Home based care to the plwa ph.d. report by rs mehta


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Home based care to the plwa ph.d. report by rs mehta

  1. 1. HOME-BASED CARE TO THE PEOPLE LIVING WITH AIDS: A STUDY OF EASTERN RURAL NEPAL A dissertationSubmitted to the Faculty of Humanities and Social Sciences ofTribhuvan University in fulfilment of the requirements for the Degree of DOCTOR OF PHILOSOPHY in RURAL DEVELOPMENT By RAM SHARAN MEHTA Ph.D. Reg. No. 43/2064 Shrawan T.U. Reg. No. 5865-83 July 2011
  2. 2. LETTER OF RECOMMENDATIONWe certify that this dissertation entitled “Home-Based Care to the People Livingwith AIDS: A Study of Eastern Rural Nepal” was prepared by RAM SHARANMEHTA under our guidance. We hereby recommend this dissertation for finalevaluation by the Research Committee of the Faculty of Humanities and SocialSciences, Tribhuvan University, in fulfillment of the requirements for the Degree ofDOCTOR OF PHILOSPHY in RURAL DEVELOPMENT. __________________ Dr. Uma Kant Silwal Supervisor Associate Professor Central Department of Rural Development Trubhuvan University ______________________ Prof. Dr. Sarala Shrestha Expert Maharajgunj Nursing Campus Institute of Medicine Tribhuvan University Date: 22nd July 2011
  3. 3. APPROVAL LETTERThis dissertation entitled “Home-Based Care to the People Living with AIDS: AStudy of Eastern Rural Nepal” was submitted by Mr. Ram Sharan Mehta for finalexamination by the Research Committee of the Faculty of Humanities and SocialSciences, Tribhuvan University, in fulfillment of the requirements for the Degree ofDoctor of Philosophy in Rural Development. I hereby certify that the ResearchCommittee of the Faculty has found this dissertation satisfactory in scope and qualityand has therefore accepted it for the degree. ______________________ Prof. Nav Raj Kanel, Ph.D. Dean and Chairman Research Committee Faculty of Humanities and Social Sciences Tribhuvan University, NepalDate :
  4. 4. DECLARATIONI hereby declare that this Ph.D. dissertation entitled “Home-Based Care to the PeopleLiving with AIDS: A Study of Eastern Rural Nepal” I have submitted to the Officeof the Dean, Faculty of Humanities and Social Sciences, Tribhuvan University (TU),is entirely my original work prepared under the supervision of my supervisor. I havemade due acknowledgements to all ideas and information borrowed from differentsources in the course of writing this dissertation. The results of this dissertation havenot been presented or submitted anywhere else for the award of any degree or forany other purpose. No part of the contents of this dissertation has ever beenpublished in any form before. I shall be solely responsible if any evidence is foundagainst my declaration. ................................... Ram Sharan Mehta Tribhuvan UniversityDate:
  5. 5. ACKNOWLEDGEMENTSI am thankful to the faculty of Humanities and Social Sciences, TribhuvanUniversity (TU) for giving me the opportunity to conduct this study as a requirementof the Ph D programme.It is my proud privilege to express my profound sense of gratitude and heartfeltthanks to my esteemed supervisor Associate Professor Dr. Uma Kant Silwal, CentralDepartment of Rural Development (CDRD), Tribhuvan University, Kirtipur for hiscontinued valuable guidance and support throughout the period of this study. Hismotivational efforts, general assistance, clues to proceed further have proved a greatsource of inspiration to me for bringing this project to fruitful conclusions.I am deeply indebted and will remain ever grateful to Prof. Dr. Sarala Shrestha,Maharajgunj Nursing Campus, Institute of Medicine, Tribhuvan University forenabling me to comprehend the study and supporting me right from the selection ofthe problem to the conclusion of the research project and also for her professionalexpertise, guidance and encouragement.My heartfelt thanks go to the Head of Department, Prof. Dr. Pradeep Khadka,CDRD, TU, Kirtipur, and members of faculty of CDRD whose affection,encouragement and inspiration were a source of enduring strength for me.I am extremely thankful to Prof. Dr. Nav Raj Kanel, Dean, FoHSS and Dr. Tara KantPandey, Assistant Dean, FoHSS, TU, and research committee members forpermitting me to conduct this study and providing me moral support.I humbly acknowledge my heartfelt gratitude to Prof. Dr. Purna ChandraKarmacharya, Vice Chancellor, Prof. Dr. Rupa Rajbhandari Singh, Rector, Prof. Dr.B. P. Das, Hospital Director, Chief, College of Nursing, Head of Department ofMedical Surgical Nursing and other concerned authorities of B.P. Koirala Institute ofHealth Sciences (BPKIHS) for their continuous support and encouragement.I take this opportunity to express my sincere thanks to the Member Secretary andmembers of Ethical Review Board, BPKIHS for giving ethical clearance to conductthis study.
  6. 6. I express my deep sense of gratitude to the hospital Director/MedicalSuperintendents of BPKIHS, Koshi Zonal Hospital (KZH), Mechi Zonal Hospital(MZH) and Sagarmatha Zonal Hospital (SZH) for permitting me to collect theinformation from their hospital records, staffs, PLWHA and their caregiversattending the hospital for services.My special thanks are due to the Programme Coordinators of Home Based Care,President, Chair Person and other staffs of NGOs, Dharan Positive Group, KYC,Nav Kiran Plus, Family Health Centre, Lav Kus Ashram, NAPN and Members ofDistrict AIDS Coordination Committee (DACC) of Sunsari, Morang and JhapaDistricts for providing the relevant information about home based care and relatedaspects.I have no words to express my gratitude to the doctors of ART-Clinic, VCT-Nurses,VCT-Counsellor of BPKIHS, Koshi Zonal Hospital, Mechi Zonal Hospital andSagarmatha Zonal Hospital, and key informants Ms. Anjeer Shrestha, (BPKIHS),Mr. B.P. Chaudhary (MZH), Ms. Laxmi Gautam (KZH), Dr. Lekh Jung Thapa(BPKIHS), Ms. Kamala Baral (Nav Kiran plus), Ms. Sharmila Sharstha (FamilyHealth Centre), Ms. Laxmi Chaudhary (SZH) and Mr. Kapil Thapa (DACC,Morang), who have also supported me in data collection, focus group discussion andcollecting information from People living with HIV/AIDS and their caregivers.I can not forget my respondents, the people living with AIDS and their caregivers fortheir cooperation and participation in the study. Without their cooperation the studywould have been impossible.I express my sincere thanks to all the nursing staffs of Tropical ward of BPKIHS andall the ART/VCT counsellors and staffs of BPKIHS, KZH, SZH and MZH.I take this opportunity to express my sincere thanks to the staff of NCASC andUNAIDS for providing me the resource materials on HIV/AIDS.My special thanks are due to Mr. D.D. Baral, Assistant Professor, Statistian,BPKIHS, for his statistical assistance and support.My heartiest thanks are due to Mr. Swayam Prakash Sharma for undertaking thelaborious task of editing my thesis.
  7. 7. I take this opportunity to express heartfelt thanks to Prof. Dr. Prahlad Karki, HOD,Department of Internal Medicine, BPKIHS; Prof. Dr. Suman Rijal, In-charge,Infectious and Tropical Disease Unit, BPKIHS; Prof. Dr. Nilamber Jha, Chief,School of Community Medicine and Public Heath, BPKIHS; Prof. Dr. SudhaAgrawal, HOD, Department of Dermatology and Coordinator of ClinicalEpidemiology Unit, BPKIHS; Prof. Dr. C.B. Jha, Researcher; Dr. M.L. Das,Researcher, Dr. S.R. Niraula, Statistician; Dr. Iswari Sharma Paudel, Demographer;Mr. Sailesh Adhikari, Sociologist; Prof. Dr. Fedrick Conel, USA, Visiting PublicHealth Faculty, BPKIHS; Prof. Dr. Pramod Mohan Sangwa, HOD, Department ofPsychiatric, BPKIHS; Prof. Dr. G.K. Singh, Epidemiologist; Prof. Dr. R.M. Pandey,Statistician, and Prof. Dr. Nita Pokhrel, former Chief, College of Nursing for theircontribution during the course of project development and tool validity.I wish to express my special appreciation to all those who encouraged me forenrollment in Ph D. I owe much of the credit for this study to the reference sourcescited.I humbly acknowledge my heartfelt gratitude to the University Grant Commissionfor providing me the Ph D scholarship grant and technical support.I want to express my heartfelt thanks to those who have helped me directly andindirectly during the course of this study.Above all my sincere thanks to God, the Almighty for giving me courage as it issaid, “God helps those who help themselves”. _________________ Ram Sharan MehtaDate:
  8. 8. ABSTRACTHIV/AIDS is a worldwide epidemic. For social and economic development, it is agreat issue. HIV and AIDS continue to spread rapidly throughout Africa and Asia,especially among young people aged 15-24 years. In world 33.2 million peopleliving with HIV and 50,000 people infected each year. In Asia 8.3 million areinfected with HIV. In Nepal first case of HIV was detected in 1988. It is estimatedthat 70,000 people are infected with HIV with prevalence in general population0.55%.It has been estimated that up to 90 percent of illness care may be provided in thehome by untrained family and associates, and up to 80 percent of AIDS relateddeaths occur in the home.Home based care is the care in the home which responds to the physical, social,emotional and spiritual needs of PLWA from diagnosis to death and throughbereavement. It aims to reduce suffering and increase quality of life by providingresponsive care, including self-care skills, linking clients to needed services andempowering PLWA to manage in the home.The objectives of this study were to investigate the home-based care aspects of thepeople living with AIDS and their caregivers; to find out the relationships betweensocio-demographic variables and home-based care aspects of PLWA and theircaregivers; to explore the effects on the caregivers and their family related to PLWA;and to implement and evaluate an education intervention programme on home basedcare to the people living with AIDS and their caregivers.This study has two parts. In the first part there is aspect analysis of home based careand in the second part an education intervention programme on home based care wascarried out.The first part of the study was conducted with descriptive cross sectional researchdesign using both qualitative and quantitative methods including Interview, FocusGroup Discussion, Case Study and Key Informant Interview. The study area waseastern region of rural Nepal. The people living with AIDS (PLWA) on Anti-Retroviral therapy (ART) for more than three months and their primary caregiversresiding in eastern rural Nepal constitute the target population of the study. ThePLWA on ART therapy and their caregivers residing in eastern region of Nepal who
  9. 9. fulfilled the set selection criteria was the sample of this study. Total 125 caregiversof PLWA were included in the study for individual interviews and 14 PLWA wereincluded for case study. Six slots of focus group discussion (FGD) involving 9-11caregivers in each slot were arranged. Thirteen Key Informant Interviews were alsocarried out to collect the relevant information from concerned persons involved inthe care of people living with AIDS.The lists of all the PLWA belongs to Village Development Committee (VDC) wereprepared from the register of ART centers of eastern Nepal and a sampling framewas prepared. Total enumerative sampling technique was used to collect the datafrom caregivers of people living with AIDS. The PLWA on ART therapy for morethan three months and their caregivers were only included in the study.In the second part, education intervention programme, as a pilot project wasdesigned to care for the PLWA using pre-test post-test pre-experimental researchdesign. This programme was conducted at ART centre of B.P. Koirala Institute ofHealth Sciences on every Monday, Wednesday and Friday from 11am to 1pmcontinuously for 8 weeks; from 1st February to 30th March 2011, so that eachparticipant would get minimum of two chances to participate in the educationintervention programme on the day of ART clinic.As per ART clinic record of 2009, it was found that a total 722 PLWHA wereregistered in all the four ART centers of eastern region of Nepal and among thosetotal 299 were on ART and from 299 PLWA, 139 PLWA were from villagedevelopment committee. Out of 139, only 125 caregivers of people living with AIDSwho met the selection criteria were included in the study. It was found that most ofthe primary caregivers were female (69.6%), Hindus (92.0%), illiterate (49.6%), andunemployed (24.8%). The wives (55.2%) were the main caregivers.The majority of the (75.2%) people living with AIDS (PLWA) cared at home by thecaregivers was of age group of 25-40 years and married (76.0%). Most of the PLWA(77.0%) had suffering with HIV infection for more than 6 months. Majority of thePLWA (78%) on ART for more than 6 months. Forty seven percent of the PLWAfrom Morang district, 32.0% from Jhapa and 8.0% from Sunsari district.Only 12.0% caregivers received home based care training, whereas 52.5% hadparticipated in health education programme on HIV/AIDS. Majority of caregivers(60.0%) had limited knowledge about HIV/AIDS, 22.4% caregivers reported highrisk of HIV transmission, whereas 20.8% reported moderate risk. The knowledgeabout home based care among caregivers was low. Most of the caregivers reported
  10. 10. high caregiver burden (67.2 %) and high family burden (57.6 %). The majority ofcaregivers was suffering from stress and anxiety (60.0%), insomnia (56.0%),digestion problem (51.2%), loneliness (58.4%), headache (55.2%) and care undercover (56.8%). Most of the caregivers reported the problems in their social life(67.2%), privacy (75.2%), financial problems (82.4%) and problems ofdiscrimination (59.2%). Only 32.0% caregivers reported that they were fullyprepared to provide the care to PLWA; whereas, 38.4% reported adequatelyprepared, 25.6% reported somewhat prepared and 4.0% reported not prepared at all.Most of the caregiver (83.0%) spent 3-9 hrs/week on care of PLWA, 12.0% receivedformal HBC training and 52.5% participated in health education programme onHIV/AIDS. Majority of the caregivers (60.0%) had only limited knowledge onHIV/AIDS. The high risk of HIV transmission reported by caregivers is 22.4% ,20.8% reported moderate risk, 37.6% caregivers were HIV positive and 19.2% donot know about transmission of HIV. The services provided by caregivers wereemotional support (44.2%), helping in ADL (57.6%), health care advocacy (62.4%)and nursing care (60.8%) to the people living with AIDS.The association calculated using Chi-squire test between the demographic variableswith home based care aspects found statistically significant with age group andhealth problems of caregivers (p < 0.001), income and health problems of caregivers(p =0.03), marital status and health problems of caregivers (p = 0.02) but notsignificant with sex and health problems of caregivers (p =0.25). The associationcalculated using Chi-squire test between demographic variables and caregiverburden found significant association with marital status (p =0.02) and religion (p=0.023). Similarly, the association calculated between demographic variables andfamily burden score were not significant at 0.05 level of significance.The association calculated between the all 15 components of caregiver burden and20 components of family burden found statistically significant at 0.05 level ofsignificance. The association calculated using McNemar Chi-squire test between thedifference in scores of pre-test and post-test after education intervention programmeon home based care found significant in most of the variables at 0.05 level ofsignificance.The findings of the study obtained from caregivers of people living with AIDS aresupported by the results obtained from Case Study, Focus Group Discussion, andKey Informant Interview. The provision of appropriate care at all levels is hamperedby the lack of human, technical and financial resources; continuing high levels of
  11. 11. stigma; and the fact that most people living with HIV/AIDS today do not know theyare infected.The care giving process placed considerable demands on caregivers at householdlevel, negatively impacting on their mental health. Insufficient support, lack ofincome and dire poverty experienced by most respondents, and the addedresponsibilities of caring for other household members exacerbated the psychosocialimpact. The lack of support that the household caregiver received was as debilitatingas the caring process. These issues need urgent attention at policy and programmelevels.The findings of the study have implications in the capacity building of caregivers ofPLWA for enhancing the quality of life of PLWA. It is recommended that NationalCentre for AIDS and STD control (NCASC) continue to support increasing access tocommunity and home-based care as part of its national strategy and identify ways inwhich to expand and integration of these services into the public health care system.
  12. 12. TABLE OF CONTENTSLETTER OF RECOMMENDATION iiAPPROVAL LETTER iiiDECLARATION ivACKNOWLEDGEMENTS vABSTRACT viiiLIST OF TABLES xviiiLIST OF FIGURES xviiiABBREVIATIONS AND ACRONYM xx CHAPTER I INTRODUCTION1.1 Background 11.2 General and Specific Objectives 4 1.4.1 General Objective 4 1.4.2 Specific Objectives 41.3 Hypotheses 51.4 Operational Definitions 5 1.4.1 People living with AIDS (PLWA) 5 1.4.2 Home Based Care 5 1.4.3 Eastern Rural Nepal 5 1.4.4 Aspects Analysis 6 1.4.5 Home Based Care Aspects 6 1.4.6 Effects on the Family 6 1.4.7 Caregiver 6 1.4.8 Family 61.5 Variables of the Study 6 1.5.1 Independent Variables 6 1.5.2 Dependent Variables 71.6 Rationale of the Study 71.7 Conceptual Framework of the Study 111.8 Chapter Outline 14
  13. 13. CHAPTER II REVIEW OF THE LITRATURE2.1 Overview of HIV/AIDS Situation 16 2.1.1 Global Picture 17 2.1.2 Asian Situation 17 2.1.3 South-East Asia Region 17 2.1.4 Situation in Nepal 192.2 Pathogenesis of HIV/AIDS 20 2.2.1 Definition of HIV/AIDS 20 2.2.2 Causes and Transmission of HIV/AIDS 21 2.2.3 Pathology of HIV/AIDS 232.3 Epidemiology of HIV/AIDS 25 2.3.1 The Current HIV Epidemic in Nepal 26 2.3.2 Reasons for Fuelling the Epidemic 26 2.3.3 Reasons for Growing Problems of HIV/AIDS in Nepal 312.4 Treatment, Care and Support for PLWA 32 2.4.1 Caregiver of PLWA 34 2.4.2 Home Based Care to the PLWA 35 2.4.3 Care of Dying PLWA at Home 35 2.4.4 HIV/AIDS and Quality of Life 362.5 Stigma and Discrimination related to HIV/AIDS 392.6 Conflict and HIV/AIDS 422.7 Need of the People Living with HIV/AIDS 44 2.7.1 Home Based Care Providers: Knowledge, Attitude, and Practices 47 2.7.2 Rights of the Infected, Affected and Vulnerable Groups 482.8 Importance of Home Based Care Services 49 2.8.1 Home Based Care Aspects of Care Provider 52 2.8.2 The Burden of Health Care Provider Burnout 54 2.8.3 Care for the Caregiver 56 2.8.4 Home Based Care Services 60 2.8.5 Home Care Models 60 2.8.6 Mobilization of Community Resource 63 2.8.7 Cost of Home Based Care 64
  14. 14. 2.8.8 The Burden of Care 652.9 Expanding Care Continuum for HIV/AIDS 66 2.9.1 Issues and Challenges of HIV/AIDS Prevention and Treatment Programme in Nepal 692.10 HIV/AIDS and Rural Development 71 2.10.1 The Impact of the Disease on People and Societies 71 2.10.2 Rural Dimensions of HIV/AIDS 73 2.10.3 Impact on Rural Development 75 2.10.4 HIV/AIDS, Poverty and Development 77 2.10.5 HIV/AIDS and Child Labour 80 2.10.6 HIV/AIDS in Rural Communities: A New Set of Challenges 81 2.10.7 HIV/AIDS, Agricultural and Rural Development 822.11 Effects of HIV/AIDS on Caregiver, Family and Community 82 2.11.1 The Impact of HIV/AIDS on Informal Caregiver 84 2.11.2 Advocacy, Policy, Legal Reform and Human Rights 852.12 Ways to Improve the Status of HBC and Rural Development: Multi- Sectoral Approach 872.13 Recent Data and Information Related to Home Based Care 822.14 Summary of Literature Review 93 CHAPTER III METHODOLOGY3.1 Nature and Source of Data 973.2 Description of Study Area 983.3 Research Design 983.4 Universe Population and Sample 993.5 Sampling Technique 993.6 Research Instrument 100 3.6.1 Interview with caregivers 101 3.6.2 Focus Group Discussion with Caregivers 101 3.6.3 Case Study with People Living with AIDS 102 3.6.4 Key Informant Interview 1023.7 Validity and Reliability of the Tool 102 3.7.1 Pre-testing of the Tool 102
  15. 15. 3.7.2 Reliability of the Tool 103 Reliability Test of Caregiver Burden Scale 103 Reliability Test of Family Burden Scale 1043.8 Data Collection Procedure 1043.9 Education Intervention Programme 1053.10 Ethical Issues of the Research 1073.11 Data Analysis 1083.12 Limitations of the Study 108 CHAPTER IV ANALYSIS AND INTERPRETATION OF DATA4.1 Data obtained by Interviewing Caregivers 111 4.1.1 The Association Between Demographic Characteristics, Home Based Care Aspects, Caregiver Burden and Family Burden 127 4.1.2 The Association Between Values (<60% and ≥60%) of Home Based Care Aspects, Caregiver Burden, Family Burden, and Demographic Characteristics 1284.2 Results of Case Study Obtained from PLWA 134 4.2.1 Major Findings of Case Study 1364.3 Results of Focus Group Discussion 1394.4 Results of the Key Informant Interview 142 4.4.1 Care Provider 142 4.4.2 Adequacy of Care Received by PLWA at their Home 142 4.4.3 Importance of HBC 143 4.4.4 Discrimination in Home and Community 143 4.4.5 Stigma in Society 143 4.4.6 Support from NGOs and INGOs at Community Level 144 4.4.7 Status of PLWA at Home and Community 144 4.4.8 Major Needs of PLWA at their Own Home 144 4.4.9 Problems of Caregivers 144 4.4.10 Some Other Important Findings of Key Informant Interview were 145 4.4.11 Suggestions for Better HBC Services for PLWA 146 CHAPTER V
  16. 16. PRE-TEST POST-TEST RESULTS OF EDUCATION INTERVENTION PROGRAMME ON HOME BASED CARE5.1 Results of the HBC Education Intervention Programme 1495.2 Discussion of the Results of Education Intervention Programme 158 CHAPTER VI SUMMARY AND DISCUSSION6.1 Summary of the Study 1606.2 Discussions 163 6.2.1 Demographic Profile of People living with AIDS 163 6.2.2 HIV and ART status of people living with AIDS 164 6.2.3 Demographic Profile of Caregivers 165 6.2.4 Knowledge about HIV/AIDS among Caregivers 165 6.2.5 Service Provided by the Caregivers 166 6.2.6 Preparation of Caregivers 167 6.2.7 Problem faced by Caregivers 167 6.2.8 Association between Demographic Characteristics of Caregiver with Home Based Care Aspects, Problem Faced by Caregiver, Caregiver Burden, Family Burden and Related Aspects 169 6.2.9 Association between Caregiver Burden and Family Burden 171 6.2.10 Association between knowledge, Skill and Practice related to care of Health Problems of People Living with AIDS before and after Education Intervention Programme 172 CHAPTER VII CONCLUSION AND RECOMENDATIONS7.1 Conclusion of the Study 1747.2 Recommendations of the Study 1787.3 Areas for Further Studies 1807.4 Implications of the study 181APPENDICES 182-244Appendix I Interview Questionnaire for Caregiver 182Appendix II Focus Group Discussion Guidelines 191Appendix III Case-Study Guidelines for PLWA 194
  17. 17. Appendix IV Key Informant Interview Guidelines 196Appendix V List of Experts Consulted for tool Validity 197Appendix VI Informed Consent Form 198Appendix VII List of INGOs/NGOs Actively Involved in Care of People Living with HIV/AIDS in Eastern Nepal 199Appendix VIII Association between Demographic Characteristics of Caregivers with Home Based Care Aspects 200Appendix IX Association between Demographic Characteristics of Caregivers with Problem faced by Caregivers 201Appendix X Association between Demographic Characteristics of Caregivers with Caregiver Burden 202Appendix XI Association between Demographic Characteristics of Caregivers with family Burden 203Appendix XII Association between Caregiver Burden with Family Burden 205Appendix XIII Detailed Description of Focus Group Discussion 209Appendix XIV Detailed of Key Informant Interviews 217Appendix XV Treatment and Care (Anti-Retroviral Therapy) Sites 227Appendix XVI CD-4 Test and Facs Calibre Sites 228Appendix XVII Prevention of Mother to Child Transmission of HIV Sites 229Appendix XVIII HIV and AIDS Epidemic Update of Nepal 230Appendix XIX HIV Testing and Counseling Services in Nepal 231Appendix XX Cumulative HV/AIDS Situation of Nepal 232Appendix XXI List of Contents of Home Based Care Booklet 233Appendix XXII Logistic Regression between Caregiver Burden with selected Demographic Variables and HBC Aspects Variables 237Appendix XXIII Logistic Regression between Family Burdens with selected Demographic Variables and HBC Aspects Variables 238Appendix XXIV Interview Questionnaire: Pré-test /Post-test 239Appendix XXV Time Table of Education Intervention Programme 243Appendix XXVI Ethical Clearance Letter from IERB, BPKIHS 244LIST OF PLATES 245-249REFERENCES 250-265
  18. 18. LIST OF TABLES2.1 HIV Burden and Access to Antiretroviral Treatment in SEAR Countries 293.1 Details of Sampling Procedure 1004.1 Demographic Characteristics of the People Living with AIDS 1114.2 HIV/AIDS and Related Aspects of the PLWA 1124.3 Socio-demographic Characteristics of Caregivers 1134.4 Occupation and Economic Status of Caregivers 1144.5 Home Based Care Related Aspects of Caregivers 1154.6 Knowledge about HIV/AIDS among Caregivers 1164.7 Knowledge about causes and Transmission of HIV among Caregivers 1174.8 Services Provided by the Caregivers to People Living with AIDS 1184.9 Help and Support Received by Caregivers from INGOs/NGOs Personnel 1184.10 Preparation of Caregivers to Provide care to Health Problems to PLWA 1194.11 Ability of Caregivers to Measure the Symptoms of PLWA 1204.12 Problem Faced or Habits Developed by Caregivers Related to Care of PLWA 1214.13 Satisfaction among Caregivers in Providing HBC to the PLWA 1214.14 Responsibilities Perceived by Caregivers Providing HBC to the PLWA 1224.15 Effects on Caregivers Related to Care of PLWA 1234.16 Needs of the Caregivers to Provide Better HBC to the PLWA 1244.17 Caregiver Burden Based on Caregiver Burden Scales 1254.18 Family Burden Based on Family Burden Assessment Scale 1264.19 Association Between Characteristics of Caregiver with Home Based Care scores 1294.20 Association Between Demographic Variables of the Caregiver with Family Burden Scores 1304.21 Association Between Demographic Characteristics with Family Burden Scores 1314.22 Association Between Home Based Care Aspects with Caregiver Burden Scores 132
  19. 19. 4.23 Association Between Home Based Care Aspects with Family Burden Scores 1334.24 Association Between Family Burden Scores with Caregiver Burden Scores 1334.25 Demographic Characteristics of the PLWA Included in Case Study 1344.26 HIV and Related Aspects of the PLWA Included in Case Study 1354.27 Problem Faced by the People Living with AIDS (Multiple Responses) 1365.1 Comparison of Socio-demographic Characteristics of the PLWA and their Caregivers involved in Education Intervention Programme 1505.2 ART and HIV Related Status of the PLWA and their Caregivers 1515.3 Knowledge Related to HIV/AIDS and HBC among PLWA and their Caregivers 1525.4 Differences in knowledge about drugs used in the Management of OIs among Caregivers after Education Intervention 1535.5 Differences in Ability to access the Vital Status among the PLWA and their Caregivers after Education Intervention 1545.6 Differences in knowledge and Practices on Using Preventive Measures after Education Intervention 1555.7 Differences in the Ability to Manage the Common OI Symptoms at Home 1565.8 Suggestions given by Caregiver to improve HBC at their Home 1565.9 Evaluation Related of the Education Intervention Programme 157 LIST OF FIGURES1.1 Conceptual Framework based on WHO HIV/AIDS Care Continuum Model 142.1 HIV/AIDS Situation in Nepal: At a Glance 30
  20. 20. LIST OF ABBREVIATIONS AND ACRONYMSAIDS Acquired Immune Deficiency SyndromeARV Anti-RetroviralART Anti-Retroviral TherapyBPKIHS B. P. Koirala Institute of Health ScienceBTS Blood Transfusion ServiceCBO Community Based OrganizationCHBC Community Home Based CareCSW Commercial Sex WorkerDoHS Department of Health ServicesFCHV Female Community Health WorkerHBC Home Based CareHIV Human Immunodeficiency VirusIDU Injecting Drug UserIEC Information, Education and CommunicationILO International Labour OrganizationINGO International Non Government OrganizationMDR Multi-Drug ResistanceMoH Ministry of HealthMSM Men Who Have Sex with MenNCASC National Center for AIDS and STD ControlNACC National AIDS Coordination CommitteeNFE Non Formal EducationNGO Non Government OrganizationNHEICC National Health Education, Information and Communication CenterNHTC National Health Training CenterNRCS Nepal Red Cross SocietyOI Opportunistic InfectionPLWA People Living with AIDSPLWHA People Living With HIV and AIDSPMTCT Prevention of Mother to Child TransmissionSTD Sexually Transmitted DiseaseSTI Sexually Transmitted InfectionVCT Voluntary Counseling and TestingVDC Village Development CommitteeUNGASS United Nations General Assembly Special Session
  21. 21. CHAPTER I INTRODUCTION1.1 BackgroundGlobally more than 34 million people were living with HIV at the end of 2010(UNAIDS, 2010). Total 30.8 millions of adults and 2.5 million children were livingwith HIV in 2009. The people newly infected with HIV in 2009 were 2.6 million;total AIDS deaths were 1.8 million and over 7000 new HIV infections a day. About97% of people living with HIV were in low and middle income countries (UNAIDS,2009).Social and economic vulnerabilities, including poverty and illiteracy, highlight theneed to act effectively and aggressively to reduce its spread. South Asia has about4.2 million of the world’s 36 million people living with HIV/AIDS. While overallprevalence rates remain relatively low, the region’s large populations mean that arise of a mere 0.1percent (NCASC, 2007).Delay in diagnosing HIV infection, continuing stigma, the high cost of the drugs fortreating the disease, and limited health system capacity is preventing more than amillion people in South-East Asia from receiving vital HIV treatment, preventionand care. More than two out of three HIV-infected people in need of treatment do notreceive life-saving antiretroviral treatment in WHO’s South-East Asia Region. Only577000 people (32%) of those in need receive this treatment. The Region has thesecond highest burden of HIV in the world after Sub-Saharan Africa; with anestimated 3.5 million people infected and 230 000 AIDS-related deaths. Anestimated 1.3 million women aged 15 and above currently live with HIV in theRegion. The estimated number of children living with HIV increased by 46% during2001 to 2009 (NCASC, 2009)Lack of information about the disease is a significant contributing factor to theescalation of HIV/AIDS. The communities most affected by HIV/AIDS lack the
  22. 22. most basic information about health care, human, sexual and reproductive rights(Underwood, 2006).The current situation of HIV in Nepal is different from when the first case wasdiagnosed in 1988. There are gaps and challenges to be addressed in the fight againstHIV and AIDS. Nepal is low prevalence (0.5 percent) country for HIV and AIDS.However, some of the groups show evidence of a concentrated HIV epidemic e.g.sex workers (19.5 %,) migrant population (4.0 to 10.0%), and intravenous drug users(IVDUs), both in rural and urban areas (68.0 %). Since 1988, MoHP/DoHS anddifferent stakeholders came forward to address HIV and AIDS issues. The mainfocus was given to preventive aspects. In 1995 MoHP in consultation with differentstakeholders developed a policy for the control of HIV and AIDS. However, theactivities were implemented in a sporadic and disorganized manner (NCASC, 1996).National Centre for AIDS and STDs Control (NCASC)/Ministry of Health andPopulation (MoHP) came to the conclusion that every stakeholder working in thefield of HIV and AIDS should come forward and work under one umbrella withinthe framework of a single policy. As a result in 2002 a new strategy for HIV andAIDS was developed for 5 years (2002 to 2006) and consequently an operationalwork plan was developed for 5 years (2003 to 2007). However, there are many gapsthat were not identified during development of the New Strategy Guidelines thatneed to be addressed while revising it in 2006. The new strategy spotlights thefollowing main areas i.e. vulnerable groups, young people, treatment, care andsupport, epidemiology, research and surveillance, management and implementationof an expanded response (NCASC, 2006).Broad political commitment, a multi-sectoral approach, civil society involvement,public-private partnership, reduction of stigma and discrimination against peopleinfected and affected by HIV/AIDS and human rights based approach have beenoutlined as some of the guiding principles in the development of the strategy. Toenable high level and multi-sectoral commitment in the response to the HIV/AIDSepidemic in Nepal, a high level National AIDS Council (NAC) chaired by the PrimeMinister was formed. There is a National AIDS Coordination Committee (NACC)
  23. 23. chaired by the Minister of Health which is responsible for reviewing and approvingwork plans and budgets, reviewing reports, and guiding implementation of thenational strategy. The NCASC has the authority for technical review and advice onpolicy and funding issues and acts as the secretariat to the NACC. The NACCreports to the NAC. There is also a Steering Committee chaired by the HealthSecretary that meets on a regular basis to review programme activities as well as toguide and direct programme implementation (NCASC, 2009).The presence of multiple terms used to describe the effects of care giving may leadto confusion in synthesizing care giving aspects. Investigators have documented thenegative biopsychosocial effects associated with providing care for a relative orfriend. Understanding the concepts related to care giving experiences and therelationships among them can enable health workers to better address the needs ofcaregivers (Hunt, 2003).The home based family caregiver burden is due to personal problem of caregivers,financial limitations, inadequate resources, inadequate knowledge and insufficientsupport. The home based care outcomes to PLWA can be categorized in positive,negative and neutral terms. Hunt (2003) mentioned that in positive terms it’s calledcaregiver esteem, caregiver satisfaction and uplifts of caregiver. The negativeconsequences include caregiver burden, caregiver stress, and caregiver strain. Theneutral term used are caregiver appraisal, caregiver well being and quality of life.Most of the caregiver outcomes have shown the negative effects i.e. called caregiverburden. The caregiver burden is both predictor and outcome. The perceived burdensare related to emotional, physical, social life and financial status of care providers.The concept of family need not be limited to ties of blood, marriage, sexualpartnership or adaptation. This can be extended to individuals whose bonds are basedon trust, mutual support and a common density may be regarded as a family. Allfamilies, traditional or non-traditional, can help stop AIDS spreading by ensuringthat their members understand and follow safer behaviour and if one of theirmembers does fall ill with AIDS, families are often the best sources ofcompassionate care and support (Hunt, 2003).
  24. 24. Most of the HIV and AIDS home care is carried out by family members who have nocontact with professional help and suffer through lack of support. This means thatinfected people are inadequately looked after despite the best efforts of their carersand families who face economic, psychological and social difficulties. Studies haveshown that the most effective home based care programme involve ongoing supportfor their workers, support from local communities and integration within existinghealth systems. However, many home based care programme had, inadequate helpfrom home based care organizations, limited resources, risks faced by carers andeconomic burden on the family (Opiyo et al., 2008).In developing countries, families are the primary caregivers to sick members. Thereis clear evidence of the important role that the family plays in providing support andcare for people living with HIV/AIDS. However, not all-family response is positive.Infected members of the family can find themselves stigmatized and discriminatedwithin the home.This study explores the various aspects of home-based care to the PLWA and theeffects on the caregivers and the family residing in eastern rural Nepal. Based uponthe finding of the aspects analysis of this study, the available literature, WHO andNCASC guidelines the education intervention programme was implemented and theeffectiveness was evaluated.1.2 General and Specific Objectives1.2.1 General ObjectiveThe overall objective of this study is to examine the aspects of home-based care tothe people living with AIDS and their effects on caregiver and family in EasternRural Nepal1.2.2 Specific ObjectivesThe specific objectives of this study are: a. To measure the home-based care aspects to the people living with AIDS and their caregivers.
  25. 25. b. To find out the relationships between socio-demographic variables and home-based care aspects of people living with AIDS and their caregivers. c. To find out the level of burden on caregivers and their family. d. To evaluate the effects of education intervention programme on home- based care to the PLWA among the caregivers.1.3 Hypotheses Ho1: There is no association between socio-demographic variables of caregiver with home-based care aspects, caregiver burden and family burden. Ho2: There is no relationship between caregiver burden and family burden. Ho3: There is no significant difference between before and after education intervention programme in relation to knowledge and practice of care of people living with AIDS among the caregivers along with PLWA.1.4 Operational Definitions1.4.1 People living with AIDS (PLWA)The diagnosed and registered AIDS clients at ART centres, getting anti-retroviraltherapy and residing in eastern region of rural Nepal are called people living withAIDS.1.4.2 Home Based CareThe care provided to the PLWA by the caregiver at their home is called home basedcare. It includes the physical, psychological, social and spiritual care to the PLWA. Italso includes the provision of arrangement of resources and support to the PLWA atthe family level.1.4.3 Eastern Rural NepalAll the village development committee (VDC) of eastern region of Nepal is includedin eastern rural Nepal.
  26. 26. 1.4.4 Aspects AnalysisIt includes the analysis of home based care provided to the people living with AIDSby the caregivers.1.4.5 Home-Based Care AspectsHome-based care aspects includes the knowledge about HIV/AIDS, service providedto the PLWA, support received from NOGs/INGOs, assessment of health of PLWA,management of physical health problems, problems faced by caregivers, level ofpreparation to provide the care to PLWA, needs of caregivers for effective homebased care to the people living with AIDS provided by the caregivers at family level.1.4.6 Effects on the FamilyEffects on the family include the personal problems of caregivers, financiallimitations, inadequate resources, inadequate knowledge and insufficient support. Italso includes the stigma and discrimination along with burnout syndrome. Effects onfamily were assessed by using family burden assessment scale.1.4.7 CaregiverIt includes mainly the primary caregiver to the PLWA in the family who providesmost of the care to the PLWA.1.4.8 FamilyThe concept of family in this study is not limited to ties by blood, marriage, sexualpartnership or adaptation. Any group whose bonds are based on trust, mutual supportand a common density is regarded as a family.1.5 Variables of the study1.5.1 Independent variables a. Socio-demographic characteristics of PLWA and their caregivers: sex, age, religion, caste, education, marital status, occupation and health status. b. Education intervention programme on home-based care
  27. 27. c. Other related co-variables (home-based care aspects): knowledge about HIV/AIDS, service provided to PLWA, support received form NGOs/INGOs, assessment of health status of PLWA, management of physical health problems, problems faced by caregivers, level of preparation of caregivers and need of caregiver.1.5.2 Dependent Variables a. Effects on caregiver: The effect on caregivers was measured by using 15 items five points caregiver burden assessment tool based on the scale developed by Robinson (1983), where Cronbach’s alpha is 0.86. b. Effects on family: The effects on family was measured by using 20 items five points family burden assessment tool, based on the scale developed by Kipp et al. (2006), where Cronbach’s alpha is 0.87. c. Knowledge and practice on home based care.1.6 Rationale of the StudyThe demands and outcomes on the family caregivers of PLWA are enormous andneed to be addressed in terms of public health policy, health economics and patientcare perspectives. The care for PLWA is provided through general and infectiousdisease hospitals in Nepal. The increasing demand of family caregivers involves thepatient care. The studies have shown that AIDS clients would rather stay with theirfamilies at home than in a hospital. The necessary emphasis on family care giving iseven more significant because the family member is given the responsibility of thecare of people living with AIDS.There has been a growing interest over the past 20 years in exploring the care givingexperience. Over the course of the AIDS epidemic, family caregivers have providedan essential source of care to PLWA. The assessment of burden has become achallenging task for most researchers. The literature suggests that the characteristicsof the caregiver, the characteristics of the patient, stigma and the nature of the caregiving relationship are the determinants of caregiver burden (Vithayachockitikhum,2006).
  28. 28. An extensive body of literature underscore that providing care to an ill familymember is a stressful experiences for the entire family. Most of the care givingresearch has disproportionately focused on negative caregiver outcomes. Studyingthis aspect is of significance because social support has shown to be positivelyrelated to good health. It is associated with better health outcomes, better coping andless negative effects of stress which is particularly relevant in the context ofHIV/AIDS.The PLWA has a lot of physical health problems that needs care. The problems thatneed care are: Fever, Headache, Weight Loss, Anorexia, Oral thrush, Cough,Diarrhoea, Skin infection and Tuberculosis. Along with physical health problemsPLWA experience emotional and psychological problems to a great extent. Thefamilies experienced enormous burdens related to financial limitations, inadequateresources, and insufficient support (Fitting & Robins, 1985).AIDS in some African countries is already affecting sizeable populations and hasimportant implications for development. At the most basic level, it increasesmorbidity (illness) and mortality (death), particularly among young adultpopulations; decreases life expectancy, and increases infant and child mortality rates.The full impact is not clear, as nowhere has the epidemic run its course.HIV/AIDS is of concern in the rural development sector. Evidence shows that inmany countries there is currently a lower rate of HIV infection in rural areas. Forexample in Zambia in 1993, prevalence rates among women ranged from 33.3% inurban areas to 13.2% in rural (Agbonivtor, 2009). However, in other countries, forexample Swaziland and South Africa, there is little difference in the infection ratesbetween the rural and urban areas. The key determinant of the differential levels ofinfection is the amount of movement and interchange between urban and rural areas.Ironically, successful rural development will facilitate this process. It is possible that,even in rural areas with current low levels of HIV infection, these may climb, and intime approach those of the urban areas. Even if there is a differential between ruraland urban areas, the rural sector will not be immune to the impact of the epidemic.
  29. 29. The area of this study is eastern rural Nepal, where there is HIV/AIDS endemicespecially in Dharan, Biratnagar, Itahari, Kakarbhita, Rajbiraj, Lahan and Damak.The eastern region of Nepal is very prone to HIV/AIDS because there are a lot of IVdrug users in Dharan. Lauhure is the main occupation of majority of people residingin Dharan, Ithari, Damak, and eastern hilly districts. Eastern border of Nepal,Kakarbhita, is very near to Indian city of New Jalpaigudi, Siliguri and Darjeeling.Southern boarder of Nepal is also open and rural people go to India, especiallyPunjab, Delhi, Mumbai and other major cities frequently for earning and labourwork. In eastern Nepal, especially Jhapa and Morang there are major issues ofBhutanese refuges, where the problem of HIV/AIDS is also prevalent. These are thecommon reasons for increasing HIV infection in eastern Nepal.In eastern region of Nepal the main towns are Dharan, Biratnager, Itahari, Damak,Inaruwa, Rajbiraj, Bhadrapur, and Kakarbhita, where the rate of migration of peoplefrom urban to rural and rural to urban is very high. Many people residing in easternNepal are also involved in foreign labour, especially in the Gulf countries, that leadsto increase in the number of HIV infection related to high risk sexual behaviour.The NCASC data show that eastern region of Nepal is the area most prone toHIV/AIDS. In eastern region of Nepal there are four ART centers situated at Dharan,Rajbiraj, Biratnagar and Bhadrapur. Some other centres are going to be establishedin the near future as per plan of NCASC. The investigator is interested to conductthis study in eastern region of Nepal, in order to explore new facts that can bepractical and useful in policy implications, and problem solving.Home based care to the PLWA is not the alternative service of hospital care andprofessional health care providers’ services, it is a complementary service. Itincludes the physical, social, psychological and religious needs of the PLWA. Themain aim of home based care is to develop insight and positive thinking among thePLWA and their care provider family members.Home based care programme helps to regulate the services of PLWA in the familyand community; Increases knowledge regarding prevention, treatment, and care of
  30. 30. PLWA; Makes capable to obtain long term services for PLWA; Boost-up CareProvider for long term quality care; Able to manage the symptoms, Prevent and carethe problems related to opportunistic infection; Decrease the negative feelings andstigma related to HIV/AIDS in the family and society; Make patient capable to obtainavailable services in health care institutions; Provide quality services to PLWAeasily and Help utilize local resources of the community properly to care the PLWA.Advantages of home-based care are: • It frees up the number of hospital beds available for those who are very ill or suffering as a result of other diseases and accidents. • It involves the community in directly taking responsibility for HIV/AIDS. • It allows people who are ill to spend their days in familiar surroundings and stops them from being isolated and lonely. • It gives families access to support services as well as emotional support. • It promotes a holistic approach to care and does not only focus on narrow health needs. • It is pro-active and helps keep people healthy for longer. • It involves the patients in their own care and gives them more rights to decide about what should be done. • Many of the common diseases or conditions can easily be managed at home with the right training. • It takes a big burden off the family, especially children. • Home-based care focuses on the individual patient and her/his needs. • It avoids unnecessary referrals or admissions to hospitals and institutions. • It helps to co-ordinate different services in the community and get them all to people who need it through one volunteer. • It helps to collect data and to record information about what is happening in the community. • It makes sure that there is consistency of services and that everyone gets access to things like grants, projects and food parcels.
  31. 31. Ninety percent of people that are ill are cared for by their relatives. It is importantthat the relatives are properly equipped to do this work and get the emotional supportthey need. Where relatives are unwilling to look after someone, the home-based careproject will have to give more regular support and make sure that the person is notneglected.Keeping all these facts in mind the investigator has decided to conduct the study on,“Home Based Care to the People Living with AIDS in Eastern Rural Nepal: AnAspects Analysis”.1.7 Conceptual Framework of the StudyPeople with HIV/AIDS can live healthy lives for longer if proper care and support isprovided. People who are ill with AIDS need much more care than our hospitals andclinics can provide. It is vital that health workers work with communities andfamilies to make sure that people who are ill at home get proper care. This is wherethe idea of home-based care comes from. It is very important that the more directsupport and care roles are played below a hospital level so that the hospital can dothe things that it does best for diagnosis, treatment and medication.Family members are most often the direct caregivers for people who are ill. Familiesdo the basic washing, cleaning and feeding and it is important they get both trainingand emotional support. Where the patient does not have a direct caregiver, thevolunteers will have to do this work. If family members are available to providesome care, they should be trained by the volunteers who can also give someemotional support. Family members over 12 can be trained in basic hygiene, dealingwith simple infections, basic nutrition, bed baths dealing with blood and body fluids.They should learn how to protect themselves from infection, For example, coveringyour hands with a plastic bag when you deal with blood can save your life. Thevolunteers should give these families access to information, make referrals to otherservice providers and distribute food parcels and so on. They can also help peoplewho are ill to get medication from the clinics through their links with the healthworkers.
  32. 32. People with HIV/AIDS can look after themselves while they are able to. They shouldbe encouraged to keep themselves as healthy as possible and should be targeted forspecific programs such as: Wellness programs to keep as healthy as possible and tostrengthen immune systems, Nutrition programs, Training in basic hygiene andtreatment for common infections like skin infections. They themselves should betrained in basic health care and where possible should be drawn into support andother activity groups. It is very important for home-based care projects to target allpeople who are ill and being looked after at home.The review explores the specific issues that cluster around the provision of care inthe context of the global HIV/AIDS pandemic. The concept of the ‘care economy’provides a useful lens through which to view the HIV/AIDS pandemic, as itilluminates the increased labour, time and other demands placed upon householdsand shows that the assumptions on which norms and expectations of care provisionare based are increasingly being challenged. While some studies are being made inpolicy and programme around HIV and AIDS related care, much more needs to beknown and done to enable individuals, families and households to survive in a worldshaken by AIDS. A strategy of simply downloading responsibility for care intowomen, families and communities can no longer be a viable, appropriate orsustainable response and this is no less true in this current era of expanding treatmentoptions for people living with HIV and AIDS.Home based care (HBC) is one of the models of care that deliver health care andother support to PLWHA and their families. The World Health Organization (WHO)defines HBC as the provision of services in support the HIV/AIDS care process thattake place in the home of the HIV-infected person (WHO, 1989). It includesphysical, psychosocial, palliative, and spiritual activities (WHO, 2002) such asclinical monitoring and management of opportunistic infections (prophylaxis andtreatment), counseling, food supplementation/nutrition, and clean water. Services areprovided by a mix of staff that usually includes community volunteers, communityhealth workers, nurses, doctors, and other professionals. Other models of care thatdeliver health and support services to PLWHA and their families may require the
  33. 33. PLWHA to travel to a community center to obtain food and counseling, and to ahealth center for palliative care.Home-based caregivers were particularly valued for home visits, because theyprovided much needed material support. They counselled PLWA and their carers,provided palliative care, cooked and cleaned the house. They provided a much-needed respite for respondents who felt emotionally strengthened by their visits. Abonus for respondents was an informed home-based caregiver. NGOs were valuedby respondents because they met needs that the health services could not. In contrast,some caregivers felt that home-based carers ignored them and only gave support tothe PLWA.A conceptual framework is an integrated model of care designed to meet the healthneeds of the patients, families and communities. According to Stanhope andLancaster (2004), it is important to have a conceptual framework in research becauseit gives a basis for making decisions and establishing priorities. It also gives theresearcher an opportunity to examine programme systematically for deficiencies todeal with potential problems. Lastly, conceptual framework serves to explain whythings are done in a particular way. The conceptual perspective which has beendescribed in this chapter to guide the present study is quality of care which candetermine the quality of life for PLWHA. Through the thick descriptions of theexperiences from the participants in this study, it was possible to determine thedeficiencies in the implementation of HBC to PLWA in Eastern Rural Nepal.Home based care is not only an important mechanism for extending the continuumof care by providing at home the basic nursing care and treatment necessary formany of the afflictions that strike PLWHAs. It also promotes community awarenessof HIV/AIDS, provides an example to motivate behaviour change and decrease thestigma attached to the disease, and enables PLWHAs to maintain their family andcommunity roles. Home-based care is cost effective as well. It frees up hospital bedsand medical personnel for the acutely ill and thus relieves the burden on the healthcare system (UNAIDS, 2002).
  34. 34. The model for HIV/AIDS care continuum developed and used by WHO (2004) isdepicted in figure 1.1.Figure 1.1. Conceptual Framework based on WHO HIV/AIDS Care continuum model Social Support Peer Support and Services Voluntary Services Hospitals, HIV Clinics, Specialists and PLWA & Homes, Community Specialized care their & Hospices Facilities: Direct Care, Caregivers Services Infection Control, Terminal Care Health Centre, HIV Voluntary Dispensaries, Counselling and Traditional Care: Testing (VCT) Governmental & Non- governmental Care Seeking/Providing/ReferralSource: WHO, 20041.8 Chapter OutlineThis dissertation is written in seven chapters. The first chapter is introduction, whichcontains background of the study, objectives, rationale of the study, researchquestion, null hypothesis, operational definitions, variables, limitations of the studyand conceptual framework.In chapter two, review of literature is presented in fourteen sub-headings. In chapterthree, there is description of methodology, described under the various sub-headingsincluding research design, sampling technique, validity of tool, reliability of the tool,data collection procedure, education intervention programme, ethical issues of the
  35. 35. research, methods of data analysis and limitations of the study. The chapter four isanalysis and interpretation of data, described under main four sub-headings includingdata obtained by interviewing caregivers, results of case study obtained from peopleliving with AIDS, results of focus group discussion and the results of key informantinterview. In chapter five, there is description of results of education interventionprogramme, described under various sub-headings.Chapter six describes the summary of the study and discussion. Chapter sevenincludes conclusion and recommendations. The relevant documents and materials areincluded in appendices. Some relevant photographs are depicted in the list of theplates heading. At the end of the dissertation list of all the references cited areincluded.
  36. 36. CHAPTER II REVIEW OF THE LITRATUREIn accordance with the subject for study, an extensive review of the relevantliterature was carried out through the published national as well as international textbooks, periodicals, journals on medicine, nursing and public health. Surfing of theinternet and Medline was carried out to collect the latest information pertaining tothe subject. The literatures that were reviewed related to the subject are presentedunder the following heads: 2.1 Overview of HIV/AIDS Situation 2.2 Pathogenesis of HIV/AIDS 2.3 Epidemiology of HIV/AIDS 2.4 Treatment, Care and Support of People Living with AIDS 2.5 Stigma and Discrimination Related to HIV/AIDS 2.6 Conflict and HIV/AIDS 2.7 Need of the People Living with AIDS 2.8 Home-Based Care Services and Costs 2.9 Expanding Care Continuum for People Living with AIDS 2.10 HIV/AIDS and Rural Development 2.11 Effects of HIV/AIDS on Caregiver and Family 2.12 Ways to Improve the Status of Home Based Care 2.13 Recent Data and Information Related to HIV/AIDS and HBC 2.14 Summary of Literature Review2.1 Overview of HIV/AIDS SituationHuman Immunodeficiency Virus (HIV) infects humans. A person with HIV isinfected for life and can infect others. The virus attacks the immune system andslowly weakens the body’s defense against diseases. An HIV-infected person can
  37. 37. look and feel well for a long time without developing AIDS (Armirkhanian et al.,2003).Acquired immunodeficiency syndrome (AIDS) is a disabling and deadly diseasecaused by HIV. “Acquired” means something not inherent in the patient’s body buttransmitted from others; “immunodeficiency” refers to the weakened ability of thebody’s immune system that helps it ward off infections and diseases; and“syndrome” is the group of signs and symptoms associated with the disease. AIDSoccurs as a collection of infections called opportunistic infections that are usuallysevere, such as pneumonia or tuberculosis, manifest more often during the late stagesof HIV infection. An HIV infected person may not develop AIDS until 8 to 10 yearsafter being infected (Beine, 2003).2.1.1 Global PictureHIV/AIDS is a fourth biggest killer worldwide. Estimated 40.3 million are livingwith HIV; about one-third are aged 15-24 years. Most people don’t know they areinfected. Young women are especially vulnerable. More than 95% are in low ormiddle-income countries. In 2005 about 4.9 million new HIV infections was addedand 3.1 million deaths occurred due to AIDS. About 14,000 new HIV infections aday in 2005 and more than 95% are in low and middle-income countries (WHO,2006).2.1.2 Asian SituationThere is high HIV prevalence in India, Myanmar, Cambodia, Vietnam and Thailand.There is Low HIV prevalence among women in antenatal clinics but relatively highamong IVDUs in Nepal, China and Malaysia. There is low HIV prevalence inBangladesh, Bhutan, Indonesia, Maldives and Srilanka (NCASC, 2006).2.1.3 South-East Asia RegionAlthough the HIV prevalence rate is still low in South East Asia, it is one of the mostrapidly growing epidemics globally. Because of the largest population base andpresence of several factors that enhance the spread of HIV, including poverty, gender
  38. 38. inequality and social stigma, the South-East Asia Region is likely to increasinglysuffer the brunt of the epidemic (NCASC, 2006).As per report (WHO SERO, 2006) there is an estimated 6.7 million people are livingwith HIV/AIDS in South-East Asia in 2005; it is the second highest number of casesin the world after sub-Saharan Africa. It is estimated that less than 10 percent ofinfected persons are aware of their HIV status. India, with 5.1 million HIV/AIDScases, is second only to South Africa in terms of the numbers. Six states in thecountry, namely, Andhra Pradesh, Karnataka, Maharashtra, Manipur, Nagaland andTamil Nadu bear the highest burden.Report (WHO, 2006) also mentioned, the majority of HIV infections in the Regionoccur through unprotected sex between men and women. Throughout the Region,injected drug use is adding to the rapid spread of the epidemic. Around half ofinjection drug users have already acquired the infection in Nepal, Myanmar,Thailand, Indonesia, Manipur and Nagaland states in India. An estimated 9,50,000persons living with HIV/AIDS in the Region urgently require antiretroviraltreatment. The number of people on treatment was doubled during 2004 and nearly163,000 persons are receiving antiretroviral treatment at the end of December 2005(WHO SERO, 2006).In South-East Asia Region, the HIV epidemic remains highly dynamic, posingtremendous challenges to the public health system. An estimated 3.5 million peopleare living with HIV/AIDS in the Region. Women account for 33% of total peopleliving with HIV. In 2008, about 2,00,000 people were newly infected with HIV and2,30,000 died of AIDS related illnesses (WHO, 2006). The overall HIV prevalencein the region is slowly decreasing. However, country wise differences exist. In theparts of India, Myanmar, Nepal, Sri Lanka and Thailand, HIV prevalence isdecreasing or stabilizing although pockets of high transmission remain. HIVinfection is rapidly increasing in Indonesia.The majority of the HIV infections are transmitted sexually. Injecting drug use is animportant route of HIV transmission in several countries. In Thailand, a third of all
  39. 39. new infections are among low-risk women from their HIV-infected regular malepartners or husbands.Overall, HIV prevalence among the adult population is low (0.3%) in the Region, butsex workers and their clients, men who have sex with men and transgenderpopulations as well as injecting drug users are disproportionately affected by HIV. Insome areas (Thailand and south India), HIV prevalence has decreased among femalesex workers; however, there is evidence of continuing high transmission amonginjecting drug users and increasing HIV infection among men who have sex withmen in large cities (WHO, 2006).Consistent condom use with paying partners is reaching optimal levels among sexworkers; however, men who have sex with men, transgender populations andinjecting drug users have low rates of condom use. Men who have sex with menhave multiple partners and a large proportion of them are married to women.2.1.4 Situation in NepalThere is an estimated 0.5% national prevalence, concentrated epidemic, estimated70, 256 infected, about 12.0% of these have been tested, about 3000 deaths per year.In Kathmandu HIV prevalence among IV drug users (IDU) is 51.1% and amongfemale sex workers (FSW) is 4.0%. Estimates of prevalence of HIV-positive amonglabour migrants returning from India range from 4.0 to 10.0% (WHO, 2006).In Nepal the estimated number of PLWHA at the end of 2005 was 61,000. HIVprevalence in 2005 was 0.5%, estimated number of AIDS cases is 7,800, the numberof children (0-18) orphaned by HIV/AIDS is 18,000 and receiving Anti RetroviralTreatment (ART) till December 2005 was 210. HIV infection has taken root in SouthAsia and poses a threat to development and poverty alleviation efforts in the region.HIV infection is fuelled by risk behaviour, extensive commercial sex, low condomuse and access, injecting drug use, population movements (cross-border/rural-urbanmigration), and trafficking (WHO/UNAIDS, 2006).Social and economic vulnerabilities, including poverty and illiteracy, highlight theneed to act effectively and aggressively to reduce its spread. South Asia has about
  40. 40. 4.2 million of the world’s 36 million people living with HIV/AIDS. While overallprevalence rates remain relatively low, the region’s large populations mean that arise of a mere 0.1percent in the prevalence rate in India, for example, would increasethe national total of adults living with HIV by about half a million persons (Singh etal., 2006).The current situation of HIV in Nepal is different from when the first case wasdiagnosed in 1988. There are gaps and challenges to be addressed in the fight againstHIV and AIDS. Nepal is low prevalence country for HIV and AIDS. However, someof the groups show evidence of a concentrated HIV epidemic e.g. sex workers(19.5%), migrant population (4.0-10.0%), and intravenous drug users (IVDUs) bothin rural and urban areas (68.0%). Now, different stakeholders have come forward toaddress HIV and AIDS issues (NCASC, 2006).A significant percentage (60.0%) of HIV positive patients belongs to lower socio-economic class and many of them were mobile workers and contracted their illnesswhile working in Indian metropolis in the past (MOPH, 1996).2.2 Pathogenesis of HIV/AIDS2.2.1 Definition of HIV/AIDSHIV (Human Immunodeficiency Virus) is a virus that causes AIDS (AcquiredImmunodeficiency Syndrome), a health condition in which a person is affected by aseries of diseases because of poor immunity. HIV by itself is not an illness and doesnot instantly lead to AIDS. There is no way of knowing whether just looking at theminfects someone. An HIV-infected person can lead a healthy life for several years orshe can instantly pass the virus to others.AIDS is a health condition where the body’s immune system is gradually destroyedfollowing an HIV infection. Over a period of time, the immune system weakens andthe body loses its natural ability to fight against diseases. Eventually the infectedperson may lose weight and become ill with diseases like persistent severe diarrhoea,fever, skin diseases, pneumonia, TB or tumors. At this stage, he or she has nowdeveloped AIDS.
  41. 41. To reduce the transmission of HIV/AIDS, a number of activitieshave been undertaken over the last decade. National Centre ofAIDS and STD Control (NCASC) was established in 1993. NCASC isa coordinating body under the MOH, which looks after the AIDSand STD preventive activities in the country (NCASC, 2003).2.2.2 Causes and Transmission of HIV/AIDSThe predominant mode of transmission of HIV in Nepal is heterosexual contact withcommercial sex workers. HIV prevalence rates are about 4.0% among sex workers inthe Terai regions of Nepal and about 1.5% in their clients (which is more than fivetimes the national average prevalence). In Kathmandu, nearly 17.0% of sex workersare HIV-positive. There are about 25,000 sex workers in Kathmandu and anestimated 200,000 Nepalese women working in Indian brothels. About 5,000 to10,000 Nepalese sex workers are trafficked every year; numbers are likely toincrease as a result of the conflict. One striking estimate is that nearly 70% of sexworkers returning from India are HIV-positive (NCASC, 2003).More people are travelling and working away from home due to global economy.Men have more sex with sex workers, contract HIV and return home to their wives,who contract HIV and pass it along to their infants in uterus or through breast milk(NCASC, 2006).Among injecting drug users, estimated to be about 30,000 in Nepal, about 40.0% areHIV-positive. Needle sharing and risky sexual behaviour are common in this group.The figures are particularly alarming in Kathmandu, the capital city, where nearly68% of injecting drug users is HIV-positive. A subtype C virus with restrictedgenetic diversity is thought to have caused this epidemic in Kathmandu.Concomitant hepatitis C infection is a contributing factor to the rapidity and severityof disease progression in injecting drug users, and 94.0% of users in Kathmanduhave tested positive for hepatitis-C (NCASC, 2003).Similarly, NCASC also reported, denial and silence regarding HIV are the norms.People with HIV are stigmatized for many reasons like: HIV is a slow, incurable
  42. 42. disease, resulting in illness and death. HIV is considered a death sentence; Peopleoften do not understand how HIV is spread and are irrationally afraid of acquiring itfrom those infected with it.HIV transmission is often associated with moral violations of social moresconcerning sexual relations, so people with HIV are tainted with the notion of theirhaving done something “bad.” People tend to stigmatize or blame certain groups forspreading HIV, for example, sexually promiscuous people or drug users.Stigma prevents people from speaking about or acknowledging HIV as a major causeof illness and death. Stigma prevents HIV-infected people from seeking care andfrom taking preventive measures. Even when counselling and testing are offered,people may not want to know if they are infected for fear of being stigmatized; thisfuels the spread of the disease.In many societies people living with HIV and AIDS are often seen as shameful. Insome societies the infection is associated with minority groups or behaviour, forexample, homosexuality, in some cases HIV/AIDS may be linked to perversion andthose infected will be punished. Also, in some societies HIV/AIDS is seen as theresult of personal irresponsibility. Sometimes, HIV and AIDS are believed to bringshame upon the family or community and whilst negative responses to HIV/AIDSunfortunately widely exist, they often feed upon and reinforce dominant ideas ofgood and bad with respect to sex and illness, and proper and improper behaviour(UNAIDS, 2006).HIV/AIDS is a life-threatening disease. People are scared of contracting HIV. Thedisease is associated with behaviours (such as sex between men and injecting drug-users) that are already stigmatized in many societies. People living with HIV/AIDSare often thought of as being responsible for becoming infected. Religious or moralbeliefs lead some people to believe that having HIV/AIDS is the result of moral faultthat deserves to be punished (UNAIDS, 2006).Cultural traditions, beliefs and practices affect people’s understanding of health anddisease and their acceptance of conventional medical treatment. Culture describes
  43. 43. learned behaviour affected by gender, home, religion, ethnic group, language,community and age group. Culture can create barriers that prevent people, especiallywomen, from taking precautions. For example, in many cultures, domestic violenceis viewed as a man’s right, which reduces a woman’s control over her environment.This means she cannot question her husband’s extramarital affairs, cannot negotiatecondom use and cannot refuse to have sex (NCASC, 2006).Gender roles have a powerful influence on HIV transmission. In many cultures, menare expected to have many sexual relationships. There is social pressure on them todo so. This increases their risk of becoming infected. Because women often suffereconomic inequities, they often need to use sexual exchange as a means of survival.This exposes them to unacceptable risks when they try to negotiate safer sex (forexample, rejection, loss of support, and violence). Poor people lack access toinformation needed to understand and prevent HIV/AIDS. Ignorance of the basicfacts makes millions of people worldwide vulnerable to HIV infection. These lowera person’s inhibitions and impair judgment, which may result in risky behaviour.Injecting illicit drugs frequently involves the sharing of needles and injectionequipment, increasing the risk of HIV transmission (NCASC, 2006).Religious organizations play a central role in many communities and are an essentialpart of support networks for people living with HIV/AIDS and their carries.Religious faith often motivates people to provide practical care for people who aresick. This includes volunteering to care for people with HIV/AIDS. Religious faithalso encourages people to offer emotional and spiritual comfort, which is a type ofcounselling. This is especially important when the practical reality is difficult to facebecause there is little or no access to treatment and the burden of grief in thecommunity is very large (Olley et al., 2006).2.2.3 Pathology of HIV/AIDSMost people dont feel any difference after they are infected with HIV. In fact,infected people often do not experience symptoms for years. Some people developflu-like symptoms a few days to a few weeks after being infected, but thesesymptoms usually go away after some time.
  44. 44. An HIV-positive person will eventually begin to feel sick. The person might begin tohave swollen lymph nodes, weight loss, intermittent fever, infections in the mouth,diarrhea and feel tired for no reason all of the time. Eventually, the virus can infectall the bodys organs, including the brain, making it hard for the person to think andremember things (Armirkhanian et al., 2003).When a persons T cell count gets very low, the immune system is so weak that manydifferent diseases and infections by other germs can develop. These can also be lifethreatening. For example, people with AIDS often develop pneumonia, which causescoughing and breathing problems. Other infections can affect the eyes, the organs ofthe digestive system, the kidneys, the lungs, and the brain. Some people develop rareverities of cancers of the skin or immune system (Beine, 2003).Most of the children who have HIV got it because their mothers were infected andpassed the virus to them before they were born. Babies born with HIV infection maynot show any symptoms at first, but the progression of AIDS is often faster in babiesthan in adults. Doctors need to watch them closely. Kids who have HIV or AIDSlearn more slowly than healthy kids and tend to delay walking and talking.HIV-positive people should know the difference between HIV and AIDS. Theyshould understand how people become infected. Some HIV infected people stayhealthy for months or years, but can still transmit the virus to others. Some get flu-like symptoms such as fever, headache, sore muscles and joints, stomachache,swollen lymph glands or skin rash. With any unexplained symptoms or possibleexposure to HIV, testing should be considered. HIV testing looks for HIV antibodiesin the blood, saliva or urine. If tested too early, some HIV infected people may notobtain positive results. For accurate results, testing should be done two to six monthsafter exposure. A positive test result does not mean that a person has AIDS.Depending on HIV symptoms and test results (viral load and T-cell count), a personmay need to take ARV medication (Underwood, 2006).2.3 Epidemiology of HIV/AIDS
  45. 45. World AIDS Day has a special place in the history of the AIDS pandemic. Since1988, 1st December has been a day bringing messages of compassion, hope,solidarity and understanding about AIDS to every country in the world. World AIDSDay emerged from the call by the World Summit of Ministers of Health onProgramme for AIDS Prevention in January 1988 to open channels ofcommunication, strengthen the exchange of information and experience, and forge aspirit of social tolerance. Since then, World AIDS Day has received the support ofthe World Health Assembly, the United Nations system, and governments, churches,communities and individuals around the world. Each year, it is the only internationalday of coordinated action against AIDS (UNAIDS, 2002).“Stop AIDS: Keep the Promise” is the theme of World AIDS Day 2005. "Keep thePromise" is an appeal to governments and policy makers to ensure that they meet thetargets they have agreed to in the fight against HIV and AIDS.Awareness raising activities take place in almost all the countries around the world,often with mass participation; AIDS organizations mobilize and high levelgovernment officials speak out. There is broad, non-restrictive participation. Today,World AIDS Day has achieved such a level of recognition worldwide that it is set toremain a primary vehicle for reinforcing AIDS awareness at the international andnational level, regardless of the theme or level of United Nations participation.The estimated number of HIV cases is important information for formulating anational strategy on HIV/AIDS and for programme designing, monitoring andevaluation purposes. The National Centre for AIDS and STD Control (NCASC),Ministry of Health and Population (MOHP) of Nepal, with the technical support ofFamily Health International (FHI)/Nepal and United States Agency for InternationalDevelopment (USAID), estimated the number of adult HIV cases in Nepal for thefirst time in 2003. This estimation exercise was repeated again for the year 2005 byNCASC with technical assistance from FHI/Nepal and USAID. As before, theestimates are derived for four epidemic regions and combined to derive nationalestimates (NCASC, 2006).
  46. 46. 2.3.1 The Current HIV Epidemic in NepalMost cases of HIV infection in Nepal are HIV-1, although HIV-2 was also recentlyreported. As of February 2005, the National Centre for AIDS and STD Control inNepal reported that there were 4,755 HIV-positive people and 856 confirmed casesof AIDS in Nepal. However, because of the poor surveillance systems and the lackof access to quality voluntary counselling and testing services coupled withantiretroviral treatment, these prevalence figures are likely to be a gross under-estimate (NCASC, 2005). As per published data (NCASC, 2010) till 16th July 2010there were 16,138 PLWHA in Nepal, and among these 10497 were males and 5641were females.As per Nepal National AIDS Spending Report (NCASC, 2007), there wereassessments nearly 70,000 PLWHA are in Nepal. As of December 2008, total 2,387HIV cases have been reported; almost 70% come from the young, productive andworking age group, 20-39 years old. Male to female ratio is 2.1:1. Almost 39 % ofdisease burden is shared by labour migrants and almost 27% borne by urban andrural women who have low-risk behaviours, with only 1.5% ever having hadextramarital sexual relations. Three other most risk groups are IVDUs, MSM andFSW that collectively bear almost 12 % of total disease burden.UNGASS Country Progress Report (UNGASS, 2008), shows that 42.0% of all HIVcases in Nepal are among seasonal labour migrants, 15.0% among clients’ of sexworkers and 26% are wives or partners of HIV-positive men. Now, over 1240 peopleare receiving free ART from 16 sites across the country.2.3.2 Reasons for Fuelling the EpidemicSeveral factors contribute to the propagation of HIV in times of conflict. Whileaccurate numbers are hard to come by, the recent conflict may have contributed tothe propagation of HIV/AIDS by fuelling displacement. As the insurgency drags on,seasonal and long-term migration of labourers to neighbouring countries, such asIndia, becomes critical to the economic survival of many households. Young menhave left the country for fear of execution and migrated to the high-prevalence areas
  47. 47. in India. UNAIDS estimates at least 10% of the 2 million to 3 million Nepalesemigrant workers in India are HIV positive. These are now infecting spouses andothers in many parts of the country. By pushing rural residents from war-torn areasto the capital, Kathmandu, the conflict may have helped spread HIV/AIDS (NCASC,2003).Behavioural and sero-prevalence data indicate the high potential for a generalizedepidemic in Nepal. In the absence of effective interventions, even a "low to moderategrowth scenario" would make AIDS the leading cause of death in the 15-49 year oldpopulation over the coming years. For Nepal, this would mean that around 100000-200000 young adults will become infected and that overall 10,000-15,000 annualAIDS cases and deaths due to related illnesses may be expected (NCASC, 2009).The HIV/AIDS pandemic is a continuing threat to Nepal. Although the country has alow prevalence rate in the general population, it has already entered the stage of aconcentrated epidemic with prevalence rates exceeding 5% within certainpopulations, such as intravenous drug users and sex workers. UNAIDS estimates thatalmost 60,000 adults and children were living with HIV/AIDS in Nepal at the end of2002. In that year, there were an estimated 2,958 deaths due to HIV/AIDS. To date,more than 13,000 children have been orphaned in Nepal as a result of the disease.This spread of HIV/AIDS is closely related to the high levels of poverty, low statusof women, girl trafficking, forced prostitution, unsafe sexual practices and mobilityof migrant workers (Underwood, 2006).The heterosexual contact has been incriminated as the predominant mode oftransmission of HIV. Risk behaviour is widespread among female sex workers, theirclients, injecting drug users, labour migrants and youth. Increasing level of sexuallytransmitted infections (STIs) has been reported over the last few years. Social stigmaand discriminations make it difficult for the people living with HIV/AIDS and high-risk groups to practice safer sex, undergo testing and seek treatment and care ifinfected. HIV/AIDS would have the impact of increasing poverty, negative impacton socioeconomic development and the loss of productive life. The risk populationsand HIV/AIDS prevalence have been found sharply increasing after mid 1990s. The
  48. 48. prevalence rate among risk group populations is high in injecting drug users (IDUs)and female sex workers (FSWs). The increasing trend of the infection certainly hasgiven pressure to focus on the use of comprehensive targeted interventionprogramme in risk group sub-populations (Joshi et al., 2004).Estimating the number of IDU’s in Nepal is a difficult task because of the lack ofcredible data. Estimates released in the 1990s ranged from 2500 to 4000 nationwide,2000 of which were said to be present in the Kathmandu valley. Later in the samedecade, higher estimations of IDUs were recorded across several towns. Forexample, the estimated number of IDUs in Kathmandu valley climbed to a range of15,000 to 20,000. In 2001, the National Centre for STD and AIDS Preventionestimated the total number of IDUs in Nepal to be between 40,000 and 50,000(NCASC, 2005).An HIV Sentinel Surveillance (HSS) among antenatal clinic (ANC) attendees has yetto be carried out, but should provide valuable data for the group identified as womenat “low-risk.” The HSS on STI patients conducted during the first generation of thesurveillance system was limited due to several reasons. HSS/STI protocol for onewas not uniformly implemented in all sites, nor during the first few rounds and HSSconducted during the initial phases included several high-risk groups, but only laterfocused on STI patients. The number of sentinel sites was also reduced from seven tosix (NCASC, 2005).The sentinel surveillance for HIV infection was carried out in five urban areas ofNepal. From a total of 1850 selected sentinel group members coming for STDtreatment, 7 were found to be HIV-positive. A moderate HIV prevalence scenario forthe year 1993 prepared by the World Bank gives an estimated 10,000 HIV positivecases for the sexually active population of Nepal. A total of 341 HIV positive caseshave been reported to the National Centre for AIDS and STD Control until now,among which are a total of 51 AIDS cases. The majority of those affected arecommercial sex workers (CSW) and their clients, with a peak in the age group 20 to29 years.
  49. 49. By mid 1990s, Nepal has entered the concentrated epidemic stage with consistentHIV prevalence in Female Sex Workers (FSWs), Injecting Drug Users (IDUs) andmigrants. There were around 60,018 people living with HIV/AIDS and 2,598 AIDSrelated deaths by 2002. The HIV prevalence is estimated around 0.5 percent in thegeneral adult population. There is a high potential for and increased spread of HIVfrom high-risk groups to the general population (Joshi et al., 2004).HIV infection has taken root in South Asia and poses a threat to development andpoverty alleviation efforts in the region. HIV infection is fuelled by risk behaviour,extensive commercial sex, low condom use and access, injecting drug use,population movements (cross-border/rural-urban migration), and trafficking (Hunt,2003).The WHO SERO (2006) HIV/AIDS Report reported that South Asia is very prone toHIV/AIDS. The details are depicted in table 2.1. Table 2.1 HIV Burden and Access to Antiretroviral Treatment in SEAR Countries Estimated number of people Estimated HIV Estimated receiving ART in public and private number of Country prevalence number of sectors by PLWHA by the in 2005 AIDS cases end of 2005 * Dec-03 Dec-04 Dec-05Bangladesh 7,500 <0.2 <1000 5Bhutan <100 <0.1 5 6India 5,200,000 0.9 770,000 14,000 28,000 55,000Indonesia 110,000 0.1 11,500 1,350 2,500 3,300Maldives <100 <0.1 0Myanmar 330,000 1.2 46,500 1,200 1,500 3,700Nepal 61,000 0.5 7,800 75 75 210Sri Lanka 3,500 0.1 <500 25 25 44Thailand 570,000 1.4 114,000 20,667 50,752 100,000Timor Leste n/a <0.1Total (Rounded) 6.3 million 951,300 37,317 82,862 162,260Source: WHO, SERO, HIV/AIDS Report, 2006