and acquired immunodeficiency system most often – and sometimes only – when syndrome (AIDS), low birth weight, malnutrition their children are young. Health care encounters and chronic illness. This review should not be for young children are, therefore, important viewed as a general resource for early childhood opportunities for clinicians in LAMI countries to disability or for specific developmental disabili- have a positive influence on development. ties, such as cerebral palsy, genetic or metabolic In most LAMI countries, the health care sys- disorders, autism spectrum disorders, and cogni- tem does not have a model for the promotion tive or sensory impairments. These topics deserve and monitoring of the development of children, specific attention beyond the scope of this review. prevention and early identification of risk factors Where relevent and possible, reference is made associated with developmental difficulties, and to other reviews or documents on these topics. early interventions. Health care providers may not have appropriate knowledge and expertise, Terminology and service delivery systems may be inadequate. However, by building local capacity, a systematic During the first three years of life, even children approach, specific to the needs of LAMI countries, who are showing typical development may be at can be developed. This review seeks to help health risk and in need of early intervention services. care providers and systems in LAMI countries to Children may show differences from the broad build such local capacity. range of healthy development without necessar- ily having a specific disorder or disability. This review includes issues related to a broad spectrum Scope of the review of problems that may affect development. There- WHO has previously published three reports fore, the term “developmental difficulty” is used related to child development. The first, A critical to include conditions that place a child at risk for link (WHO, 1999) summarized the importance suboptimal development, or that cause a child to of addressing both the nutritional and psycho- have a developmental deviance, delay, disorder social aspects of malnutrition and was a seminal or disability. The term is intended to encompass report on the need for developmentally based all children who have limitations in functioning biopsychosocial approaches to child health. The and developing to their full potential, e.g. those second, The importance of caregiver–child interac- living in hunger and social deprivation or born tions for the survival and healthy development of with low birth weight, as well as those with cer- young children (Richter, 2004) contained impor- ebral palsy, autism, cognitive imparments such tant information on the most critical component as Down syndrome, sensory problems, or other of child development, physical disabilities, such as spina bifida. the relational aspect. There is no universally accepted definition of The third, Early child- developmental pathology during infancy and early During the first hood development: a pow- childhood (Msall, 2006). “Developmental delay” three years of life, even erful equalizer (Irwin, is often defined as a deviation of developmentchildren who are showing Siddiqi & Hertzman, from the normative milestones in the areas oftypical development may 2007), prepared for the cognitive, language, social, emotional and motor be at risk and in need WHO Commission on functioning. Neurodevelopmental disorders have of early intervention the Social Determinants been categorized as cerebral palsy, autism, genetic services. of Health, provided an syndromes and metabolic diseases affecting the in-depth look at the central nervous system (Batshaw, 2002). Often importance of social infants and young children with any kind of dif- determinants in shaping child development ficulty require a broad range of services, referred This fourth report includes information to as early intervention. While some disabilities from low- and middle-income countries on the merit specified services, there are widely rel- conceptualization, epidemiology, prevention, evant common approaches that can be delivered detection, assessment and early management of through health systems for the prevention, early the broad spectrum of developmental risk factors detection and management of developmental dif- and developmental difficulties in children aged ficulties. An in-depth knowledge of the function- 3 years and under. It does not contain in-depth ing and needs of the child, family and community 2
  • CHAPTER 1. INTRODUCTION AND OVERVIEWis often more important than the category of the The following WHO projects also informed thepathology. For this reason, this review adopts construction of the DDEC Survey:a non-categorical approach, as recommended ● Atlas: Country Resources for Neurologicalby pioneers in the fields of early intervention Disorders (WHO 2004b)and children with special needs (Msall et al., ● Mental Health Atlas, (WHO 2005a)1994; Msall, 2006; Stein & Silver, 1999; Stein, ● WHO AIMS: Mental Health Systems in low-2004). This non-categorical approach parallels and middle-income countries: a WHO-AIMSthat of the WHO International Classification of cross-national analysis (WHO 2005b)Functioning, Disability and Health for Children ● Atlas: Child and adolescent mental healthand Youth (ICF-CY) framework (WHO, 2007), resources: Global concerns, implications forwhich is explained in detail in Chapter 8 (Lollar the future (WHO 2005c)& Simeonsson, 2005; Simeonsson, 2007). ● Atlas: Epilepsy care in the world (WHO 2005d) ● Atlas: Global resources for persons with intel-The WHO Developmental Difficulties lectual disabilities (WHO 2007b).in Early Childhood Survey A broad literature search was conducted to iden-There is little information available about how tify key publications that examined similar con-health care systems are functioning with regard structs. A study conducted by the Internationalto the prevention, early detection and early man- Society of Prevention of Child Abuse and Neglectagement of developmental difficulties. The Devel- (ISPCAN, 2008) and another of structures andopmental Difficulties in Early Childhood (DDEC) practices of well-child care in ten high-incomeSurvey was therefore developed to identify the countries (Kuo et al., 2006) provided useful inputstructures and practices in different countries. to the DDEC.Sample results from this survey are provided in The reliability of the questions was checkedsummary form at the beginning of the relevant by giving the survey to two expert respondentschapters in this review. The detailed results will in each of four countries. When major disaggre-be presented elsewhere. ments were found, questions were removed; for minor disagreements, questions were reworded.Construction of the survey Identification of respondentsA number of key questions were identified anddiscussed with a group of experts within the The networks of WHO, UNICEF, the Society forWHO Departments of Child and Adolescent Developmental Behavioral Pediatrics, the Inter-Health and Development, Mental Health, and national Society for Early Intervention and ZeroNutrition, and the Disability and Rehabilitation to Three were contacted to identify key expertsTeam. In addition, a number of internationally around the world who met all of the followingrenowned experts in the fields of early childhood three criteria.development, developmental difficulties and early 1. The person was the key expert (or one of theintervention provided input to and comments key experts) in the country on early identifica-on the content and structure of the survey (see tion, early intervention and rehabilitation ofAcknowledgements). young children aged 0–3 with developmental risks (such as low birth weight or malnutrition) and difficulties (such as developmental delay, cerebral palsy, Down syndrome). 2. The person had in-depth knowledge about the health care system and the training of primary child health care providers in the country. Pref- erence was given to academic paediatricians responsible for training health care providers. 3. The person had good command of English. A literature search was also conducted to identify professionals who had published on the conceptsSocial interactions begin early in life: 3-month old, Niger.© UNICEF/NYHQ2009-2569/Holtz in the DDEC Survey. When an expert was identi- 3
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD of the early years and the role of the health care system in ensuring the optimal development of all children. The term “child development” indicates the advancement of the child to reach his or her optimal potential in all areas of human function- ing – social, emotional, cognitive, communication and movement. In the past few decades, new imaging techniques have enabled us to visualize how the human brain develops. This chapter sum- marizes comtemporary theory on early childhood development and provides a framework for why this concept deserves to be addressed in detail within health systems around the world.Early stimulation is crucial to optimal development: one-year old with Down syndrome, Turkey. Photo: Canan Gul Gok Chapter 3 provides a framework for under- standing the epidemiology of developmental difficulties in young children by reviewing thefied, at least one of the networks was contacted existing evidence.to confirm that he or she was suitable to be the Chapter 4 introduces a conceptual framework,respondent for the country. In total, experts from the “Life cycle approach to developmental risk35 countries were identified and invited to par- factors”, which organizes the risk factors and pro-ticipate in the Web-based survey. tective factors for child development in a way that Respondents from 31 countries completed helps countries and communities determine whatthe survey, comprising 94% of those identified needs to be done. Research in LAMI countries onand eligible. Of these, 6 were from low-income preconceptional developmental risk factors thatcountries, 17 from middle-income countries and have not previously been fully explored, such8 from high-income countries. Despite the small as adolescent parenting, unintended pregnancy,number of countries included, the total popula- inadequate birth interval and consanguinity, aretion of the countries in the survey is approxi- also reviewed.mately 70% of the world population. Chapter 5 provides a new conceptual frame- work of interventions that can be delivered within the health care system for the prevention of devel-Limitations of the survey opmental difficulties in young children. ExamplesThere are two main limitations of the DDEC of research on prevention in LAMI countries aresurvey – generalizability and reliability. Its gen- given, and an exemplary programme, the WHO/eralizability is limited by the fact that countries UNICEF Care for Child Development Interven-that were included comprise a portion of the world tion, is summarized.population. Countries particularly in Africa may Chapter 6 deals with early recognition ofnot be well represented in this survey. Further- developmental difficulties in young children.more, since this survey represents information Early recognition allows both preventive andprovided by one expert opinion from each coun- therapeutic approaches to be implemented andtry, the question of reliability and generalizability is a crucial step in addressing the problems. Inof the responses remains a limitation. Respond- high-income countries, the integration of devel-ents were knowledgeable, were asked to report opmental monitoring into health care encountersabout their country as a whole, and to use data has been recognized as an important strategyand other expert opinions to respond to the ques- for the early detection of developmental dif-tions when possible. However, their views may ficulties. This chapter promotes developmentalnot reflect the situation in all parts of the country. monitoring in LAMI countries, summarizing its conceptualization and addressing key ques- tions of importance for LAMI countries. A novelOutline of chapters method of developmental monitoring, which isThe body of this review comprises nine chapters. currently being used in Turkey and which hasAt the beginning of the first eight chapters, the been specifically developed by the author withrelevant results from the DDEC Survey are given. attention to the needs of health care providers in Chapter 2 provides a summary of the concep- LAMI countries, is also introduced. This methodtualization of child development, the importance is fully complementary with the WHO/UNICEF 4
  • CHAPTER 1. INTRODUCTION AND OVERVIEWCare for Child Development Intervention. Whenused together, these two methods may provide a “…in the context of the successes ofsystematic, family-centred and strengths-based current primary health care child survival initiatives,approach to monitoring the development of young it is essential in low-income countries that increasedchildren, to prevent the most common cause of emphasis be placed on prevention and earlydevelopmental delay (understimulation), to detect identification of developmental disabilities withindevelopmental difficulties and to provide early the primary and maternal and child health careintervention. systems. Those systems must in turn be linked to and Chapter 7 focuses on the developmental supported by secondary and tertiaryassessment of young children, to establish a medical services.”diagnosis, ascertain their level of functioning,determine their needs for additional support and Committee on Nervous System Disordersservices, and enable them to reach such services. in Developing Countries, 2001In many resource-rich countries, a team of clini-cians from multiple disciplines evaluate the childand the family. In countries with fewer resources,the evaluation of the child may be conducted by and Youth (WHO, 2007), and provides examplesone or two clinicians with a less broad experience. of how this system can be applied to capture theThe basic principles of developmental assess- functioning and needs of young children. It alsoment, however, can be applied by an experienced provides a summary of the framework developedclinician in any setting, to give a comprehensive by Zero to Three (2005).assessment leading to appropriate interventions. Chapter 9 provides a summary of early inter-This chapter, therefore, provides information on ventions to guide health care providers and healththe basic principles of developmental evaluation, care policy-makers in LAMI countries in theirthe types of developmental assessment that are efforts to improve the lives of developmentallydesirable and how to begin building an infrastruc- vulnerable children and their families.ture for such assessments. Chapter 10 presents the key actions suggested Chapter 8 summarizes information on clas- by the respondents to the DDEC Survey. Thesesification systems for developmental difficulties have been compiled under headings that emergedin young children that can be used in LAMI from a qualitative analysis of the open-endedcountries. Internationally endorsed classifica- questions in the survey, i.e. (a) advancing policytions facilitate the gathering, conceptualiza- related to developmental difficulties in early child-tion, interpretation and sharing of information hood at national level; (b) breaking down barri-between clinicians and researchers around the ers using common international approaches andworld. Countries may also use classifications to platforms; (c) increasing local capacity by train-determine whether children are eligible for certain ing personnel; (d) increasing capacity in otherservices. This chapter places specific emphasis specialities related to developmental difficulties;on the WHO International Classification of (e) empowering caregivers; and (f) conductingFunctioning, Disability and Health for Children research. 5
  • 2 Chapter Early childhood development and health care systems Purpose of chapter and additionalDDEC Survey results key references TA number of questions in the DDEC he recent Lancet series, “Early childhoodSurvey requested information on the development in developing countries”,infrastructure and role of the health services estimated that over 200 million children inin addressing developmental difficulties in developing countries are not reaching their fullyoung children. In most countries, access developmental potential (Grantham-McGregor etto health care providers was not an issue. al., 2007). The Disease Control Priorities projectTrained health care providers were either has stated that 10–20% of individuals have learn-within walking distance or accessible by ing or developmental difficulties (Durkin et al.,transportation that was affordable to most 2006). Developmental difficulties are the mostof the population. Continuity of health care, common causes of long-term morbidity (Com-however, was a problem. Child development mittee on Nervous System Disorders in Develop-can best be addressed if the same health ing Countries, 2001). This chapter summarizescare provider follows the child over time. the conceptualization of child development, theIn most countries, however, children did importance of the early years of life and the rolenot receive primary preventive health of the health care system in ensuring optimalcare, or care for acute or chronic illness, development of all children.continuously from the same providers. In In-depth information on the theoretical con-most low-income countries, but not high- ceptualization of child development is beyond theand middle-income countries, home-visiting scope of this review. Readers are referred to otherwas available for the majority of children. key documents that contain detailed informationIn all LAMI countries, there was a shortage on contemporary developmental theories andof primary health care personnel. General interventions during infancy and early childhoodpaediatricians, paediatric subspecialists, (Shonkoff & Phillips, 2000; Shonkoff & Meisels,and professionals trained to deal with 2003; Guralnick, 2005a; Myers, 1995; Zeanah,children with special needs were also few 2000; National Scientific Council on the Develop-in number. Although some preservice or ing Child, 2007).in-service training programmes existed, The Institute of Medicine has published aprimary health care providers did not book specifically intended to guide health caregenerally have the expertise to deal with systems, which reviewed in detail the potentialdevelopmental difficulties. response of such systems to developmental disor- ders (Committee on Nervous System Disorders in Developing Countries, 2001). Durkin et al. (2006) reviewed the disease burden of learning and developmental difficulties and ways to address these problems. A number of recent Lancet series – on neonatal survival (Darmstadt et al., 2005; Knippenberg et al., 2005; Martines et al., 2005, Lawn, Cousens & Zupan, 2005), child development in developing countries (Engle et al, 2007; Grantham-McGregor et al., 2007; Walker et al., 2007,), maternal and child undernutrition (Black et al., 2008), global 6
  • CHAPTER 2. EARLY CHILDHOOD DEVELOPMENT AND HEALTH CARE SYSTEMSmental health (Barret, 2007; Bhugra & Minas, cal link (WHO, 1999) documented the critical2007; Chisholm et al., 2007; Dhanda, 2007; Her- relationship between the nutritional status of arman & Swartz, 2007; Horton, 2007; Jacob et child and his or her psychological development,al., 2007; Patel et al., 2007; Prince et al., 2007; and demonstrated the effectiveness of combin-Saraceno et al., 2007; Sartorius, 2007; Saxena et ing interventions to promote early childhoodal., 2007) and disability (Groce & Trani, 2009; development with efforts to improve child healthGottlieb et al., 2009; Trani, 2009) – contain infor- and nutrition, in an integrated care model. Themation on addressing developmental difficulties report highlighted the importance of addressingin young children within health care systems. both the nutritional and psychosocial aspects of There are many international resources related malnutrition and was a seminal report on theto children with developmental difficulties. The need for developmentally based biopsychosocialUnited Nations (UN) has two conventions related approaches to child health. The second publica-to children with developmental difficulties: tion, The importance of caregiver–child interactionsthe UN Convention on the Rights of the Child for the survival and healthy development of young(United Nations, 1989), and the UN Convention children (Richter, 2004) contained importanton the Rights of Persons with Disabilities (United information on the most critical component ofNations, 2006). Both affirm that children have the child development, the relational aspect. Theright to develop to their full potential and that third, Early childhood development: a powerful equal-countries should guarantee that children with izer (Irwin, Siddiqi & Hertzman, 2007), preparedspecial needs receive the services they require. for the WHO Commission on the Social Deter-The second convention promotes and protects minants of Health, provided an in-depth look atthe full and equal enjoyment of all human rights the importance of social determinants in shapingand fundamental freedoms by people with dis- child development. This report highlighted theabilities, and is legally binding for all Member need for sustained research activities to under-States. Article 25 of the Convention requires stand the effects of the environment on biologicalMember States to ensure access for persons with endowment and early childhood development,disabilities to health services that are gender- and for available evidence to inform actions tosensitive, including health-related rehabilitation. further child development social investmentHowever, the Convention does not explicitly strategies at all levelsdefine disability. The UN Standard Rules for theEqualization of Opportunities for Persons with Dis- Conceptualization ofabilities, which was recognized by the UN General child developmentAssembly in 1993 (United Nations, 1993), is usedfor monitoring progress in addressing disability The term “child development” indicates advance-in countries. Importantly, this report addresses ment of the child in all areas of human functioning:the basic preconditions that need to be in place social and emotional, cognitive, communicationto improve the quality of life of children with and movement. A long-standing debate in childdevelopmental difficulties. development theory relates to the relative influ- WHO has previously published three reports ence of nature versus nurture. If nature is assumedrelated to child development. The first, A criti- to be predominant, child development follows a genetically programmed progression, influ- enced by biomedical risks. On the other hand, if nurture is considered more important, then the child’s development is primarily influenced by the caregiving environment – proximally by the primary caregivers and more distally by the larger community. The contemporary theoretical conceptual- ization of child development incorporates the importance of both nature and nurture, parallels the biopsychosocial model of health (Engel 1977), and builds on Bronfenbrenner’s bioecological model (Bronfenbrenner & Ceci, 1994). This modelThe health system has a key role in monitoring andpromoting child development: Developmental Pediatrics postulates that human development takes placeDivision, Turkey. Photo: Dr. Ilgi Ertem through progressively more complex interactions 7
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOODFigure 1. Conceptualization of child child, through the living and working conditions development (reproduced from of the caregivers, the educational, social and Ertem, 2011) health services, and the physical environment. For example, the child may be affected by the mother D IS T AL ENVIRONMENT or father being stressed because the workplace Co m m u ni ty oeconomic milieu is not accommodating their needs and desires S oc i as new parents. Bioecological theory holds that • • E N V IR O N H e all components – the biological, psychological, t IM AL M OX er s , f a m ENT P R a re g iv and social functioning of the child and his or al en il y th C m her dynamic interactions with the proximal and on Se rv vir distal environments – must be addressed when ice en Child supporting and monitoring child development s • Physical in primary care. Bronfenbrenner’s bioecological rvices perspective offers a useful lens for understanding and supporting young children and their fami- • Li l Se Mother Father lies. This conceptualization can be used in both vin cia individual clinical work and in developing model g So an programmes. Bronfenbrenner himself has stressed • d o w n rk ti the importance of recognizing and accepting o in g en rv n co nd in te t io the uniqueness and strength within each family ition s • Early ca du system and in crafting empowering relations with • E families (Swick & Williams, 2006). A more detailed explanation of how distal environments influence child development can be found in the Total Environmental Assessmentbetween a “biopsychosocial” human being and the Model of Early Childhood Development (TEAM-persons, objects, symbols and systems in his or ECD) framework developed for the WHO Com-her proximal and distal environment. This inter- mission on Social Determinants of Health (Irwin,action is dynamic and the child plays an active Siddiqi & Hertzman, 2007). In the TEAM-ECDrole from birth onwards. Figure 1 offers a practical framework, there are “spheres of influence” onschema for this theory (Ertem, 2011). Here, the early childhood development. These spheres are:biological and genetic endowment of the child is (1) the individual child, (2) the family and dwell-represented by the circle labelled “child”. Within ing, (3) residential and relational communities,this endowment are included concepts such (4) national, regional and global environmentsas physical health, temperament, personality, (including global health status, ecological, eco-developmental abilities, strengths, coping skills nomic, political and social environments), and (5)and vulnerabilities. The two other circles, labelled early childhood programmes and services. In each“mother” and “father”, represent the equivalent sphere of influence, social, economic, cultural andcharacteristics of each member of the child’s gender factors affect the quality of the proximalproximal caregiving environment – often the caregiving environment, which is instrumental forparents, but also other key caregivers and siblings. healthy development in early childhood.The arrows between the different members signifyrelationships and interactions between them. Theintersecting arrows symbolize how relationships The importance of the early yearsbetween one pair shape and influence others in The importance of the early years in human devel-the system. The proximal environment includes opment is neither a new nor a Western concept;the child’s relationship with the primary caregiv- nor is it, in fact, a concept that is foreign to medicalers and everyday interactions, such as feeding, sciences. The works of Avicenna (980–1037), acomforting, playing and talking. This environ- Persian physician who is considered the father ofment is nested in a community of extended fam- modern medicine, and Darwin (1809–1882) theily, neighbours and friends, and a socioeconomic founder of the theory of evolution, demonstratemilieu, which includes the workforce, the wealth that the concept of early childhood developmentand well-being of the country, and the health of has occupied the minds of physicians, philoso-the population. This distal environment directly phers, scientists and caregivers for hundreds ofor indirectly influences the development of the years. According to Avicenna, the early years 8
  • CHAPTER 2. EARLY CHILDHOOD DEVELOPMENT AND HEALTH CARE SYSTEMSare the most important stage in the life of an This construct can help clinicians, who are inindividual: “the infant is exposed to problems fact a component of the holding environment forand difficulties soon after birth and in the early the mother. Approaches that foster the mother’sstages of childhood and these influence his psy- sense of competence and that empower her willchology and temperament, and hence his moral be effective; approaches that criticize her or makeand ethical development” http://www.ibe.unesco. her feel inadequate will be counterproductive.org/publications/ThinkersPdf/avicenne.pdf A relationship-based, supportive, non-critical,accessed 12.07.2007). non-didactic approach to parents is the hallmark Darwin, on the other hand, kept detailed of many successful interventions.records of the development of his son, providing In the past few decades, new imaging tech-one of the first systematic studies of child develop- niques have provided further information onment (Darwin, 1877). A large body of scientific the development of the human brain. Dynamicresearch has been conducted since these early brain-imaging technology has demonstratedattempts to understand, study and explain child that the full complement of neurons is formeddevelopment. before the third trimes- In addition to the bioecological model, two ter of pregnancy, butother theoretical concepts – attachment theory that the connections or Dynamic brain-and the concept of “the motherhood constellation” synapses between these imaging technology– provide guidance on how clinicians can support neurons largely develop has demonstrated thatchild development. Attachment theory, developed after birth. This synap- the full complement ofby Bowlby (1978), suggests that a stable, respon- togenesis, and the later neurons is formed beforesive, nurturing primary relationship enables the “pruning” processes that the third trimester ofchild to regulate his or her emotions and develop occur in the developing pregnancy, but that thea secure base from which to explore, learn and brain, are constructed connections or synapsesform relationships with others. Attachment theory to a large degree in the between these neuronsimplies that interventions in primary care should early years within the largely develop afteraddress the “caregiver–child” dyad and support caregiving environment. birth.parents in helping their infants develop secure The quality of the every-attachment. Research in developmental psychol- day actions of the par-ogy and child psychiatry has shown that a secure ents – smiling, talking,attachment to a primary caregiver is associated cuddling, singing, and responding to the infantwith healthy emotional and cognitive functioning – shapes the circuitry of the developing brainin later life (Boris et al., 2000). Recent research (Shore, 1997; Hannon, 2003).on children raised in orphanages supports the It has also been established that stressorsimportance of early relationships and stimulat- during the early years affect brain architecture.ing environments during the early years of life, Shonkoff (2006) defines toxic stress as “strong,showing that the cognitive outcome of abandoned frequent, and/or prolonged activation of the body’schildren brought up in institutions was mark- stress-management systems in the absence ofedly below that of abandoned children placed in the buffering protection of adult support”. Pre-institutions but then moved to foster care (Nelson cipitants of toxic stress include extreme poverty,et al., 2007). recurrent physical or emotional abuse, chronic “The motherhood constellation” is a theoretical neglect, severe maternal depression, parental sub-construct developed by Stern (1998), a pioneer stance abuse and family violence. An importantin infant development and mental health. He consequence of toxic stress is disruption of therefers to the birth of a child and the early years brain architecture, leading to stress-managementas a specific era of emotional development for systems that respond at relatively low thresholds.the mother. The pregnancy and the birth of the These low thresholds persist throughout life,baby change her mental organization, so that increasing the risk of stress-related physical andher primary preoccupations become keeping the mental illness throughout childhood and the adultinfant alive and protected, caring for the baby so years (Shonkoff, 2006).that he or she will become “her” baby and notjust any baby (enabling attachment), and creating The role of the health care systema supportive, psychologically “holding” environ-ment that supports her mothering. Stern calls Many LAMI countries already have the infra-this construct “the motherhood constellation”. structure needed to support child development 9
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOODwithin the health care system. For example, Indiahas the world’s largest integrated early childhooddevelopment services; operational since 1975,functioning in thousands of centres and coveringmillions of children and mothers, these servicesaim to improve the health and development ofchildren and families. In 2004, there were 5652ICDS projects in India, 4533 in rural areas, 759in tribal areas and 360 in urban areas (Ministryof Women and Child Development, 2009). InTurkey, local health care facilities are located atvillage level throughout the country, staffed withphysicians, nurses and home-visiting midwives.Thus, the health care system in many countriescan have a crucial role in promoting child devel-opment and in the prevention, early detectionand management of developmental difficulties. The rationale behind this crucial role can besummarized in four key points, as noted below.1. In any country, the health care system is often the only system that can potentially reach all young children and their families.2. The biopsychosocial model of child develop- The health system in most countries is the only system ment recognizes that much, if not all, human that has potential to reach all families. © PAHO/WHO 319032 disease and disability are a function of the interaction between genes and the environ- 4. As a result of research showing the positive out- ment. Physical health and development, though comes of early intervention, there has been par- often viewed as separate components of child ticular emphasis in many developed countries well-being, are in fact inseparable. The factors on the early identification and management of that cause poor health, e.g. undernutrition, also developmental difficulties within health sys- affect development. Similarly, factors that cause tems. In most LAMI countries, the personnel poor development, e.g. an unresponsive caring and infrastructure for early intervention may environment, also affect health. WHO refers to not appear to be universally accessible. How- this as the “critical link” between physical health ever, most early intervention programmes for and psychosocial development (WHO, 1999). young children with developmental difficulties Any system intended to address one component, do not require extensive staffing, and work best therefore, must be equipped to address both. when administered through caregivers. The Often, this system is the health system. training of caregivers in early intervention is3. Caregivers, families and communities gener- feasible in LAMI countries. As the availability ally have trust in, and contact with, the health of early intervention and community-based care system (Durkin et al, 2006; Committee rehabilitation increases, the need for the early on Nervous System Disorders in Developing detection of problems through the health care Countries, 2001; Engle et al., 2007). This con- system is becoming more evident. tact is most frequent when the child is young, for example for immunizations and growth monitoring, as well as for acute and chronic Summary of research illnesses. Such health care encounters are Research in high-income populations has shown excellent opportunities to strengthen families’ that promotion of development in paediatric efforts to promote their child’s development, health care encounters has many potential and may be the only chance available for pro- benefits for children and families. For decades, fessionals in developing countries to positively high-income countries have included within the influence carers of young children and to pre- health care system efforts to promote child devel- vent developmental difficulties. opment. These countries have also mainstreamed 10
  • CHAPTER 2. EARLY CHILDHOOD DEVELOPMENT AND HEALTH CARE SYSTEMSthe early detection of developmental difficulties one of the features of the health system that makeand links to early intervention services. This it so important in addressing child developmentplacing of health care delivery in a developmental issues in LAMI countries.context has benefits for both physical health and There are, however, many potential barriersdevelopment. This is especially attractive where in the primary health care system that can makedevelopmental approaches are added to existing this task difficult. Continuity of care – receivingstructures in routine primary care. There are health care from the same provider over a periodmany examples in high-income countries of how of time – is one of the most important principlesa developmental approach has been incorporated and is crucial to the delivery of developmentallyinto primary care for young children (Regalado & appropriate health care. In the continuity-of-Halfon, 2001). These include Sure Start in Eng- care model, each child (and sometimes family)land (Roberts & Hall, 2000), the European Early is followed over time by the same health carePromotion Project which has taken place in eight provider. Studies in the United States during thecountries (Roberts et al, 2002), Help me Grow 1970s showed the beneficial effects of receiving(Dworkin, 2006), Bright Futures (Green, 1994; continuous health care from the same providerHagan, Shaw & Duncan, 2008; Knight, Frazer (Alpert et al., 1976; Gordis & Markowitz, 1971;& Emans, 2001), Healthy Steps (Niederman et Starfield et al., 1976). The benefits of continuousal., 2007; McLearn et al., 2004; Minkovitz et al., primary care over episodic care included: fewer2001; Zuckerman et al., 1997), Reach Out and hospitalizations, operations, visits for illness,Read (Needleman et al.,1991), and Touchpoints and breaking of appointments; more healthin the United States (Brazelton, 1999; Hornstein, supervision visits, use of preventive services, andO’Brien & Stadtler, 1997). In addition, research patient satisfaction; andhas focused on the early detection and manage- lower costs (Alpert et al.,ment of developmental difficulties (Council on 1976). Since the 1980s, Primary health careChildren with Disabilities, 2006). developed countr ies providers are in a key Child mortality and morbidity patterns in have tried to ensure that position to addressLAMI countries are changing dramtically. In each child has a continu- child development inmost countries, childhood mortality has declined ous primary health care developing countries.considerably in the past 20 years. The major provider. More research Often they are the onlycauses of death have also changed. For example, is needed on the effects service providers whoin Bangladesh, chronic diseases and injuries of continuity of care in reach young children andhave overtaken infectious diseases as the lead- LAMI countries and the their families, and theying causes of child death (Rahman et al., 2004c). changes to the system are generally trusted inFurther research is needed in LAMI countries that would be needed to their communities.to understand these changes and improve the ensure such continuity.planning of appropriate policies to address the The quality of thenew challenges. support given by the health care provider will depend on his or her training and experience in child developmentThe role of primary health care concepts. The DDEC Survey indicated that healthPrimary health care providers are in a key position care providers, particularly in the LAMI coun-to address child development in developing coun- tries, generally do not have adequate trainingtries. Often they are the only service providers and experience in the prevention, early detectionwho reach young children and their families, and and management of developmental difficulties inthey are generally trusted in their communities. young children. The limited research from LAMIIn addition, their background enables them to countries also indicates that primary health careidentify and take action against the biological and clinicians require training in counselling car-psychosocial causes of developmental difficulties. egivers on child development and detecting and The DDEC Survey found that, in most of the managing related difficulties (Powell et al., 2004;countries, health centres were readily accessible Rahman et al., 2004a, 2008; Turmusani, Vreedeto the majority of the population. Home-visiting & Wirz, 2002; Walker et al., 2005; WHO, 1999,by health providers – an important vehicle for 2001a, 2006). WHO and UNICEF have developedintegrating child development concepts into a number of resources to help train clinicians inhealth care delivery – was also routinely practised LAMI countries to address child development.in many of the LAMI countries. Accessibility is Community-based rehabilitation (CBR) interven- 11
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD tions promoted by WHO for the past 20 years, information, since each focuses on only one aspect for example, are becoming available for young of child development training and examines the children in developing countries (Beard, 2007; efficacy of training under controlled research Lozoff, Jimenez & Smith, 2006; Richter, 2004). conditions. More research and information are WHO/UNICEF training modules on “Care for needed from developing countries on the effec- child development intervention” (see Chapter 5 for tiveness and sustainability of comprehensive more information) have been available as a com- models for addressing child development within ponent of Integrated Management of Childhood health care systems. Illness (IMCI) (WHO, 2001a) and currently as an intervention that can be integrated into processes Developmental–behavioural paediatrics As a guide to progress in the area of develop- “…in the context of the successes of mental disorders, the US Institute of Medicine current primary health care child survival released a report in 2001 (Committee on Nerv-initiatives, it is essential in low-income countries that ous System Disorders in Developing Countries,increased emphasis be placed on prevention and early 2001), which recommended that “in the contextidentification of developmental disabilities within the of the successes of current primary health care primary and maternal and child health child survival initiatives, it is essential in low-care systems. Those systems must in turn be linked to income countries that increased emphasis be and supported by secondary and tertiary placed on prevention and early identification of medical services.” developmental disabilities within the primary and maternal and child health care systems. Those Committee on Nervous System Disorders systems must in turn be linked to and supported in Developing Countries, 2001 by secondary and tertiary medical services.” All levels of services should also be linked to dis- ciplines that can create the knowledge base for other than IMCI (WHO, 2001c). WHO has also the incorporation of child development concepts incorporated child development messages in the within health systems. Developmental–behav- training materials for the newly launched WHO ioural paediatrics has for decades pioneered the growth standards (Borghi et al., 2006; de Onis et introduction of concepts of child development al., 2007). WHO and UNICEF are continuing to within health systems (Friedman, 1970, 1975; work on incorporating a developmental approach Haggerty & Friedman, 2003; Richmond 1967; in primary health care. Shonkoff & Kennell, 1992; Shonkoff, 1993; Ven- Because of the small amount of research on ter, 1997b; Shonkoff & Phillips, 2000; Shonkoff feasible models in developing countries, there & Meisels, 2003; Shonkoff, 2006). This field has is limited information on what needs to be done been cross-fertilized by paediatrics, child psychol- to integrate these actions and interventions into ogy, child development, early intervention and health providers’ practices, and whether they are other related disciplines, and thus combines the effective. Studies from Brazil (Figueiras et al., disciplines of paediatrics, child health and child 2003), India (Bhatia & Joseph, 2000; Kalra, Seth development. The exact number and distribution & Sapra, 2005), Singapore (Lian et al., 2003) of developmental–behavioural paediatricians and Turkey (Ertem et al., 2009) have highlighted around the world is unknown. In the DDEC deficits in the knowledge of primary health care Survey, 55% of respondents identified themselves providers in this area. Three studies from devel- as developmental–behavioural or developmental oping countries have shown promising results paediatricians. In some countries, such as Tur- in training clinicians to address specific areas key and India, small-scale training programmes including identification of developmental dis- have been started, to establish tertiary centres to abilities (Mathur et al., 1995; Wirz et al., 2005), train further leaders. There is an urgent need to promotion of parenting skills and psychosocial promote developmental–behavioural paediatrics stimulation (Powell et al., 2004), and counsel- internationally, to develop training programmes ling caregivers on promoting child development for paediatricians, and to share information during visits for acute minor illness (Ertem et al., between clinicians, academicians, and researchers 2006). These studies, however, provide limited around the world. 12
  • CHAPTER 2. EARLY CHILDHOOD DEVELOPMENT AND HEALTH CARE SYSTEMSConclusions and implications 4. A roadmap is needed for health care systems infor action LAMI countries to guide their efforts to address child development. There is a wealth of infor-1. The development of the cognitive, social- mation, from high-income countries as well as emotional, language and movement functions from the LAMI countries themselves, regarding of the young child is influenced by the bio- the development of young children. On this logical endowment and health of the child, as basis, countries should be able to develop and well as by the relationships with the primary adopt cost-effective, sustainable interventions caregivers, family, and support systems in to address the development of young children the community. The early years of life are a through the health care system. period of maximal growth and development of the human brain and are therefore extremely 5. The lack of availability of continuous care, important in determining whether the person inadequate training and experience of health reaches his or her full potential. care providers and insufficient secondary- and tertiary-level health centres that can provide2. In most countries, the health care system is the support to primary health care workers in deal- only system that has the potential to reach all ing with developmental difficulties appear to young children and their families. It therefore be major barriers. provides an excellent opportunity to address child development as well as physical health – 6. There is a need for training of subspecialists in two inseparable aspects of the well-being and LAMI countries in developmental–behavioural productivity of the child and later adult. paediatrics and allied disciplines, so that they can then train front-line primary health care3. There is an unacceptable disparity between providers in concepts related to child develop- high-income and low- and middle-income ment and related difficulties. countries with respect to the range of supports provided to optimize child development and 7. Research and evidence on sustainable models prevent and manage developmental risks and and programmes that address child develop- difficulties. ment and developmental difficulties in LAMI countries are greatly needed. 13
  • 3 Chapter Epidemiology of developmental difficulties in young children determining the incidence of developmental dif- DDEC Survey results ficulties in children is difficult, because the onset The DDEC Survey included one question is often insidious and the disorder becomes rec- (see Annex 1, question 13) about the ognizable only later. Furthermore, true incidence epidemiology of developmental difficulties can rarely be determined, as only a minority of the in young children. In 25 countries (81%), severe forms of developmental difficulty survive there had been no epidemiological studies long enough to be identified (Hook, 1982). in the past ten years that provided specific In high-income countries, epidemiological information on children aged 0–36 months studies have generally relied on cross-sectional with developmental difficulties. In the six methods and service registries to measure preva- countries (19%) where there had been such lence. In the United States, one study showed that surveys, the prevalence of developmental 13% of children aged 3–17 years had a devel- difficulties in young children ranged from opmental disability (Boulet, Boyle & Schieve, 5% to 12%. 2009). Previously, a national survey in 1988 found that 17% of children aged 0–17 years had had a developmental disability (Boyle, Decoufle & Yeargin-Allsopp, 1994). In LAMI countries, where registries are often not available, information onPurpose of chapter and additional the prevalence of developmental difficulties andkey references their impact is insufficient and often unreliable. A recent review by Maulik & Darmstadt (2007)E pidemiological information about a disease or disorder is crucial to determine the needfor services. This chapter provides a framework found that most studies of developmental disabili- ties in children in developing countries that havefor understanding the epidemiology of develop- been published in peer-reviewed journals weremental difficulties in young children by reviewing concerned with the epidemiology of the disorders.the existing evidence. There has been very little Nevertheless, it remains difficult to ascertain thespecific research on the epidemiology of develop- prevalence of developmental difficulties in youngmental difficulties in children aged 3 years and children in LAMI countries for three reasons:under. Key resources include Durkin et al. (2006), a) the studies conducted did not meet appropriatethe Committee on Nervous System Disorders in quality standards;Developing Countries (2001), Maulik & Darm- b) they used different definitions of developmen-stadt (2007), and the Lancet series on disability tal difficulties;(Gottlieb et al., 2009). c) they used different instruments to detect devel-Conceptualization opmental difficulties.Epidemiological studies use two parameters toreport on the occurrence of a disorder in a given Summary of research frompopulation: incidence and prevalence. Incidence LAMI countriesis the frequency of newly occurring cases each Survey tools that aim to determine the prevalenceyear, while prevalence is the number of cases in of developmental difficulties in resource-poora population at a point in time. Because incidence countries, such as the WHO tool for neurologi-rates are independent of survival rates, they cal impairments (Mung’ala-Odera & Newton,provide more information on etiology. However, 2007) and the “Ten Questions Questionnaire” 14
  • CHAPTER 3. EPIDEMIOLOGY OF DEVELOPMENTAL DIFFICULTIES IN YOUNG CHILDREN(Durkin, Hasan & Hasan, 1995; Gottlieb et al.,2009; Mung’ala-Odera et al., 2004; Thorburn etal., 1992) have been adapted from adult ques-tionnaires and have been shown to identifyonly children with severe disabilities (Mung’ala-Odera & Newton, 2007). The true prevalence ofdevelopmental difficulties in children aged 0–3years is unknown. In the recent Lancet series ondisability, Gottlieb et al. (2009) determined thepercentage of children screening positive for, orat risk of, disability in Multiple Indicator ClusterSurveys (MICSs) carried out in 18 countries in2005–2006. The MICS used the “ten questions”screen to identify disability in household surveys.The analysis found that a median 23% (range3–48%) of children aged 2–9 years screened posi-tive for disability (Gottlieb et al., 2009). Apart from household surveys, studies in LAMIcountries to determine rates of developmental dif-ficulties have used rural participatory appraisal(Gona, Hartley & Newton, 2006; Kuruvilla &Joseph, 1999), key informant method (Muhitet al., 2007) and identification of disability byschoolchildren (Saeed et al., 1999). The “TenQuestions Questionnaire” was not designed todetect children with mild to moderate difficulties, Developmental difficulties are common in early childhood: child and caregiver during early intervention,such as social and emotional problems but rather, India. Photo: Dr. Vibha Krishnamurthyit focuses on more obvious signs of disability, par-ticularly in older children including hearing andvisual impairments. Some authors have specu- Disorders in Developing Countries, 2001; Durkinlated that, while the overall prevalence of dis- et al., 2006; Grantham-McGregor et al., 2007).ability in LAMI countries has remained constant Rates of developmental difficulties in youngover the past ten years, there has been a shift from children published in peer-reviewed journals havemore severe disabilities to milder problems related been inconsistent, ranging from a low of 3.5%to cognitive impairment, behavioural problems, in Ethiopia to a high of 24% in Brazil, mainlyhearing and communication impairments (Khan because of differences in definitions (Abiodun,et al., 2006). The commonly used screening tools 1993; Ashenafi et al., 2000; Al-Hazmy, Al Sweilanmay not adequately detect these difficulties. & Al-Moussa, 2004; Anselmi et al., 2004; Bendel Despite the lack of conclusive information on et al., 1989; Diop et al., 1982; Eapen, Zoubeidi &the prevalence of developmental difficulties in Yunis, 2004; Srinath et al., 2005; Yaqoob et al.,LAMI countries, it is known that these disor- 2004) (Table 1). In most of the studies, however,ders constitute a great proportion of childhood one would expect that the prevalence rates wouldmorbidity and are a public health problem in all be higher. One explanation for the low prevalencecountries (Mung’ala-Odera & Newton, 2007). In rates found is that most of the studies relied onthe United States, it is estimated that 10–20% of caregiver reports of disability and question-children have developmental difficulties (Benedict naires such as the “ten question” screen, which& Farel, 2003; Boyle, Decoufle & Yeargin-Allsopp, were designed to detect severe disability in older1994). Because LAMI countries have higher rates children. Fear of stigmatization, lack of trust inof risk factors that affect young children’s develop- treatment or interventions, and uncertainty aboutment, such as poverty, malnutrition and related what constitutes normal development may havedeficiencies, intrauterine growth retardation, led caregivers to underestimate the developmentalchronic illness and deficiencies in psychosocial difficulties.stimulation, the prevalence of developmental dif- The first comprehensive nationwide prevalenceficulties is almost certainly higher than in high- study in Israel showed a prevalence of chronicincome countries (Committee on Nervous System conditions and illnesses causing disability of 15
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD Table 1. Epidemiology of developmental difficulties Country Age Prevalence Definition of developmental difficulty (author, year) Number (years) (%) used in study Brazil (Anselmi et al., 2004) 624 2–3 24 Behavioural problem Senegal (Diop et al., 1982) 545 5–15 17 Emotional/mental health problem Nigeria (Abiodun, 1993) 500 5–15 15 Psychiatric morbidity ICD-10 diagnosis of mental or psychiatric India (Srinath et al., 2005) 2 064 0–16 12.5 disorder United Arab Emirates 694 2–3 10 Language delays (Eapen, Zoubeidi & Yunis, 2004) Israel (Bendel et al., 1989) 9 854 2–3 8.9 Developmental delay/disability Saudi Arabia (Al-Hazmy, Al 60 630 0–16 6.3 Disability Sweilan & Al-Moussa, 2004) Pakistan (Yaqoob et al., 2004) 1 476 12 6.2 Mild mental retardation Vision, mental, hearing, language, psychiatric China (Sun et al., 2003) 78 000 0-7 5.6 and motor Saudi Arabia (Milaat et al., 2001) 3 733 0–15 3.7 Wide range of disability Ethiopia (Ashenafi et al., 2001) 1 477 0–15 3.5 Mental/behavioural problem 8.9% in approximately 10 000 Israeli Jewish Child Behavior Checklist (CBCL) for ages 2–3 children aged 2–3 years (Bendel et al., 1989). A in the United Arab Emirates was 10% (Eapen, population-based survey of childhood disability Zoubeidi & Yunis, 2004). In an epidemiological in Saudi Arabia, using the “ten questions” tool survey in Bangalore, India, the prevalence of men- (Milaat et al., 2001), found a prevalence of 3.7%. tal and psychiatric disorders among 0–16-year- In China, approximately 78 000 children aged old children was found to be 12.5%. The rate 0–7 years were tested to determine the prevalence among children aged 3 years and under was of vision, mental, hearing, language, psychiatric 13.8%, with breath-holding spells, pica, behav- and motor problems. The prevalence of all dis- iour disorders, expressive language disorder and abilities was found to be 5.6 per 1000; mental mental retardation the most common diagnoses disorders and language problems had the high- (Srinath et al., 2005). In a UNICEF-supported est prevalence (1.88 per 1000) (Sun et al., 2003). study in Pattanakkad rural block, Kerala, India, An epidemiological survey covering all regions the prevalence of development delay, deformity, of Saudi Arabia included 60 630 children under and disability among children aged 5 years and 16 years of age; the prevalence of “handicap” was under was reported as 2.5%; the prevalence of 6.3% (Al-Hazmy, Al Sweilan & Al-Moussa, 2004). developmental disabilities up to 2 years of age The prevalence of mild intellectual disability in was found to be 2.3% (Nair et al., 2009). Interest- Lahore, Pakistan, was found to be 6.2% (Yaqoob ingly, in the same study, the prevalence of speech et al., 2004). The prevalence of behavioural prob- and language-related difficulties in children was lems in 3-year-old children screened with the found to be 29.8%. In rural Nepal, the population prevalence of disability was reported to be 0.95% (Sauvey et al., 2005). In summary, the prevelance rates of devel- Because of the considerably higher rates opmental difficulties in young children differ of risks for child development, the Disease Control between studies, mainly as a result of differencesPriorities in Developing Countries Project concluded in research methodology and definitions of dis- that significantly more children in LAMI countries ability. Because of the considerably higher rates will experience developmental difficulties than of risks for child development, the Disease Con- in high-income countries. trol Priorities in Developing Countries Project concluded that significantly more children in 16
  • CHAPTER 3. EPIDEMIOLOGY OF DEVELOPMENTAL DIFFICULTIES IN YOUNG CHILDRENLAMI countries will experience developmental 2. Research on the epidemiology of develop-difficulties than in high-income countries (Durkin mental difficulties in LAMI countries overet al., 2006). Given that 10–20% of children in the past 30 years has not provided conclusivehigh-income countries experience developmental evidence on the prevalence of developmentaldifficulties, the burden for children and families in difficulties. The research has been subject todeveloping countries can be appreciated. For this methodological flaws, including reportingreason developmental difficulties deserve serious bias and inconsistencies in the definition andattention as one of the disease control priorities detection of developmental difficulties.for developing countries. 3. It is recommended that international stand- ards and common approaches be formulatedConclusions and implications for definitions, population-based methods offor action detection of developmental difficulties, and the key research constituents to ensure the1. The prevalence of developmental difficulties production of scientifically valid evidence. during early childhood is high in all countries. Around the world, these conditions are more 4. Studies on prevalence are difficult to conduct common than any other chronic condition that in LAMI countries. There is already sufficient results in major morbidity across the lifespan. evidence that the prevalence of developmental In countries with a high prevalence of risk difficulties in young children is high enough factors that adversely affect early childhood to warrant widespread prevention and inter- development (such as malnutrition, infec- vention efforts in all countries. Provision of tious disease epidemics, iron deficiency and services to prevent and manage such difficul- low birth weight), the rates of developmental ties should not be constrained by lack of data difficulties can be expected to be high. Devel- on epidemiology. opmental difficulties should thus be a priority in LAMI countries. 17
  • 4 Chapter Developmental risks and protective factors in young children child development may also be risks to survival. DDEC Survey results A conceptual framework of risk and protec- Questions in the DDEC Survey that tive factors is important for addressing child pertained to risk factors requested development and developmental difficulties information on the proportion of health in health systems in LAMI countries. Without care providers likely to have experience such a framework, risk factors that affect child and training in identifying developmental development may be overlooked, together with risk factors in young children (see Annex the interventions to address them. This chapter 1, questions 4.1 and 4.2). In less than half summarizes concepts such as resilience, protec- of the countries (45%), most health care tive factors and risk factors, and introduces a new providers had some training and experience conceptualization related to developmental risks, in using interview and observational skills the “life cycle approach”. to identify biological risk factors, such as low birth weight. More strikingly, in only Resilience and protective factors 12% of the countries had most health care Many children who experience adverse condi- providers had training and experience in tions during their early years grow up to become using interview and observational skills to healthy and functioning adults. Rutter defines identify social and emotional risk factors, resilience as “an interactive concept that refers to such as maternal depression. a relative resistance to environmental risk expe- riences or the overcoming of stress or adversity” (Rutter, 2006). Resilience differs from general concepts of risk and protective factors, in that itPurpose and scope of chapter incorporates factors specific to each individualT his chapter introduces a conceptual frame- work for viewing the factors that impede orfacilitate child development. A comprehensive that enable him or her to overcome adversity. Studies on resilience date back to the 1960s, when Werner and colleagues started to follow theconsideration of each risk and protective factor entire birth cohort of 698 infants on the Hawai-is beyond the scope of this review. Emphasis ian island of Kauai (Werner, 1992). This study,is therefore given to risk factors that have not which lasted 30 years, demonstrated that childrenbeen reviewed in other documents, and readers exposed to risk factors (for example, prematureare referred to other key publications for further birth coupled with an unstable household and ainformation. mentally ill mother) experienced more problems with delinquency, mental and physical health, and family stability than children exposed to fewerConceptualization of risk and risk factors. However, many high-risk childrenprotective factors displayed resilience and developed into healthy,Until recently, in LAMI countries, interven- happy adults despite their problematic histories.tions to improve child survival took precedence Werner and colleagues identified protective fac-over those to address child development. Child tors that may have counterbalanced the risk fac-survival, physical health and development, tors. Important protective factors were a stronghowever, are inseparable components of well- bond with a caregiver other than the parents (suchbeing. Every condition that poses a risk for as an aunt, babysitter, or teacher) and involvementchild survival may also be a risk factor for child in a community group.development. Conversely, factors that threaten Since the Kauai study, research on resilience 18
  • CHAPTER 4. DEVELOPMENTAL RISKS AND PROTECTIVE FACTORS IN YOUNG CHILDREN has grown, providing an increased understanding health, and relational history, are direct proximal of child development that can directly influence predictors of resilience in children (Wyman et interventions. Research on child-related resil- al., 1999). ience factors has long included psychological, Resilience and protective factors are discussed behavioural and social aspects; more recently, at more length in a special volume of the Annals of with advances in neuroscience, neurobiologi- the New York Academy of Sciences (Lester, Masten cal mechanisms of resilience, including neural & McEwen, 2006). plasticity, neuroendocrinological pathways and gene–environment interplay, are also being Risk factors studied. New concepts, such as “maternal opti- mism” (Jones et al., 2002), are being added to Four different approaches have been used to more traditional caregiver-related concepts, conceptualize risk factors for development of such as maternal sensitivity and responsiveness young children. (Conway & McDonough, 2006). Environmental 1. A common approach has been to divide risk factors, such as poverty, are still key components factors into biological and psychosocial risks, of research on resilience. as was done in the Lancet series, “Child devel- Early experiences of stress and adversity may opment in developing countries” (Walker et affect neural structures, resulting in constrained al., 2007). While this approach is a major resilience (Rutter, 2006). Resilience is often advance on considering only biomedical risks, regarded as relating to innate qualities residing it is important to remember that risks often: in individuals. Examples of these qualities are (a) have both biomedical and psychosocial behavioural and emotional self-regulation, char- pathways; (b) occur together; and (c) must be acteristic of optimal mental health, and cognitive managed using interventions that include both self-regulation, characteristic of high intelligence. biological and psychosocial components. For Such qualities have been shown to contribute to example, iron deficiency has an adverse impact the mental health and academic achievement of on child development through a biological children. Nevertheless, research has also shown pathway (Lozoff & Georgieff, 2006; Lozoff, that these individual qualities may not suffice to Jimenez & Smith, 2006) and may be described overcome the effects of as a biological risk. The causes of iron defi- environmental chal- ciency, however, are embedded in psychosocial lenges, such as poor risks, such as poverty, maternal iron deficiency Early experiences of parenting, antisocial and low maternal intelligence and educationstress and adversity may peers, low-resource level (Wachs et al., 2005). Furthemore, iron affect neural structures, c o m mu n i t i e s , a n d deficiency negatively affects mother–child resulting in constrained economic hardship. interactions through a psychosocial pathway resilience. Resilience is For example, research (Corapci, Radan & Lozoff, 2006). Anotheroften regarded as relating on children who were example is maternal depression, which has to innate qualities adopted after living in been considered a psychosocial risk because residing in individuals. orphanages has shown of its effects on mother–child interactions that, although there is and child attachment patterns (Campbell et “catch up” in their cog- al., 2004; Cicchetti, Rogosch & Toth, 1998; nitive and social emotional development, those Currie & Rademacher, 2004). Research has adopted later had lower “catch up” (O’Connor also shown that children of mothers who are et al., 2000). Sameroff & Rosenblum (2006) depressed experience illness more frequently state that “the effects of single environmental than other children (Patel, DeSouza & Rod- challenges become very large when accumu- rigues, 2003; Rahman et al., 2004a). Thus, a lated into multiple risk scores, even affecting the psychosocial risk factor may have a biomedical development of offspring in the next generation”. pathway as well as a psychosocial one. Biologi- Research also indicates that child and family cal and psychosocial risks often occur together. protective factors in early childhood are signifi- For example, children born prematurely (bio- cantly associated with positive adjustment in logical risk) are often born to mothers with low later years (Vanderbilt-Adriance & Shaw, 2006). education levels, living in poverty (psychoso- The characteristics of a child’s caregiving system, cial risks). This phenomenon has been referred emotionally responsive, competent parenting, and to as the “double jeopardy” (Parker, Greer & caregiver resources, such as education, mental Zuckerman, 1988). An individual child may 19
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD have a number of risk factors at a given point usually structured in this way. Neither the DC in time or may encounter multiple risk factors 0-3 R nor the Bright Futures guidelines con- over the course of his or her development. In sider conditions that are specifically important both situations, the effects are cumulative and in LAMI countries, or provide a framework for detrimental to the development of the child. addressing these conditions.2. A second approach to risk factors is categori- cal; this is exemplified in the Disease Control The life cycle approach to Priorities Project (DCPP) in Developing Coun- developmental risk factors tries (Jamison et al., 2006), in which risks for learning and developmental disabilities were We present here a novel conceptual framework categorized as: genetic; multifactorial (e.g. for developmental risk factors, which can be used genetic and nutritional, such as neural tube to guide the efforts of LAMI countries to prevent defects); nutritional; infections; toxic expo- and manage developmental difficulties. The life sures; maternal disorders; perinatal complica- cycle approach provides a mapping of risk factors tions (such as brain injuries associated with in chronological order, from before conception to premature birth or birth asphyxia); injuries; adulthood, parenthood and the next generation. economic disadvantage; social and cognitive This approach is analogous with – but more com- deprivation; and unknown causes. This catego- prehensive than – the approach used in the WHO rization is useful as a way of viewing potential document, Mental retardation: from knowledge to causes of developmental difficulties, but does action (WHO, 2006b). not provide a framework for recognizing when The life cycle approach embodies four key risk factors co-occur and when to intervene. concepts: Also, risk factors that fall outside of the speci- 1. Risk and protective factors coexist throughout fied categories, such as unintended pregnancy the lifespan, respectively impairing or helping and adolescent parenting, may be overlooked. children to develop to their full potential.3. The Diagnostic Classification of Mental Health 2. Factors that place children’s survival at risk are and Developmental Disorders of Infancy and Early also often risks for suboptimal development. Childhood Revised Edition (DC 0-3R) (Zero to Three, 2005) provides yet another conceptu- 3. Often risks do not occur in isolation but alization of developmental risks. In the DC together. The cumulative number, duration 0-3 R, which is described in detail in Chapter and severity of risk factors, and the adequacy 8, risk factors are referred to as “psychosocial of protective factors, determine the ultimate and environmental stressors”. It is emphasized impact of risk factors. that four components determine the impact of 4. Risks affect development through multiple any risk: (a) the severity; (b) the duration; (c) complex pathways, and categorizations, such the developmental level of the child when he or as biological and psychosocial, or nutritional, she is exposed to the risk; and (d) the coping genetic and infectious, have limited use. Inter- ability and capacity of the caregivers. While ventions to address risks must be informed by the list of stressors (risk factors) is exhaustive, the multifaceted complex nature of risk and it is designed for clinical purposes to assess protective factors. individual children and may not be appropriate The life-cycle approach comprises the backbone for the design of interventions in developing for conceptualization of the prevention of devel- countries. opmental difficulties, as outlined in Chapter 5.4. A comprehensive overview of risk factors for The life-cycle approach is depicted in Figure 2 child development can be found in the Bright (Ertem, 2011). In this framework, developmental Futures guidelines (Council on Children risks are presented in order of appearance and with Disabilities, 2006). In this document, significance within the life-cycle. There are life- risk factors are grouped on the basis of the long risks, which can appear at any time of the transactional model, i.e. risks related to the life-cycle. These are shown at the centre of the child, family and community. Again, while this schema and include physical and mental health framework may be useful at an individual level, problems of the caregivers, deficiencies in the psy- health systems in developing countries may chosocial and educational environment, exposure find it difficult to use, as programmes are not to substances and toxins, and exposure to vio- 20
  • CHAPTER 4. DEVELOPMENTAL RISKS AND PROTECTIVE FACTORS IN YOUNG CHILDRENFigure 2. The life-cycle approach to developmental nutrition, housing, environmental risk factors (reproduced from Ertem, 2011) hygiene, living-wage jobs, gender equal- ity, child care and school facilities) SPECIFIC RISKS and physical and mental health prob- A GE - lems of the caregiver can affect child ti o n PRECONCEPTIONAL ̈ Unwanted pregnancy development from before conception ra en e ̈ Inadequate child spacing ̈ Adolescent pregnancy into the early years of life and beyond. Preventive efforts should be targeted to g ̈ Consanguinity xt Ne the entire lifespan. Time-specific risk - L O N G R IS K S factors are listed in Figure 3 accordingADOLESCENCE L IF E PRENATAL/̈ Family/peer/ PERINATAL school problems ̈ Inadequate to the period during which they can̈ Developmental– ̈ Problems in physical/ prenatal care behavioural mental health of ̈ High risk be targeted. For example in order to problems child/family pregnancy, higḧ Substance abuse risk newborn prevent the negative effects of consan-̈ Early sexual ̈ Deficiencies in ̈ Inadequate activity psychosocial/educational adaptation to guinity between parents, interventions̈ Risk-taking environment pregnancy or behaviour newborn must be made before conception. ̈ Exposure to ̈ Perinatal maternal substances/toxins mortality ̈ Exposure to violence/ abuse/neglected Summary of research from SCHOOL AGE LAMI countries ̈ Family/peer/school INFANCY/EARLY CHILDHOOD problems ̈ Inadequacies of schools/ ̈ Inadequacies in nurturing and stimulating qualities of Resilience and protective factors teachers ̈ Developmental– caregiving environment ̈ Developmental– in young children behavioural problems behavioural problems ̈ Risk-taking behaviour ̈ Risk-taking behaviour There is a need for research on the concept of resilience and developmental protective factors in LAMI countries. One exemplary study of resilience has been carried out in a rural communitylence, abuse or neglect. There are also age-specific in India. This study examined the effects of mater-risks, which can appear at specific periods in life: nal child-rearing behaviour, parental attributes,preconception, prenatal/perinatal, infancy/early and socioeconomic status and their associationchildhood, school age and adolescence. with “positive deviance” in the development of Figure 3 shows specific risks that may affect preschool children (Aruna, Vazir & Vidyasagar,development of children up to the age of 3 years. 2001). Children whose mothers were responsiveDeficiencies in the social environment (e.g. in to their needs, consistent in their interactionsFigure 3. Specific risks that can affect children up to 3 years of age Preconceptional Prenatal/perinatal Newborn First years of life Problems/ deficiencies Maternal mortality Inadequate caregiver– Lack of appropriate child in maternal health and Perinatal asphyxia newborn relationship and care nutrition interactions Child health problems/ Low birth weight Inadequate child spacing Neonatal infections, chronic illness Prematurity Unwanted pregnancy complications Inadequacies in nurturing and Perinatal complications, Parental consanguinity Developmental/sensory stimulating qualities of the infections impairments environment Iron deficiency Congenital chromosomal Iodine deficiency abnormalities Malnutrition Micronutrient deficiencies Exposure to environmental toxins Problems in caregiver physical and mental health Deficiencies in the social and economic environment: nutrition, housing, environmental hygiene, living-wage jobs, gender equality, caregiver education, child care, preschool opportunities, schools, access to public and private goods and services, health care, exposure to violence/war. 21
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOODwith them and emotionally stable during specific (b) Maternal physical health. A recent review forsituations were found to be “positive deviant” WHO (Hutton, 2006) highlighted the extent to(resilient) in their development. Other factors that which maternal and newborn ill-health generatewere significantly associated with positive devi- additional risks for individuals and families andance were paternal literacy and a nuclear family. the role that this plays in the vicious cycle of underdevelopment and poverty.Risk factors in young children (c) Caregiver mental health. There is convinc-There has been a much larger volume of research ing and growing evidence that caregiver mentalin developing countries on developmental risk health problems, in particular depression, that arefactors. This research is presented here in the related to developmental difficulties in childrenlife-cycle framework. often begin before conception and continue dur- ing the early years. Readers are referred to semi-1. The preconceptional period nal research by Rahman and Patel related to theThis period spans the life of the parents before effects of maternal mental health on child healththe conception of the child. The transition from and development (Patel, DeSouza & Rodrigues,adolescence to adulthood for both prospective 2003; Patel & Prince, 2006; Patel, 2007; Rahmanparents is a critical period. Factors detrimental et al., 2004a, 2004b, 2007, 2008) as well as twoto the physical and mental health of the parents recent Lancet series on mental health (Bhugra &and their parenting role are potential risk factors Minas, 2007; Barret, 2007; Dhanda, 2007; Her-for early childhood development. It is difficult rman & Swartz, 2007; Horton, 2007; Katonka,to study the effect on child development of risks 2007; Miller, 2007; Sartorius, 2007) and earlyduring this period alone because these risks childhood development (Walker et al., 2007).often continue during the prenatal and postnatal (d) Parental consanguinity. In many parts of theperiod. The challenges related to this period, developing world, marriages between close bio-specifically for young people living in developing logical kin are preferred and may account for 50%countries, have been reviewed by the US National of all marriages in certain populations (www.con-Research Council (Lloyd, 2005). sang.net). Scientific evidence for the effect of con- Social determinants of health and maternal sanguinity on children’s cognitive developmentphysical and mental health are risk factors that dates back to the 1970s (Bashi, 1977). Offspringhave been reviewed elsewhere; they are therefore of consanguineous parents are over-representednot discussed in detail here. There have, however, among individuals with neurodegenerative dis-been no reviews of the literature on parental orders (Ozand, Devol & Generoso, 1992), inbornconsanguinity, adolescent parenting, unintended errors of metabolism (Kabiri, 1982; Ozguc et al.,pregnancy and child spacing with particular 1993), congenital hypothyroidism (Hashemipouremphasis on developing countries; research on et al., 2007; Karamizadeh & Amrihakimi, 1992),these risk factors is therefore covered in more severe mental retardation (Afzal, 1988; Bashi,detail below. 1977; Hafez et al., 1985), blindness (Elder &(a) Social determinants of health. A thorough De Cock, 1993), and hearing impairment (Benreview of the effects on child development of Arab, Bonaiti-Pellie & Belkahia, 1990; Kabaritythe social determinants of health was commis- et al., 1981).sioned by WHO (Irwin, Siddiqi & Hertzman, Studies from around the world have shown a2007). This document summarized the evidence significantly higher incidence of major congenitalfor the effects on child development of social malformations in offspring of consanguineousdeterminants, such as poverty and low maternal parents (Freire-Maia & Elisbao, 1984; Jabereducation. It explored the role of risk factors that et al., 1992; Khrouf et al., 1986). Most of thestart before conception and continue across the research on consanguinity comes from develop-lifespan. Factors close to the child, including qual- ing countries, and epidemiological informationity of parenting skills, early stimulation and the on consanguineous marriage and its outcomes isdetrimental effects of being orphaned, as well as sparse, unavailable or inadequate. In a study offactors that are more distant, such as gender-based 1000 pregnant women in Pondicherry, India, 31%discrimination; alcohol and substance abuse in were in a consanguineous marriage, with a higherthe family, dwelling conditions, forced labour, frequency among those from rural areas andwar and famine, are also considered. Hindus (Verma, Prema & Puri, 1992). This study reported significantly higher infant mortality and 22
  • CHAPTER 4. DEVELOPMENTAL RISKS AND PROTECTIVE FACTORS IN YOUNG CHILDRENfetal death in consanguineous marriages. On the light on interventions related to premarital geneticother hand, surveys in Saudi Arabia (Swailem et counseling that can be targeted to address consan-al., 1988) and Pakistan (Yaqoob et al., 1993) were guineous marriages, with subsequent reduction ofunable to detect significantly higher rates of mor- recessively inherited disorders in the population.tality or birth defects. It is important to recognize Current evidence points to the need to informthat, in most countries where consanguineous populations about the risk of consanguineousmarriages are common, epidemiological studies parenting for child development.are difficult to conduct, congenital disorders may (e) Adolescent parenting. Adolescent parent-not be correctly diagnosed, and differentiation ing is an important risk factor for the survival,between genetic and non-genetic determinants health and development of both children andof morbidity may be overlooked. their mothers in all countries. A review of the Studies in developed countries have found effects of adolescent parenting on maternal anddirect associations between parental consanguin- child health, with particular attention to LAMIity and childhood developmental difficulties. In countries, has been produced by WHO (Treffers,Pakistani immigrants in the United Kingdom, 2002). Another WHO document (Khan, 2004)50–55% of marriages are between first cous- reviewed the major factors affecting pregnancyins (Darr & Modell, 1988). The perinatal mor- outcome among adolecents, socioeconomic bar-tality in this community in 1988 (15.7 per 1000 riers to adolescent health care and programmesbirths) significantly exceeded that in all other that have been effective in improving pregnancypopulation groups of the United Kingdom, and outcome. A more recent WHO publication onwas consistent across all socioeconomic classes. adolescent pregnancy aims to draw the attentionCongenital anomalies accounted for 41% of all of policy makers and programme managers to theinfant deaths among British Pakistanis during the need to improve care for pregnant adolescents,period 1982–85. In another multi-ethnic prospec- both inside and outside the health care systemtive study, serious malformations were diagnosed (McIntyre, 2006).in 28.2 per 1000 British-Pakistani babies. Chronic There has been abundant research in devel-disorders, many with a recessive mode of inherit- oped countries on the specific effects of adoles-ance, were diagnosed in 41.5 per 1000 of those cent parenting on early childhood development.surviving the first month of life (Bundey & Alam, Research in the 1970s and 1980s indicated that1993; Chitty & Winter, 1989). children of adolescent parents were at a slightly More recent studies from the United Kingdom increased risk of abuse, but sound empiricaldraw attention to the continued relationship data for “suboptimal intellectual development”between developmental difficulties and consan- were lacking (Elster, McAnarney & Lamb, 1983;guinity. A study in the northern English city of Roosa, Fitzgerald & Carlson, 1982). Later stud-Bradford showed a relationship between severe ies identified numerous challenges for adolescentdisorders, including neurodegenerative disorders, mothers and their children. Adolescent mothersmicrocephaly and cerebral palsy, and Pakistani have been found to have high rates of depressionimmigrants with consanguinity (Corry, 2002). In (Colletta, 1983; Leadbeater, Bishop & Raver,a study in southern Derbyshire, Pakistani children 1986; McHenry et al., 1990; Wasserman et al.,were found to have a higher prevalence of severe 1990). Children of adolescent mothers are atlearning disorder, profound hearing loss, severe higher risk of being maltreated (George & Lee,visual problems, autism and cerebral palsy, and 1997; Haskett, Johnson & Miller, 1994; Siegelhigher disability scores than other groups (Morton et al., 1996; Stier et al., 1993) and of havinget al., 2002). Genetic disease causing disability developmental and behavioural problems (Coleywas ten times more common in Pakistani children & Chase-Lansdale, 1998; Furstenburg, Brooks-than other immigrant groups. Studies on Arab Gunn & Morgan, 1987; Hubbs-Tait et al., 1994;populations in Israel have found an association Lyons-Ruth & Block,1996; Miller & Moore, 1990).between parental consanguinity and congenital A review examining the link between adolescentmalformations (Bromiker et al., 2004) and child- parenting and developmental delays among thehood reading disability (Abu Rabia & Maroun, offspring outlined a number of possible causes2005). for this association (Borkowski et al., 1992). Most It is possible to prevent morbidity related to importantly, the mother–child relationship mayconsanguineous marriages. Research on thalas- be impaired, as adolescent mothers are less likelysaemia control in Cyprus (Angastiniotis & Had- to have the support of a social network, mayjiminas, 1981; Kuliev, 1986) for example, shed be unprepared cognitively and emotionally to 23
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOODassume responsibility for child-rearing, and may poor mothers, adolescent childbearing washave had the baby in an attempt to meet their associated with higher maternal fertility, lowerown needs for nurturing. As a result, the parent- monthly earnings, lack of financial support, anding style of adolescents may deprive the child of grandparents taking responsibility for child care.appropriate nurturing and stimulation, which The nutritional status of the children was inves-could be detrimental to the child’s development. tigated 4–10 years after their birth: significantlyOther adversities associated with adolescent par- more first-born children of adolescent mothersenting, such as poverty, can also have a negative had a height-for-age below the norm, comparedimpact on child development. Furthermore, in with children of older mothers. Children ofLAMI countries, adolescent pregnancy is more adolescent mothers also had lower scores on afrequently associated with preterm and low birth language-development test and their mothersweight infants (McIntyre, 2006), which in turn more frequently reported behavioural problemsmay be responsible for increased developmental (Buvinic, 1998). These negative findings wererisk for the offspring. In a study in Delhi, India, true only for adolescent mothers living in poverty.complications of pregnancy, such as abnormal Most adolescent pregnancies in high-incomepresentation and prolonged labour, were more countries lead to single parenting, whereas adoles-common among adolescents. In this study, the cent mothers in LAMI countries are often marriedrates of miscarriages and stillbirths were reported and have a different social status than those into be 17.5% and 3.5% among adolescents and industrialized countries. The effects of adolescentadults, respectively (Sharma et al., 2003). parenting on child development, therefore, may Many adolescent mothers live with their own be different between countries at different levelsparents. In a study examining the effects of adoles- of development and between impoverished andcent parenting in this situation, Black et al. (2002) wealthier populations. Evidence suggests, never-found that living in a three-generation household theless, that adolescent pregnancy is a major riskdid not protect young children from the effects of factor for the survival, health and development ofdepression and maltreatment (Black et al., 2002). the mother and child.Children with the fewest behavioural problemswere living with their own mother in their own (f ) Unintended pregnancies. Studies of thehousehold and had not been maltreated, and their relationship between pregnancy intention andmothers had fewer symptoms of depression. birth, maternal and child health, and develop- There has been little research on the effects ment outcomes have been conducted largely inof adolescent fathering on child development. developed countries. These studies date backStudies in the United States have shown that to the 1980s, but they are few in number. Threehaving a child is a major stress factor for teenage studies used data from the United States Nationalmales. However, when teenage fathers take part Longitudinal Survey of Youth. The first studyin child-rearing and the mothers have a positive involved 1327 children under two years of ageperception of the father’s support, the children and their mothers (Baydar, 1995). Pregnanciestend to have better cognitive ability and behaviour that were mistimed or unwanted were associatedthan those without such paternal support (Barret with lower scores on scales measuring parental& Robinson, 1990). provision of opportunity for children’s skill Most adolescent pregnancies occur in LAMI development and non-authoritarian parentingcountries, where they are a leading cause of mater- style. During the assessments two years later,nal death (Mayor, 2004). For example, girls in children were found to have a significantly lesssouthern Sudan are more likely to die in childbirth positive relationship with their mother. Childrenthan to complete primary school (Moszynski, born from an unwanted or mistimed pregnancy2004). Research on the effects of adolescent par- had higher mean scores for fearfulness and lowerenting on the developmental outcome of children scores for positive affect and receptive languagein LAMI countries, however, is extremely limited. than wanted infants. In an Inter-American Development Bank Pro- Joyce, Kaestner & Korenman (2000) analysedject, Buvinic (1998) reviewed studies from Chile the same data set using information on siblings(Buvinic, 1998), Barbados (Russell-Brown, Engle to control for confounding family variables that& Townsend, 1992), Guatemala (Engle, 1993; may affect child outcomes. They found no sig-Engle & Smidt, 1996) and Mexico (Rico & Atkin, nificant differences in maternal behaviour or1995) to identify the consequences of adolescent child outcomes between mistimed and wantedchildbearing. The findings showed that, among pregnancies. Unwanted pregnancy, however, 24
  • CHAPTER 4. DEVELOPMENTAL RISKS AND PROTECTIVE FACTORS IN YOUNG CHILDRENwas associated with prenatal and postpartummaternal behaviour that adversely affected infantand child health. In the same cohort, infantswhose conception was intended by the motherbut not the father were also at elevated risk ofadverse health events (Korenman, Kaestner &Joyce, 2002). Mohllajee et al. (2007), in the United StatesCenters for Disease Control and Prevention, ana-lysed data from the population-based PregnancyRisk Assessment Monitoring System for 87 087women who gave birth between 1996 and 1999 in18 states. When controlled for demographic and Children develop within the context of their environment: village children, Turkey. Photo: Dr. Cuneyt Ensaribehavioural factors, the data showed that womenwith an unwanted pregnancy had an increased As can be seen from the reviewed literature,likelihood of preterm delivery and premature rup- there is relatively little evidence for the effectsture of membranes than women with an intended of unintended pregnancy on child development.pregnancy. Women who were ambivalent towards There is a large amount of information, however,their pregnancy had an increased risk of deliver- on the association between unintended pregnancying a low birth weight infant. and conditions that are proxy for developmental While most unintended pregnancies occur in difficulties in young children, such as malnutri-developing countries, few studies have addressed tion/stunting, maternal depression, inadequatethe effects of these pregnancies on child health child spacing, and poverty. Preventing unin-and development. In a study in the Islamic Repub- tended pregnancy, therefore, is likely to be anlic of Iran, unintended pregnancy was found to effective strategy for reducing developmentalbe a risk factor for antenatal and postpartum difficulties in children.depression (Iranfar et al., 2005). The authorscalled attention to the need for further research (g) Inadequate birth interval (child spacing).on the role of depression in mediating the effects Inadequate birth interval is a well known riskof unintended pregnancy. A study in Egypt found factor for child survival and health. Studies exam-that unintended pregnancy was a barrier to ante- ining the role of birth spacing on child develop-natal care but not to child health care (Youssef ment are relatively new. Hayes et al. (2006) inet al., 2002). the United States showed that children born A study in Bolivia examined the impact of after an inadequate birth interval (less than 24maternally and paternally reported pregnancy months) were more likely to fail cognitive skillsintention on the prevalence of early childhood assessment tests that predict school readiness.stunting. Data were collected from a nationally This remained true after correcting for variousrepresentative sample of women and men inter- sociodemographic factors.viewed in the 1998 Bolivian Demographic and In a cross-sectional study by Bella & Al-AlmaieHealth Survey. The sample was restricted to last- (2005) in eastern Saudi Arabia, the school per-born, singleton children younger than 36 months, formance of children was examined in relationfor whom complete anthropometric information to the length of the interval before and afterwas available. Children from unwanted and mis- their birth. Children born after a birth intervaltimed pregnancies comprised 33% and 21% of the longer than 31 months were significantly moresample, respectively. Approximately 29% of the likely to score high grades in the year of studymaternally unwanted children were stunted, com- and the year before than children born after anpared with 19% of mistimed and 19% of wanted interval of less than 17 months. Significantly morechildren. Children between 1 and 3 years of age children born before a birth interval longer thanfrom mistimed and unwanted pregnancies were at 35 months did better at school than those bornapproximately 30% greater risk of stunting than before an interval of less than 19 months. Logisticchildren from intended pregnancies. Infants and regression analysis showed that the possibility oftoddlers reported by both parents as unwanted classifying the index child’s school performancehad an increased risk of being stunted compared as average or above increased as the succeedingwith children both of whose parents intended the birth interval increased. The study found that thepregnancy (Shapiro-Mendoza et al., 2005). succeeding birth interval was more significant 25
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOODthan the preceding birth interval in relation to (VLBW) – defined as birth weight ≤ 1500 g –school performance. and more recently of those with extremely low In developing countries, inadequate birth birth weight (ELBW) ≤ 1000 g. Recent reviewsspacing is a risk factor for childhood survival and of developmental outcome have concluded thatalso indirectly affects child development through premature infants are at increased risk of devel-its association with increased risk of malnutri- opmental difficulties (Marlow, 2004). Thesetion. Rutstein (2005) examined the association include major sequelae, such as cerebral palsybetween birth interval, infant and child mortality, (Bhutta et al., 2002; Jongmans et al., 1997; Plattand nutritional status in a repeated analysis of et al., 2007), impaired vision due to retinopa-retrospective survey data from the Demographic thy of prematurity (Quiram & Capone, 2007),and Health Surveys (DHS) in 17 developing and hearing impairment (Ari-Even Roth et al.,countries between 1990 and 1997. For neonatal 2006), as well as difficulties involving cognitiveand infant mortality, the risk of dying decreased functions, learning and behaviour (Davis etwith increasing birth interval up to 36 months, al., 2005a; Hack et al.,1992; Msall & Tremont,after which the risk remained stable. For child 2002; O’Brien et al., 2004; Taylor et al., 1998;mortality, the longer the birth interval, the lower Volpe, 1997).the risk, even for intervals of 48 months or more. Although the overall survival of preterm infantsThere was a pattern of increasing chronic and in LAMI countries is still low, neonatal inten-general undernutrition as birth interval decreased sive care technology is advancing rapidly inin 14 countries. tertiary health care centres, and many VLBW Potential implications of such research for premature infants that have access to theseLAMI countries include the need to promote opti- facilities are surviving beyond the neonatalmal birth spacing to improve the likelihood that period (Atasay et al., 2003; Garg & Bolisetty,children will survive, grow well, come to school 2007; Trotman & Barton, 2005).ready to learn, and continue doing well in school. Over the past decade, a number of studies in2. The prenatal and perinatal period LAMI countries have been published on theAll of the risk factors that affect the preconcep- short-term developmental outcome of prema-tional period continue to pose risks during the ture infants. Examples include: South Africaprenatal period. Additionally, maternal ill-health, (Cooper & Sandler, 1997; Kirsten et al., 1995),including obstetric complications, nutritional Malaysia (Boo et al., 1996; Ho et al., 1999),deficiencies, intrauterine infections and prenatal Papua New Guinea (Brown, 1996), Chinaexposure to toxic substances may affect the devel- (Province of Taiwan) (Chang et al., 2000),opment of the central nervous system of the fetus Turkey (Atasay et al., 2003; Özbek et al., 2005),and constitute developmental risks (Committee Kenya (Were & Bwibo, 2006) and Bangladeshon Nervous System Disorders in Developing (Khan et al., 2006). All these studies wereCountries, 2001). Intrauterine growth retardation single-centre-based, had sample sizes rangingor low birth weight is an important risk factor from 25 to 162, and had large rates of attri-that can be prevented by interventions during tion in follow-up. Some studies demonstratedthe preconceptional and prenatal periods. This developmental morbidity similar to that seenrisk factor, which has a high prevalence in many in high-income countries in surviving pre-LAMI countries, has been reviewed in detail in a mature infants (Kirsten et al., 1995; Ho et al.,WHO/UNICEF document (UNICEF, 2004) and 1999), while others highlighted a higher ratein a Lancet series (Walker et al., 2007). of developmental morbidity (Were & Bwibo, Three perinatal risks that have not previ- 2006; Chang et al., 2000). In the most recentously been reviewed in detail in relation to child follow-up studies, in Kenya, at 24 months, 12%development in LAMI countries are considered of surviving VLBW infants had cerebral palsy,below: prematurity, birth asphyxia and maternal 9% had delayed cognitive skills and 26% hadmortality. functional disabilities. A follow-up study ina) Prematurity. Widespread application in high- Bangladesh of 159 newborns born before 33 income countries of advances in neonatalogy weeks gestational age showed that 32% had over the past few decades has led to the survival normal development while 45% had mild and of many preterm infants. Numerous studies 23% serious neurodevelopmental impairments. have been conducted in these countries to follow Cognitive impairment was the most common up premature infants with very low birth weight deficit (60%) (Khan et al., 2006). 26
  • CHAPTER 4. DEVELOPMENTAL RISKS AND PROTECTIVE FACTORS IN YOUNG CHILDREN Very few studies have been published on the ing from 4.6 per 1000 in Cape Town (Hall, long-term developmental outcome of premature Smith & Smith, 1996) to 26 per 1000 in Nige- infants in LAMI countries. The largest cohort ria (Kinoti, 1993); case–fatality rates may be was followed by Chaudhari et al. (2000) in 40% or higher (Bang & Bang, 1992). The effects Pune, India. Of the 404 high-risk newborns of birth asphyxia on the newborn range from initially enrolled, many with VLBW, 286 were none to severe organ failure and death. Accord- assessed at six years of age. Of these, 14.6% ing to WHO, between four and nine million showed borderline intelligence. At 12 years newborns experience birth asphyxia each of age, in the VLBW group, 15.4% were intel- year. Of these, an estimated 1.2 million die lectually disabled compared with 3.3% in the and at least the same number develop severe control group (Chaudhari et al., 2004). Given consequences, such that attrition was high in the VLBW group, as epilepsy, cerebral these rates are most likely underestimates. In palsy, and develop- In comparison the cohort of children with birth weight <2000 mental delay (Save with high-income g assessed at 12 years, parental education and the Children, 2001). countries, fewer the type of school attended by the child were The numbers of dis- premature or VLBW the most important factors influencing cogni- ability-adjusted life infants survive in tive development. The only biological factor of years (DALYs) lost LAMI countries, and a importance was birth weight, but this made a due to birth asphyx- larger proportion have very small contribution (Chaudhari et al., 2005). ia estimated by significant developmental WHO exceed those A multisite study from Lebanon reported on difficulties. In both due to all childhood 3372 neonates admitted to five National Col- high-income and LAMI conditions prevent- laborative Perinatal Neonatal Network Cen- countries, higher family able by immuniza- tres. In this study, admissions to the newborn income and education tion (WHO, 2003). intensive care unit (NICU) were associated mediate resilience in these However, because with both paternal and maternal education; high-risk children. community-based newborns of illiterate mothers had 3–5 times data on disability in the risk of NICU admission and prolonged LAMI countries are hospitalization (Yunis et al., 2003). This study rare and there are very few studies reliably highlights the fact that social determinants assessing the cause of disability, the impact of play a crucial role in biomedical risks. birth asphyxia on childhood and later adult In summary, in comparison with high-income disability is uncertain. countries, fewer premature or VLBW infants c) Maternal mortality. Maternal mortality is survive in LAMI countries, and a larger propor- defined by WHO as “the death of a woman tion have significant developmental difficulties. while pregnant or within 42 days of termina- In both high-income and LAMI countries, tion of pregnancy, irrespective of the duration higher family income and education mediate and site of the pregnancy, from any cause resilience in these high-risk children. Efforts related to or aggravated by the pregnancy or its to prevent premature birth and to improve the management, but not from accidental or inci- developmental outcome of prematurely born dental causes”. Maternal mortality continues infants are warranted in LAMI countries. to be the major cause of death among women of reproductive age in many countries. Yearly,b) Birth asphyxia. In a recent review, Azra Haider 0.36 million maternal deaths occur globally & Bhutta (2000) drew attention to the public (Nyamtema et al., 2011). Maternal death is well health problem of birth asphyxia in LAMI known to be associated with increased neona- countries. Birth asphyxia is responsible for tal, infant and childhood mortality (Anderson approximately 23% of all newborn deaths et al., 2007; Rajaram, 1990; Reyes Frausto et around the world (Lawn, Shibuya & Stein, al., 1998). Yet, there has been surprisingly little 2005). In industrialized countries, improve- research on the effects of maternal death on ments in primary and obstetric care have led to later child development, with the exception of a reduction in the incidence of newborn death death from HIV/AIDS. from birth asphyxia to less than 1 per 1000 births (Badawi et al., 1998). In LAMI countries, A study in Mexico examined the effects of rates of birth asphyxia are much higher, rang- maternal death on family dynamics and infant 27
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD survival. Family members were interviewed Africa (http://www.unicef.org/southafrica/ at the time of the death and a year later. The resources_2805.html). main consequences were found to be family ● The Lancet series on “Early childhood develop- disintegration, children in the family acquir- ment in developing countries” reviewed risk ing caregiving and income-generating roles, factors that: (a) can be addressed by interven- and economic problems. Children were often tions or public policy; (b) affect children from integrated in the grandparents’ family (Reyes before birth up to 5 years of age; and (c) affect Frausto et al., 1998). The high rates of prevent- large numbers of young children in developing able maternal mortality in LAMI countries countries (Walker et al., 2007). must be viewed as a major risk factor affecting child survival, health and early development. — ­ The biological risks reviewed were: intrau- terine growth retardation, undernutrition,3. Neonatal period. iodine deficiency, iron deficiency, breast-The concept of the “high-risk newborn” is long- feeding and zinc, infectious diseases, andstanding and refers to newborn infants that are environmental exposure (including to lead,at high risk for mortality and developmental arsenic, manganese and methylmercury,morbidity. There has been abundant research in and prenatal pesticide exposure,).developed countries on neonatal risk factors that — The psychosocial risks included were:affect child development, such as hyperbiliru- cognitive stimulation and child learningminaemia, hypoglycaemia, sepsis, intracranial opportunities, caregiver sensitivity andinfections, and cardiac and pulmonary problems. responsiveness, maternal depression, andA comprehensive and practical review of this exposure to violence.research has been prepared by Bear (2004). In LAMI countries, most risk factors that ● The relationship between mental healthhave an impact on neonatal survival also have and child health and development has beena potential impact on later development. Read- addressed in the recent Lancet series on mentalers are referred to the Lancet series on neonatal health (Bhugra & Minas, 2007; Barret, 2007;survival (Darmstadt et al., 2005; Lawn et al., Chisholm et al., 2007; Dhanda, 2007; Her-2005; Martines et al., 2005). WHO has produced rman & Swartz, 2007; Horton, 2007; Jacob eta useful guide to the management of neonatal al., 2007; Patel et al., 2007; Prince et al., 2007;complications that are common in LAMI countries Saraceno et al., 2007; Sartorius, 2007; Saxena(WHO, 1998a). et al., 2007).4. First three years of life. The above documents and their references provide a comprehensive overview of individual risk fac-A number of important documents have been pro- tors that play a role in early childhood develop-duced containing information on developmental ment. In this review, particular emphasis will berisk factors that need to be addressed during the given to research from LAMI countries that hasearly years: examined the role of multiple, co-occurring risk● A critical link reviews the link between malnu- and protective factors that affect the development trition and lack of psychosocial stimulation of young children. (WHO, 1999). (a) Risks associated with emotional and social● The importance of caregiver-child interactions for development and behavioural problems. Three the survival and healthy development of young studies in LAMI countries (Brazil, India and the children provides a comprehensive review of the United Arab Emirates) have demonstrated the role of caregiving in child health and develop- links between biopsychosocial risk factors and ment (Richter, 2004). emotional and social development. In an epidemiological study of 634 preschool● Early childhood development: A powerful equal- children followed from birth in Brazil, the izer reviews the social determinants of child prevalence of behavioural problems was 24%. development (Irwin, Siddiqi & Hertzman, Maternal psychiatric disorder, education, age, 2007). number of younger siblings and quality of the● On its web site, UNICEF provides a list of home environment explained 28% of the variance reviews related to the impact of HIV/AIDS on in behavioural problems (Anselmi et al., 2004). the development of young children in South In rural India, a study involving 3746 children 28
  • CHAPTER 4. DEVELOPMENTAL RISKS AND PROTECTIVE FACTORS IN YOUNG CHILDRENaged less than 6 years examined the environmen- sion analysis showed that the effect of the hometal factors influencing development. Significant environment on development and intelligence wasindependent factors influencing psychosocial greater than that of social status, family variablesdevelopment were: per capita income, education and nutritional status (Agarwal et al., 1992).of the mother, nutritional status of the child, In Pakistan, young children in lower socioeco-number of rooms and environmental hygiene in nomic groups showed delayed development inthe home, presence of a high school within easy comparison with their upper middle class coun-travel distance, availability of a caretaker when terparts (Yaqoob et al., 1993). In a cross-sectionalthe mother was busy, child attending an angan- study of 2000 apparently healthy children agedwadi nursery which is an early childhood setting under 6 years living in urban and rural areas ofrun by community workers, household access to Jabalpur, higher income emerged as the only realnewspapers, child having toys or toy substitutes, protective factor against poor cognitive develop-television, books, and story-telling by the mother ment (Dixit, Govil & Patel, 1992).(Kumar et al., 1997). Risk factors associated with behavioural prob- (c) Risk factors associated with developmentallems in 2–3-year-old children in the United Arab disability. Seven studies from LAMI countriesEmirates were reported to be perinatal factors, (Afghanistan, Bangladesh, India, Israel, Nige-adverse family factors and a history of mental ria, Pakistan and Saudi Arabia) have providedhealth problems in the family (Eapen, Zoubeidi information on risk factors associated with& Yunis, 2004). developmental disabilities. One of the earliest such studies was in Nigeria (Izuora, 1985), and(b) Risks associated with cognitive development. examined the causes of mental retardation in aFour studies in LAMI countries (Argentina, Bra- hospital-based sample of 291 children. The highzil, India and Pakistan) exemplify the evidence proportion of cases due to birth trauma (23%) orfor multiple risk and protective factors affecting severe neonatal jaundice (9%) reflected inadequa-cognitive development. cies in the quality of maternal and child services In a population-based study in Argentina, and obstetric care.Lejarraga et al. (2002) found that, even for healthy In a study on the frequency of mental retar-low-risk young children, high social class and dation, screening and diagnostic assessmentsmaternal education were associated with earlier were carried out in eight developing countries.attainment of selected developmental milestones. Approximately 1000 children aged 3–9 years were In a cohort study in a low-income population surveyed in each location. Patterns of risk factorsin north-eastern Brazil, social factors, most impor- related to mild and severe mental retardation weretantly poverty, had a detrimental effect on the examined. Parental consanguinity and multiplecognitive and motor development of 12-month- impairments were found in children with severeold children (Lima et al., 2004). In this study, a mental retardation. Families of children with anycohort of 245 infants born in 1998 was followed degree of mental retardation were found to belongitudinally. At 12 months, psychosocial and of lower socioeconomic status than comparisonbiological factors associated with Bayley scale families of children with no mental retardationscores were examined. Biological factors (birth (Stein, Belmont & Durkin, 1987).weight, weight for age, haemoglobin concentration In a study of chronic conditions and illnessesand sex of the infant) explained only 6–8% of the causing disability in Jewish Israeli children agedvariance in developmental scores, whereas 20% 2–3 years, 76 principal medical conditions caus-of the variance was explained by poverty-related ing disability were defined. Very low birth weightrisk factors (Lima et al., 2004). and family problems were considered the major The effects of nutrition and home environment risk factors for developmental delay or disability.on behavioural development and intelligence The disability rate among children with thesewere examined in 196 children in rural India. risks was 6–7.5 times greater than in the totalMalnourished children scored poorly in all the population. The most common developmentalareas of development (motor, adaptive, language difficulties were speech and language disordersand personal social). Approximately 27% of and undefined developmental delay. These con-children with malnutrition had an IQ score less ditions were more prevalent among children ofthan 79. Maternal involvement and stimulation mothers with a low educational level (Palti, Bendelwere strongly associated with better behavioural & Ornoy, 1992).development and intelligence. Multiple regres- A study in Pakistan found that, in children with 29
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD intellectual impairments with onset during the early and late marriage and childbearing, as well perinatal period (22% of cases), the main under- as low education, unemployment, multiparity and lying risk factors were being small for gestational consanguineous marriage, were found to be risk age and inherited disorders. During the postnatal factors contributing to developmental disabilities period (28% of cases), social deprivation and in children (Shawky, Abalkhail & Soliman, 2002). malnutrition were the major causes of intellectual Prenatal and postnatal risk factors for men- disability. In a substantial proportion of the cases tal retardation among children were studied in (50%), the onset or cause of intellectual disability approximately 10 300 children aged 2–9 years could not be traced. This study indicated a clear in Bangladesh. Multivariate analysis revealed that relationship between mild intellectual disabil- prenatal, perinatal, neonatal, and postnatal fac- ity and prenatal and tors all contributed to the prevalence of cognitive postnatal malnutrition disabilities. Significant independent predictors An estimated 930 million and social deprivation. of serious mental retardation in rural and urban children under 15 years Maternal illiteracy and areas included maternal goitre and postnatal are being raised in small head circum- brain infection. In rural areas, consanguinity and households where all of ference at birth were landlessness were also independently associatedthe adults work, and 36% the two variables that with serious mental retardation. In both rural andof the families interviewed showed a clear associa- urban areas, independent risk factors for mild had left a young child at tion with the develop- cognitive disabilities included maternal illiteracy, home alone. A further ment of mild mental landlessness, maternal history of pregnancy loss,27% had left a child in the disability (Yaqoob et and the child being small for gestational age at care of another – paid or al., 2004). birth. The authors suggested that “interventions unpaid – child. A study on the prev- likely to have the greatest impact on prevent- alence of childhood ing cognitive disabilities among children in disability in urban Bangladesh include expansion of existing iodine India suggested that supplementation, maternal literacy, and poverty comparatively small differences in social status alleviation programs as well as prevention of were associated with important differences in intracranial infections and their consequences” health status. Random samples of mothers from (Durkin et al., 2000). the lowest and next-to-lowest socioeconomic classes were interviewed to determine the preva- (d) Lack of appropriate child care. The effects on lence of serious disability in children aged 2–9 child development of lack of appropriate care have years. Disability was found to be more common been well investigated in high-income countries. among children of the lowest-class families In such countries, most young children and their (17.2%) than those of the next-to-lowest class families have access to high-quality child care and families (8.4%) (Natale et al., 1992). preschool settings, and leaving a child at home Risks of developmental disabilities were stud- alone is considered neglect or abuse. Children in ied in a preliminary case–control study in Afghan- LAMI countries, who do not have access to other istan, a low-income country with extremely high adult caregivers when the primary carer is work- rates of maternal illiteracy. Mothers and children ing or not available, may be left alone or in the attending a primary care clinic in Afghanistan care of other children. The scope of the problem were enrolled. The majority of mothers were illit- is alarming and is only now being investigated. erate (97%) and only 22% had received antenatal Heymann (2006) produced a groundbreaking care. The major risk factors for disability were study devoted to understanding how globaliza- consanguinity (first-cousin parents) and lack tion is affecting working families around the of antenatal care. In this study, presentations of world. This study reported new findings from an disability were found to be: delayed physical and analysis of surveys of 55 000 people from around mental development (25% of cases), cerebral palsy the world, with over 1000 in-depth interviews of (13%), club foot (10%), hearing impairment (9%), families and policy data from over 160 countries. and visual impairment (2%) (Nasir et al., 2004). The report describes how lack of support for A study in the north-east region of India showed working families not only dramatically affects that, of 376 children in a special school, 36% had the world’s children but also exacerbates gender developed visual impairment as a result of vitamin and income inequalities. An estimated 930 mil- A deficiency (Bhattacharjee et al., 2008). lion children under 15 years are being raised in In an epidemiological study in Saudi Arabia, households where all of the adults work, and 36% 30
  • CHAPTER 4. DEVELOPMENTAL RISKS AND PROTECTIVE FACTORS IN YOUNG CHILDRENof the families interviewed had left a young child 2. There are many risk factors in developingat home alone. A further 27% had left a child in countries that have an impact on child develop-the care of another – paid or unpaid – child. Of ment. Risk factors often have both biologicalparents with an income under US$ 10 per day, and psychosocial pathways, and act cumula-67% have had to choose between losing pay and tively. Most of these risk factors (e.g. maternalleaving sick children at home alone. In 66% of illiteracy, malnutrition, intrauterine growththe families, where parents had to leave children retardation, consanguinity between parents,at home alone or with a child, the children had adolescent pregnancy, lack of pre- and perina-suffered accidents or other emergencies. In 35% tal health care, poor child spacing, unintendedof the cases, the children were reported to have pregnancy) are preventable and have been orsuffered from developmental or behavioural are being addressed in affluent countries.problems. Heymann’s work shows the acute con- 3. The identification of risk factors is not onlysequences of the lack of appropriate child care, important for the prevention of developmen-particularly in developing countries, but also in tal difficulties, but also for the prevention ofmore affluent countries without appropriate child conditions that contribute to the severity ofcare policies. Interventions are urgently needed developmental disabilities (such as malnutri-to combat the chronic effects of being left alone tion).and of lack of appropriate care in the first threeyears of life. 4. In the life-cycle approach, risk factors can be grouped according to when they can be5. Risks and protective factors addressed – in the preconceptional, prenatal, across the lifespan perinatal, neonatal and postnatal periods.The early years are important for brain develop- This approach provides a roadmap for LAMIment and plasticity, but are not the end-point. countries, to review where their policies andThere is evidence from longitudinal studies programmes stand in addressing these risk fac-in developed countries that early intervention tors and what more they may need to do. Thiswith at-risk populations is effective, but that the approach should be viewed as a dynamic learn-long-term results are also affected by children’s ing process, in which new risk and protectiveexperiences in later years. Research related to the factors and interventions to address them canInfant Health and Development Program (1990), be added and shared between countries whenthe Brooklyn Early Education Project (Pierson, there is evidence of the effect of such factors1974), the Abecedarian Project (Campbell et al., on child development.2002), and the Parent-Nurse Partnership Pro- 5. The DDEC Survey indicated that health caregram (Olds et al., 2007) has provided important providers in LAMI countries in particular doinformation on risks, protective factors and the not have adequate knowledge and experiencerole of interventions across the lifespan. Efforts in recognizing developmental risk factors into address risk factors in the early years should young children. The role of individual riskbe coupled with efforts to address other risk fac- factors, their composite effects and preventiontors as children grow and mature into school age, and early recognition should be a part of theadolescence and early adulthood. training of all health care providers. 6. There has been some research from LAMIConclusions and implications countries providing evidence for the effects offor action social risk factors, such as poverty, on child1. The prevention, early recognition and manage- development. However, research on important ment of developmental difficulties in young core risks, such as child spacing, unintended children cannot be accomplished without pregnancy, problems in caregiver physical information on risk factors that adversely affect and mental health and caregiver-child rela- child development and protective factors that tionships, and deficiencies in child care, is promote child development in adverse circum- inadequate. These known risk and protective stances. A life-cycle approach to developmental factors, as well as other factors that may be risk factors is proposed as a guide for the health unique to particular cultures, will need to be system to interventions that can reduce risks further investigated, to guide interventions to and increase protective factors. reduce risks and strengthen protective factors to promote optimal child development. 31
  • WHO provides comprehensive guidance on counselling families on care: to improve feeding practicesand interactions with children, respond effectively when a child is sick, stimulate growth and development through play and communication activities, and solve problems in care. WHO, 2001c
  • 5 Chapter Prevention of developmental difficulties Purpose of chapter and additionalDDEC Survey results key resources TQuestion 6 of the DDEC Survey (see Annex his chapter presents an overview of interven-1) asked what proportion of all children tions that can be delivered through the healthreceived preventive services and whether care system to prevent developmental difficul-they were free of charge, i.e. paid by ties in young children. It includes a theoreticalgovernment or other insurance and free or at framework for interventions within the healthminimal cost to families. Antenatal primary system, examples of research on prevention inhealth care for pregnant women, delivery LAMI countries, and the WHO/UNICEF Careby trained birth attendants, primary health for Child Development intervention, a model thatcare in the first three years of life, growth aims to prevent lack of appropriate stimulationmonitoring, nutritional counselling, iron during early childhood. Readers are referred to thesupplementation to prevent anaemia, third paper in the Lancet series, “Early childhoodiodized salt, basic immunizations, develop­ development in developing countries” (Engle etmental surveillance, counselling of care­ al., 2007), which reviewed a range of interventionsgivers on how to improve their child’s to promote child development in developing coun-development, and home-visiting by health tries. A review of interventions in high-incomecare providers were free of charge in most countries that have been delivered through thecountries. Preventive services, such as ante­ health system is also available (Regalado & Hal-natal screening for Down syndrome and fon, 2001). An entire issue of the Internationalneonatal screening for phenylketonuria, Journal of Mental Health Promotion was devoted tohypothyroidism and hearing loss, were the European Early Promotion Project, a preven-not free of charge in most LAMI countries. tive intervention that aimed to promote the mentalMonitoring of developmental delay using health of young children in five European coun-standardized instruments was also not free tries (Davis & Tsiantis, 2005). A comprehensiveof charge in most countries. review of prevention of disability can be found inIn most of the LAMI countries surveyed, a recent document prepared for the Ministry ofthe majority of children did not receive Health of British Columbia, Canada (Kelly, 2007).preventive services. While developmental Other reviews and documents have dealt with:surveillance, counselling and home-visiting preventive interventions related to neonatal riskswere free of charge, these services did not (Greenough, Milner & Dimitriou, 2000; Hallidayreach more than half of the population in & Ehrenkrantz, 2000; Henderson-Smart et al.,any LAMI country. The services that were 2000; Jobe, 1993; National Institute of Health,not free of charge reached only a small 1995); postnatal factors, including nutritionminority of children. (Grantham-McGregor & Baker-Henningham, 2005; WHO, 1999); micronutrients (Lozoff & Georgieff, 2006); immunizations (www.who.int/ topics/poliomyelitis; www.who.int/immuniza- tion/topics/tetanus); infectious diseases (Graves & Gelband, 2006; www.who.int.entity/hiv/pub); social inequalities (Irwin, Siddiqi & Hertzman, 2007); and caregiver–child relationships (Richter, 2006; Eshel et al., 2006; WHO 1998b). 33
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOODConceptualizationThe United Nations Convention on the Rights ofthe Child calls for all countries to help childrendevelop to their utmost potential (United Nations,1989). International organizations, such as WHOand UNICEF, recognize that health care systemscan no longer focus solely on the survival ofchildren (Engle, Castle & Menon, 1996; Engleet al., 2007; Grantham-McGregor et al., 2007;Hill, Kirkwood & Edmond, 2004; WHO, 1999).To increase the well-being of both children and Prevention of malnutrition is crucial to preventingadults in LAMI countries, and to prevent develop- developmental difficulties: health care providers andmental difficulties, opportunities to promote early child, Kenya. © UNICEF/NYHQ2008-1455/Bonndevelopment need to be created and used (Herzt-man & Power, 2004; Richter, 2003; Simeonsson, clinical care settings, such as hospitals). This2000). There is substantial information from implies a continuum of interventions, such ashigh-income countries on how child development reproductive health, obstetric care, antenatal care,can be promoted through preventive health care postnatal care, care of sick newborn babies andservices for young children (Brazelton, 1999; children, child health services, and integratedDworkin, 2004; Green, 1994; Hornstein, O’Brien family and community care, throughout the& Stadtler, 1997; Knight et al., 2001; Mc Learn lifecycle.et al., 1998; Minkovitz et al., 2001; Needleman The conceptualization of preventive interven-et al., 1991; Puura et al., 2002; Roberts et al., tions for developmental difficulties is not sub-2002; Weitzman et al., 2004; Zuckerman et al., stantially different from that for child health and1997, 2004a, 2004b). This approach encounters survival. The use of similar terminology in the twomultiple barriers in health care systems in LAMI schemas highlights the significant and strikingcountries. Financial limitations are by far the most overlap. The model described here includes theoverwhelming; other major barriers include the health and survival interventions that preventpaucity of simple models for interventions that developmental difficulties as well as illness andcan reach large populations and of methods to death, and adds others that are directly related toevaluate their efficacy and effectiveness in LAMI early childhood development, such as enablingcountries (Richter, 2003). A systematic and com- caregivers to provide a nurturing and stimulatingprehensive conceptualization of how to promote environment.child development and methods to prevent devel- The model, shown in Figure 4, has four com-opmental difficulties within the health systems ponents, designating when, where and how tois needed. To meet this need, we present here a intervene and the level of intervention.model for preventing developmental difficultiesin early childhood. 1. When to intervene The timing of an intervention depends on when it will have a preventive effect. The healthyA model for preventing developmental developmental trajectory of a child is influenceddifficulties in early childhood throughout the life course by risk and protectiveThe model outlined below aims to assist health factors. Within the life-cycle framework (see pagecare policy-makers to visualize the types of XX), risks and protective factors for developmentalinterventions that could be instituted within the difficulties occur at the following times: precon-health care delivery system to prevent suboptimal ception, prenatal/perinatal, newborn, infancydevelopment in early childhood. It parallels the and early childhood, school age, adolescence andschema developed by Kerber et al. (2007) for adulthood. In Figure 4, the columns represent thechild survival and health, which highlighted the different periods in the life cycle. Interventionsimportance of continuity of care, both throughout are then placed in the column corresponding tothe life-cycle (adolescence, pregnancy, childbirth, the period in which they need to be delivered tothe postnatal period, and childhood) and between prevent developmental difficulties. For example,places of caregiving (including households, com- interventions for improving the social determi-munities, outpatient and outreach services, and nants of health can take place throughout the 34
  • CHAPTER 5. PREVENTION OF DEVELOPMENTAL DIFFICULTIESlife-cycle, while promotion of adolescent health, b) Secondary prevention involves addressingprevention of adolescent pregnancy and folic acid specific risks after they happen, to prevent theand iron supplementation must be carried out occurrence or reduce the severity of a disease orbefore conception. disorder. A classic example is the early detec- tion and treatment of iron deficiency anaemia.2. Where to intervene Other examples of secondary prevention effortsThe places for intervention are represented by the are: providing parenting education to high-riskthree rows in Figure 4. As proposed by Kerber et groups, such as adolescents; appropriate riskal. (2007), family and community care indicates management for the newborn, such as suc-national and community awareness, and support cessful resuscitation and transportation andprogrammes that reach families through media, early recognition and treatment of neonatalhealth providers, educators or other community jaundice and infections, malnutrition and iron-members. Outpatient and outreach services are deficiency anaemia; kangaroo mother care fordelivered through primary health care facilities, low birth weight infants; early intervention toand clinical services are health clinic or hospital- promote the development of high-risk infants,based services. For example, while maternal such as those with birth asphyxia, low birthphysical and mental health can be promoted at weight or prematurity; and early recognitionfamily and community level, early detection and and treatment of maternal depression.treatment of a problem, such as maternal depres-sion, would be at outpatient or outreach health c) Tertiary prevention is defined as specificcare level. care, rehabilitation and treatment of condi- tions when they have occurred, in an effort to3. How to intervene prevent further illness or disability. ExamplesInterventions for which there is an evidence base, for developmental difficulties are described inand that have been shown to be deliverable in detail in Chapter 9.many countries and to promote child development Using this model, health care providers andand prevent difficulties, are listed in Figure 4. policy-makers can determine which interventions4. Level of intervention need to be delivered to prevent developmental difficulties, when in the life-cycle they need toPublic health interventions can be at the primary, be delivered, where within systems, and thesecondary or tertiary level. The level of each level of intervention. Although interventions areintervention listed in Figure 4 is reflected in the shown separately on this schema, developmentalcolour of the text. risks often occur together and affect developmenta) Primary prevention involves preventing the through multiple pathways. Similarly, interven- occurrence of disease. A well known example tions will need to occur in conjunction or along a of primary prevention is immunization to continuum, to produce a cumulative effect. prevent illness and disability, e.g. immuni- zation against poliomyelitis. Primary-level interventions for child development include all Research in LAMI countries interventions that aim to prevent risk factors While successful results have been reported for child development or to promote protec- for interventions to prevent developmental dif- tive factors that foster resilience. The WHO/ ficulties in young children (Cooper et al., 2002; UNICEF Care for Child Development inter- Grantham-McGregor, Schofield & Harris, 1983; vention is described below as an example of Grantham-McGregor , Schofield & Powell, 1987; a primary-level intervention. With a life-cycle Grantham-McGregor et al., 1991; Hill, Kirkwood approach, education of girls, prevention of & Edmond, 2004; Powell et al., 1995; Super, Her- adolescent pregnancy, promotion of physical rera & Mora, 1990; WHO, 1999), LAMI countries and mental health in pregnancy, prevention are still not benefiting from the latest knowledge of birth asphyxia, promotion of safe delivery, (Richter, 2003). In reponse to the growth of prenatal screening, prevention of neonatal information on the importance of the early years, infections, malnutrition, iron, iodine and vita- and the determinants of health and development min deficiencies, and promotion of appropriate across the lifespan (Dawson, Ashman & Carver, nurturing and stimulation within the caregiv- 2000; DiPietro, 2000; Hertzman & Power, 2004; ing environment of children are all examples Shonkoff & Phillips, 2001), developed countries of primary prevention. have been redefining primary care for the past 35
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD Fıgure 4. Model for preventing developmental difficulties in early childhood Preconception Prenatal/perinatal Newborn First years of life Emergency obstetric Appropriate tertiary care care and immediate for high-risk newborn emergency care for newborn babies Emergency care and intensive careCLINICAL CARE Extra care for low Skilled obstetric care at birth weight newborns, Management of childhood illnesses birth and essential care including kangaroo and disorders for neonates (hygiene, mother care warmth, breastfeeding) Community-based rehabilitation Early intervention for children with developmental difficulties Early detection and management of developmental difficulties Early intervention for children at risk of developmental difficulties Early detection and treatment of iron deficiency Parenting education for high-risk Referral of high-risk groups (e.g. adolescents) pregnancies to tertiary Developmental and behavioural centres monitoring and support Antenatal corticosteroids Prophylactic iron supplementsOUTPATIENT AND OUTREACH SERVICES Extra visits for low birth Termination of Promotion of caregiver knowledge weight newborns pregnancy for detected and skills to provide nurturing and abnormalities Early recognition and stimulating environment for young treatment of neonatal children Tetanus immunization jaundice and infections Prevention of prenatal Health supervision visits Early detection and Home visiting infections referral of neonatal Vaccinations Prenatal screening complications Folic acid and iron Nutritional counselling and growth supplementation Pregnancy follow-up Newborn screening monitoring Family planning Elective abortion for unintended pregnancies INTEGRATED MANAGEMENT OF CHILDHOOD ILLNESSES Genetic screening and counselling EARLY DETECTION AND TREATMENT OF MATERNAL DEPRESSION Recognition of danger Prevention of violence, abuse and signs, emergency neglect preparedness Early recognition and caregiver Counselling and Promotion of mother– management of diarrhoea with oral Prevention of adolescent preparation for newborn newborn and family rehydration salts pregnancy care bonding Reproductive health Salt iodinization Preparation for Prevention of neonatalFAMILY AND COMMUNITY Adolescent health parenthood infections Promotion of parenting competence Education of girls Reduction of workload Exclusive breastfeeding for optimal development PROMOTION OF CHILD, FAMILY AND COMMUNITY RESILIENCE PROMOTION OF MATERNAL PHYSICAL AND MENTAL HEALTH IMPROVEMENT OF SOCIAL DETERMINANTS OF HEALTH – healthy nutrition, safe housing, environmental hygiene, living- wage jobs, gender equality, appropriate child care, preschool opportunities and schools, access to public and private goods and services, access to health care and appropriately trained health care providers. Primary prevention; Secondary prevention; Tertiary prevention 36
  • CHAPTER 5. PREVENTION OF DEVELOPMENTAL DIFFICULTIES25 years. As a result, in such countries primary is also a system for recording risk factors andhealth care now addresses a broad range of psy- early signs of complications, referrals, and treat-chosocial and developmental issues (Black, 2002; ment of the mother and infant. Data are enteredChamberlin, Szumowski & Zastowny, 1979; in the record by a number of people, includingChamberlin & Szumowski, 1980; Dinkevich the mother and various health care personnel.& Ozuah, 2002; Dworkin, 2004; Glascoe et al., This record also has the potential to address1998; Haggman-Laitila, 2003; Halfon et al., 2004; development, and many countries have informalPuura et al., 2002; Regalado & Halfon, 2001; HBMRs that include information on child devel-Schor & Elfenbein, 2004; Thomasgard & Metz, opment as well as child health. The initial WHO2004). In LAMI countries, however, structures HBMR was developed in 1982. A collaborativeand concepts such as well-child care, continuity study in 1984–88 in eight countries (Egypt,of care, anticipatory guidance, prevention and India, Pakistan, Philippines, Senegal, Sri Lanka,early identification of developmental delay, and Yemen and Zambia) to evaluate use of the recordearly intervention are still not well established. summarized its findings as follows: “use of the We give here a brief summary of findings from HBMR had a favourable impact on utilization ofresearch that has not previously been reviewed, health care services and continuity of the healthcategorized according to the level of prevention. care of women during their reproductive period. The HBMR succeeded in promoting self-care by1. Primary prevention. mothers and their families and in enhancing theThere are many models of primary prevention timely identification of at-risk cases that neededfrom high-income countries. In the United States, referral and special care. The introduction of thefor example, children from low-income families HBMR increased the diagnosis and referral ofare referred to Early Head Start Programs, which at-risk pregnant women and newborn infants,provide a range of interventions to improve improved family planning and health education,health, nutitional status, parental competence, led to an increase in tetanus toxoid immuniza-and child development (McAllister et al., 2005). tion, and provided a means of collecting healthIn the United Kingdom, Sure Start is a nation- information in the community. The HBMR waswide preventive programme for young children liked by mothers, community health workers and(Roberts & Hall, 2000). Research in developed other health care personnel because, by using it,populations has shown that promotion of devel- the mothers became more involved in lookingopment during paediatric health care encounters after their own health and that of their babies.has many potential benefits for children and Apart from local adaptation of the HBMR, thefamilies (Davis & Tsiantis, 2005; Margolis et training and involvement of health personnelal., 2001; Regalado & Halfon, 2001; Whitt & (including those at the second and tertiary levels),Casey, 1982). Notwithstanding the increasing from the start of the HBMR scheme, influenced itspopularity of such models, the efficacy of includ- success in promoting maternal and child healthing a child development intervention in a health care. The HBMR also improved the collection ofcare encounter has not been fully investigated community-based data and the linking of referral(Regalado & Halfon, 2001). The limited number networks.” (Shah et al., 1993).of studies has been attributed to the novelty of the The second study, in Brazil, showed thefield and the difficulty of conducting trials to test effectiveness of a short-term, primary preven-efficacy and effectiveness (Zuckerman, Augustyn tive intervention for child development. In this& Parker, 2001). controlled study on 156 children, those in the In LAMI countries, research on interventions intervention group took part in home-basedspecifically aimed at preventing developmental individual and community-based group activities.difficulties is extremely rare. Two occupational therapists, specialized in child Three studies are described here as examples of development, and five home visitors delivered thepostnatal primary prevention interventions. The intervention, which comprised of 14 contacts – anfirst study was on the home-based maternal record initial home visit when the child was 13 months of(HBMR), which is a practical tool that integrates age, three workshops, and ten reinforcement homea number of primary health care interventions, visits. At the first home visit, the trainers reviewedsuch as prenatal care, immunizations, growth the importance of early childhood developmentand nutrition. The HBMR allows caregivers and and provided examples of appropriate activitieshealth providers to keep track of a mother and for the children. The workshops, which were heldchild’s health needs and progress. The HBMR when the child was 14, 15, and 16 months of age, 37
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOODincluded eight mothers in each group and lasted was the Infant Health and Development Programthree hours. The 15-month workshop focused on (IHDP), conducted in the 1980s in the Unitedletting the mothers play and interact with their States (Brooks-Gunn, Liaw & Klebanov, 1992;child. Manufactured toys were used during the Cervantes & Raabe, 1991; Gilette et al., 1991;first part of the session; then the same activity Kraemer & Fendt, 1990; McCormick et al., 1991;was demonstrated with a home-made toy. For Ramey et al., 1992; Spiker et al., 1991). There hasexample, a drum was replaced by a tin and spoon, also been considerable research on secondaryand a shaker by a clear plastic bottle containing prevention in LAMI countries.coloured bottle tops. Mothers practised making The WHO publication, A Critical Link, reviewedtoys from discarded household items and using research on many nutritional and psychosocialthem to promote specific aspects of development. interventions that address developmental difficul-They also learned how to use everyday activities ties in children with malnutrition (WHO, 1999).(e.g. bathing and dressing the child) and everyday This document also highlighted the importancehousehold tasks (e.g. laundry and meal prepara- of applying the biopsychosocial and cumulativetion) to promote interaction and development. At risk models in preventive efforts. The work ofthe 16-month workshop, mothers were encour- Grantham-McGregor, who has devoted years toaged to talk about what they had learned; each research on secondary-level interventions forgroup made a poster to illustrate their knowledge malnourished children in Jamaica (Grantham-of child development and their opinions about McGregor et al., 1991), and Bangladesh (Hama-the intervention activities. Ten weekly home dani et al., 2006), provides strong evidence thatvisits occurred when the child was between secondary preventive efforts can be successful.14 and 18 months, as reinforcers. These lasted Secondary interventions can also target car-30–45 minutes, during which the visitor and egivers to alter the effect of a risk factor. In Southmother played with the child in ways that would Africa, for example, mother–child interactionpromote development. At each visit, the visitor was positively affected by 22 intensive, one-hourleft with the mother a toy made from recycled sessions delivered by trained community healthmaterial. The control grouped received regular workers to depressed women with young chil-care at the health fascilities and no intervention. dren. The intervention started prenatally andAt 18 months, the mean differences between the continued until the child was 6 months of ageintervention and control groups were + 9.4 points (Cooper et al., 2002).for Bayley Mental Development Index and + 8.2 Examples of other interventions can be foundpoints for Psychomotor Development Index (P < in other reviews (Eshel et al., 2006; Engle et al.,0.001 in each case). This study showed the efficacy 2007).of a short-term primary intervention to improvethe development of young children (Eickmann 3. Tertiary preventionet al., 2003). Research in LAMI countries on tertiary preven- The third study, also in Brazil, showed the tion for developmental difficulties is reviewed ineffect on mother–child interactions of a one-time Chapter 9.intervention (Wendland-Carro, Piccinini & Mil-lar, 1999). First-time mothers were provided with An exemplary model from aone of two interventions shortly after childbirth: a developing country: the WHO/short videotape and discussion meant to enhance UNICEF Care for Childmother–infant interaction, or a control interven- Development Interventiontion focused on basic caregiving skills. Bothinterventions were carefully controlled to give the WHO and UNICEF developed the Care for Childsame amount of attention to all mothers. Follow- Development Intervention (CCDI) (WHO, 2001c)up at one month showed that the first group was as a systematic, cost-effective strategy to promotemore responsive to, and engaged in more physical the health and development of young children thatcontact with, their infants. can be applied across a variety of public health care settings within resource limitations. The2. Secondary prevention CCDI was initially developed as a supplemet toThe pioneer for secondary-level prevention the Integrated Management of Childhood Illnessresearch (i.e. addressing specific risks after they (IMCI) strategy (Gove, 1997; Lambrechts, Bryce &happen to prevent the occurrence or reduce the Orinda, 1999; Pelto et al., 2004; Tulloch, 1999),severity of disease) in resource-rich countries to promote the development of young children 38
  • CHAPTER 5. PREVENTION OF DEVELOPMENTAL DIFFICULTIESduring their encounters with the health care rently many countries that are using the IMCIsystem. There are major differences in the health have expressed an interest in using the CCDI,care delivered to children in high-income and and some have implemented this interventionLAMI countries. Children in LAMI countries within their health systems. WHO and UNICEFgenerally have far fewer encounters with health are in the process of revising the CCDI so thatcare providers, and these are typically for acute it can be applied as a “stand-alone” interventionillness rather than for well-child care. The CCDI or incorporated into other programmes, such asmakes use of these encounters, and is designed newborn care and growth monitoring. Researchto be used for children with malnutrition, iron on the CCDI has not been extensive. Pilot studiesdeficiency anaemia or an acute minor illness, or in Brazil (Dos Santos et al., 1999) and South Africafor any child under two years who comes into con- (Chopra, 2001) suggested that the CCDI couldtact with the health care system. Once the reason be taught effectively and that the training coursefor the visit has been addressed, the health care improved the knowledge and attitudes of healthprovider conducts a standardized semi-structured care providers regarding counselling of caregivers,interview with the primary caregiver, assessing and could teach health care workers sustainedcertain aspects of the caregiving environment, skills that they could then deliver accurately inspecifically how the caregiver plays and commu- regular clinical contexts.nicates with the child. The intervention includes In a controlled trial, Ertem et al. (2006) testedstrategies for listening and observing for positive the efficacy of the Care for Child Developmentinteractions, using specific praise and positive Intervention in Ankara, Turkey. The study showedreinforcement, and providing the caregiver withideas for communication and home-made toys forage-appropriate stimulation. The CCDI has three important characteristics The CCDI has three important characteristics thatthat make it a promising intervention for world- make it a promising intervention for worldwide use.wide use. First, it is informed by, and reflects, First, it is informed by, and reflects, the current “statethe current “state of the art” teachings on child of the art” teachings on child development.development. It makes use of caregiver and child Second, the CCDI has been designed for use as acompetencies in interaction and simple home- public health intervention in any population.made toys for stimulation of child development. Third, the CCDI has a “vector” – the IMCI – so it canSecond, the CCDI has been designed for use as be implemented in any country that wishesa public health intervention in any population, to take up the IMCI model.including resource-poor groups in the developingworld. In such settings, the only opportunity forhealth care staff to have contact with caregiversand children may be during consultations for that the CCDI was safe to use in acute healthacute illness. Third, the CCDI has a “vector” – the care visits for children 2 years of age and under,IMCI – so it can be implemented in any country and that the intervention, when reinforced at athat wishes to take up the IMCI model. Cur- second health care visit, was effective in fostering caregivers’ efforts to provide a more stimulating home environment for their children. The use of the CCDI can allow child development concepts to be integrated in health care systems in a brief and practical intervention. WHO and UNICEF are further promoting the CCDI as a promising strategy to enhance child development in devel- oping countries. Conclusions and implications for action 1. The DDEC Survey found that, in most of the countries, many services related to the preven-Adequate nutrition is a prerequisite for healthy braindevelopment: children in therapeutic feeding center, tion of developmental difficulties in youngEthiopia. © UNICEF/NYHQ2008-0444/Tegene children were government-subsidized and 39
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD free of charge. However, few of these services ficulties can be incorporated into health care reached the majority of children, particularly for young children in high-income countries. in LAMI countries. Services that were directly While financial limitations are by far the most related to the prevention of specific disorders, overwhelming barrier, the lack of application such as neonatal screening, and those related of knowledge from high-income countries, to the promotion of early childhood develop- the paucity of simple models of interventions ment, such as counselling caregivers on child that can reach mass populations, and the pau- development and developmental surveillance, city of methods to evaluate their efficacy and were delivered to very few children in LAMI effectiveness, are all major impediments to the countries, even though they have been found promotion of preventive interventions in LAMI to be cost-effective in high-income countries. countries.2. There have been very few studies that have 4. The framework developed in Chapter 4 can be directly examined the effectiveness of interven- expanded as a model for viewing preventive tions to prevent developmental difficulties in interventions. This approach describes prima- young children. Most such interventions are ry, secondary and tertiary level interventions related to nutritional and micronutrient sup- that can be applied through the health system. plementation. There is a great need for studies Using this model, countries and communities of effectiveness at all levels of prevention, as can visualize what they have already accom- well as model programmes in LAMI countries. plished with regard to preventive interventions and what additional interventions they need to3. There is substantial information on how pre- institute to prevent developmental difficulties. ventive interventions for developmental dif- 40
  • 6 Chapter Early detection of developmental difficulties is adapted from the definitions of developmental DDEC Survey results surveillance by Dworkin (1989) and Blair & Hall In the DDEC Survey, questions 11 and 14 (2006). The term developmental monitoring is were specifically related to early detection used here for approaches in which a health care (see Annex 1). In most countries, caregivers provider, who follows the child and family regu- were generally the first to recognize that a larly, uses standardized instruments to monitor young child had developmental difficulties, the child’s developmental functioning in all areas. followed by paediatricians and other In this model, the child’s cognitive, language, health care providers. In most countries, social-emotional and motor development is fol- most health providers were not using any lowed on a regular basis, in conjunction with instruments routinely to determine the other aspects of the child’s health and the family’s presence of developmental difficulties in functioning. Monitoring also includes working young children. with the family to provide special support when needed to ensure the child’s optimal develop- ment. The term developmental screening is used for approaches in which groups of children are screened to ascertain whether they have develop-Purpose of chapter mental delay, by testers who do not necessarilyE arly recognition of developmental difficulties in young children allows both preventive andtherapeutic approaches to be taken and is a crucial have a continuous relationship with the families or access to health or social information other than that provided by the screening instrument.step in addressing the problems. In developed The major constituents of developmental moni-countries, the early detection of developmental toring are as follows.difficulties is possible because developmental 1. The clinician conducting the monitoringmonitoring is an integral part of health care should build a relationship with the family.encounters (Baird & Hall, 1985; Blair & Hall,2006; Council on Children With Disabilities, 2. The monitoring process should be family-2006; Davis & Tsiantis, 2005; Earls & Hay, 2006; centred and the family should be an activeKatz et al., 2002; McKay, 2006; Regalado & Hal- partner in the monitoring process.fon 2001; Roberts, 2000; Zuckerman et al., 2004a, 3. The monitoring should be comprehensive,2004b). This chapter promotes “developmental so that multiple aspects of the child’s healthmonitoring” as a process for the early detection of and development and the family’s needs anddevelopmental difficulties in LAMI countries. It functioning are taken into consideration, rathersummarizes the conceptualization of early detec- than just the results of a screening test.tion and developmental monitoring and addresseskey questions that are of importance for LAMI 4. Clinically appropriate, standardized, scientifi-countries in light of the existing research. cally reliable and valid instruments should be used.Conceptualization 5. The clinician conducting the monitoring should be knowledgeable about theoreticalThe terms “developmental monitoring”, “develop- concepts related to child development.mental screening”, and “developmental surveil-lance” have been used interchangeablely in the 6. Screening for identifiable and treatable condi-literature. The term “developmental monitoring” tions, such as hearing problems, and for meta- 41
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD bolic, genetic or other disorders should be an integral part of developmental monitoring.7. The monitoring process should result in a seamless transition to services that will support the child’s development when needed.Research in high-income countries has shownthat children and their caregivers benefit fromdevelopmental monitoring during health visitsin multiple ways:1. If the child is developing normally, clinicians can provide reassurance, support parenting competence, and provide anticipatory guid- ance.2. If the child has a developmental risk or diffi- culty, this can be detected early and addressed.3. In both situations, caregivers can be sup- ported and informed about how to enhance their child’s development (Baird & Hall, 1985; Blair & Hall, 2006; Council on Children with Disabilities, 2006; Davis & Tsiantis, 2005; Early detection of developmental difficulties requires Dworkin, 1989; Earls & Hay 2006; Halfon et active monitoring: child with developmental pediatrician, al., 2004; McKay, 2006; Regalado & Halfon, Turkey. Photo: Dr. Zeynep Eras 2001; Roberts, 2000; Zuckerman et al., 2004a, 2004b). authors have suggested that, where services doAt a population level, developmental monitoring not exist for children with developmental dif-can provide information about rates of develop- ficulties, monitoring should not be conductedmental difficulties, so that interventions can be (Logan, 1995). Although hard data are notappropriately targeted, their effect monitored and available, there is anecdotal evidence that mostthe need for further interventions determined children with developmental disabilities in LAMI(Engle et al., 2007; Mung’ala-Odera & Newton, countries do not have access to conventional early2007). The use of similar methods in developing intervention and rehabilitation services providedcountries could potentially lead to better sharing by trained professionals. Even in high-incomeof information between researchers, clinicians countries, interventions rely largely on caregiv-and policy-makers and improved allocation of ers’ involvement with their children during dailyfunds, and help decrease the ethically unaccep- activities (Spiker, Hebbeler & Mallik, 2005). Eventable gaps between services for young children in when professional services are lacking, it is stilldifferent countries. in the best interest of the child for caregivers to be informed of developmental difficulties and supported in ameliorating development. Further-Research in LAMI countries more, some developmental difficulties in youngResearch on developmental monitoring in LAMI children can be treated by a range of interven-countries is examined in relation to six impor- tions that are feasible in many parts of the world,tant questions, generated from a review of the such as nutritional supplementation (Grantham-literature. McGregor & Baker-Henningham, 2005), treat- ment of iron deficiency (Beard, 2007; Lozoff &1. Should developmental monitoring be Georgieff, 2006; Lozoff, Jimenez & Smith, 2006) conducted in LAMI countries? improved child–caregiver interaction and infantProgress towards monitoring child development stimulation (Eshel, 2006; Hamadani et al., 2006;in LAMI countries has been impeded by reser- Powell et al., 2004; Richter, 2004; Walker et al.,vations about the availability of interventions 2005, 2006), and community-based rehabilitationand the possibility of increasing the burden on (WHO 2010, Turmusani,Vreede & Wirz, 2002).already burdened health care systems. Some Nevertheless, because of this important 42
  • CHAPTER 6. EARLY DETECTION OF DEVELOPMENTAL DIFFICULTIESreservation, models for developmental monitor- regarding their child’s development or whethering should not be based on a mere screening their child has achieved certain developmentalapproach. Such models should incorporate an milestones have been shown to have appropriateunderstanding of risk and protective factors psychometric properties as screening tools andand methods for monitoring and supporting the are now recommended in many high-incomedevelopment of all children within the health care countries (Council on Children with Disabilities,system with direct links to available interventions. 2006; Meisels&Atkins-Burnet, 2000). In the USA, The second reservation – that adding child the implementation of developmental monitoringdevelopment concepts may further burden already and the early detection of developmental difficul-burdened health care systems – also requires ties have been effective only when standardizedcareful consideration. Health care systems in instruments and protocols were used (Bethell etdeveloping countries have conventionally focused al., 2004; Council on Children with Disabilities,on improving child survival rates and physical 2006; Meisels&Atkins-Burnet, 2000; Sand et al.,health. As emphasized in Chapter 2, however, 2005; Sices et al., 2004; Zuckerman, 2004b). Thechild survival, health and development are closely American Academy of Pediatrics (AAP), there-linked (WHO, 1999). Conditions that have an fore, currently recommends that standardizedimpact on survival and health, such as malnu- instruments be used (Council on Children withtrition, also impede development. Conversely, Disabilities, 2006).conditions that cause developmental difficulties, In LAMI countries, the lack of appropriatesuch as maternal depression, also have an impact instruments may be a major barrier to monitoringon child survival and health (Klinnert et al., 2001; child development (Engle et al., 2007; Murray &Rahman et al., 2004a, 2004b, 2007; WHO, 1999). Lopez, 1994; Sonnander, 2000). Studies suggestTherefore, models for monitoring child develop- that caregivers (Ertem et al., 2007; de Lourdesment must be rooted in a child health perspective, Drachler et al., 2005; Li et al., 2000) and healthand aim to integrate and strengthen efforts to care providers (Bhatia & Joseph, 2000; Ertem etimprove child survival and health. al., 2007; Figueiras et al., 2003; Kalra, Seth & Sapra, 2005; Lian et al., 2003; Lopez et al., 2000;2. What kinds of instruments are Mathur et al., 1995; Wirz et al., 2005) in LAMI appropriate for developmental monitoring countries may not have sufficient knowledge about in LAMI countries? early childhood development and that, therefore,Instruments that help clinicians to detect devel- the need for instruments in the monitoring processopmental difficulties are core components of is even greater than in high-income countries.developmental monitoring, and have evolved in Some instruments do exist to assess developmen-two areas in recent years (Blair & Hall, 2006; tal difficulties – for example the “Ten QuestionsCouncil on Children With Disabilities, 2006; Questionnaire,” (Durkin, Hasan & Hasan 1995;Dworkin, 1989; Gilliam, Meisels & Mayes, 2005; Mung’ala-Odera et al., 2004; Thorburn et al., 1992)Glascoe, 2005; Meisels & Fenichel, 1996; Mei- the “ACCESS portfolio of materials” (Wirz et al.,sels& Atkins-Burnet, 2000; Msall, 2005; Rydz 2005) and the “Disability Screening Schedule”et al., 2005). First, language, social-emotional, (Chopra, Verma & Seetharaman, 1999; Gupta &cognitive and behavioural development and Patel, 1991; Mung’ala-Odera & Newton, 2007)functional capacity have become essential com- do exist. The Ten Questions Questionnaire hasponents of instruments. Second, the importance proven valuable in many studies in identifyingof caregiver– clinician communication and severe disability in older children, but does notpartnership has been reflected in the methods aim to provide a framework for monitoring childused for developmental monitoring. Based on development. Furthermore, it has been found tothe family-centred care initiative in child health, be limited in scope (Trani, 2009).illness and advances in early intervention, mod- The Denver Developmental Screening Ttestels in which a parent watches while a clinician (DDST) (Frankenburg & Dodds, 1967) and the“tests” the child have moved to models in which revised version, Denver II (Frankenburg et al.,a caregiver and clinician use instruments to 1992), have been adapted in many countries. This“talk” about the child’s development and build a test, however, has the disadvantage of relying onjoint understanding (Gilliam, Meisels & Mayes, the testing of the child, and requires equipment2005; Glascoe, 2005; Meisels & Fenichel, 1996; to elicit a child’s skills. It does not provide aMeisels&Atkins-Burnet, 2000). Many instru- description of the child’s functioning and does notments that ask caregivers about their concerns have a component that can be used for planning 43
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOODinterventions. The training does not incorporate Also, the benefits of its use within health systemsthe importance of developing partnerships with have not been demonstrated (Liao & Pan, 2005;caregivers. Furthermore, the Denver test has Liao et al., 2005). All of the above instrumentsrecently lost popularity in the United States as rely on child testing methods.a result of research demonstrating inadequate As seen from the results of the DDEC Surveysensitivity, specificity and accuracy (Glascoe et and the existing literature, none of these instru-al., 1992; Glascoe, 2001). ments is being widely used. If developmental Alternatives to the Denver test have been monitoring is to become available to childrenexamined in a few LAMI countries. India has worldwide, it is important to consider what kinda relative wealth of research on instruments for of instruments should best be employed. In choos-developmental screening (Vazir et al., 1994a, ing a method for monitoring of child development1994b) and a number of instruments have and early detection of developmental difficultiesemerged. For example, the Woodside Screening by health providers in LAMI countries, it is impor-Technique, which is used in India was developed tant to address the following issues.in the United Kingdom (Gupta & Patel, 1991). The a) The generally low level of caregiver educationauthors also compared the Woodside Screening and literacy limit the use of written question-Technique to the DDST and reported superior naires that need to be completed by the care­sensitivity (83%) and specificity (88%) and com- giver.parable over-referral and under-referral rates.The Baroda Developmental Screening Test was b) Evidence suggests that checklists about mile-developed by choosing 31 mental and 22 motor stones and caregiver concerns may not beitems from the Baroda norms (Phatak et al., 1991). sufficient to identify developmental delays inThe Trivandrum Developmental Screening Chart, LAMI countries (de Lourdes Drachler et al.,which is also derived from the Baroda norms, has 2005; Theeranate & Chuengchitraks, 2005). In17 items (Nair et al., 1991). Unfortunately, both populations where many children have delayedinstruments were validated against the DDST, development, car-which itself has only moderate validity in com- egivers may notparison with gold standard measures that involve have a reference The method used forin- depth developmental assessment techniques for how children developmental monitoring(Glascoe et al., 1992). Vazir et al. (1994) developed should develop. in developing countriesa screening test battery for assessment of psycho- needs to be: (a) family- c) Careg ivers m aysocial development. This instrument, known as centred; (b) scientifically not readily expressthe Indian Council of Medical Research (ICMR) reliable and valid; (c) concerns or admitDevelopmental Screening Scale, was standard- appropriate for use in that their childized on a large sample of over 13 000 urban and various cultures; (d) brief, has not reached arural children in three regions of India. All of user-friendly, easy to learn certain milestonethese instruments rely on child testing as well as and administer, and with i f t he y r e c e ivecaregiver reports of achievement of milestones, minimal space requirements health care onlyand are important contributions to developmental for documentation. sporadically, domonitoring in the health system in India. not receive health In Nigeria, a Developmental Screening Inven- care from the sametory (DSI) has been developed for children aged trusted provider at each visit, do not believe0–30 months and a validity study has been con- that interventions exist, or are concerned aboutducted in comparison with the Bayley Scales of stigma related to developmental difficultiesInfant Development. A standardization of this (Logan, 1995).instrument has not yet been reported. Further-more, it is difficult to ascertain its validity, as d) Reliance on child-testing methods that involvesensitivity and specificity values have not been direct elicitation of developmental skills isreported (Aina & Morakinyo, 2001, 2005). neither practical nor desirable in developing An instrument referred to as the Comprehen- countries. This is partly because it is difficultsive Developmental Inventory for Infants and and time-consuming to elicit optimal function-Toddlers has been developed in China (Province ing of young children during health care visits.of Taiwan). Data on reliability are limited, and no In addition, testing of a child most often leavesdata are available on the validity of the instrument the caregiver watching rather than participat-compared with standard diagnostic assessments. ing in the evaluation, and therefore does not 44
  • CHAPTER 6. EARLY DETECTION OF DEVELOPMENTAL DIFFICULTIES capitalize on the partnership of clinicians with studies has been to show that, when child health caregivers. Caregivers know their children best is homogeneous and optimal, child growth and and, even more than in developed countries, motor development are similar in countries with may be the key resource to support children’s diverse conditions. The “prescriptive sample” development. approach is now being applied in developing countries, as exemplified by the standardizatione) Objects are often needed to elicit skills and study for developmental milestones in Argentina the cleanliness of such objects may be a major (Lejarraga et al., 2002) and in the development concern in developing countries. of the guide for monitoring child development inIn summary, the method used for developmental Turkey (Ertem et al., 2008).monitoring in developing countries needs to be:(a) family-centred; (b) scientifically reliable and 4. Do norms for developmental milestonesvalid; (c) appropriate for use in various cultures; need to be developed for every population?(d) brief, user-friendly, easy to learn and adminis- This question relates to whether healthy youngter, and with minimal space requirements for doc- children attain key functional developmentalumentation. An example of such an instrument, milestones at similar ages. This is a question ofwhich has been developed in Turkey, is described critical importance, given the methodological andbelow (see page XX) (Ertem et al., 2008). financial difficulties of standardizing develop- mental tests where there is little infrastructure to3. How should standard reference points be support the necessary studies. If young children determined in developing countries? in optimal health attain key functional develop-Readers are referred to other reviews for details mental milestones at comparable ages around theof the processes required to translate and adapt world, then similar developmental milestonesinstruments for use in different populations (Peña, could be used worldwide, without the need for2007; van Widenfelt et al., 2005). Here, particular separate norms for every population.emphasis is given to the standardization process It has long been assumed that the develop-for defining the developmental milestones. Two ment of young children is different in differentcontrasting approaches have been used to select populations and cannot be monitored using uni-the population that constitutes the standard versal standards. Earlier studies pointed to minorreference. In the United States, most studies differences in the development of children fromusing instruments that measure cognition, such different backgrounds. In Jerusalem, a study ofas the Wechsler Intelligence Scale for Children Israeli children under 12 months of age with a(Wechsler, 1991) and the Bayley Scales of Infant variety of ethnic backgrounds revealed differencesDevelopment (Bayley, 2006), have been conducted in the developmental quotients: children of Northon population-based samples, with no attempt African origin scored highest and those of Euro-to exclude children with health conditions that pean origin scored lowest on an adaptation of thepose risks to development. Since children in Gessell developmental schedule (Ivanans, 1975).LAMI countries have much higher rates of such Keefer et al. (1982) found differences betweenhealth conditions, however, a different approach small samples of Kenyan and American newbornsis needed. WHO recommends that, in popula- on the Brazelton Neonatal Behavioral Assessmenttions with a high prevalence of conditions that Scale, and concluded that culture-specific modelsare hazardous to child health and development of development were needed.(such as malnutrition, low birth weight, chronic As a result, many countries have developedinfections, parasitic infestations, iron-deficiency their own milestones for developmental screeninganaemia and perinatal complications), references tests. For example, the “restandardization” of thefor monitoring growth and development should Denver Developmental Screening Test started inbe based on a “prescriptive sample” of healthy the Phillippines in 1977 (Williams, 1984). Sincechildren without these risks, rather than on a then the Denver test has been restandardized orgeographical population (Borghi et al., 2006; adapted in Japan (Ueda, 1978), China (Song, Zhude Onis, Garza & Victora, 2003; de Onis et al., & Gu, 1982), Turkey (Yalaz & Epir, 1983), Israel2006; Wijnhoven et al., 2004). This approach (Shapira & Harel, 1983), Indonesia (Hariyono, etwas applied by WHO to construct the recently al, 1987), Malaysia (Chen, 1989), India (Phataklaunched International Growth Standards and in & Khurana, 1991), Armenia (Akaragian & Dewa,the WHO Motor Development Study (Wijnhoven 1992), Singapore (Lim, Chan & Yoong, 1994),et al., 2004). An additional contribution of these Thailand (Sriyaporn, Pissasoontorn & Sakdis- 45
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD awadi, 1994), North Africa and the Eastern Medi- children attain a particular milestone, there are terranean (al Naquib et al, 1999), Brazil (Drachler, likely to be few differences between countries. Marshall, & de Carvalho Leite, 2007) and Malawi The WHO Motor Development Study demon- (Gladstone et al., 2008). Thousands of children in strated that early motor development is similar these countries were screened using the Denver across countries and that one standard can be test. Although vast resources were devoted to these constructed (Wijnhoven et al., 2004). Conceptu- standardization studies, the implementation of ally, based on innate biological and psychoso- developmental monitoring during health care visits cial processes, it appears that there are enough remains a problem in many of these countries. similarities in functional development between This historical overview of the standardization of children from different ethnic, geographical or the Denver test in many resource-poor countries cultural backgrounds to allow one standard to demonstrates the need to determine whether more be constructed for children aged 0–3 years. A appropriate methods can be found to monitor child multicultural study designed to confirm this, development, and whether there can be a universal similar to that conducted for international growth set of standardized milestones. curves (de Onis et al., 2003), could bring about a Efforts led by WHO to identify appropriate major advance and eliminate the need for costly methods to monitor child development date and time-consuming standardization and valida- back to 1983. In a collaborative study in China, tion of instruments for each country. It should be India and Thailand, 28 139 children were tested noted, however, that methods for developmental to define age ranges for the attainment of devel- monitoring used in such a study should: (a) incor- opmental milestones. This initiative was not porate the latest information on developmental designed to develop an instrument for develop- monitoring, rather than screening; (b) be cultur- mental monitoring, and did not answer the critical ally appropriate for use in LAMI countries; (c) question of whether enough similarities could be be linked directly to services for developmental found across populations for the construction of a support and management of problems detected. common monitoring instrument. The published results of this study (Lansdown, 1996) have been 5. Is early detection of behavioural and further investigated for this review, to improve our social–emotional difficulties possible understanding of differences between populations through the health system? of young children. The investigation found only Developmental monitoring should include not minor differences between countries in the ages only motor, cognitive and language development at which children attain many developmental but also social–emotional development and milestones. The ages of attainment of ten devel- behaviour. Indeed, current knowledge about child opmental milestones for children under 2 years development brings the social–emotional domain were compared for the three countries in the to the forefront. Research has demonstrated that WHO study and for social–emotional development during the early the Turkish stand- years is a key element for good mental health and ardization sample for functioning in later years. Thus, the detection of Conceptually, based on the GMCD (Ertem et social–emotional and behavioural difficulties in innate biological and al, 2008). The median young children is extremely important. In the psychosocial processes, values reported were United States, the prevalence of psychosocial and it appears that there are similar in all four behavioural problems in children has been report- enough similarities in countries. Although ed to be between 12% and 27% (Briggs-Gowan functional development language develop- et al., 2000; Cassidy & Jellinek, 1998; Simonian, between children ment may be expect- 2006; Williams et al., 2004). Despite this high from different ethnic, ed to be most diverse prevalence, the early detection of social–emo- geographical or cultural between countries, tional and behavioural difficulties is inadequate. backgrounds to allow one the median value for Because of lack of training and limited time standard to be constructed the milestone “saying during health visits, health professionals are notfor children aged 0–3 years. one word,” for exam- routinely monitoring children for behavioural and ple, was 9.3 months social–emotional difficulties, even in high-income in urban China, 9.7 countries (Cassidy & Jellinek, 1998, Reijneveld months in urban India and 10.2 months in Tur- et al., 2004; Simonian, 2006). Nevertheless, it is key. If normative development is defined on the important to note that there have been advances basis of the age at which 90% or 95% of healthy in instruments for monitoring social–emotional 46
  • CHAPTER 6. EARLY DETECTION OF DEVELOPMENTAL DIFFICULTIESdevelopment within health care settings (Simo- increases rates of developmental monitoring andnian, 2006; Weitzman & Leventhal, 2006). A detection of developmental difficulties; and (c)review of such instruments is available and may whether, after training, community clinicians canbe a useful resource for clinicians in LAMI coun- reliably carry out monitoring.tries (Weitzman & Leventhal, 2006). Developmental monitoring may not currently In developing countries, although research on be a priority for many clinicians, and there arethe behaviour and psychosocial health of children significant potential barriers to introducing it intodates back to the 1970s (Minde, 1977), there clinical practice. In addition, there has been veryhas been very limited research on monitoring of little research on how developmental monitoringsocial–emotional and behavioural difficulties in can be incorporated into clinical health care prac-young children in health systems. Studies on the tice in LAMI countries. What little research hasbehavioural development of very young children been conducted indicates that clinicians requirehave mostly aimed to determine prevalence rather training in counselling caregivers on child devel-than to institute a monitoring system. One study of opment (Baird & Hall, 1985) and in detecting andinstruments for older children has been conducted managing developmental difficulties (Bhatia &in Nigeria. This study evaluated the screening Joseph, 2000; Figueiras et al., 2003; Kalra, Seth &properties of the Children’s Behaviour Question- Sapra, 2005; Lian et al., 2003). The North Carolinanaire (CBQ) and the Reporting Questionnaire for Assuring Better Child Health and DevelopmentChildren (RQC) in an urban primary care setting. (ABCD) project, which successfully implementedIt showed that the two instruments were equally developmental monitoring in a community in theable to differentiate children with a specific psy- United States, may be a useful model for similarchiatric disorder from those without. While the efforts in developing countries (Earls & Hay,CBQ was able to differentiate between conduct and 2006). The roadmap developed for this projectemotional disorders, the RQC had the advantage shows how health providers in a clinic can workof being relatively short (Omigbodun et al., 1996). as a team to: (1) assess current protocols and prac- As stated by Weitzman & Leventhal (2006), tices in developmental monitoring, (2) identify“health care settings have the potential to be a “clinician champion” in the clinic to maintainan optimal environment to address behavioral the initiative as a priority, (3) study in detail howhealth concerns due to the frequent contact and developmental monitoring can be implementedtrusted relationship many families have with in the clinic, (4) map the workflow, (5) identifytheir health providers. There is new evidence that outside support systems (such as community-behavioral health monitoring can be thoughtfully based rehabilitation programmes), (6) plan staffimplemented and that system change around the orientations, making sure that all staff take part indetection of behavioral health problems is possi- the monitoring process, and (7) develop a methodble.” Health systems in LAMI countries may also of collecting and sharing process and outcomechoose to broaden their potential and incorporate data at regular intervals.the monitoring of the social–emotional develop-ment of infants and young children into their An example from a developing countryhealth care practices. The Guide for Monitoring Child Development6. How could health systems implement (GMCD) was designed in Turkey to address the developmental monitoring? need for methods to monitor the developmentHealth systems that aim to detect developmental of children in developing countries. Research indifficulties early will need to identify the best Turkey has assessed the inter-rater reliability andapproaches to implementing regular developmen- validity of the instrument in comparison with thetal monitoring during routine health care services Bayley Scales of Infant Development, 2nd editionat community clinics. Developmental monitoring (Ertem et al., 2008). A large multicountry study,will need to be implemented on a broad basis for supported by the United States National Instituteall children, and must be sustainable. Information of Health (NIH), on the international standardiza-is needed on three aspects of implementation and tion, validation and efficacy of the GMCD is undersustainability: (a) strategies used by community way in Argentina, India, South Africa and Turkey.clinicians to incorporate routine developmental The conceptualization and administration of themonitoring into health services; (b) whether the GMCD are summarized below.introduction of a specific instrument or train-ing programme into community health centres 47
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD1. Conceptualization of the GMCD service, which can be seamlessly linked to sys-The GMCD is a practical method that aims to tems for promotion of child development and forintroduce concepts of developmental monitoring prevention and management of developmentaland early childhood development into health care difficulties. delivery systems in developing countries. The 2. Administration of the GMCDGMCD has been constructed along similar linesto the WHO/UNICEF Care for Child Develop- The GMCD provides a method for developmentalment Intervention, which was summarized in monitoring and early detection of developmentalChapter 5. Health care providers can use these difficulties that is easy for health care providerstwo methods in conjunction to monitor a child’s to learn and apply during a health encounter.development, using a family-centred approach, The GMCD is an open-ended, precoded,and can counsel the caregiver on how to promote 10-minute interview with the primary caregiverthe child’s development. The GMCD training of a child aged under 42 months. The interviewalso includes a component on management of technique:developmental difficulties, which aims to enable ● builds on patient-centred communicationhealth care providers to: (a) determine the causes techniques in medicine (Boyle, Dwinnell &of developmental difficulties, (b) prevent potenti- Platt, 2005; Teutsch, 2003);ating risks factors, (c) identify protective factors,and (d) provide feedback to the caregivers on how ● is based on the fundamental principles ofto manage the difficulties, including giving refer- human communication and recall of informa-rals for other assessments or services. tion (Fisher & McCauley, 1995); The GMCD uses three frameworks. First, thetheoretical framework of the GMCD is based on ● catalyses communication between cliniciansthe ecological and transactional conceptualiza- and caregivers, while obtaining an overviewtions of child development (Forsyth, 2000; 2003), of the child’s development;family-centred child health care (Forsyth et al., ● avoids “socially desirable” answers and1996), and relationship- and strengths-based assumptions about what the child should bedevelopmental assessment (Wirz et al., 2005). In doing andthis approach, child development is understood,supported and managed in partnership with the ● is designed to be as culturally neutral as pos-family and community. Health care providers sible.and policy-makers are consulted to identify thecommunity’s strengths, challenges, specific needs Caregivers are first given an explanation of theand services and to build partnerships. Second, reason for the interview and their interest andthe GMCD model views child development during cooperation are elicited.the early years as a component of the life cycle The questions to be asked when administeringapproach (described in Chapter 4), which begins the GMCD, together with the milestones for twobefore conception and continues throughout the of the age ranges, are shown in Table 2. The firstlife course. The training on the GMCD emphasizes question is adapted from Glascoe’s Parent’s Evalu-possible interventions through the health care ation of Developmental Status (PEDS) (Glascoe,system, for example preconceptional interven- 2002) and seeks to identify parental concerns.tions such as family planning. Third, the GMCD If the caregiver expresses concerns, these areincludes functional development, so that the explored further before moving on to the otherchild’s health and development can be addressed questions. If the caregiver does not have concerns,within the framework of the WHO International the clinician explains the importance of obtainingClassification of Functioning for Children and a portrayal of the child’s typical functioning andYouth (Lollar & Simeonsson, 2005). Health care asks the open-ended questions 2–7. If necessary,providers trained in using the GMCD can obtain prompts may be used to explain the questions.information that can be applied to the WHO The seven questions are related to the followingICF model, which describes children’s health developmental domains: (1) caregiver concerns inand well-being in terms of four components: (1) any area of development, (2) expressive language,body structures, (2) body functions, (3) activi- (3) receptive language, (4) fine and gross motorties, and (4) participation. The GMCD, therefore, functions, (5) social–emotional and relationalis not merely a screening test, but a system for functions, (6) play, and (7) self-help skills (for chil-monitoring child development within the health dren older than 12 months). The GMCD does not 48
  • CHAPTER 6. EARLY DETECTION OF DEVELOPMENTAL DIFFICULTIESTable 2. Questions to be asked when administering the GMCD and examples of functional milestones Functional milestones at age: Developmental domain and interview questions 6–7 months 8–10 months 1. Concerns. “By “development”, I mean learning, understanding, communicating, relationships, behaviour and emotions, how your child uses her fingers and hands, legs and body, hearing and vision. Do you have any concerns about your child’s development in any of these areas?” 2. Expressive language and Makes “ga, gu, da, bı,” sounds Repeats syllables like “da-da” communication. “Tell me about how your (joins vowels and consonants). Uses gestures like shaking head in child communicates. How does she let you protest know when she wants something?” 3. Receptive language. When caregiver speaks, child Understands repeated simple “Tell me examples of what she can listens, looks at her mouth words like “mummy”, “no”. understand when you talk to her?” Recognizes and prefers caregiver’s voice Responds with sounds when talked to 4. Fine and gross motor functions. Reaches with hands. Transfers objects from hand to What does [child’s name] do with her hands hand Holds on to toys or objects and fingers, and with her legs and body?” Picks up small objects, like raisins Sits with support Rolls from front to back Bears weight on legs Sits without support 5. Relationship (social-emotional). Recognizes caregivers, reaches Reacts when mother leaves “Tell me about your child’s relationships with to them, smiles, inspects their May turn away from strangers in people she knows. What about strangers? faces anxiety, caution, shyness or fear How does she relate to them?” 6. Play (social-emotional, cognitive). Regards hands Inspects toys with curiosity “I’d like to learn about how she plays. Can you Shakes objects Throws, bangs toys, objects give me some examples?” Responds to “peek-a-boo” Looks for objects Plays “peek-a-boo” 7. Self-help skills. “What kinds of things can [child’s name] do for herself now, like eating or dressing?”have separate questions for the cognitive domain, assessment instruments: Denver II (Frankenburgas it is difficult for caregivers of young children et al., 1992), Vineland (Sparrow, Balla & Cicchetti,to describe cognitive skills separate from the 1984), Brigance Screening Test (Glascoe, 1996),above domains. Cognitive functions are involved Ages and Stages Questionnaire (Bricker et al.,in these domains, and the first question specifi- 1995), and Bayley Scales of Infant Development,cally asks if the caregiver has concerns about the 2nd edition (Bayley II) (Bayley, 1993), as well aschild’s learning. extensive interviews with caregivers of young The outcome of the monitoring is a form, com- children. The standard ages for attainment of theprising two tables, with the questions in the rows milestones were based on a prescriptive sampleand the age ranges in the columns. The age ranges of 505 healthy Turkish children aged 0–2 years.were selected to correspond to the health monitor- In two clinical samples, the inter-rater reliabilitying and immunization schedules recommended between medical students and a child develop-by WHO. The cells contain developmental mile- ment specialist, and the validity of the GMCDstones, constructed using five previously stand- administered during a health visit in comparisonardized and validated developmental screening or with a comprehensive developmental assessment 49
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOODwith the Bayley II, were examined. Inter-rater countries as an effective method for the earlyagreement, as measured by kappa, as well as detection of developmental difficulties.sensitivity, specificity, and positive and negative 3. The family’s active partnership during thepredictive values, was found to be above 0.84. monitoring process and a continuous relation- In conclusion, the GMCD is an innovative ship between the clinician and the family aremethod for monitoring child development that key to the early detection of developmentalis designed specifically for use by health care difficulties.providers in developing countries. Studies inTurkey have provided preliminary evidence for 4. Developmental monitoring must be compre-its reliability and validity. The training can be hensive and clinically relevant, so that multiplecompleted in three days; the training package aspects of the child’s health and developmentconsists of written materials, slides and demon- and the family’s needs and functioning arestration videos. Recently the GMCD has received taken into consideration, rather than just theboth national and international recognition. results of a screening test.All three components of the package have been 5. Conceptually contemporar y, clinicallyadopted by the Turkish Ministry of Health and appropriate, scientifically reliable and validUNICEF Turkey for use in a nationwide training instruments should be used for develop-programme on child development for primary mental monitoring, rather than non-stand-health care providers. There is growing interest ard approaches. The “prescriptive sample”among clinicians and researchers from Algeria, approach of the WHO should be used toAustralia, Eritrea, Georgia, India, Pakistan, South develop standard reference values. WhetherAfrica and Zambia in using the GMCD training in each new instrument needs to be restandard-the early detection and management of children ized for every population is a question thatwith developmental difficulties. needs to be addressed. 6. Screening for identifiable and treatable condi-Conclusions and implications tions, such as iron deficiency, hearing loss, andfor action metabolic, genetic, infectious or other disorders1. The DDEC Survey found that standardized should be integrated into developmental moni- methods for the early detection of developmen- toring. tal difficulties are not widely used. 7. The early detection of developmental difficul-2. Developmental monitoring, using a family-cen- ties should allow a seamless transition to ser- tred, comprehensive approach during health vices that will support the child’s development care encounters, is used in many high-income when needed. 50
  • 7 Chapter Developmental assessment of young children dren may be evaluated by one or a few clinicians DDEC Survey results with backgrounds in one of these disciplines. The In the DDEC Survey, questions 15 and 16 discrepancy between developing and developed were specifically related to developmen- countries may dishearten clinicians working in tal assessment (see Annex 1). In most such resource-poor settings. It may appear that, countries, the paediatrician or community because of the limited number and variety of cli- health provider conducted a developmental nicians available, “state of the art” developmental assessment and diagnosed developmental assessments cannot be conducted. The principles difficulties. Similarly, in most countries, the of developmental assessment, however, can be paediatrician decided which kinds of early successfully applied by any experienced clinician intervention or rehabilitation services the in any setting. On the other hand, when these children should receive. principles are not applied, even if many clinicians working in multidisciplinary teams conduct the assessment, the child and the family may not be fully understood and therefore not helped. A detailed description of a comprehensivePurpose of chapter and additional developmental assessment is beyond the scopekey references of this chapter. Readers are referred to an excel-A s described in Chapter 6, the early detec- lent book by Meisels & Fenichel (1996), two tion of developmental difficulties is possible renowned leaders in the field of early childhoodthrough developmental monitoring during health development. The book describes in detail mul-care encounters. Children with such difficulties tiple aspects of the guidelines for developmentalshould then be comprehensively assessed to assessment. Key components of family-centredestablish a diagnosis and ascertain their level of assessment can also be found in books on earlyfunctioning, in order to determine their needs intervention by Guralnick (2005a) and Shonkofffor additional support and services and to enable & Meisels (2000).them to obtain such services. This chapter pro-vides information on the basic principles of the Conceptualizationdevelopmental evaluation of young children with As a summary of contemporary visions for devel-suspected developmental difficulties. The inten- opmental assessment, ten key components havetion is to provide information on the types of been distilled from multiple sources.developmental assessment that are desirable andhow to begin the process of building infrastruc- 1. The assessment should be based on theture for such assessments. principles of family-centred care. “Family- Often in developed countries, teams of clini- centred” means that the family or caregiverscians with various backgrounds evaluate the of the child and the professionals who arechild and the family. These clinicians may have a conducting the evaluation are partners inbackground in developmental–behavioural paedi- the evaluation (Committee on Hospital Care,atrics, paediatric neurology, child psychiatry, early American Academy of Pediatrics, 2003).intervention, child pyschology, child development, The family provides information about theaudiology, speech therapy, special education, child’s functioning, strengths, vulnerabili-occupational therapy, physical therapy and reha- ties and needs for support, as well as theirbilitation, ophthalmology, orthopaedics or clinical own concerns, needs and what they havegenetics. In countries with fewer resources, chil- accomplished and how. The consulting pro- 51
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD fessional conducts the evaluation together be addressed. Asking about concerns also with the family, providing the expertise to enables the clinician to determine how well help the child and family recognize their the caregivers have observed the child and strengths and areas of need, and suggesting what is important to them in their child’s interventions that could help the child reach development. When caregivers share their an optimum level of functioning. Results of concerns with the clinician, this can serve the assessment are not “given” to the car- as a starting-point for providing feedback. egivers; on the contrary, the assessment is a 4. The clinician should obtain a detailed process during which the caregivers and the developmental history, so that risks and clinician discover the results together. The protective factors in the life of the child and reason for the assessment, the details of how the family and the child’s past progress or the assessment will be carried out and the deterioration can be determined. Ideally, role of the caregivers as partners in the assess- the history should begin from the childhood ment should be shared with the family. The of the caregivers and their upbringing, and key elements of family-centred assessment should include all relevant information about can be defined as respect for the capacity of the child and family, their past and present the child and family and humility about the functioning, and future aspirations. process of helping them. In this process, the most effcetive clinician, regardless of profes- 5. Observations of the child’s interactions sion or background, is the one who knows with his or her caregivers are fundamental that he or she is learning together with the to the developmental assessment. More family, that answers lie within the strengths important than standardized testing, obser- of the child, the family and the community, vations of the child in a free-play environ- and that his or her role is to help the family ment will provide invaluable information on recognize and use these strengths in a sup- functional development. portive and caring assessment process. 6. Information on the nurturing and stimula-2. The assessment should be comprehensive tion provided in the home environment and and include all aspects of the child’s devel- daily life of the child is indispensable. If opment. The assessment should incorporate: this part of the evaluation can be conducted physical health, growth, vision and hearing, in the home, it will provide the most reli- and special laboratory tests that may be war- able and valid information about the child’s ranted to detect biological causes of devel- development. In many countries, home visits opmental difficulties (particularly anaemia, by health care providers are well accepted. In malnutrition and chronic infections in LAMI many early intervention programmes around countries). The family’s composition, physical the world, health clinicians are trained to and mental health and functioning, social conduct a home visit, which includes an support systems within the larger family or interview with caregivers and observations community, and the nurturing and stimula- of the child and family in a natural setting. tion provided in the home environment are If a home visit is not possible, the assessment crucial elements of the assessment. Further- should at least include questions related to more, the clinician should explore what the the daily life of the child and how the child caregivers have already done to support the is cared for, nurtured and stimulated in the child’s development, what they understand home. The interview should also give caregiv- about the specific needs of the child, their ers a chance to discuss their perceptions of concerns, fears, hopes and desires, and their the caregiving. For example, the clinician can knowledge of community resources. ask whether caregivers think that the child is getting enough nurturing and stimulation3. Identification of caregiver concerns should or whether they have concerns. form a crucial component of the interview. A review of caregivers’ concerns provides an 7. Identification of the social supports of the important starting-point for developmental caregivers and family is also an important assessment. If caregivers raise concerns, the element. The support systems that the family clinician will need to observe these areas has – or does not have – may be key factors in of development in more detail during the determining whether the family will be able assessment, and caregivers’ questions should to enhance the child’s development. 52
  • CHAPTER 7. DEVELOPMENTAL ASSESSMENT OF YOUNG CHILDREN8. The mental and physical health of the 10. The developmental assessment of the child caregivers is key to the development of should be seamlessly linked with interven- the child. It should be determined in every tions to address developmental difficulties. developmental assessment. In fact, the assessment should be viewed as the first component of an intervention. Infor-9. Formal developmental assessment instru- mation on what the family has already tried, ments provide a structure for the interac- the services and treatments that they have tions between the clinician and the child sought, their expectations of other interven- and family. The child and family will obtain tions, and their level of information on how most benefit from these instruments if they to access services should be determined. The are used to identify the child’s and family’s clinician should identify, in conjunction with strengths and the areas of development that the family, the kinds of services the child need support. The clinician should not rely and family need and what is available in the on developmental screening tests (such as community. If necessary, additional resources those listed in Chapter 6). Such tests are should be sought together with the family. designed to detect developmental difficulties early but not to provide in-depth information The above guidelines highlight the core princi- about functioning or areas that need support. ples of developmental assessment. The clinician More detailed assessment instruments and conducting the assessment – regardless of his or techniques which are explained in the next her background – should be trained in the core section needed. principles of child development and family-cen- tred care and experienced in clinical therapeutic Regardless of the technique, the key principle practices. The assessment is best conducted using in applying instruments is to use them within a “transdisciplinary” model (Magill-Evans, Hodge a family-centred framework. If instruments are & Darrah, 2002). In this model, one clinician used mechanically, in a testing environment, takes on primary responsibility for the child by an examiner who does not know the child and family. This clinician, working across disci- and whom the child and family do not know, plines, can then seek information about specific the testing will often be meaningless. Instru- aspects of the child’s or family’s difficulties by ments should be used in the presence of the consulting written materials or experts in related caregiver and with his or her assistance. The disciplines. The transdisciplinary approach is fine and gross motor, cognitive, language and regarded by many child development specialists social–emotional skills of a young child may as more appropriate than the multidisciplinary be important at the time of evaluation. Equally model, where the child and family may feel con- important, however, are functions that will fused because they have to deal with multiple enable the child to develop further. Together experts with whom they do not necessarily have with the caregiver, the clinician can use stand- a relationship of trust. The transdisciplinary ard test objects and play materials to obtain an approach is also likely to be more appropriate understanding of, for example, attention span, for LAMI countries, where there are few trained engagement with people and objects, interest professionals. in the environment, capacity to initiate inter- actions and play, engagement in purposeful interactions and behaviour, problem-solving Research in LAMI countries skills, temperament, curiosity, and ability to Assessment processes deal with frustration and regulate emotions. There have been very few studies of the process Developmental test scores can be useful for of developmental assessment in developing coun- research purposes, to provide means and tries. An important study in South Africa in the standard deviations for samples and popula- 1990s shed light on the importance of family- tions. However, they are often not meaning- centred assessment (Venter, 1997a). Before and ful when applied to individual children in a after their first visit to a neurodevelopmental out- clinical context. The clinician should be able patient clinic, caregivers were interviewed about to interpret test scores for the family, avoid- their understanding of their child’s disability and ing any negative consequences of using such their expectations of the service offered at the scores, such as the stigmatization of children clinics. Before the consultation, the majority of with “suboptimal” scores. caregivers had a fair understanding of the child’s 53
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOODfunctional problems and the short-term complica- A study in Zimbabwe indicated that caregivertions. Surprisingly, after the consultation, levels of concerns, such as social stigmatization, feelingsunderstanding were reported to have decreased of isolation and emotional pain, take precedencesignificantly. Caregivers, however, had a signifi- over the child’s difficulties in the initial assess-cantly improved understanding of the etiology of ment (House, McAlister & Naidoo, 1990).the problem, while their understanding of long- Two studies, in the Libyan Arab Jamahiriyaterm complications did not differ significantly and Turkey, demonstrated the importance of abefore and after the consultation. comprehensive evaluation. In the Libyan Arab In a more recent study in Israel (Lavi & Jamahiriya, many children with cerebral palsyRosenberg, 2005), parents whose children first were found to have undiagnosed and unaddressedreceived a diagnosis of mental retardation, autism cognitive developmental difficulties (Khan, 1992).or pervasive developmental disorder (PDD), cer- The Turkish study revealed that neuroimagingebral palsy, or genetic syndromes were asked for techniques and genetic and metabolic testingfeedback on their experience in being informed could identify the causal factors in 43% of chil-of their child’s disability. A self-report survey dren with significant developmental difficultiesquestionnaire was mailed to the caregivers, to be (Ozmen et al., 2005). This was a tertiary-carecompleted anonymously. Questions were based sample of children with severe difficulties. Iton a survey of the literature and focused on the should be noted that tertiary-care-based labora-setting of the meeting, its contents, staff behav- tory techniques, when conducted indiscrimi-iour, and parents’ satisfaction with the meeting; nately, will often not identify causal factors forinformation on background characteristics of developmental difficulties in young children inthe family and child was also obtained. Approxi- LAMI countries. It is more important to determinemately two-thirds (63%) of respondents reported the causes of treatable underlying disorders, sucha high level of satisfaction with the meeting at as understimulation in the home environment,which they first heard the diagnosis. Content malnutrition, anaemia, chronic infections oranalysis of open questions and statistical analysis infestations, and hearing loss due to otitis media.of correlations between satisfaction and a series of There is very little information from devel-potential predictors pointed to three main areas oping countries on the role of clinicians fromthat affected parental satisfaction. different disciplines. The role of psychologists has been emphasized in one report from a child1. The amount and type of information conveyed. development centre in Israel (Tirosh, Amit & Parental satisfaction was higher when detailed Harel, 1999). information was provided about a number of Similarly, research is greatly needed in devel- issues (diagnosis, treatment options, educational oping countries on how to improve the under- settings, rights for benefits and assistance etc.), standing of caregivers of the implications of a when parents were referred to additional sources developmental assessment. In one innovative of information, and when the clinician was seen approach in England, for example, parents were to be knowledgeable and confident. given a videotape summary of their child’s assess-2. Attitudes of staff regarding the child’s condi- ment. This method was favoured by 89% of Urdu- tion. Parental satisfaction was higher when and Punjabi-speaking (immigrant) parents and the child’s strengths (and not only problems) 43% of English-speaking parents. The method, were addressed, when the general tone was not however, did not lead to improved recall of the pessimistic and hope and optimism were also summary’s content six weeks later (Ilett, 1995). conveyed, and when expected and possible future developments were specified. Assessment instruments3. Staff approach to the parents. Parental satis- Instruments for developmental assessment take faction was higher when staff were attentive much more time and resources to develop, adapt and empathic, when they clearly expressed and standardize than instruments for develop- willingness to accompany and assist the family mental screening or monitoring. As a result, very over time, when they were respectful towards few assessment instruments have been developed the parents and related to them as equal part- and standardized in developing countries. Table 3 ners, and when parents felt that they had been lists a number of instruments that can be used to informed of the diagnosis without delay and assess components of development together with that no information had been withheld. published research using these instruments in 54
  • CHAPTER 7. DEVELOPMENTAL ASSESSMENT OF YOUNG CHILDRENTable 3. Examples of instruments for developmental assessment and related research in developing countries Component of Instruments that can be used Research from developing countries assessment to assess the component using these instruments Comprehensive Diagnostic Instrument for Children Ethiopia (Ashenafi et al., 2000, 2001) developmental interview and Adolescents (DICA) Nurturing and stimulation Home Observation for Bangladesh (Black et al., 2007) in home environment Measurement of the Environment Brazil (Andrade et al., 2005) (HOME) (Bradley & Caldwell, 1977) United Republic of Tanzania (Mbise & Kysela, 1990) Supplement to the HOME for Impoverished Families (SHIF) (Ertem et al., 1997) Family competence and Family Support Scale China (Ngai, Wai Chi Chan & Holroyd, 2007) social support Parent Needs Survey (Seligman & Benjamin Darling, 1989) Parenting Stress Index (Abidin, 1983) Caregiver mental health Edinburgh Postnatal Depression Bangladesh (Black et al., 2007) Scale (EPDS) Islamic Republic of Iran (Montazeri, Torkan & Omidvari, 2007) China (Lee et al., 1998) UK-based South Asian women (Downe, Butler & Hinder, 2007) South Africa (Lawrie et al.,1998) Functional development Non-structured play Egypt (Wachs et al., 1993) PEDI Turkey (Erkin et al., 2007) Vineland Scales of Adaptive Singapore (Agarwal et al., 2005) Behavior Indonesia (Tombokan-Runtukahu & Nitko, 1992) Cognitive development Bayley Scales of Infant Israel (Horowitz et al., 1977) Development, Bayley II or Bangladesh (Black et al., 2007, Hamadani et al., Bayley III 2002; Khan et al., 2006) India (Chaudhari et al., 1990, 1995) Brazil (Andrade et al., 2005, Eickmann et al., 2007; Grantham McGregor et al., 1998) Chile (Castillo-Durán et al., 2001; Vega et al., 1999) Bolivia (Bender et al., 1994) United Republic of Tanzania (McGrath et al., 2006) Nigeria (Aina & Morakinyo, 2005) Kenya (Bhargava, 2000; Neumann et al., 1991; Whaley et al., 1998) Uganda (Drotar et al.,1999) Zimbabwe (Wolf et al.,1997; 1999) South Africa (Cooper & Sandler, 1997) Ethiopia (Aboud & Alemu, 1995; Kirksey et al.,1994; Young et al., 1982) Language development Reynell Language Development China, Hong Kong SAR (Au et al., 2004) Scales (Reynell, 1979) China (Chu et al., 2006) Symbolic Play Test (SPT) (Lowe and Costello, 1976; Udwin & Yule, 1982) Instruments for children Reynell-Zinkin Scales (Reynell, Bangladesh (Khan et al., 2006) with visual difficulties 1979) 55
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD A pilot study aimed to determine whether the original norms of the Miller Assessment for Preschoolers (MAP) could be used in Israel. This scale is used to evaluate preschool children with suspected problems. No significant differences were found between the Israeli sample and the US standardization sample on the MAP total score. Israeli children, however, performed below US norms on the Foundations Index, a component of the MAP that assesses abilities involving basic motor tasks and the awareness of sensations (Schneider et al., 1995). Studies in many different countries have usedComprehensive assessment requires providers trained inearly childhood development: children assessed by Child assessment instruments, such as the Bayley ScalesDevelopment Aide, India. Photo: Dr. Vibha Krishnamurthy of Infant Development, with United States norms. In India, considerable research has been con-populations from developing countries. Although ducted to develop instruments for developmentalthere have been a number of studies, the most assessment and screening (Chaudhari, 1996). Theinformative component of the assessment – the Bayley Scales of Infant Development have beendevelopmental interview – has received little adapted and are referred to as the Baroda normsattention. Ashenafi et al. (2000, 2001) used the (Phatak et al., 1991).Diagnostic Instrument for Chidren and Adoles- A multifaceted developmental test of cognitivecents (DICA) to assess developmental and psy- skills was constructed in India, modelled on thechosocial problems in children. Most research, Bus Puzzle Test (Egan & Brown, 1984). Pilot-testshowever, has focused on assessment of cognitive in Rajasthan examined a simple ethnic modifica-and motor development, usually using the Bayley tion of the original test, development of moreScales of Infant Development. socioculturally appropriate scenes, a detailed sta- Whether instruments for developmental tistical procedure of item analysis and reliabilityassessment need to be restandardized for each studies. The picture was converted into a woodenpopulation remains an open question. Given insert puzzle, called the Indan Picture Puzzle Testthat the person conducting the evaluation has to (IPPT) and standardized using a random samplehave intense training, and that most instruments of 616 children. The IPPT assesses aspects of earlytake at least an hour to administer and require language, picture interpretation, performancespecial conditions (such as toys and a soundproof skills and conceptual development in childrenroom), the restandardizing process is a time- aged 2–5 years (Singhania & Sonksen, 2004).and resource-consuming process. Furthermore, The Developmental Profile II (DP II) assessesas happened with the Bayley II and III, newer developmental status from birth to 9½ yearsstandardizations may be released from developed in five domains – physical, social, self-help,countries before assessment instruments can be academic and communication (Alpern, Boll &standardized in developing countries. Shearer, 1986). The DP II has been used in India Another important question is whether devel- and shown to be effective in comparing develop-oping countries should allocate resources to devel- mental functioning of autistic and non-autisticoping their own assessment instruments. Using children (Malhi & Singhi, 2002).the norms developed in other countries should Studies in Bangladesh (Black et al., 2007),not constitute a major problem for research that Brazil (Andrade et al., 2005) and the Unitedaims to: (a) measure differences in developmental Republic of Tanzania (Mbise & Kysela, 1990) usedscores between groups of children, such as pre- the Home Observation for Measurement of themature infants and term infants or intervention Environment (HOME) scale to measure the effectand control groups; (b) measure changes over time of the nurturing and stimulation provided in thein a group of children. The question of whether home environment on child development. Devel-restandardization will be necessary becomes oped in the United States in the 1970s (Bradley &important and relevant if the research aims to: (a) Caldwell, 1977), the HOME scale has been onecompare children’s development scores between of the most widely used instruments to measurepopulations; (b) interpret scores in terms of what the environmental component of the transactionalconstitutes developmental delay. model of child development. The Supplement to 56
  • CHAPTER 7. DEVELOPMENTAL ASSESSMENT OF YOUNG CHILDRENthe HOME for Impoverished Families (SHIF) has the scores of some functional skills and caregiverbeen shown to be more effective in measuring the assistance scales. The level of parent education“lower” end of poverty, stimulation and nurtur- did not have a significant impact on the results.ing when used in impoverished populations in Further research is needed to determine whetherdeveloped countries. The SHIF may also be an functional measures need to be restandardized forimportant addition to the HOME for assessing every population.nurturing and stimulation in developing countries Very few studies have used quality of life meas-(Ertem et al., 1997). ures for young children in developing countries More functional aspects of development, such (Shek & Lee, 2007). A study in China, Hong Kongas adaptive functioning and play, quality of life Special Administrative Region, using the Chineseof the child, and aspects related to the home Pediatric Quality of Life Inventory (PedsQL)environment or family have been less commonly found that overall well-being and psychosocialassessed. Instruments for the measurement of health scores were significantly lower in childrenfunctional skills in young children with develop- with developmental difficulties (Lau, Chow &mental difficiulties have recently been reviewed in Lo, 2006).detail (Msall, 2005). The following were included There has been very little research in develop-in the review: the Infant and Toddler Quality of ing countries on instruments to assess children’sLife Questionnaire (ITQOL), the Netherlands language. In one study in China, the SymbolicOffice of Prevention Assessment of Preschool Play Test (SPT), which is used to assess languageQuality of Life (TAPQOL), the Health Status Clas- skills (Lowe & Costello, 1976; Udwin & Yule,sification System-PreSchool (HSCS-PS), the Pedi- 1982), was modified for use with Chinese childrenatric Evaluation of Disability Inventory (PEDI), (Chu et al., 2006). In another study in China,the Vineland Adaptive Behavior Scale (VABS), the Hong Kong SAR, both the Reynell DevelopmentWarner Inventory of Developmental and Emerg- Language Scales (Reynell, 1979) were shown toing Adaptive and Functional Skills (Warner IDEA- be appropriate for use with Cantonese-speakingFS), the Scales of Independent Behavior Revised young children (Au et al., 2004).(SIB-R) Early Development Form, the Pediatric Similarly, very few studies have used instru-Functional Independence Measure (WeeFIM), and ments for the developmental assessment ofthe Pediatric Quality of Life Inventory Version 4 visually impaired (Khan et al., 2006) or hearing-(PedsQL 4.0). The PEDI has been widely used, for impaired children (Olusanya, 2007; Olusanya &example in the United States (Haley et al., 2004), Newton, 2007).Sweden (Odman, Krevers & Oberg, 2007), theNetherlands (Custers et al., 2002; Vos-Vromans,Ketelaar & Gorter, 2005), Norway (Dolva, Coster Conclusions and implications& Lilja, 2004; Ostensjo et al., 2006) and China for action(Province of Taiwan) (Yang et al., 2003). Research 1. The DDEC Survey found that developmentalusing this instrument in developing areas has difficulties in young children were assessed,been limited to Turkey (Erkin et al., 2007), Slo- diagnosed and referred for services mostly byvenia (Srsen, Vidmar & Zupan, 2005) and Puerto paediatricians and primary health care provid-Rico (Gannotti & Cruz, 2001). The Turkish study ers.showed that the translated form of the PEDI hadgood internal consistency and reliability. Both the 2. Although LAMI countries may not have thestandardization study in Slovenia and the valida- infrastructure and resources for multidisci-tion study in Puerto Rico, however, suggested plinary evaluations, such as are conductedthat there were significant differences between in many high-income countries to diagnosecultures in their understanding and demonstra- developmental difficulties, the family-centredtion of functional skills. In particular, caregiver principles of a developmental assessment canassistance scale scores in Slovenia were different be adapted for use around the world.from the American normative data, particularly 3. Research on developmental assessment inin the youngest age group. Slovene children were LAMI countries has generally been restrictedconsistently found to be different from American to use of various instruments. The most fre-children at comparable ages (scoring either higher quently studied aspect has been instrumentsor lower) in several functional skills and caregiver for assessment of cognitive development. Aassistance scales. The studies also confirmed the range of key concepts have also been studiedinfluence of gender and the presence of siblings on in LAMI countries to a limited extent. These 57
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD are: the developmental interview, assessment of nurturing and stimulation in the home environment, family competence and social support systems, family mental health, func- tional development of the child, and language development. There is a great shortage of research on assessment using the developmen- tal interviewing, social and emotional, and functional assessments.4. There is a need to develop universal systems and guidelines for developmental assessment that are anchored in current scientific informa- tion and conceptualizations of child develop- ment. 58
  • 8 ChapterInternational classifıcation systems for developmental difficulties in young children Purpose and scope of the chapter andDDEC Survey results additional key resources TQuestion 17 of the DDEC Survey asked his chapter summarizes the systems that canwhat eligibility criteria were used for be used to classify developmental difficultiesyoung children to receive early intervention in young children. Three well known systems willservices. Approximately half of the countries be summarized: the International Classification ofhad such criteria. The most commonly used Diseases (ICD), and the International Classifica-criteria were: a non-standard disability score tion of Functioning, Disability and Health (ICF),or percentage of disability, a diagnosis of both published by WHO (2004, 2001b); and thedisability, IQ score, or a documentation of Diagnostic Classification of Mental Health anddevelopmental delay. In only one country Developmental Disorders of Infancy and Earlywas the WHO manual on community-based Childhood: revised edition (DC: 0-3R), developedrehabilitation (Helander, Mendis & Nelson, by Zero to Three (2005). Readers are also referred1989) being used as the criteria for entry to other key reviews on classification systems forinto early intervention services. child health and development (Msall, 2005; 2006;Question 12 of the DDEC Survey asked Simeonsson, Scarborough & Hebbeler, 2006;respondents to name classification systems Stein & Silver, 1999).used in their country by health careproviders responsible for diagnosing or Conceptualizationdetermining the presence of developmentaldifficulties in young children. In the Classification systems can be useful in four areasvast majority of countries, classification of early childhood development: (a) formulationsystems were not routinely used in these of clinical information, (b) research, (c) policy andcontexts. The International Classification (d) advocacy. Classification systems define theof Diseases (ICD 10 or ICD 9) was being components of clinical assessment, summarizeused in four countries, and the International and highlight the relevant aspects of the clinicalClassification of Functioning, Disability information that has been obtained, as well asand Health (ICF) and the Diagnostic information that is missing, and allow informationand Statistical Classification of Mental to be shared between clinicians. The clinical useDisorders (DSM-IV) were each being used of a classification system may be overlooked, asroutinely in three countries. clinicians often have a “sense” of the diagnosis and may be reluctant to attach a name and label, par- ticularly for young children whose development is constantly evolving. Classification systems can be meaningful for clinicians, as a means of linking their individual patients with general scientific information, and of communicating with other professionals through a common language related to the etiology, epidemiology, prognosis and treat- ment of disorders. Classification systems may also be useful for systematizing clinical concepts, and assessing and formulating previously overlooked areas of child development (Emde & Wise, 2003; Jakob et al., 2007). 59
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD For research pur poses, inter nationally The Diagnostic Classification of Mentalendorsed classifications can help formulate Health and Developmental Disorders ofresearch questions, and allow research data to be Infancy and Early Childhoodgathered, stored, analysed, retrieved and inter- The need for the DC: 0-3 stemmed from the inad-preted (Jakob et al., 2007). equacy of the Diagnostic and Statistical Manual Policy-makers and advocates may also find of Mental Disorders (DSM) in addressing devel-classification systems useful for determining opmental and mental health difficulties duringwhich children need services, monitoring the infancy and early childhood (Zero to Three, 2005).kinds of services received by groups of children There have been five revisions of the DSM since itwho fall within certain classifications, and advo- was first published in 1952. The last major revisioncating for additional services. was DSM-IV (American Psychiatric Association, Historically, WHO has been the prime instiga- 1994) further “text revision” DSM-IV-TR was pro-tor of international health classification systems. duced in 2000 (American Psychiatric Association,The Family of International Classifications 2000). The DSM-V is currently in preparation, and(WHO-FIC) is a set of classification products is due for publication the near future. The DSM-IVthat may be used in an integrated fashion to is a categorical classification system. The catego-compile and compare health information, nation- ries are prototypes, and a patient with a closeally and internationally. The main systems are approximation to the prototype is said to have thatreference classifications, which cover the main disorder. Each category of disorder has a numericalparameters of the health system, such as death, code taken from the ICD coding system, which isdisease, functioning, disability, health and health used for health service administrative purposes,interventions. WHO reference classifications including insurance, as well as research.have received broad international acceptance The DC: 0-3 was published by Zero to Threeand agreement for use, and are recommended in 1994, as a systematic, developmentally basedfor international reporting on health. WHO has approach to classification of mental health anddeveloped two reference classifications that can developmental disorders in infancy and earlybe used to describe the health status of an indi- childhood. The purpose of the DC: 0-3 was tovidual at a particular point in time. These are provide a basis on which clinicians and research-the International Classification of Diseases, now ers could identify, assess and classify early child-in its 10th revision (ICD-10) (WHO, 2004) and hood disorders and develop appropriate treatmentthe International Classification of Functioning, interventions. The DC: 0-3 aimed to create a com-Disability and Health (ICF) (WHO, 2001b). The mon language among clinicians and researchersInternational Classification of Health Interven- to promote better understanding of the naturetions (ICHI) is still under development. Both the of early childhood disorders. The classificationICD and ICF can be used alone or in conjunction system is used by professionals around the world.(as recommended by WHO) to classify develop- It is rooted in both psychodynamic and psycho-mental status and developmental difficulties in analytical traditions, including developmental,young children. Neither of these systems, howev- family systems, relationship, and attachmenter, was specifically developed for young children. theories (Dunst, Storck & Snyder, 2006). WhileZero to Three, the main organization for young the DSM concentrates on pathology, the DC: 0-3 ischildren in the United States, has developed a unique in that it employs biopsychosocial and bio-system specifically to classify developmental and ecological models in axis II, the relational contextmental health disorders during infancy and early of the child, particularly the primary care-givingchildhood: the Diagnostic Classification of Mental dyad (see below). A revised version of DC: 0-3,Health and Developmental Disorders of Infancy DC: 0-3R, was published in 2005 (Zero to Three,and Early Childhood, revised edition (DC: 0-3R) 2005). In the years since its publication, DC: 0-3(Zero to Three, 2005). The strengths and the areas has become increasingly valued as a complementthat need improvement in each of these systems to the DSM and ICD classifications. It has beenare summarized below in a format that may be published in eight additional languages, increas-practical for clinicians, researchers, policy-makers ing its accessibility to clinicians around the world.and advocates. The DC: 0-3 aims to complement, but not replace, the DSM and has a similar multiaxial categorization. There are five axes, all of which are given equal weight in the diagnostic process: 60
  • CHAPTER 8. INTERNATIONAL CLASSIFICATION SYSTEMS FOR DEVELOPMENTAL DIFFICULTIES IN YOUNG CHILDREN Axis I. Primary diagnosis. Disorders in this axis and clinical research, more and more clinical are: post-traumatic stress disorder; depriva- concepts were introduced into the ICD, result- tion matreatment disorder, disorders of affect, ing in its current 10th revision (WHO 2004a). prolonged bereavement/grief reaction, anxiety An updating mechanism allows yearly updates disorders, depression, adjustment disorder, regu- and major revisions every 3 years. The revision lation disorders, sleep behaviour disorder, feeding process towards ICD-11 started in 2006, and behaviour disorder, disorders of relating and com- publication is expected by 2015. The ICD is used municating, multisystem developmental disorder. in systematic mortality registration in more than 117 countries and has been translated into over Axis II. Relationship classification. This axis exam- 40 languages. ICD-10 is used in many countries ines the behavioural quality of the interaction also for morbidity coding for reimbursement, between child and caregiver, the affective tone treatment and research. The classification can be of the dyad, and the psychological involvement viewed online in English and French at the WHO between them. Relationships are classified as over- website (http://www.who.int/classifications/icd/ involved, under-involved, anxious/tense, angry/ en/) and in other languages through the relative hostile, mixed, or abusive. The Parent-Infant national institutions. Relationship Global Assessment Scale (PIR-GAS) is used to rate the nature of the care-giving dyad. Axis III. Co-existing medical and developmental disor- International Classification of Functioning, ders. A diagnosis of developmental delay, malnu- Disability, and Health trition, infectious disease, neurological condition The ICF provides a unified and standard lan- or hearing or visual loss would be placed here. guage and framework for the description of Axis IV. Psychosocial stressors. This axis aims to health and health-related states of individuals. identify stressors and risk factors present in the It was previously the International Classifica- child’s environment and their overall effects on tion of Impairments, Disabilities, and Handicaps the child. Stressors may be predominantly acute (ICIDH), which was first published by WHO for or predominantly enduring, and the overall trial purposes in 1980. After systematic field trials impact may be diagnosed as mild, moderate, or and international consultations, the classification severe. was thoroughly revised and renamed ICF; it was endorsed for international use by the Fifty-fourth Axis V. Functional emotional developmental level. World Health Assembly in 2001. The ICF has This axis describes six capacities that contribute been translated into some 38 languages and can to the social and emotional development of the be accessed online in Arabic, Chinese, English, child: attention and regulation, forming rela- French, Russian and Spanish at the WHO website tionships and mutual engagement, intentional (WHO, 2001b). two-way communication, complex gestures and As described in the WHO overview (WHO, problem-solving, use of symbols to express 2001b), the ICF has two parts, each with two thoughts and feelings, and connecting symbols components that describe health status and logically and abstract thinking. well-being. The International Classification Part 1. Functioning and disability a) Body functions and structures of Diseases i. Body functions are the physiological functions The ICD categorizes diseases, health-related con- of body systems. These include mental func- ditions and external causes of disease and injury tions, sensory functions, voice and speech for use in compiling mortality and morbidity functions, and functions of the cardiovascular, statistics. The categories of the ICD are also use- haematological, immunological and respiratory ful for decision-support systems, reimbursement systems. ii. Body structures: are anatomical parts of the systems and documentation of medical informa- body such as organs, limbs, and their compo- tion (WHO, 2004). The ICD had its origins in nents. These include structures of the nervous the 19th century, stemming from the need to system; eyes, ears, structures involved in voice categorize diseases for public health purposes. and speech; structures of the cardiovascular, WHO has been responsible for the ICD since its immunological and respiratory systems; diges- 6th revision in 1948. With a need for comparabil- tive, metabolic, endocrine systems; structures ity at the international level in both public health related to the genitourinary and reproductive 61
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD systems; structures related to movement; skin Using the DC: 0-3R: Ayse does not have an axis and related structures. I, II, III or V diagnosis. Within the psychosocialb) Activities and participation. Activity is the execution risk factors of axis IV, she has risk factors listed of a task or action by an individual; participation is under: poverty, poor quality in early learning involvement in a life situation. Activities and par- environment, and a caregiver without education. ticipation include learning and applying knowledge, general tasks and demands (such as undertaking Using the ICF: Ayse is classified as having no single or multiple tasks, carrying out a daily rou- impairments in body functions and structures, tine), communication, mobility, self-care, domestic but severe restrictions in activities and participa- life, interpersonal interactions and relationships, tion, and severe barriers in environmental factors, major life areas (such as education and work life), i.e. basic care by adult and adequate food. community, social and civic life. Case B. Elif is a 12-month-old child hospitalized forPart 2. Contextual Factors severe malnutrition, iron-deficiency anaemia and zincc) Environmental factors: make up the physical, social, deficiency. The medical history reveals that Elif has and attitudinal environment in which people live and conduct their lives. These include products and been breastfed from the start. Her mother force fed her technology (such as food, drugs, assistive products after she refused to take supplemental solid foods. Elif and technology); natural environment and human is refusing to eat, is apathetic and uninterested in play. made changes to the environment; support and Her mother approaches her with anxiety and becomes relationships; attitudes; service systems and poli- very tense during feeding. cies. Using the ICD-10: Elif is classified as havingd) Personal factors: such as temperament, personal malnutrition and iron-deficiency anaemia and lifestyles, beliefs, desires. zinc deficiency.Within the ICF framework, impairments are Using the DC: 0-3R: Elif has an eating disorderproblems in body function or structure, such as in axis I; an anxious-tense relationship is classi-a significant deviation or loss. Activity limita- fied in axis II; Elif`s malnutrition and anaemiations are difficulties that an individual may have are under axis III; there are no risk factors inin executing activities; participation restrictions axis IV; Elif`s inadequacies in symbolic play areare problems an individual may experience in classified in Axis V.involvement in life situations. The ICF frameworkis all-inclusive, non-stigmatizing and compre- Using the ICF: Elif is classified as havinghensive. The ICF version for children and youth impairments in body functions and structures,(ICF-CY) has recently been derived from the ICF including malnutrition, anaemia and micronu-(Lollar & Simeonsson, 2005; WHO, 2007). trient deficiency. She is restricted in activities and participation because of her refusal to eat and her lack of interest in interactions and play.Application of classification systems An environmental factor causing difficulty is theThe following clinical vignettes are provided to anxious and tense relationship of her mother. Allconvey a better understanding of how the ICF, these components require intervention.DC: 0-3R and ICD-10 classify developmental Case C. Hakim is brought by his grandmother to adifficulties in young children. community-based rehabilitation centre. He is a 3-year-Case A. Ayse is a six-month-old child with normal old child with spastic paraplegia due to prematuritygrowth, physical health and age-appropriate develop- and intracranial haemorrhage. He is unable to bearmental milestones. When going to work in the fields, weight or crawl, but can sit up in his wheelchair. Heher mother leaves her in the care of her 12-year old uses his hands to play with a home-made rattle andsister. The mother returns to breastfeed but then goes can feed himself effectively with a spoon. Hakim usesback to work. For safety reasons, Ayse is not allowed two-word sentences to make his desires understood byout of her crib and the children do not leave the house his caregivers. He is often brought to the village playfor 10 hours during the day. Ayse is not failing to thrive area where his siblings and other friends wheel him toyet, but the family is becoming poorer and has limited participate in hide and seek and tag games.access to food. Using the ICD-10: Hakim has spastic paraplegia.Using the ICD-10: Ayse is classified as having Using the DC: 0-3R: Hakim does not have an axisinadequate parental supervision and control I or axis II diagnosis. On axis III he has spastic(Chapter XXI). paraplegia; on Axis IV he has a medical condition causing a stressor. Axis V is age appropriate. 62
  • CHAPTER 8. INTERNATIONAL CLASSIFICATION SYSTEMS FOR DEVELOPMENTAL DIFFICULTIES IN YOUNG CHILDREN been developed specifically for mental health and developmental disorders of young children. A cru- cial concept in child development, caregiver–child relationships, can be coded explicitly in axis II. DC: 0-3 R recommends that ICD codes be used for the area of physical health in axis III. The devel- opmental functioning of the child is also coded in axis III. This axis requires more development, however. Apart from mental disorders and social and emotional functioning, the developmental functioning, strengths and vulnerabilities of children cannot be explicitly coded. The ICD is a disease-oriented categorical system, which is more practical and requires less training than the other systems. The ICD has codes within Chapter XXI that can be expanded to include participation, caregiver– ICF-CY emphasizes activities and participation: child child relationships and the social environment. with polio in play, Mexico. © UNICEF/NYHQ1960-0008 The ICD, however, does not capture all the clini- cal information that is necessary to define and Using the ICF: Hakim is classified as hav- classify developmental difficulties. Furthermore, ing impairments in neuromusculoskeletal and healthy developmental functioning cannot be movement-related body functions (impairment classified using the ICD system alone. Cur- in lower half of body muscle power and tone due rently, researchers and advocates of the WHO to paraplegia) and impairment in central nerv- classification systems are recommending that ous system body structures, due to intracranial ICD codes should be used in conjunction with haemorrhage. He has complete difficulty in activi- ICF in the classification of childhood health, ties without caregiver and wheelchair assistance, disease, disability and functioning (Simeonnson, because he is unable to crawl or walk; other areas Scarborough & Hebbeler, 2006). of developmental activity are unaffected. He has The major advantage of the ICF system is that mild difficulty in participating in play, because he it has been designed to be used internationally, is often encouraged to participate by his caregiv- for people of all cultures and all ages, with any ers, siblings, and others in the community. The spectrum of health, disease or disability, strength environment does not present barriers, as he has or difficulty. Furthermore, the ICF is in complete access to caregivers who promote his physical and concordance with current theories of child devel- mental health, development and learning. They opment and bioecological theory. provide access to CBR, which is present in the There are many benefits of using the ICF sys- community, and he has technological assistance tem to classify developmental difficulties in young in the form of a wheelchair. children. The first is that the ICF model of human functioning and disability reflects the interac- tive relationship between health conditions and Strengths of the classification systems and contextual factors. As shown in Figure 5, similar areas that require improvement to the bioecological model of child development, As can be seen from the above examples, each ICF incorporates the role of environmental fac- classification system offers a different approach tors. Furthermore, the ICF uses non-stigmatizing, to classifying young children with developmental strengths-based language. difficulties. Table 4 summarizes aspects of child Another key point is that the designation “dis- development within the bioecological model and ability” is considered by the ICF as an umbrella shows how each system addresses these aspects. term, representing the dynamic interaction The functions related to the child have been between person and environment (Msall, 2006). conceptualized as physical health, mental health, In contrast to the traditional view that disability developmental status and participation. Contex- resides within the person, the ICF view is that dis- tual factors are caregiver–child relationships and ability is a social construct, involving an interac- the social environment. tion of the person with the community or society. The DC: 0-3 R has the advantage of having Furthermore, in the ICF, participation is identified 63
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOODTable 4. Classifications that can be used to assess the development of young children Aspects of child development within the DC: 0-3R ICD ICF bioecological model Physical health Recommends ICD codes to be All chapters, except V and XXI Body functions and coded in Axis III structures (e.g. haematological system functions) Mental health Axis I Chapter V, Mental and Body functions and behavioural disorders structures (e.g. emotional functions)Functions related to the child Developmental Requires improvement Chapter V, Mental and Body functions and status behavioural disorders structures (e.g. cognitive Axis I (mental health) functions) Chapter VI, Diseases of the Axis III (developmental delay) nervous system Activity and participation Axis V (social–emotional (e.g. acquiring language, Chapter XVIII, R62.0 Delayed development) changing basic body milestone position) Participation Not addressed Requires improvement Activity and participation Some items of Chapter XXI, (Z55-Z65 Persons with potential health hazards related to socioeconomic and psychosocial circumstances) (e.g. problems related to education and literacy) may be considered to reflect some aspects of participation Caregiver–child Axis II Requires improvement Requires improvement relationships Some items of Chapter One code (d760 parent- XXI (e.g. Z62.0 Inadequate child relationships) in parental supervision, Z62.1 section Activity andContextual factors Parental overprotection) may Participation may be be considered to reflect some considered aspects of caregiver–child relationships Social environment Axis IV (psychosocial Requires improvement Environment stressors) Chapter XXI (Z00–Z99), Factors influencing health status and contact with health services, may be considered to reflect some aspects of the social environmentas an important outcome of health. This should education, lifestyle, the personal interests andenable a seamless flow from the identification, desires of children and their families. WHO hasassessment and classification of a developmental thus chosen a biopsychosocial approach to health,difficulty during early childhood to improvement functioning, and disability in the new ICF model,of functioning and participation. to provide “a coherent view of different perspec- Parallel to the bioecological model of child tives of health from a biological, individual anddevelopment, the ICF embodies contextual factors social perspective” (WHO, 2001b).that may affect a person’s health. The first of these WHO is encouraging application of the ICFis environmental factors, which may be physi- internationally, not only as a classification tool,cal, social, cultural, or institutional, and which but also as a framework for social policy, research,include the availability, quality, expertise, and education, and clinical practice. Many aspects offocus of intervention programmes. The second the ICF are in congruence with the bioecologicalcomponent is personal factors, such as sex, age, model of child development and it is therefore a 64
  • CHAPTER 8. INTERNATIONAL CLASSIFICATION SYSTEMS FOR DEVELOPMENTAL DIFFICULTIES IN YOUNG CHILDREN Figure 5. Underlying model of the WHO ICF Health condition (disorder/diseases) Body function and structure Activities Participation (impairment) (limitation) (Restriction) Environmental Personal factors factors promising system for the classification of devel- raters was lower (Okasha & Seif el Dawla, 1992). opmental difficulties. In a study in India, diagnostic criteria for The major difficulty in using the ICF is that autism were examined by 937 Indian psychia- it appears complicated and user-unfriendly, and trists, psychologists and paediatricians. Partici- requires intense study and training. Furthermore, pants were asked to rate 18 types of behaviour as the related system for children and youth, ICF-CY, (a) necessary for a diagnosis of autism, (b) helpful deserves further development to include more but not necessary, or (c) not helpful in a diagno- detail on the interactions and relationships in the sis of autism, and were asked to provide other caregiving environment. A structure to explic- information about their experiences with autism. itly record the strengths of the child, caregiving The study showed that Indian professionals were environment and the community would also be endorsing criteria for autism that were present in a benefit (Lollar & Simeonsson, 2005). the DSM systems (Daley & Sigman, 2002). As was seen from the vignettes, ICF is No studies in LAMI countries using the ICF unmatched as a classification system in the wealth or DC: 0-3 systems for the classification of young of clinical information it captures, its flexibility children with developmental difficulties have and comprehensiveness, and the seamless transi- been found. tion to what is needed for the child in terms of reinforcement of personal and environmental Conclusions and implications strengths and interventions. 1. Internationally endorsed classifications are important in facilitating and advancing com- Research in LAMI countries munication between clinicians, researchers Research in LAMI countries on classification and policy-makers, as well as in advancing systems for young children with developmental clinical conceptualization, assessment and difficulties is almost non-existent. One important formulation. WHO collaborative research study on ICD-10 2. Three widely used classification systems, included both children and adults. Data were ICD-10, DC:0-3R, and ICF, offer a promising collected in eight Arab countries on a total of 233 approach to the classification of developmental patients, using the local psychiatric interview difficulties in young children. All of these sys- schedules and diagnoses according to ICD-10 tems have conceptual or pragmatic aspects that criteria. Inter-rater reliability was found to range are particularly useful for the classification of between almost perfect agreement (0.81–1) to developmental difficulties in young children. substantial agreement (0.61–0.80) (using the All the systems also have aspects that pose dif- kappa coefficient) in diagnosing organic mental ficulties in their widespread application. The disorders, substance use disorders, schizophrenic, DC: 0-3R offers a closer focus on the caregiving schizotypal and delusional disorders, affective relationship, but the concept of developmental disorders, and neurotic and stress-related disor- difficulties has not been expanded beyond ders. The categories of psychological development mental health disorders. ICD-10 is a pragmatic and child and adolescent disorders were diag- categorical approach; some codes include some nosed less frequently and the agreement between of the environmental and contextual aspects of 65
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD child development and the classification could potentially be improved to include more spe- cific aspects of early childhood development. ICD codes can be used in conjuction with either of the other two systems. The ICF sys- tem offers an approach that is in concordance with theories of child development and cur- rent concepts in developmental interventions. The caregiver–child relationship component requires improvement. Axis II codes of the DC: 0-3R could potentially be used to improve this area.3. A task force is needed to review the potential of the existing systems for the classification of the functional development and developmental difficulties of young children.4. Research is greatly needed in LAMI countries on classification systems. Such research should aim to identify how classification systems can be widely used in resource-poor situations, so that meaningful information on the status of children and interventions to improve their situation can be shared. 66
  • 9 Chapter Early intervention DDEC Survey results The DDEC Survey requested information about a number of issues related to early intervention (EI) for young children with developmental risks and difficulties. Only 12 countries had a law guaranteeing access to early intervention services for young children with developmental difficulties: France, Israel, Saudi Arabia, the United Kingdom and the United States (high-income countries); and Bulgaria, Ecuador, Jordan, Lebanon, Kyrgyzstan, Turkey and Viet Nam (low- and middle-income countries). The laws dated from as early as 1975 (France) to as late as 2005 (Kyrgyzstan). The vast majority of countries had EI services; in some cases, these were widespread, but most existed only in large cities or as isolated projects. Home-based EI was available in only three countries. In approximately half of the countries, most EI clinicians had had university or college level training in early intervention or a related discipline. Five countries (all LAMI) had no training courses for EI professionals. In the vast majority of countries, EI services were centre-based. In approximately half of the countries, families were not present during most EI sessions; in more than half, EI services were child-centred (caregivers were informed but professionals mainly focused on improving the skills of the child) rather than family-centred (clinicians viewed caregivers as active partners and obtained their input into services). Most countries had no residential centres for young children; where such centres existed, they accommodated only a small minority of children with developmental difficulties. In most countries, EI services (as listed in question 23, see Annex 1) were generally not available to the majority of children with developmental difficulties. The only service that was available to most children in the majority of countries was orthopaedic treatment. The following services were least likely to be available: psychological counselling, EI for difficulties in caregiver–child relationship, and EI for social and emotional difficulties. In most countries, government funded most EI services (question 23), and was the major source of funding for EI in more than half of the countries, followed by non-profit organizations in six countries (question 24). In the vast majority of countries, maternal and paternal education, caregiver income, geographical location of the family, and urban versus rural residence had an impact on whether the child received EI services. In 70% of the countries, stigmatization had an impact. Religion and ethnicity had an impact on receiving EI services in less than half of the countries.Purpose and scope of the chapter and lar interest: Handbook of early intervention, editedadditional key resources by Shonkoff and Meisels (2000), The effectiveness of early intervention, by Guralnick (1997), and TheT he scope of this chapter is limited to a sum- mary of current conceptualizations of earlyintervention, examples of published research on developmental systems approach to early intervention, also by Guralnick (2005a). This last book has a chapter dealing specifically with the situation inthis topic from LAMI countries, and an example developing countries (Rye & Hundeide, 2005).of a model early intervention programme linked to One book has been devoted to early interventionthe health system. For more comprehensive infor- around the world (Odom et al., 2003), and hasmation on EI, readers are referred to a number of detailed descriptions of early intervention pro-seminal publications. Three books are of particu- grammes in Brazil (Lumpkin & Aranha, 2003), 67
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD“The majority of services in this country have adopted models from industrialized countries. While aspects of these modelsmay be applicable locally, they are by and large not suitable to meet the vast needs of the disabled. Services for the disabledare currently fragmented, hospital-based and inadequate and do not appear to be a priority in medical development locally.Parents face many hindrances from service providers. Children with disability are often managed by a number of differentdepartments with little integration. Services are better at assessment than rehabilitation. The chronic care for these childrenfatigues service providers and parents. There is a prevailing sense of hopelessness. Most services do not adequately addressthe emotional burden of the family. Hence there is a high “dropout” rate in the utilization of rehabilitative services by parents.The development of services for children with disability and their family is largely in the hands of professionals or therapistsworking in government agencies and nongovernmental organizations. This has often resulted in services that are developed tomeet the needs of the professional, therapist or organization rather than those of the child or family. Children with disabilityand their parents need to be consulted and involved in the decision-making process of proposed and existing services whichcater for their needs. We require the will to relinquish “control” and distance ourselves from the “politics” of disability. We needinstead to see children with disability and their family as partners and offer them care in a way which dignifies, best meets the needs of the person with disability and takes into account his or her cultural and spiritual needs.” Dr Amar Singh, Senior Consultant Paediatrician, Head of Paediatric Department, Ipoh Hospital, Ipoh, Perak, Malaysia China (Tsai-Hsing Hsia, McCabe & Li, 2003), a) The primary prevention level aims to reduce Egypt (Khouzam, Chenouda & Naguib, 2003), the occurrence of developmental difficulties, by Ethiopia (Teferra, 2003), India (Kaul et al., 2003), reducing or removing risk factors, such as low and Jamaica (Thorburn, 2003). Another informa- birth weight, malnutrition, iron and vitamin tive book is by Zinkin&McConachie (1995). A deficiencies, perinatal asphyxia and home- special issue of the Journal of Policy and Practice based and unsafe deliveries, and by improving in Intellectual Disabilities was devoted to early nurturing and stimulation within the family. intervention from an international perspective, b) The secondary prevention level aims to reduce with information from Europe, the United States the extent of possible or manifested develop- and Israel (Guralnick, 2006a). A special report of mental difficulties and to shorten their duration. the European Agency for Development in Special Early intervention programmes for low birth Needs Education (2005) provides information on weight children or for children with malnutri- early intervention in European countries. tion or infants at risk operate at this level. c) At the tertiary prevention level, the aim is to Conceptualization prevent or reduce complications of develop- Early intervention has been defined as a system- mental difficulties. atic and planned effort to promote development Interventions at the primary level, related to the through a series of manipulations of environ- prevention of developmental difficulties for all mental or experiential factors, initiated during children were covered in Chapter 5. the first five years of life. As defined by Shonkoff In this chapter, early intervention will be & Meisels (1990), EI consists of “multidiciplinary described in terms of interventions that aim to: services provided for developmentally vulner- able children from birth to age 3 years and their ● assess risk factors, families”. In general, EI services are designed to ● prevent developmental difficulties in vulner- meet the developmental needs of children, from able children, birth to three or five years of age, who have a delay ● prevent the progression of difficulties, in physical, cognitive, communicative, social, ● ameliorate the effects of difficulties on child emotional or adaptive development or have a functioning , and diagnosed condition that has a high probability ● address curable causes of developmental risks of resulting in developmental delay. or difficulties detected in young children and EI services can be conceptualized as primary, their families. secondary and tertiary level interventions. The conceptual framework for early intervention has evolved in many different parts of the world 68
  • CHAPTER 9. EARLY INTERVENTIONand in different cultures from multiple sources, Who are EI services for?such as early childhood education, maternal EI has been made available for young childrenand child health services, special education, who have:and research on child development (Shonkoff& Meisels, 2000). While most of the research a) developmental risks, as a result of psychosocialand legislative processes on EI have so far been factors, such as poverty or caregiver’s mentalconducted in high-income countries, the present health or substance abuse problems;conceptual framework can be considered univer- b) developmental risks due to biological factors,sal and humanistic. such as low birth weight, malnutrition, or prematurity;What are EI services? c) established developmental difficulties, such asTypically, whether they are delivered as home- delays in language, cognitive, social–emotionalbased or centre-based services, early intervention or neuromotor functioning; this includes chil-services incorporate two components: services to dren with cerebral palsy, genetic syndromes,the child and services to the family. Services that autism, cognitive difficulties, and hearing orcan be considered under the umbrella of EI are: visual impairment.a) family-centred approaches, including diag- In high-income countries, early intervention nosis of health problems, needs assessment is readily available for young children who are and development of an EI plan; at risk due to poverty. Examples of nationwide programmes are Head Start (Zigler & Styfco,b) family education; 2004) and Early Head Start in the United Statesc) physical therapy; (McAllister et al., 2005), and Sure Start (Belsky etd) orthoses and prosthetics; al., 2006; Gray & Francis, 2007; Love et al., 2005;e) nursing care services; Tunstill et al., 2005) and Early Support (Young et al., 2008) in England. The eligibility criteria forf) nutritional support; entry into these programmes are determined byg) psychological and psychiatric support and income status. A range of services are provided treatment for child and family; based on need, including nutritional support,h) special education; health care access, play groups, quality day carei) occupational therapy; or preschool groups. Caregivers benefit from support for parent–child interactions, parent-j) audiological services; ing education, family planning services, literacyk) speech and language therapy; programmes, job training, physical and mentall) special care for visual and hearing impair- health programmes and community support ment; programmes.m) transportation services to EI; Research in high-income countries has shownn) coordination of care. that services for children who have biological risks are effective. The Infant Health and Development Program (IHDP) in the Unites States, for example, examined the impact of EI on the development of low birth weight premature infants (Berlin et al., 1998; Hill, Brooks-Gunn & Waldfogel, 2003; Klebanov & Brooks-Gunn, 2006; Ramey & Ramey, 1998). As a result of the IHDP, Birth to Three was founded in the USA as the national programme that ensures EI services for children with developmental risks. An example of a national programme in a developing country that serves children with psychosocial risks is the Integrated Child Devel- opment Scheme (ICDS) in India. This programme was described in Chapter 2. Vazir et al. (1999)Community based rehabilitation services must besupported in all countries: children and caregivers at demonstrated that children benefiting from theearly intervention center, Malaysia. Photo: Dr. Amar-Singh ICDS achieved significantly higher scores for 69
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD but by using their own strengths, creativity and problem-solving skills. Furthermore, clinicians working within the deficit model may find that they are repeating themselves and focusing on basic rote skills, which may not be particularly functional for the children and their families. Within the deficit model, clinicians may have difficulties in recognizing the true strengths, values and aspirations of children and families. The empowerment model evolved from families’ feelings of disempowerment within the deficitChild care centers, crèches must go beyond physical model. The resulting model is based on workingcare and provide opportunities for early learning: with children and families to support them inchildren in preschool, Vietnam. © UNICEF/NYHQ2009-0234/Estey EI, to recognize their aspirations and goals, and to help them find and mobilize their multiple strengths, resources and creativity to improveboth motor and mental functioning at all ages their child’s development. Developers of new EIthan children who were not benefiting from the programmes should recognize that the theory ofprogramme. EI and the training of EI clinicians have shifted Although early intervention programmes for from the deficit model to the empowerment modelnewborns discharged from neonatal intensive as the gold standard approach.care units have been reported from countriessuch as South Africa (Lubbe, 2005) and India 2. A shift from the child-centred to the(DeSouza et al., 2000, 2006), there are no national family-centred modelprogrammes in LAMI countries that enable Although families have always been a part of EIall children with developmental risks, such as programmes, in the past their role was mostly pas-prematurity, to benefit from EI services. Turkey sive. EI professionals would often decide what theis an example of a country that has a national child and family needed and tell them what theygovernment-funded system that provides physical should do. In recent years, families – regardless oftherapy and special education for children of all their educational and socioeconomic backgroundages with a developmental difficulty. However, – have increasingly been recognized as key, active,support for children at risk for developmental equal partners in the EI process. Caregivers aredifficulties is not included in this program. expected and encouraged to examine their child’s strengths and needs and, with clinician support,What major improvements are needed in to develop a programme of EI that will meet theirthe conceptualization of EI? own and their child’s goals and aspirations.There have been major improvements in the con- 3. A shift from a fragmented model to aceptualization of early intervention programmes one-stop comprehensive modelin the past 30 years. Five major changes that are In EI, the needs of children and families andrelevant for LAMI countries are summarized the services provided may be multifaceted, butbelow. the child and family do not necessarily benefit1. A shift from the deficit model to the from the fragmentation. When clinicians provid- empowerment model ing cognitive stimulation, speech and language therapy, physical therapy, health care and familyThe deficit model in early intervention originated support work with the child and family separately,from the biomedical model in health care. In this there may be lack of continuity, congruence, andmodel, the child’s developmental difficulties and convergence between the services. One particulardelays are determined by professionals, and EI barrier is the provision of different services inaims to address these deficits. Deficits in family different centres. Maximal links between clini-functioning are also determined and addressed. cians and the provision of all or most servicesClinicians working with children and families for within the home are components of a more effec-some time can recognize the limitations of this tive “one-stop” comprehensive or holistic modelmodel. Children and families often do not solve (Lequerica, 1997).problems based on what professionals tell them, 70
  • CHAPTER 9. EARLY INTERVENTION4. A shift from an early childhood approach Regardless of the focus of the program, this is to a life-cycle approach accomplished by family-centred practices thatPreviously, many EI programmes began and ensure that the programme is consistent withended in the early years of life. Currently, it is the family’s goals, values, priorities and routinesrecognized that interventions that aim to enhance (Guralnick, 2005a, 2005b, 2006b).child development, particularly for children at Some effective programmes have involvedrisk or with developmental difficulties, must intensive home-visiting by specialized nurses orallow a smooth transition to potentially lifelong highly trained practitioners, skilled counselling ofprogrammes. parents for mental health problems, or a mixture of intensive home-visiting for parents and high-5. A shift from neglecting cultural diversity quality centre-based services for children (Gilliam to endorsing it et al., 2000; Olds, 2007; US Department of HealthMany EI programmes have been modelled on and Human Services, 2002). Research in high-programmes that originated and were tested in income countries has highlighted that skilled staffdeveloped countries. Regardless of adaptations are needed for the administration of early inter-in the content, these programmes largely carried vention programmes, especially for the familiesWestern cultural influences (Sturmey et al., 1992). with the greatest challenges (Olds, 2007). ParallelIn recent years, largely as a result of work with to the identification of the importance of socialimmigrant and minority populations in developed and emotional development in cognitive andcountries, a deeper understanding has evolved of adaptive development in later years, particularthe effects of culture on child upbringing, and on attention is directed to programmes that addressthe perceptions of children and families. The value the emotional and social needs of young childrenof cultural diversity and its positive influences on and families with skilled staff. Effective screen-children have received more recognition than in ing and referral processes need to be in place.the past (Garcia Coll & Magnuson, 2000; Louw Screening may be carried out in primary physi-& Avenant, 2002). Understanding the strengths, cian offices, child care facilities, and preschoolinnovations, novelties, challenges and solutions of facilities. It has been highlighted that all screen-the culture in which EI is taking place – in other ing, assessment, and intervention efforts shouldwords, endorsing cultural diversity to work for address the language and cultural characteristicsEI – is a component of best practice in EI. of the children and families. In general, pro-Evidence-based best practices grammes that begin In general, programmesin early intervention early, that target fami- that begin early, that target families and children,Key features of early intervention programmes lies and children, and and that are intensivehave been evaluated for almost half a century that are intensive and and structured are mostin high-income countries (Shonkoff & Meisels, structured are most successful.2000). Such evaluations have shown that, for successful (Shonkoffpolicies and programmes to be effective, attention & H a u s e r- C r a m ,has to be given to the specific needs of children 1987). A key featureand families in a variety of circumstances. A wide of early childhood intervention is the “transdis-range of programmes have achieved positive ciplinary model”, in which professionals’ roles areresults, including child-focused, parent-focused, not fixed. Clinicians discuss and work togetherand two-generation models that function in a vari- on goals, even when these are outside their dis-ety of settings, such as homes and community cen- cipline. The boundaries between disciplines aretres. Successful programmes apply key concepts deliberately blurred to allow a family-centredof child development in addressing the needs approach and flexibility.of children and families. Specifically, successfulprogrammes identify family stressors and needs(e.g. informational needs, mental health issues, Summary of research ininterpersonal and family distress). Programmes LAMI countriesthen employ highly individualized approaches There have been a number of research studiesto improve family and child competencies by in LAMI countries that have shed light on ouraddressing resource supports, social supports and understanding of EI.information, and by providing specific services. 71
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD1. The empowerment model The need for rehabilitation to be directed atNo examples of research in LAMI countries on “easing the burden of daily care, childhood behav-the empowerment model in comparison with the ior problems, minimizing hospital re-admissionsdeficit model could be found. and targeting appropriate psychosocial support at specific subgroups to address parental percep-2. The family-centred model tions and expectations that may lead to increasedA number of studies have highlighted the need stress” was highlighted (Ong et al., 1998).for a family-centred model of EI. In particular, 3. The need for a comprehensivemany studies have underscored the importance one-stop modelof addressing the burden on caregivers of childrenwith developmental difficulties. Research in high- The need for comprehensive EI programmes thatincome countries has demonstrated compromises address all components of the health and develop-in the functioning of caregivers of children with ment of young children is well recognized.developmental difficulties (Melnyk et al., 2004; There have been a few research studies in LAMIRaina et al., 2005). Research in LAMI coun- countries that have demonstrated the crucial needtries has also shown that caregivers experience for such a comprehensive model. Two studiesincreased stress when caring for a child with a highlighted the need for integrated health servicesdevelopmental difficulty. and EI. The first examined mortality in children A study in Bangladesh showed that, in moth- with developmental difficulties and highlighteders of young children with cerebral palsy, the the importance of addressing the health and nutri-strongest predictor of maternal stress was child tion of children with developmental difficulties.behavioural problems, especially those related The study followed 92 children with cerebral pal-to caring (Mobarek et al., 2000). An alarming sy in Bangladesh for up to 3 years. Eight childrenproportion of mothers (42%) were found to be at died: two of 49 (4%) in an urban area and six ofhigh risk of psychiatric morbidity. 43 (14%) in a rural area. Factors such as infections Ong and colleagues studied coping and stress and drug reactions preceded all the deaths; thoseexperienced by Malaysian mothers who had who died were mostly severely malnourished andchildren with cerebral palsy (Ong et al., 1998), among the more severely disabled (Khan et al.,mental retardation (Ong, Chandran & Peng, 1998). A study in India showed how the basic1999) or very low birth weight (VLBW) (Ong, medical needs of the children may be neglected ifChandran & Boo, 2001). These studies shed light services are not incorporated. This study aimed toon the fact that different types of interventions determine the need for ophthalmological servicesmay be needed to alleviate stress in different risk for children with coloboma, microphthalmos andpopulations. microcornea; it showed that many children who In the study on children with VLBW, specific were enrolled in special schools for the blindchild characteristics (such as being male, having could have benefited from simple ophthalmo-a low IQ score and presence of behavioural prob- logical interventions, such as spectacles and lowlems) and maternal factors (such as low education vision aids (Hornby et al., 2000).and being the primary caregiver) appeared to Two other studies highlighted the need forhave a greater impact on parenting stress than interventions to address all aspects of develop-the biological risk of VLBW birth. ment and functioning. A study in rural India The study on children with cerebral palsy reported on reduced participation in social activi-showed that mothers of those children scored sig- ties of children with epilepsy (Pal et al., 2002). Atnificantly higher than control subjects on the Par- all ages from 2 to 18 years, boys and girls withenting Stress Index (PSI). The impact of cerebral epilepsy had limited peer group activities. Thepalsy on parenting stress was modified by other lack of participation could not be explained by thefactors, such as increased caregiving demands, constraints imposed by the impairment itself. Oflow maternal education, children’s admission to particular interest was that preschool-age childrenhospital and Chinese ethnic background. were more protected than their peers and had When compared with controls, mothers of significantly less active social lives. In Thailand,children with mental retardation were also found a tertiary centre-based study on children withto have increased levels of parenting stress. PSI Down syndrome found that most children (66%)scores in this study were affected by child behav- had received early stimulation, but that only 39%ioural problems, maternal unemployment and had attended a speech intervention programmeChinese ethnicity. in the first two years of life (Jaruratanasirikul et 72
  • CHAPTER 9. EARLY INTERVENTIONal., 2004). Language skills in most of the children months, 10% between 7 and 9 months and 4%were found to be limited. after 9 months of follow-up. The only sociode- Understanding the reasons for compliance mographic parameter that demonstrated a strongand non-compliance with EI services is one of linkage with follow-up was parental education.the most crucial components of service delivery. Both the mother’s and the father’s education wereThe one-stop model, which seeks to increase important and, after adjustment, higher paternaluptake, compliance and effectiveness of EI, has education was more strongly associated withnot yet been fully achieved, even in high-income better follow-up rates. This study highlighted thecountries. In LAMI countries, the need for one- importance of convincing poorly educated fathersstop, easily accessible services may be even more of the benefits of early intervention.important. A number of longitudinal studies have Another component of the study in Goa high-been conducted on compliance with EI services. lighted the need for home-based EI programmesA study in Bangladesh examined the factors that for high-risk children. In this study, 158 high-affect mothers’ attendance at specific EI services risk neonates and their parents were offered a(McConachie et al., 2001). The Bangladesh Proti- clinic-based early intervention programme andbondhi Foundation developed an outreach parent were followed until their first birthday. Soci-training service based at two centres, one urban odemographic, programmatic and infant-relatedand one rural. At these centres, mothers were variables that could influence compliance andshown how to use picture-based distance training uptake of the programme were investigated. Onlypackages, which they could take home. The study 59% of the infants were brought for three or morefollowed 47 children with cerebral palsy, aged sessions. Higher maternal educational levels and2–5.5 years. Compliance with the programme was proximity of place of residence to the clinic werelow. The main factors predicting higher attend- significantly associated with better complianceance were male sex of the child, particularly in the (DeSouza et al., 2006).rural area, and higher level of problems mothers’ In a randomized controlled trial in Bangla-adapting to the child. The problems described by desh, McConachie et al. (2000) examined thethe mothers in using the advisory service were efficacy of an outreach programme for youngeconomic (such as transport costs), cultural (such children with cerebral palsy. The study had twoas mothers not being permitted to go out alone), arms, both for the urban children (a centre-basedand medical (such as the child having repeated mother–child group versus outreach parentconvulsions). training) and for the rural children (outreach In a study on compliance with EI services parent training versus health advice only). Thein Goa, India, 360 newborns at high risk for mother–child groups were organized daily bydevelopmental difficulties were offered a centre- clinicians with training in physiotherapy. Thebased EI programme (DeSouza et al., 2000). Most distance training packages were given to familiesfamilies (54%) failed to bring their children for after an initial 1–2 hours of practice with thetheir follow-up appointments, 67% dropped out child. Though hampered by a small sample sizewithin the first 3 months, 19% between 4 and 6 and variability in the intensity of the interven- tion, the results suggested that distance training packages and mothers’ groups hold promise for helping mothers improve the skills of their young children with cerebral palsy. 4. Addressing continuity of services across the lifespan No research in LAMI countries related to continu- ity of service delivery could be found. 5. Addressing cultural diversity Cultural aspects shape the content, delivery and evaluation of the EI programme. The content of EI will depend largely on the starting-point ofEarly intervention services must partner with families what caregivers believe, know and can do withand include participation in daily life activities: childrenand parents in early intervention center, India. their children. This may be different for differ-Photo: Dr. Vibha Krishnamurthy ent populations. For example, in a population- 73
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOODbased study in two cities in Turkey, it was found common concepts everywhere. Bridge (2004)that most mothers of children aged 0–3 years reported on a series of observation visits to self-believed that most developmental skills and help groups established by parents for their disa-activities should occur at later than normative bled children in Ukraine. In that country, parentsages (Ertem et al., 2007). Of the 1055 mothers, of disabled children were encouraged to place52% did not know the ages at which children their child in institutional care. There were stricttypically acquire vision. A higher proportion of legal regulations excluding the children frommothers – 79%, 59% and 68% respectively – did normal schools and medical assessments were thenot know that vocalization, social smiling and basis for decisions about child care. Nevertheless,overall brain development begin in the early many parents decided to care for their disabledmonths of life. Interventions to improve maternal child at home within the family. Bridge drewknowledge would need to be geared to such basic attention to the emotional stress experienced byinformation before moving to more sophisticated both parents and their disabled children in com-levels of development. ing to terms with the conditions and denial of the Cultural aspects may also play a role in the normal rights of childhood resulting from preju-delivery and uptake of interventions. The cultural dice, poor resources, ignorance, and restrictiverole of fathers has been highlighted previously legislation. Despite such difficulties, there is also(DeSouza et al., 2000). The extended family also a success story from Ukraine, showing that whenplays an important role in the lives of children in the principles of EI are endorsed, improvementsLAMI countries but this has not been fully stud- can be rapid and effective. A detailed report byied. In Uganda, a study with a qualitative phenom- Kukuruza (1998) demonstrated a major improve-enological design looked at how family members ment in community EI models.coped with their disabled children (Hartley et al., Further research is needed on the importance2005). Data were collected from 52 families with of acknowledging the complexities of workingchildren with disabilities from five impairment on EI in diverse communities with their uniquegroups, through interviews and observations cultural, religious, social and economic conditionsin one urban and two rural districts. Findings (Crishna, 1999).showed that most children with disabilities wereincluded within the families, and were loved and Important questions for future researchcared for. Families spent considerable time andmoney on seeking a cure. With the breakdown Research on EI in LAMI countries is still in itsof extended family systems, the main burden of early stages. With appropriate stimulation andcaring for a disabled child generally fell on one support, including building of infrastructure,or two female caregivers. Male members acted as appropriate funding and careful thought aboutgatekeepers, making the key decisions related to the components of EI that need to be addressed,the child and the associated resources. In this cul- this field should grow and develop rapidly. Manytural context, the authors drew conclusions that questions need to be answered. Three importantwere pertinent and transferable to other settings: questions are:interventions “should move the focus of their ser- 1. Are there EI programmes that have been shownvices away from the disabled individual towards to be effective (such as the IHDP) that can bethe whole family. It is important to provide accu- adapted and delivered in other countries withrate information about causes and prevention of diverse settings?impairments, the realities of a cure, support andrespite for the female caregivers, and opportuni- 2. What is the level of intensity that the EI pro-ties for the involvement of fathers.” gramme needs to show a clinically important The culture of the community in relation to and sustainable effect?stigma is also important. In LAMI countries, car- 3. How can collaborations between researchersegivers of children with developmental difficulties and communities from different countries bemay experience more stigmatization and less built, so that research goals, ideas, strategies,support from society and legislation than those results and implications related to EI can bein high-income countries. A study in Lebanon shared to ensure progress in LAMI countries?examined feelings of stigmatization, isolation andstress, and depressive symptoms, in mothers of One ongoing research project that aims tochildren with mental retardation (Azar & Badr, address each of these research questions is being2006). Stigmatization and isolation appear to be conducted at the University of Birmingham, 74
  • CHAPTER 9. EARLY INTERVENTIONAlabama, USA. A cluster randomized controlled and other professionals, business and industrytrial of a home-based intervention is under way in (private sector). A wide range of activities isIndia, Pakistan and Zambia. This study identifies included, beyond medical care and rehabilita-infants with birth asphyxia and others at risk for tion, such as promoting positive attitudes towardsneurodevelopmental disorders and evaluates the people with disabilities, preventing the causesoutcomes of an innovative home-based, parent- of disabilities, providing rehabilitation services,provided, early intervention programme (Carlo, facilitating education and training opportuni-2007). The study has two other important com- ties, supporting local initiatives, monitoring andponents: it aims to determine the level of intensity evaluating programmes, supporting micro andneeded for the interventions to have a positive macro income-generation opportunities. WHOand sustained effect; and to broaden research supports Member States in the following areas:collaboration between countries, to build sustain- 1. developing guidelines for CBR;able capacity for research on early interventionand neurodevelopmental outcomes. This study 2. conducting regional and country workshopsshows that it is possible to address important to promote CBR and the WHO guidelines;questions, design the methodology to answer 3. initiating and/or strengthening CBR pro-them collaboratively and bring real benefits to grammes.children around the world. Although CBR has been promoted by WHO in many countries for more than 30 years, research on its benefits has been fragmented. Finkenflügel,An exemplary model from Wolffers & Huijsman (2005) reviewed 128 arti-LAMI countries cles published between 1978 and 2002 to assessIn this section, rather than provide details of a the evidence base for CBR. The review showedsingle intervention programme, a summary will an ever-increasing number of publications onbe given of the WHO community-based reha- CBR. Theoretical papers and descriptive studiesbilitation (CBR) model, together with examples were most common; intervention studies andof country programmes that have employed this case reports were relatively rare. No systematicmodel. The WHO introduced CBR in the 1980s methodological review has yet been carried out,as a strategy for improving the quality of life of although reviews on specific aspects of CBR aredisabled people and their families around the available. The key aspects of implementation andworld (Helander, Mendis & Nelson, 1980, 1989). stakeholders were relatively well presented, butBy definition, CBR aims to move away from the numbers of articles on participation and use ofcentre-based, institution-based or specialist-based local resources were low. This study revealed thatcare towards the building of local knowledge and there has been no real focus of research in CBRpractices to address the special needs of people and that the evidence base for CBR is fragmentedwith disabilities within the community. Since and incoherent in almost all aspects. In order toits introduction, CBR has been widely applied establish evidence-based practices in CBR, sys-in many parts of the world for people of all age tematic research needs to be conducted as wellgroups. CBR has also been used as an EI strategy as comprehensive review studies on key aspects.for young children with developmental difficulties Despite the fragmented nature of the researchand their caregivers. on CBR, this model holds promise as an EI As defined by WHO: “Community-based reha- approach to developmental difficulties in youngbilitation currently in practice in more than 90 children. The envisioned CBR matrix is showncountries around the world is a comprehensive in Figure 6. The CBR matrix shows the differentstrategy for involving people with disabilities sectors that comprise the CBR approach. The fivein the development of their communities.” CBR components of the matrix are health, education,seeks to ensure that people with disabilities have livelihood, social and empowerment. The ele-equal access to rehabilitation and other services ments under the components offer tangible waysand opportunities – health, education and income of working with persons with disability and their– as do all other members of society. The target families. WHO has developed a variety of trainingpopulations are people with disabilities, families materials for community rehabilitation workersof people with disabilities, communities, disa- who may provide services to young children.bled people’s organizations, local, regional and The following materials related to children cannational governments, international organiza- be found on the WHO website (http://www.who.tions, nongovernmental organizations, medical int/disabilities/publications/care/en/ ): 75
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD● Disability prevention and rehabilitation: a guide for speech therapy model within the health care sys- strengthening the basic nursing curriculum (1996); tem for children with cleft lip or palate (Prathanee,● Let’s communicate: a handbook for people work- Dechongkit & Manochiopinig, 2006). ing with children with communication difficulties Early studies of CBR for children published in (1997); the 1980s reported on EI programmes in rural Guyana (O’Toole & McConkey, 1998; O’Toole,● Promoting the development of infants and young 1989) children with spina bifida and hydrocephalus: a Penny et al. (2007) reported from Uganda on guide for mid-level rehabilitation workers (1996); a successful programme that each year provided● Promoting the development of young children with assistance to over 5000 children with motor cerebral palsy: a guide for mid-level rehabilitation impairment, including transport, rehabilitation, workers (1993); hostels, physiotherapy, orthopaedic surgery, and orthopaedic appliance technology.● Guidelines for the prevention of deformities in polio Finkenflügel et al. (1996) conducted a quali- (1990); tative study in Zimbabwe to examine the appre-Additional EI training videos for CBR workers ciation of CBR by caregivers of children with ahave been developed for use in Africa (e.g. Bot- disability. The findings showed a significant cor-swana, Malawi, Uganda ,Zimbabwe, Zambia), relation between appreciation of CBR and attitudeAsia (e.g. China, India, Malaysia, Sri Lanka) and towards health services.South America (e.g. Guyana) by organizations Based on the need for an indigenous pro-such as UNESCO, Cheshire Homes International, gramme suited to the cultural milieu andand local CBR programmes such as the Guyana socioeconomic conditions of India, IndchemCBR Program (McConkey, 1995). Research and Development Laboratory developed Many countries have used the CBR model to a computer-assisted programme to train caregiv-provide EI for young children with developmental ers of children aged 0–2 years with cognitivedifficulties and their families. difficulties. The curriculum was developed by an A study in north-east Thailand reported on the interdisciplinary team of experts in the field. Insuccessful establishment of a community-based the programme called Upanayan (To lead along),Figure 6. WHO community-based rehabilitation matrix CBR MATRIX HEALTH EDUCATION LIVELIHOOD SOCIAL EMPOWERMENT EARLY SKILLS RELATIONSHIPS PROMOTION COMMUNICATION CHILDHOOD DEVELOPMENT MARRIAGE AND FAMILY SELF- SOCIAL PREVENTION PRIMARY PERSONAL EMPLOYMENT MOBILIZATION ASSISTANCE SECONDARY FINANCIAL CULTURE POLITICAL MEDICAL CARE PARTICIPATION AND HIGHER SERVICES AND ARTS RECREATION, SELF-HELP WAGE REHABILITATION NON-FORMAL LEISURE AND GROUPS EMPLOYMENT SPORTS DISABLED ASSISTIVE LIFE-LONG SOCIAL ACCESS TO PEOPLE’S DEVICES LEARNING PROTECTION JUSTICE ORGANIZATIONS 76
  • CHAPTER 9. EARLY INTERVENTIONmothers are trained to support their children’s — A one-stop comprehensive or holistic modeldevelopment. A computer program for record- is favoured over a fragmented approach, ining the data on the children and their progress which the child receives multiple servicesfacilitates the setting of goals and the monitoring from different systems and service providers.of progress. Parents of children at Madhuram — EI should not end when the child reaches aNarayanan Centre for Exceptional Children, certain age, but should link seamlessly withMadras, use this programme for EI. The results of services provided as needed throughouttraining have been encouraging (Krishnaswamy, the life-cycle. Emphasis should be given1992, 1994). to transition periods, when new circum- stances and new needs may emerge.Conclusions and implications 3. EI is feasible in LAMI countries and years offor action experience have accumulated in many com-1. There is important evidence from high-income munities. Nevertheless, most children who countries that EI at the primary, secondary are in need of EI in LAMI countries are not and tertiary levels is effective in preventing benefiting from EI programmes. or reducing the burden of developmental dif- 4. In LAMI countries, capacity needs to be built ficulties for children, their families and the rapidly within health and other systems, so that community. EI services can be developed, implemented,2. Early intervention has evolved over the past and sustained. Such EI services should be century and is currently based on the following evaluated so that evidence-based approaches key principles: can be integrated. — The child is viewed in the context of the 5. In most LAMI countries, despite their feasibil- caregivers, family and larger commu- ity, EI services lag significantly behind those nity, and a family-centred, strengths- and in high-income countries. Countries would function-based, empowering approach is benefit from international collaborative efforts, favoured. so that time and resources are not spent on reinventing what has already been shown to work (or not work). 77
  • 10 Chapter From prevention to intervention: consensus of expertsT he DDEC Survey included an open-ended question asking respondents to describe threepriority actions that they believed would improve countries, considered that the key factor that would improve services for young children and their families would be the establishmentservices for young children with developmen- of such policies and legislations, establishingtal difficulties in their country in the next five services for the early detection of problems andyears. The answers to this question from the 31 management of children diagnosed as havingrespondents have been analysed using qualitative a difficulty.techniques. The following themes emerged from d) Legislation should be followed by improvedthe responses: access to services for all children. Barriers that● advancing policy related to developmental dif- have been identified by this survey, such as ficulties in early childhood at national level; geographical location of residence, should be addressed.● bringing down barriers using common inter- national approaches and platforms; e) Policy should also involve improved services● increasing local capacity by training personnel; addressing developmental difficulties at all lev- els (promotion of early childhood develooment,● increasing capacity in other specialities related early detection and early intervention). Where to developmental difficulties; services exist and can reach children and● empowering caregivers; their families, they are usually subsidized by government. Respondents recommended that● conducting research. these services should be subsidized and free of charge in all countries.Advancing policy related to f) Quality and affordable child care for childrendevelopmental difficulties in early whose primary caregiver is employed in thechildhood at national levels workforce is an extremely important strategya) Advocacy efforts should concentrate on in the prevention of developmental difficulties improving the understanding and commitment in infancy and early childhood. of policy-makers in all countries with respect g) Policies should be in place to develop national to the importance of the early years, address- forums or platforms to discuss, monitor and ing the preventable causes of developmental review policies, plans and actions related to difficulties, and improving early detection in prevention of developmental difficulties and conjunction with early intervention services. the promotion of optimal development for allb) Ministries of finance should fully understand children, specifically those with special needs. that investment in early childhood may not pay h) Special centres that address the multitude of off immediately, but is the most cost-beneficial needs of young children with developmental and crucial step in the development of human difficulties and their families should be created. capacity. In these centres, services should be providedc) Legislation and national policies related to the to meet both the biomedical and psychosocial promotion of child development and the early needs of the child and family. Lengthy back- detection and management of developmental logs at such centres – a problem that has been difficulties do not exist in most of the countries encountered in high-income countries – should included in the DDEC Survey. Most of the be avoided. respondents, particularly those from LAMI 78
  • CHAPTER 10. FROM PREVENTION TO INTERVENTION: CONSENSUS OF EXPERTSi) Primary health facilities may have special teams of staff who conduct home visits to prevent and detect developmental difficulties.j) Posts should be created to ensure a full range of staff in ministries, such as those of health, education and social welfare.k) Developmental–behavioural paediatrics should be promoted in LAMI countries. This field endorses the science of child development and brings together both the somatic and psychosocial needs of young children and their Centers that address the multitude of needs of children families. This field is a core agent in translat- with difficulties and their families are needed: Child ing the science of child development and early Development Center, India. Photo: Dr. Vibha Krishnamurthy intervention into paediatric health care. problems, but may not be ethical if not linked to appropriate interventions.Bringing down barriers usingcommon international approachesand platforms Increasing local capacity by training personnela) Respondents identified a need for guidance from a world body to foster a common under- a) Training of primary health care providers. standing of the causes, identification and All respondents, regardless of country status, management of developmental difficulties. identified primary health care providers as the key human resource for delivering interven-b) Stigmatization should be addressed univer- tions related to early childhood development sally, regardless of the socioeconomic status and developmental difficulties. All respondents of the country. It was stated, for example, that underscored the importance of the training of in some European countries where psychoana- health care providers. lytical approaches to developmental problems — Preservice and in-service training should are dominant, caregivers may be viewed as the be provided for all health care providers cause of some developmental difficulties, such (paediatricians, other doctors, nurses, mid- as autism. In other countries, stigmatization wives, other primary health care workers). may be present in other forms. — Contemporary theories and models ofc) In most countries, families are not active early childhood development, with specific partners in the early intervention process. emphasis on caregiver relationships and the Family-centred early intervention should be bioecological model, should be included. the cornerstone for care in all countries. — Health care providers are usually awared) Common international classification systems, of gross motor development. Particular such as the WHO International Classification emphasis should be given to areas of func- of Functioning, Disability and Health, which tional development pertinent to later out- provide nondiscriminatory, theoretically justi- comes, i.e. language and communication, fied and evidence-based means of classifying social–emotional development including developmental difficulties, should be adopted relating, self-regulation, motivation, and by all countries. cognitive development, such as problem-e) In some countries, rehabilitation of young chil- solving skills and attention. dren is still viewed in the same framework as — Causes of developmental difficulties, adult rehabilitation. International guidance is particularly in LAMI countries, should be needed to adapt community-based rehabilita- emphasized; both biomedical and psycho- tion to young children and their families. social causes across the life span should bef) International guidance is also needed on meth- included. ods of early detection that are well linked to — Evidence-based interventions to prevent early intervention. Screening for developmental developmental difficulties should be difficulties alone may provide visibility for reviewed. 79
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD — Health providers should gain the knowl- edge, skills and attitudes to empower caregivers to provide adequate and enrich- ing developmental opportunities for their young children. — Health providers should gain the skills to apply contemporary methods of early detection (screening and surveillance) for developmental difficulties during health encounters. These methods of detection should be directly linked to feasible inter- ventions. Center for Child Development, Malaysia. — The philosophy of early intervention and Photo: Dr. Amar-Singh community-based rehabilitation should be a part of the training of health care person- nel. Empowering caregivers — Health care providers should also be Policies and programmes should recognize the equipped with knowledge of the role of central role of caregiver involvement in early other providers who work with children, childhood. All efforts should be made to empower and be skilled in working within interdis- caregivers as partners in the prevention, diag- ciplinary settings nosis, assessment and management of develop- mental difficulties. Information can be given to Increasing capacity in other caregivers by trained personnel, or through other specialities related to developmental available channels, such as the media. There is a difficulties wide gap between what caregivers know about the importance of early childhood in high-income and Respondents from all countries recommended LAMI countries. Delivery of information and sup- that human resources be increased in the fields port to caregivers is urgently needed for all three that serve young children with developmental phases of addressing developmental difficulties difficulties and their caregivers. Child develop- – prevention, early detection and management. ment and early intervention specialists, child care providers, preschool teachers, psychologists, infant mental health specialists, educators, speech Conducting research and language therapists, physiotherapists, occu- Research related to young children with develop- pational therapists, and audiologists are among mental difficulties should be conducted through the disciplines that need urgent strengthening, international collaborations, and with clear goals particularly in LAMI countries. to determine what is needed and what works in LAMI countries. Policies and programmes should recognize the central role of caregiver involvement in early childhood.All efforts should be made to empower caregivers as partners in the prevention, diagnosis, assessment and management of developmental difficulties. Information can be given to caregivers by trained personnel, or through other availablechannels, such as the media. There is a wide gap between what caregivers know about the importance of early childhood in high-income and LAMI countries. Delivery of information and support to caregivers is urgently needed for all three phases of addressing developmental difficulties – prevention, early detection and management. 80
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  • Annex 1 World Health Organization Survey Care for young children with developmental difficultiesDear ……….........................………….,We have identified you as a key expert on children with developmental difficulties in your country. Werequest your participation in this survey, which is part of a comprehensive review commissioned by theWorld Health Organization to help countries and international organizations to prevent and manage devel-opmental risks and difficulties in children from birth to 3 years of age. Our goal is to identify the globalneed of systems and services for young children at risk for or with developmental difficulties. This surveyis being sent to ONE expert from each country.The survey consists of 30 questions and will take approximately 1 hour of your time. We understandthere may be difficulties in providing answers to specific questions in situations where there is no officialinformation available and/or there may be marked variability in resources available in various parts of thesame country. We would appreciate it if you consult references or informants when possible but when thisis not possible we would be grateful if you could provide your best estimate for the questions. Data will becompiled and reported as a whole and your name will be kept confidential. We will acknowledge yourcontribution in the final review if you indicate this at the end of this survey. Please indicate on the surveyyour preferred long term contact information. As a gift, we would like to send you a package of documentsrelated to the field and would also like to keep in touch with you in other international initiatives relatedto child development.We would like to encourage you to complete the survey by clicking on the web link below:https://fs10.formsite.com/ertemilgi/form502944769/form_login.htmlThis site is user friendly and enables you to create your own account and password so that you can saveand return to your results at any time. Alternatively, you may contact Dr. Ilgi Ertem to receive an attach-ment of the survey. Please complete and return survey before March 15th, 2007. Please contact Dr. IlgiErtem by e-mail if you have questions.We thank you in advance for your time and all your efforts, and hope that the results of this survey andthe final report will help ensure a better future for children and their families.World Health OrganizationDepartment of Child and Adolescent Health and DevelopmentMeena Cabral de Mello Ilgi Ertem M.D.Senior Scientist Department of Child and Associate Professor of Pediatrics Adolescent Health and Development Family Developmental-Behavioral Pediatrics Unit and Community Health Cluster World Ankara University School of Medicine Health Organization Cebeci, Ankara, 06100 TurkeyAvenue Appia 20 CH-1211 Geneva 27 Visiting Professor at Yale University DepartmentTel: (41 22) 791 3616 (41 22) 791 4239 of PediatricsFax: (41 22) 791 4853 New Haven, CT, USAE-mail: cabraldemellom@who.int Tel: 203-688-2468 (work) Fax: 203-785-3932 E-mail: ertemilgi@yahoo.com 101
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOODDefinitions of terms used throughout surveyPlease review the definitions below of terms used throughout the survey before you complete thesurvey. The following terms, listed in alphabetical order below, are written in italics throughout thesurvey.Caregiver: An adult (parent, family member or other) who parents, takes care of child.Child development: All areas of development including cognitive, language, emotional, behavioral, social, fine and gross motor development.Developmental difficulty: Signs and symptoms of arrest, alteration, delay, disability in any developmen- tal area including cognitive, language, emotional, behavioral, social, fine and gross motor difficulties.Developmental risk: Biological and psychosocial conditions that pose risks to optimal development. Biological risks include conditions such as premature birth, low birth weight, malnutrition, infectious diseases, and genetic disorders. Psychosocial risks include conditions such as poverty, maternal depres- sion, child-caregiver interaction problems, caregiver illness and/or stress, human discrimination, violence, war, natural disaster. Developmental risks may be multiple and combined. A child with a risk may not yet demonstrate difficulty or delay.Early intervention (EI) services: Any continuous service provided by specifically trained people aimed at helping the child’s cognitive (intellectual), social or emotional development.Physical rehabilitation therapy (PT): Any intervention aiming to remedy disabilities affecting a child’s difficulties in motor development.Provider: Trained person providing health, educational or other services for child and/or caregivers to address developmental difficulties.Young child: Child aged 0–36 months. 102
  • ANNEX 1 WHO SURVEY Care for young children with developmental difficultiesSection 1.Information about respondentCountry surveyed:Name of respondent:Title and current position:Address of the institution in which you work:E-mail:Telephone: Fax:Is this your country of origin?a) Yesb) If no, then how many years have you lived in this country? ...................... years.Please indicate your primary discipline (check one only): a) General pediatrician b) Pediatric neurologist c) Developmental or developmental-behavioral pediatrician d) Other medical/doctor (indicate field if other than general practitioner): ............................................................................................................................................................................ e) Psychiatrist f) Psychologist g) Educator/teacher h) Social worker i) Nurse j) Other (please describe): ...................................................................................................................................How many years of experience do you have in working with young children with developmentalrisks, delays, disabilities or difficulties? (check one only): a) Less than 1 year b) 1–5 years c) 6–10 years d) 11–15 years e) Greater than 15 years 103
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOODIn what ways have you been involved with children with developmental difficulties (check all thatapply): a) Academic (teaching in schools/universities) b) Clinical service c) Research d) Administrative e) Advocacy f) Policy maker within government g) Non-profit organization h) Other (please describe): .................................................................................................................................Section 2.Role of health care providers in the prevention of developmental difficulties.1. In your country how far are most villages/towns/communities from trained health care providers? (check one only):  a) Within walking distance  b) Accessible by transportation that is affordable to most of the population  c) Not accessible by transportation that is affordable to most of the population  d) Other (please describe): ...........................................................................................................................2. Who do most young children see for their healthcare? Please check X in one box (a–e) for each question (2.1–2.3). Healthcare provider in this question indicates anyone other than a medical doctor, such as a nurse, midwife or other trained healthcare provider. a) Mostly b) Mostly c) Mostly d) Mostly e) Other same different same different (please medical medical healthcare healthcare explain) doctor doctors provider provider 2.1 Primary-preventive healthcare (immunizations, growth monitoring, nutritional counseling) 2.2 Acute healthcare (healthcare when children have an acute illness such as diarrhea, respiratory tract infection) 2.3 Chronic illness (malnutrition, asthma, HIV-AIDS, developmental difficulty)3. Please indicate if the following trained providers exist? If they exist, are there a sufficient number of them to serve more than 50% of all young children in need of their services. Check X in one box for each provider. Trained providers Don’t exist Exist Sufficient Exist Insufficient 3.1 Primary healthcare doctors, general practitioners 3.2 Primary healthcare nurses 3.3 Home visitors with background in healthcare 3.4 Home visitors with background in discipline other than healthcare 3.5 Home visiting volunteers 3.6 Pediatricians 3.7 Pediatric neurologists 3.8 Developmental-behavioral pediatricians 104
  • ANNEX 1 Trained providers Don’t exist Exist Sufficient Exist Insufficient 3.9 Child psychiatrists 3.10 Professionals trained specifically in infant mental health 3.11 Child psychologists 3.12 Early intervention/early childhood development specialists 3.13 Special education teachers 3.14 Pediatric physiotherapists 3.15 Pediatric occupational therapists 3.16 Child speech and language therapists 3.17 Social workers trained to work with children and families3.18 Child care (day care, nursery school) teachers 4. What proportion of all primary healthcare providers (doctors and other healthcare providers) have the expertise and training to provide the services listed? Check X in one box for each question. What proportion of primary healthcare providers in your Most Many Some Few Very few– country know how to: (100–75%) (74–50%) (49–25%) (24–5%) none (4–0%) 4.1 Use interview and observational skills to identify biologic developmental risk factors (such as low birth weight) in young children 4.2 Use interview and observational skills to assess social-emotional developmental risk factors (such as maternal depression) in young children 4.3 Use interview and observational skills to assess the all aspects of a young child’s development 4.4 Use standardized validated instruments to assess the development of young children 4.5 Use standardized methods to assess malnutrition in young children 4.6 Use interview and observation skills to assess if a child has cerebral palsy in the first year of life 4.7 Use interview and observation skills to assess if a child has autism in the first three years of life 4.8 Assess hearing loss in the first 6 months of life 4.9 Use interview and observational skills to assess language difficulties (apart from hearing loss) in the first 2 years of life 4.10 Use interview and observational skills to identify difficulties in caregiver-child relationship 4.11 Use interview and observational skills to identify child neglect and abuse 4.12 Counsel caregivers about how to enhance the child’s development (e.g., learning, communication, mental health) 4.13 Counsel caregivers of young children with developmental risks and difficulties about how to access early intervention and rehabilitation resources 4.14 Manage the special healthcare needs of children with developmental difficulties 105
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD5. Are there programs that train at least 50% of all primary healthcare providers serving children about the types of services listed in question 4 that help prevent and manage developmental difficulties in young children? (Please check one only)  a) Training programs do not exist  b) Pre-service (in schools/before graduation/starting work) training programs exists  c) In-service (during work) training programs exist  d) Both pre-service and in-service training programs exist  e) Other (please describe): .............................................................................................................................6. Please indicate what proportion of all young children in the country receive the services listed. Please also indicate whether these services are free of charge (paid by government or other insurance and free/ or minimal cost to families). A service may be received by few children but may be a free-of-charge service. Free of What proportion of ALL young children receives service? charge? Most Many Some Few Very few– Services Yes No (100–75%) (74–50%) (49–25%) (24–5%) none (4–0%) 6.1 Prenatal and antenatal primary health care for mothers 6.2 Delivery by trained birth attendants 6.3 Primary healthcare in the first three years of life 6.4 Continuous healthcare by the same health care provider in the first three years of life 6.5 Prenatal screening for Down syndrome 6.6 Neonatal screening for phenylketonuria 6.7 Neonatal screening for hypothyroidism 6.8 Neonatal screening for hearing loss 6.9 Growth monitoring 6.10 Nutritional counseling 6.11 Iron supplementation to prevent anemia 6.12 Iodized salt 6.13 Basic immunizations 6.14 Developmental surveillance (child development is followed during routine healthcare by trained providers) 6.15 Developmental screening (standardized instruments or tests are used to detect developmental delay) 6.16 Counseling to the caregivers during health care visits on how to enhance their child’s development 6.17 Home visiting by healthcare providers 106
  • ANNEX 17. Which systems in your country are responsible for routine home visiting? Check systems only if they aim to reach all young children in the country.  a) Routine home visiting is not a part of any system  b) Health care system  c) Education system  d) Social services system  e) Other (please explain): ............................................................................................................................8. Who does routine home visits for most young children? (Please check one)  a) Home visiting is not a routine part of any system  b) Healthcare providers  c) Paid people other than healthcare providers  d) Non-paid volunteers  e) Other (please describe): ...........................................................................................................................9. What is generally provided during home visits? (Check all that apply)  a) Immunizations  b) Assessment of child’s growth  c) Assessment of all areas of child development  d) Assessment of selected areas of child development, please indicate which area: ......................................................................................................................................................................  e) Assessment of caregiver/family stressors and needs  f) Counseling caregivers about child’s physical health  g) Counseling caregivers about how to enhance their child’s development  h) Other (please describe): ...........................................................................................................................Section 3.Services for children with developmental risk and difficulties10. In your country is there a law that mandates that young children with developmental difficulties should have access to early intervention services?  a) No  b) Yes and the law was first established in the year .................................................................................11. Please name instruments for developmental screening or assessment that are used routinely in your country by many (at least 50%) of health care providers that work with children to determine the presence of developmental difficulties in young children.  a) Instruments are not used routinely  b) Instruments used routinely are: i. ...................................................................................................................................................................... ii. ...................................................................................................................................................................... iii. ......................................................................................................................................................................12. Please name classification systems (eg: International Classification of Functioning, Diagnostic Classification 0-3) that are used in your country by many (at least 50%) of health care providers that work with children to diagnose or determine the presence of developmental difficulties in young children.  a) Classification systems are not routinely used  b) Classification systems routinely used are: i. ...................................................................................................................................................................... ii. ...................................................................................................................................................................... iii. ...................................................................................................................................................................... 107
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD13. In the past ten years in your country have there been any population surveys that provide specific information on the number of children aged 0–36 months with developmental difficulties?  a) Surveys don’t exist or existing surveys do not provide this specific information  b) Surveys provide information and the proportion of children aged 0–36 months with developmental difficulties is .................. %.14. Who is most likely to first recognize that a young child has developmental difficulties? (Check one only)  a) Caregivers (parents and relatives)  b) Pediatrician  c) Community medical doctor  d) Community healthcare provider other than medical doctor  e) Daycare teacher  f) Other (please explain): ..............................................................................................................................15. Who most often conducts an evaluation and diagnose the child to have a developmental difficulty? (Check one only)  a) Pediatrician  b) Community medical doctor  c) Community healthcare provider other than medical doctor  d) Early intervention specialist  e) Daycare teacher  f) Other (please explain): ..............................................................................................................................16. Who most often decides which kind of early intervention (EI) and/or rehabilitation services the child should receive? (Check one only)  a) Services don’t exist  b) Pediatrician  c) Community medical doctor  d) Community healthcare provider other than medical doctor  e) Early intervention specialist  f) Daycare teacher  g) Other (please explain): ..............................................................................................................................17. Does the child need criteria, disability score, ratio or classification to be eligible for EI and/or rehabilitation services?  a) Services don’t exist  b) No  c) Yes, please describe what criteria make a child eligible for services: ......................................................................................................................................................................18. What is the background training of people that provide EI in your country? (Check one only)  a) University or college level in early intervention or related discipline  b) High school level with focus on early intervention or related discipline  c) One-two years of specific training in EI or related discipline  d) Less than 1 year but more than 1 month of specific training in EI or related discipline  e) One month or less of specific training  f) Other .......................................................................................................................................................... 108
  • ANNEX 119. In your country how are EI services most commonly provided? (Check one only)  a) Home based services to individual child  b) Center based services to individual child  c) Center based services to groups of children  d) Other (please describe): .............................................................................................................................20. In your country, are caregivers/families generally present during EI hours? (Check one only)  a) Caregivers are present during most EI hours  b) Caregivers are not present during most EI hours  c) Other (please describe): .............................................................................................................................21. In your country, how are EI services usually provided?  a) EI is mostly family centered (caregivers are viewed as an active partner and have equal input as professionals)  b) EIS are mostly child centered (caregivers are informed but professionals mainly focus on improving skills of child)  c) Other: .........................................................................................................................................................22. Are young children with developmental difficulties placed in residential centers (centers where children live for long periods without family) in your country?  a) Residential centers for young children do not exist  b) Residential centers exist and approximately .................. % of young children with developmental difficulties live in residential centers23. Please indicate what proportion of all young children with developmental difficulties or their families receive the services listed in your country. Please also indicate whether these services are free of charge (government subsidized or otherwise insured) and at minimal cost to families for all young children who are in need of these services. What proportion of all young children with developmental Free of difficulties or their families receive services? charge? Most Many Some Few Very few– Services Yes No (100–75%) (74–50%) (49–25%) (24–5%) none (4–0%) 23.1 EI if the young child has developmental delay 23.2 EI if the young child is not delayed but is at risk of developmental delay due to biological causes such as premature birth or malnutrition 23.3 EI if the young child is not yet delayed but is at risk of developmental delay due to psychosocial causes such as poverty or maternal depression 23.4 Psychological counseling 23.5 Information to caregivers on how to help the child develop 23.6 Physical rehabilitation for motor development 23.7 Orthopedic treatments 23.8 EI for cognitive difficulties 23.9 EI for social and or emotional difficulties 23.10 EI for difficulties in caregiver-child relationship 109
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOOD What proportion of all young children with developmental Free of difficulties or their families receive services? charge? Most Many Some Few Very few– Services Yes No (100–75%) (74–50%) (49–25%) (24–5%) none (4–0%) 23.11 Occupational therapy for fine motor difficulties 23.12 Hearing aids 23.13 Speech and language therapy 23.14 Day care (child care) 23.15 Special transportation services to reach EI23.16 Financial aid to caregivers for having a child with difficulties 23.17 Please list any additional services (apart from those listed in question 23.1–23.16) that young children and their families may be likely to receive in your country: ............................................................................................................................................................................ ............................................................................................................................................................................ ............................................................................................................................................................................ ............................................................................................................................................................................ ............................................................................................................................................................................24. In your country what is the major source of funding for services listed in questions 23.1–23.17?  a) Government  b) Non-profit organizations (NGOs)  c) For profit organizations  d) Caregiver’s funds  e) Other (please describe): .............................................................................................................................25. What kind of impact do the following circumstances have in obstructing or facilitating the access of children who need the services you have listed in question 23. Please check X in one box for each question 24.1–24.10. No Some Great impact impact impact 25.1 Maternal education 25.2 Paternal education 25.3 Caregivers income 25.4 Geographical location in country 25.5 Urban (city) or rural (countryside, village) location 25.6 Ethnicity 25.7 Religion 25.8 Stigmatization (e.g.: child may not be allowed to enter nursery schools) 110
  • ANNEX 126. In the following case scenarios, what services would children living in your area of the country likely receive? Please check X in all boxes (a–l) that apply for questions 26.1–26.4. Case Scenarios 26.1  Six-month old born 26.2 One-year- 26.3 Three- 26.4  Six-month old prematurely, birth weight old with Down year old with whose mother is 1400 gr, poor weight gain, mild syndrome cerebral palsy severely depressed spasticity, not vocalizing a) Healthcare b) Healthcare by same medical doctor c) Sufficient nutrition d) Developmental evaluation e) Hearing evaluation f) Evaluation of vision g) Physical therapy h) Early intervention i) Counseling caregivers on how to support child’s development j) Treatment of maternal depression k) Home visits by EI/PT providers l) Financial aid 27. What is the usual range of hours of early intervention and physical rehabilitation services that the following children would qualify to receive in your country? Minimum Maximum hours/month hours/month 27.1 A 12 month old young child has severe cerebral palsy, cognitive and speech and language difficulties 27.2 A 12 month old child has Down syndrome without medical complications 27.3 A 6 month old child has birth weight 1000 grams but no obvious developmental difficulties so far27.4 A 6 month old child has a mother with severe major depression 111
  • DEVELOPMENTAL DIFFICULTIES IN EARLY CHILDHOODSection 4.Resources for Survey28. Please describe the 3 priority actions that you believe would improve EI services in your country in the next 5 years? a) ............................................................................................................................................................................ b) ............................................................................................................................................................................ c) ............................................................................................................................................................................29. Please list references for key publications or web sites that you have consulted to complete this survey: a) ............................................................................................................................................................................ b) ............................................................................................................................................................................ c) ............................................................................................................................................................................30. Please list key people, organizations or model programmes that are related to young children with developmental risks or difficulties in your country: Name Contact information (e-mail or web site preferred) a) ............................................................................................................................................................................ b) ............................................................................................................................................................................ c) ............................................................................................................................................................................Please provide any further information that you have not been able to provide in the survey and that you wouldlike us to know about young children with developmental difficulties in your country:Would you like your name to be acknowledged in the final report?  a) No b) Yes and it should be written as: ....................................................................................................................We greatly appreciate your time and efforts. 112