EVIDENCE-BASED PSYCHIATRIC NURSING PRACTICE, Components of EPBBASES FOR NURSING PRACTICE, DEVELOPING EVIDENCE-BASED CARE, HIERARCHY OF RESEARCH EVIDENCE, TAXONOMY FOR INFORMED DECISION-MAKING, CHARACTERISTICS OF GOOD BEHAVIORAL HEALTH PRACTICE GUIDELINES, CLINICAL ALGORITHMS
Patients' satisfaction towards doctors treatmentmustafa farooqi
The mood of the care recipient to see if the impression (expectations) of service are met by the patient may be defined as patient satisfaction. The current perspective on service efficiency tends to be that patient treatment meets public standards and requirements in terms of interpersonal support as well as professional assistance. (Hardy et al. 1996).
For various reasons, customer satisfactions in the healthcare industry have been investigated. First it was important to decide on the extent and the degree to which patient care seekers, the meeting of drugs criteria and the continuous use of these services have effect, satisfaction as a quality of service metric, as well as allowing doctors and health services to better appreciate and use the input of the patient. (Ong et al. 2000).
Consumer satisfaction with healthcare services is a multi-panel term that refers to the core facets of treatment and suppliers, while PS medical services with the quality enhancement systems from the patient context, full control of quality and the intended outcomes of services are considered to be of primary importance (Janicijevic et al. 2013).
The Pakistani health system is being changed somewhat and there are wonderful scope for applying standard of services to health care. Patients in Pakistan now have access to increased quality health care. Obviously, the staff and staff are the most important winners of a successful health care environment of every community sector framework (Bakari et al. 2019).
The medical clinic of today's study is the product of a long and complicated war of civilization to quantify produce and study and to give thought to the thoughtful (Fullman et al. 2017).
A document prepared by Dr. Mustafa Salih, the former director of the Directorate General of Health Policy, planning and research at the Federal ministry of Health in Sudan.
Evidence for Public Health Decision MakingVineetha K
The presentation gives an overview of evidence based public health with emphasis on the seven steps of EBPH Framework. It also includes the data sources to search for evidence and relevant articles explaining the current trend in decision making. One of the sources of the presentation is from EBPH training series by Rocky Mountain foundation. The link is provided in the end slide. Do contact me if you need any help with the resources.
Perspectives on Transitional Care for Vulnerable Older Patients A Qualitative...Austin Publishing Group
Transitional care for vulnerable older patients is optimal if, on top of the organization of transitional care, these patients and their informal caregivers have trust in the professionals involved. Regarding the challenge of organizing increasingly complex transitional care for vulnerable older patients, the focus should shift towards optimizing trust.
EVIDENCE-BASED PSYCHIATRIC NURSING PRACTICE, Components of EPBBASES FOR NURSING PRACTICE, DEVELOPING EVIDENCE-BASED CARE, HIERARCHY OF RESEARCH EVIDENCE, TAXONOMY FOR INFORMED DECISION-MAKING, CHARACTERISTICS OF GOOD BEHAVIORAL HEALTH PRACTICE GUIDELINES, CLINICAL ALGORITHMS
Patients' satisfaction towards doctors treatmentmustafa farooqi
The mood of the care recipient to see if the impression (expectations) of service are met by the patient may be defined as patient satisfaction. The current perspective on service efficiency tends to be that patient treatment meets public standards and requirements in terms of interpersonal support as well as professional assistance. (Hardy et al. 1996).
For various reasons, customer satisfactions in the healthcare industry have been investigated. First it was important to decide on the extent and the degree to which patient care seekers, the meeting of drugs criteria and the continuous use of these services have effect, satisfaction as a quality of service metric, as well as allowing doctors and health services to better appreciate and use the input of the patient. (Ong et al. 2000).
Consumer satisfaction with healthcare services is a multi-panel term that refers to the core facets of treatment and suppliers, while PS medical services with the quality enhancement systems from the patient context, full control of quality and the intended outcomes of services are considered to be of primary importance (Janicijevic et al. 2013).
The Pakistani health system is being changed somewhat and there are wonderful scope for applying standard of services to health care. Patients in Pakistan now have access to increased quality health care. Obviously, the staff and staff are the most important winners of a successful health care environment of every community sector framework (Bakari et al. 2019).
The medical clinic of today's study is the product of a long and complicated war of civilization to quantify produce and study and to give thought to the thoughtful (Fullman et al. 2017).
A document prepared by Dr. Mustafa Salih, the former director of the Directorate General of Health Policy, planning and research at the Federal ministry of Health in Sudan.
Evidence for Public Health Decision MakingVineetha K
The presentation gives an overview of evidence based public health with emphasis on the seven steps of EBPH Framework. It also includes the data sources to search for evidence and relevant articles explaining the current trend in decision making. One of the sources of the presentation is from EBPH training series by Rocky Mountain foundation. The link is provided in the end slide. Do contact me if you need any help with the resources.
Perspectives on Transitional Care for Vulnerable Older Patients A Qualitative...Austin Publishing Group
Transitional care for vulnerable older patients is optimal if, on top of the organization of transitional care, these patients and their informal caregivers have trust in the professionals involved. Regarding the challenge of organizing increasingly complex transitional care for vulnerable older patients, the focus should shift towards optimizing trust.
Enhancing the quality of life for palliative care cancer patients in Indonesi...UniversitasGadjahMada
Palliative care in Indonesia is problematic because of cultural and socio-economic factors. Family in Indonesia is an integral part of caregiving process in inpatient and outpatient settings. However, most families are not adequately prepared to deliver basic care for their sick family member. This research is a pilot project aiming to evaluate how basic skills training (BST) given to family caregivers could enhance the quality of life (QoL) of palliative care cancer patients in Indonesia. The study is a prospective quantitative with pre and post-test design. Thirty family caregivers of cancer patients were trained in basic skills including showering, washing hair, assisting for fecal and urinary elimination and oral care, as well as feeding at bedside. Patients’ QoL were measured at baseline and 4 weeks after training using EORTC QLQ C30. Hypothesis testing was done using related samples Wilcoxon Signed Rank. A paired t-test and one-way ANOVA were used to check in which subgroups was the intervention more significant. The intervention showed a significant change in patients’ global health status/QoL, emotional and social functioning, pain, fatigue, dyspnea, insomnia, appetite loss, constipation and financial hardship of the patients. Male patient’s had a significant effect on global health status (qol) (p = 0.030); female patients had a significant effect on dyspnea (p = 0.050) and constipation (p = 0.038). Younger patients had a significant effect in global health status/ QoL (p = 0.002). Patients between 45 and 54 years old had significant effect on financial issue (p = 0.039). Caregivers between 45 and 54 years old had significant effect on patients’ dyspnea (p = 0.031). Thus, it is concluded that basic skills training for family caregivers provided some changes in some aspects of QoL of palliative cancer patients. The intervention showed promises in maintaining the QoL of cancer patients considering socioeconomic
and cultural challenges in the provision of palliative care in Indonesia.
Cihr guest presentation and webinar afternoon talk - january 2014Simon Denegri
Presentation on public involvement and engagement in health research: why, how and what next? Given to the staff of the Canadian Institutes for Health Research (CIHR), Ottawa, Canada, 2014
New York State Drug Court Program: The
participant will be able to: Demonstrate the efficacy of
patient navigation in order to improve maternal/child
health outcomes and parenting skills for the court
involved population.
Annals of behavioral medicine volume 49 issue 1 supplement april 2015Monique Tsang, BS, CNA
The current study investigated whether a single presentation on sleep hygiene could result in improvement in reported sleep quality and quantity for undergraduate students newly entering university.
Lack of a family medicine system in Kurdistan Region: Challenges and solutionsAI Publications
Background: Family medicine can play a significant role in monitoring, enhancing, and maintaining public health in the community. This field is still in its initial stage in the Kurdistan Region of Iraq; therefore, it is faced with several challenges. The present study was carried out in order to figure out the challenges and solutions to them in family medicine in Erbil, the Kurdistan Region of Iraq. Methods: The present descriptive qualitative study was carried out in Erbil from September to December 2019 on 16 individuals who worked in Kurdistan parliament, ministry of health, general directorate, health sector, and private and public hospitals. Semi-structured in-depth interviews were carried out in order to gather data on their lived experience. The collected data were analyzed through van Manen’s method, and relevant themes and subthemes were extracted. Results: Data analysis led to emergence of three main themes of “past status of family medicine”, “present status of family medicine”, and “future status of family medicine”. The first main theme had two subtheme, namely “lack of family medicine” and “primary health care centers”. The second main theme also had two subthemes, namely “the beginning stage” and “family medicine centers”. The third main theme also had two subthemes, namely “family medicine objectives” and “strategy planning measures”. Conclusion: Family medicine in the Kurdistan Region of Iraq is still in its early stage; therefore, there are several challenges and issues which can be resolved as a result of cooperation between the Ministry of Health, universities of medicine in the region, and the parliament of Kurdistan.
Enhancing the quality of life for palliative care cancer patients in Indonesi...UniversitasGadjahMada
Palliative care in Indonesia is problematic because of cultural and socio-economic factors. Family in Indonesia is an integral part of caregiving process in inpatient and outpatient settings. However, most families are not adequately prepared to deliver basic care for their sick family member. This research is a pilot project aiming to evaluate how basic skills training (BST) given to family caregivers could enhance the quality of life (QoL) of palliative care cancer patients in Indonesia. The study is a prospective quantitative with pre and post-test design. Thirty family caregivers of cancer patients were trained in basic skills including showering, washing hair, assisting for fecal and urinary elimination and oral care, as well as feeding at bedside. Patients’ QoL were measured at baseline and 4 weeks after training using EORTC QLQ C30. Hypothesis testing was done using related samples Wilcoxon Signed Rank. A paired t-test and one-way ANOVA were used to check in which subgroups was the intervention more significant. The intervention showed a significant change in patients’ global health status/QoL, emotional and social functioning, pain, fatigue, dyspnea, insomnia, appetite loss, constipation and financial hardship of the patients. Male patient’s had a significant effect on global health status (qol) (p = 0.030); female patients had a significant effect on dyspnea (p = 0.050) and constipation (p = 0.038). Younger patients had a significant effect in global health status/ QoL (p = 0.002). Patients between 45 and 54 years old had significant effect on financial issue (p = 0.039). Caregivers between 45 and 54 years old had significant effect on patients’ dyspnea (p = 0.031). Thus, it is concluded that basic skills training for family caregivers provided some changes in some aspects of QoL of palliative cancer patients. The intervention showed promises in maintaining the QoL of cancer patients considering socioeconomic
and cultural challenges in the provision of palliative care in Indonesia.
Cihr guest presentation and webinar afternoon talk - january 2014Simon Denegri
Presentation on public involvement and engagement in health research: why, how and what next? Given to the staff of the Canadian Institutes for Health Research (CIHR), Ottawa, Canada, 2014
New York State Drug Court Program: The
participant will be able to: Demonstrate the efficacy of
patient navigation in order to improve maternal/child
health outcomes and parenting skills for the court
involved population.
Annals of behavioral medicine volume 49 issue 1 supplement april 2015Monique Tsang, BS, CNA
The current study investigated whether a single presentation on sleep hygiene could result in improvement in reported sleep quality and quantity for undergraduate students newly entering university.
Lack of a family medicine system in Kurdistan Region: Challenges and solutionsAI Publications
Background: Family medicine can play a significant role in monitoring, enhancing, and maintaining public health in the community. This field is still in its initial stage in the Kurdistan Region of Iraq; therefore, it is faced with several challenges. The present study was carried out in order to figure out the challenges and solutions to them in family medicine in Erbil, the Kurdistan Region of Iraq. Methods: The present descriptive qualitative study was carried out in Erbil from September to December 2019 on 16 individuals who worked in Kurdistan parliament, ministry of health, general directorate, health sector, and private and public hospitals. Semi-structured in-depth interviews were carried out in order to gather data on their lived experience. The collected data were analyzed through van Manen’s method, and relevant themes and subthemes were extracted. Results: Data analysis led to emergence of three main themes of “past status of family medicine”, “present status of family medicine”, and “future status of family medicine”. The first main theme had two subtheme, namely “lack of family medicine” and “primary health care centers”. The second main theme also had two subthemes, namely “the beginning stage” and “family medicine centers”. The third main theme also had two subthemes, namely “family medicine objectives” and “strategy planning measures”. Conclusion: Family medicine in the Kurdistan Region of Iraq is still in its early stage; therefore, there are several challenges and issues which can be resolved as a result of cooperation between the Ministry of Health, universities of medicine in the region, and the parliament of Kurdistan.
Austin Journal of Nursing & Health Care is a peer-reviewed, open access journal published by Austin Publishers. It provides easy access to high quality Manuscripts to practicing nurses, nurses in leadership roles, and other health care professionals with in the branch of health care sector focused on the care of individuals, families, and communities in order to attain, maintain, or recover optimal health and quality of life. This journal focus to work collaboratively with physicians, therapists, the patient, the patient's family and other related team members, on treating illness to improve quality of life.
Austin Publishing Group is a successful host of more than hundred peer reviewed, open access journals in various fields of science and technology with intent to bridge the gap between academia and research access.
Austin Journal of Nursing & Health Care accepts original research articles, review articles, case reports, mini reviews, rapid communication, opinions and editorials on all related aspects of nursing and care.
Impact of Intervention Program on Quality of End of Life Care Provided by Ped...iosrjce
IOSR Journal of Nursing and health Science is ambitious to disseminate information and experience in education, practice and investigation between medicine, nursing and all the sciences involved in health care. Nursing & Health Sciences focuses on the international exchange of knowledge in nursing and health sciences. The journal publishes peer-reviewed papers on original research, education and clinical practice.
By encouraging scholars from around the world to share their knowledge and expertise, the journal aims to provide the reader with a deeper understanding of the lived experience of nursing and health sciences and the opportunity to enrich their own area of practice. The journal publishes original papers, reviews, special and general articles, case management etc.
The purpose of this Health Policy Study is to better understand adolescents’ views on what are considered core components of the medical home and identify barriers to promoting adolescent health in relation to the medical home.
In addition, this study sought to better understand the needs and challenges in providing adolescents with access to medical homes—from the perspective of both adolescents and experts in adolescent health and medical home policy. To accomplish these goals, researchers conducted focus groups with adolescents, presented these findings to experts, and gathered experts’ reactions to the adolescents’ perspectives. This report includes a detailed description of the methods used for this study, followed by a summary of key focus group findings and the expert reactions to these findings.
The lived experiences of pantawid pamilya beneficiaries pptAlma Sy-Patron
This study examined the lived experiences of Pantawid Pamilya beneficiaries in availing PhilHealth Indigent Program (PIP) with the intent of improving its implementation. Descriptive qualitative method using phenomenology is employed in this study with 33 program members as participants.
Academic literature review of the best and promising models of integrated primary care and mental health and substance use community care across the lifespan.
NTTAP Webinar Series - June 7, 2023: Integrating HIV Care into Training and E...CHC Connecticut
In order for health centers to provide compassionate and respectful HIV prevention, care, and treatment in comprehensive primary care settings, the clinical workforce must be knowledgeable, confident, and competent in their ability to do so.
We’ll explore the need to integrate HIV care into training and education for the clinical care team, as well as educational models to train the next generation. Using Community Health Center Inc.’s Center for Key Populations Fellowship for Nurse Practitioners (NPs) as a framework for best practices, experts will discuss how to implement specialty care for key populations in your training programs. Additionally, participants will gain awareness of the importance of training the clinical workforce on key population competencies in HIV programs (e.g. HCV, MOUD, LGBTQI+ health, homelessness, and harm reduction).
Running head CULTURAL COMPETENCY AND TREATMENT .docxtodd271
Running head: CULTURAL COMPETENCY AND TREATMENT
CULTURAL COMPETENCY AND TREATMENT
Cultural Competency and Treatment of persons with mental illness
Alexis Lowe
Professor Patricia Coccoma
HUMN 6511- Treatment of Forensic Populations
June 16, 2019
Cultural Competency and Treatment of persons with mental illness
The culturally diverse forensic population that I chose to research is those who are mentally ill. This population is of particular interest to me because I have always wanted to work in agencies that do an intervention for members of this population and I have always felt that something should be done when I find helpless people on the streets who are mentally ill. Mentally ill persons can be described using characteristics which cut across the population but lean mostly to the side of those who have an extreme mental illness. Most of them experience financial distress, homelessness, lack of money to rent houses and dependence of social programs like social security. Others have violent behavior and remain dependent on mental services for a long time (Naylor et al., 2016). The mentally ill often commit small crimes and because of their health situation, they find themselves in difficult situations. According to Rickwood, 2006, mentally ill persons going through corrections procedures often suffer more psychological problems and this limits their chances of recovery.
The Unique Characteristics of Mentally Ill Patients
Rickwood explores the representation of the mentally ill in the criminal justice system. According to Rickwood, the mentally ill are over three times more represented in the criminal justice compared to the ordinary community and this is something of concern. In certain cultures, more persons who have a mental illness live in correction facilities compared to others. However, incarceration is seen to be a major cause of mental health problems due to some of the corrective measures that are employed. Depression among Hispanics is noted to be highest at slightly over 10%, followed by African Americans than Whites (Corin, 2017) Depression cuts across all age groups and genders in the recent past. According to Rickwood there is need to ensure that specialized and professional mental health services are provided in correctional facilities to ensure that the correction process does not negatively impact the victims. pre-release preparation and post-release follow-up are key areas that need a proper overhaul to ensure that the number of cases of relapse is reduced accordingly. Proper understanding of the cultural background of a patient is a major consideration in choosing treatment procedures and it ensures that the health service provider is cult rally aware of the implications of certain choices on certain groups of people. Cultural considerations affect beliefs about sickness, pain and where.
ICH Guidelines for Pharmacovigilance.pdfNEHA GUPTA
The "ICH Guidelines for Pharmacovigilance" PDF provides a comprehensive overview of the International Council for Harmonisation of Technical Requirements for Pharmaceuticals for Human Use (ICH) guidelines related to pharmacovigilance. These guidelines aim to ensure that drugs are safe and effective for patients by monitoring and assessing adverse effects, ensuring proper reporting systems, and improving risk management practices. The document is essential for professionals in the pharmaceutical industry, regulatory authorities, and healthcare providers, offering detailed procedures and standards for pharmacovigilance activities to enhance drug safety and protect public health.
R3 Stem Cells and Kidney Repair A New Horizon in Nephrology.pptxR3 Stem Cell
R3 Stem Cells and Kidney Repair: A New Horizon in Nephrology" explores groundbreaking advancements in the use of R3 stem cells for kidney disease treatment. This insightful piece delves into the potential of these cells to regenerate damaged kidney tissue, offering new hope for patients and reshaping the future of nephrology.
Defecation
Normal defecation begins with movement in the left colon, moving stool toward the anus. When stool reaches the rectum, the distention causes relaxation of the internal sphincter and an awareness of the need to defecate. At the time of defecation, the external sphincter relaxes, and abdominal muscles contract, increasing intrarectal pressure and forcing the stool out
The Valsalva maneuver exerts pressure to expel faeces through a voluntary contraction of the abdominal muscles while maintaining forced expiration against a closed airway. Patients with cardiovascular disease, glaucoma, increased intracranial pressure, or a new surgical wound are at greater risk for cardiac dysrhythmias and elevated blood pressure with the Valsalva maneuver and need to avoid straining to pass the stool.
Normal defecation is painless, resulting in passage of soft, formed stool
CONSTIPATION
Constipation is a symptom, not a disease. Improper diet, reduced fluid intake, lack of exercise, and certain medications can cause constipation. For example, patients receiving opiates for pain after surgery often require a stool softener or laxative to prevent constipation. The signs of constipation include infrequent bowel movements (less than every 3 days), difficulty passing stools, excessive straining, inability to defecate at will, and hard feaces
IMPACTION
Fecal impaction results from unrelieved constipation. It is a collection of hardened feces wedged in the rectum that a person cannot expel. In cases of severe impaction the mass extends up into the sigmoid colon.
DIARRHEA
Diarrhea is an increase in the number of stools and the passage of liquid, unformed feces. It is associated with disorders affecting digestion, absorption, and secretion in the GI tract. Intestinal contents pass through the small and large intestine too quickly to allow for the usual absorption of fluid and nutrients. Irritation within the colon results in increased mucus secretion. As a result, feces become watery, and the patient is unable to control the urge to defecate. Normally an anal bag is safe and effective in long-term treatment of patients with fecal incontinence at home, in hospice, or in the hospital. Fecal incontinence is expensive and a potentially dangerous condition in terms of contamination and risk of skin ulceration
HEMORRHOIDS
Hemorrhoids are dilated, engorged veins in the lining of the rectum. They are either external or internal.
FLATULENCE
As gas accumulates in the lumen of the intestines, the bowel wall stretches and distends (flatulence). It is a common cause of abdominal fullness, pain, and cramping. Normally intestinal gas escapes through the mouth (belching) or the anus (passing of flatus)
FECAL INCONTINENCE
Fecal incontinence is the inability to control passage of feces and gas from the anus. Incontinence harms a patient’s body image
PREPARATION AND GIVING OF LAXATIVESACCORDING TO POTTER AND PERRY,
An enema is the instillation of a solution into the rectum and sig
Health Education on prevention of hypertensionRadhika kulvi
Hypertension is a chronic condition of concern due to its role in the causation of coronary heart diseases. Hypertension is a worldwide epidemic and important risk factor for coronary artery disease, stroke and renal diseases. Blood pressure is the force exerted by the blood against the walls of the blood vessels and is sufficient to maintain tissue perfusion during activity and rest. Hypertension is sustained elevation of BP. In adults, HTN exists when systolic blood pressure is equal to or greater than 140mmHg or diastolic BP is equal to or greater than 90mmHg. The
CRISPR-Cas9, a revolutionary gene-editing tool, holds immense potential to reshape medicine, agriculture, and our understanding of life. But like any powerful tool, it comes with ethical considerations.
Unveiling CRISPR: This naturally occurring bacterial defense system (crRNA & Cas9 protein) fights viruses. Scientists repurposed it for precise gene editing (correction, deletion, insertion) by targeting specific DNA sequences.
The Promise: CRISPR offers exciting possibilities:
Gene Therapy: Correcting genetic diseases like cystic fibrosis.
Agriculture: Engineering crops resistant to pests and harsh environments.
Research: Studying gene function to unlock new knowledge.
The Peril: Ethical concerns demand attention:
Off-target Effects: Unintended DNA edits can have unforeseen consequences.
Eugenics: Misusing CRISPR for designer babies raises social and ethical questions.
Equity: High costs could limit access to this potentially life-saving technology.
The Path Forward: Responsible development is crucial:
International Collaboration: Clear guidelines are needed for research and human trials.
Public Education: Open discussions ensure informed decisions about CRISPR.
Prioritize Safety and Ethics: Safety and ethical principles must be paramount.
CRISPR offers a powerful tool for a better future, but responsible development and addressing ethical concerns are essential. By prioritizing safety, fostering open dialogue, and ensuring equitable access, we can harness CRISPR's power for the benefit of all. (2998 characters)
Navigating Challenges: Mental Health, Legislation, and the Prison System in B...Guillermo Rivera
This conference will delve into the intricate intersections between mental health, legal frameworks, and the prison system in Bolivia. It aims to provide a comprehensive overview of the current challenges faced by mental health professionals working within the legislative and correctional landscapes. Topics of discussion will include the prevalence and impact of mental health issues among the incarcerated population, the effectiveness of existing mental health policies and legislation, and potential reforms to enhance the mental health support system within prisons.
CHAPTER 1 SEMESTER V PREVENTIVE-PEDIATRICS.pdfSachin Sharma
This content provides an overview of preventive pediatrics. It defines preventive pediatrics as preventing disease and promoting children's physical, mental, and social well-being to achieve positive health. It discusses antenatal, postnatal, and social preventive pediatrics. It also covers various child health programs like immunization, breastfeeding, ICDS, and the roles of organizations like WHO, UNICEF, and nurses in preventive pediatrics.
Telehealth Psychology Building Trust with Clients.pptxThe Harvest Clinic
Telehealth psychology is a digital approach that offers psychological services and mental health care to clients remotely, using technologies like video conferencing, phone calls, text messaging, and mobile apps for communication.
Telehealth Psychology Building Trust with Clients.pptx
Ijsrp p12140
1. International Journal of Scientific and Research Publications, Volume 12, Issue 1, January 2022 306
ISSN 2250-3153
This publication is licensed under Creative Commons Attribution CC BY.
http://dx.doi.org/10.29322/IJSRP.12.01.2022.p12140 www.ijsrp.org
Psychosocial needs of childhood cancer caregivers
attending the main cancer treatment center in Sri Lanka:
A qualitative assessment
Sachintha Dilhani W.N.*
, Sivayogan S.**
, Jayamal De Silva**
, Suraj Perera**
*
National Cancer Control Program, Ministry of Health, Sri Lanka
**
Emeritus Professor, Department of Community Medicine, Faculty of Medical Sciences, University of Sri Jayawardenapura
**
Department of Psychiatry, Faculty of Medical Sciences, University of Sri Jayawardenapura
**
National Cancer Control Program, Ministry of Health,Sri Lanka
DOI: 10.29322/IJSRP.12.01.2022.p12140
http://dx.doi.org/10.29322/IJSRP.12.01.2022.p12140
Abstract- Diagnosis of childhood cancer significantly changes the
lives of those children and their family members. A family
caregiver plays a significant role in providing most of the care to
their ill patient, in addition to the care provided by the health staff.
Identifying and addressing these psychosocial needs of primary
caregivers (PCG) of children and adolescents with cancers
(CAAWC) is emerging globally as a component that should be
incorporated into quality cancer care.
This study aimed to describe the psychosocial needs of primary
caregivers of childhood cancer patients at the National Cancer
Institute, Maharagama (Apeksha Hospital at present), in Sri
Lanka.
Method- A qualitative study through Focus Group Discussions
(FGD) was conducted among primary caregivers of children and
adolescents with cancer at the main Cancer treatment center in Sri
Lanka. Data were transcribed verbatim, translated to English, and
analyzed using thematic analysis.
Results -Twenty-two PCGs participated for FGDs, and saturation
point was reached by the fourth discussion. PCGs of CAAWC
described their psychosocial needs at the time of the discussion
and the emerged themes which could be identified during the
analysis echoed the psychosocial needs already known in the
literature as follows; Financial needs, Emotional needs,
Informational needs, Social needs, and Practical needs. In
addition, caring for the siblings emerged as a new category which
is usually grouped under practical needs.
Conclusion - Almost all PCGs of CAAWC in Sri Lanka, who
were at the early stages of diagnosis had multiple unmet
psychosocial needs, which required the early attention of health
care professionals.
Index Terms- Childhood cancer, caregivers, psychosocial needs,
Sri Lanka
I. INTRODUCTION
The incidence of childhood cancer is showing an increasing trend
globally and locally. Diagnosis of cancer in early life affects the
patient and the whole family in an undesirable way (1).
Every childhood cancer patient requires at least some care from an
informal caregiver.
The Informal caregiver is defined as a family member or friend
who is not paid and provides physical, emotional, financial, or
other support to the care recipient. Among those caregivers, the
most responsible for the patient's day-to-day care and decision-
making is known as the primary caregiver (2).
In addition to the care provided by the health staff, a family
caregiver, mostly a parent or a relative, plays a significant role in
providing most of the care to their ill patient (70% -80%) (3).
They involve themselves in many facets of patient care, from
cancer diagnosis throughout the active treatment period to follow-
up. These caregiving activities include but are not limited to
mobility, organization of appointments, medication acquisition
and dispensing, symptom management, meals and nutritional
assistance, assisting with personal care, managing finances,
supervision of treatments, transportation, emotional support,
coordinating care, and communication with providers (4)(5)(6).
Though the "psychosocial needs" term literally could be
interpreted as referring to all psychological (mental health,
emotional issues) needs, as well as all social needs (Financial
needs, family/ social relationship, etc.), the psychosocial needs of
a cancer caregiver could be categorized in several ways. The needs
have several dimensions which include informational needs,
financial needs, emotional needs, personal needs, spiritual needs,
social needs, practical needs, child care needs, and health
professional needs (7) (8).
These psychosocial needs of caregivers have been identified as
highly correlating with the outcome of caregiving for the caregiver
and care recipient (9) (10).
Therefore, there is a need to identify the psychosocial needs of
family caregivers, which should be addressed to improve their
health and provide the best possible care for the care recipient,
leading to patient and caregiver satisfaction (11).
2. International Journal of Scientific and Research Publications, Volume 12, Issue 1, January 2022 307
ISSN 2250-3153
This publication is licensed under Creative Commons Attribution CC BY.
http://dx.doi.org/10.29322/IJSRP.12.01.2022.p12140 www.ijsrp.org
Although many studies on caregivers are available worldwide,
research on caregivers is limited in the Sri Lankan setting, and
there is a dearth of information highlighting the caregivers' burden
of caregiving to childhood cancer patients in Sri Lanka.
Therefore, this study aimed to explore the psychosocial needs of
primary caregivers of children and adolescents with cancers in Sri
Lanka.
This study was the first component of a two-phase research
project, which was followed by a cross-sectional study in phase
one and an interventional study in phase two, and carried out from
year 2017 to 2018.
II. METHODS
A qualitative descriptive design was used to explore the
psychosocial needs of PCGs of CAAWC. Data were collected
through FGDs.
The National Cancer Institute (NCI) Maharagama, was selected as
the best setting to conduct this study. NCI is located about 16 km
away from Colombo, the commercial capital of Sri Lanka, and it
is the largest cancer hospital in the country at present, with
specialized treatment modalities for any type of cancer. Further,
the NCI Maharagama is the main center with specialized pediatric
oncology treatment facilities in Sri Lanka. The pediatric unit of
this hospital consists of four major units (wards).
Purposive sampling was carried out and PCGs from all four
pediatric units’ inward patients who were eligible and willing to
participate were recruited. PCGs of CAAWC who had a
confirmed diagnosis of cancer at least one-month post-diagnosis
up to four-months of diagnosis and under active treatment were
invited for the discussions.
A focus group guide including semi-structured questions, was
developed based on the literature and used to explore the
psychosocial needs of PCGs during the discussions.
A quiet and comfortable place in a corner of each pediatric ward
was selected for conducting FGDs. Each interview took about 1 to
1 ½ hour.
At first, the moderator (the Principal Investigator of this study)
welcomed all the participants and, following a brief introduction
of the study, explained the ground rules of the discussions,
creating a permissive and open environment to express the
participant's views.
The session began with the opening question of the topic guide,
which was a broader and easy question; "What are the
psychosocial needs you have/had as a primary caregiver of a child/
adolescent with cancer after diagnosing cancer in your child?"
All the participants were encouraged to talk, but the discussion
focused on the key issues.
The rest of the questions were designed to probe and explore the
needs identified as psychosocial needs of cancer caregivers in the
literature. In addition, a few questions were included to clarify the
types of information and support they need to face this situation
better.
Interviews were audio-recorded, and notes were taken during the
interviews. The key points identified during the session were
summarized and presented to the participants for further
clarifications at the end of the session.
No incentive or compensation, financial or otherwise was offered.
PCGs who were highly depressed were referred to the consultant
psychiatrist with their consent for further assessment and
management of the condition.
All FGDs were conducted during the evenings to ensure that the
unit work and the child's routine care were not disturbed.
Data analysis
All audio recorded data was transcribed verbatim at the end of
each interview by the principal investigator (PI), and thematic
analysis was carried out. The transcribed data was read
thoroughly, and areas with meaning were marked, and these areas
were condensed into meaning units, and codes were assigned.
Data were coded by PI, and those codes were combined into
categories. Finally, these categories were grouped under themes.
Data analysis was carried out manually without using any analysis
software programs.
Research Ethics:
Ethical clearance was obtained from the Ethics Review Committee
of Post Graduate Institute of Medicine Colombo, and
administrative clearance was obtained from the head of the
institution of NCI. In addition, informed written consents were
taken from all the study participants, and confidentiality of the
data was maintained throughout the process.
III. RESULTS
An average of five to eight participants participated in each
discussion. The saturation point was reached by the fourth FGD,
which was conducted covering all four pediatric oncology units.
Characteristics of FGD participants
Twenty-two PCGs participated in the FGDs, representing eight
out of nine provinces in the country and among them, 14 were
mothers of sick children while others were four fathers and four
grandmothers. Almost all mothers and grandmothers were
housewives. The majority of the children had Leukemia and were
below the age of 10 years.
Socio-demographic characteristics of the PCGs are given in Table
1.
Table 1 : Basic Characteristics of FGD Participants
Participant characteristics (n= 22)
Age range : 26 to 61 years
sex 18 – females, 04 –males
Relationship to the child with
cancer
Mother N= 14
Father N=4
Grandmother N=4
Occupation of the PCG
Housewives N=18
Drivers N=2
Farmer N=1
Retired Army officer N=1
Child’s characteristics
Age of the child
0-5 years N= 5
06-10 years N= 8
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11-15years N=4
16-19 years N=4
Type of cancer
Cancer type
Leukemia N=15
Lymphoma N= 2
Solid tumors N=5
Province
North Western N=4(Wennappuwa, Chillaw,
Kurunegala, Alawwa)
Central N=3 (Kothmale, Gampola,
Dambulla)
Southern N=6 (Mathara,
Weeraketiya,Galle,
Hambanthota)
Uva N=3(Badulla,
Sevanagala,Mahiyanganaya)
North Central N=2 (Wilpaththu,
Polonnaruwa)
Western N=1 (Colombo)
Sabaragamuwa N=2 (Kegalle, Godakawela)
Eastern N=1 (Akkareipaththuwa)
Psychosocial needs of PCGs of CAAWC as identified through the
qualitative assessment
PCGs of CAAWC described their burning psychosocial needs at
the time of the discussion and themes which could be identified
during the analysis, echoed the psychosocial needs already known
in the literature as following; Financial needs, Emotional needs,
Informational needs, Social needs, and Practical needs. In
addition, caring for the siblings emerged as a new category
grouped under practical needs.
Those identified themes, categories, and subcategories are
displayed in Table 2
Table 2: The List of Themes, Major Categories, and Sub
Categories, Emerged Through FGDs with PCGs of CAAWC
Theme Major
categories
Subcategories
Financial Income
Expenses
Difficulties to attend to
work / No income
Limitless leaves
Problems with retaining the
job
Expenses for treatments
- Drugs
- Investigations
- Surgeries
Expenses for treatment-
related other things
- Transportation
- Accommodation
- Meals
Household expenses
Practical
needs
Child caring
Caring for
siblings
Self-care
Handling Child’s stress
Communicating with child
Support in child caring
Continuing child’s
education
Providing child’s meals as
he/she preferred
Need of hot water for
cleaning little ones
Looking after other children
at home
Lack of time to spend with
them
Poor sleep/rest/continue
treatment for their
illnesses.
Emotional
needs
Self
Family
members
Fear
Sadness
Anxiety
Distress among spouse and
siblings
Family &
social support
Spouse
Family&
relatives
Understanding the situation
Dedication to care/
relationship
Support in facing the
situation
Informational Disease-
related
Available
resources/
supportive care
Cause for the cancer
Prognosis
Treatment plan
Financial
Counseling
Other supportive care
Facilities available at the
hospital
Spiritual Religion-
related
Advice of religious leaders
Prayers
“Bodhi pooja”
Local rituals
Belief
Healthcare
needs
Staff
Infrastructure
Listening
Kind
Loving & caring
Providing needy
information
More free accommodation
facilities
More spacious wards
Elevator facility for upstairs
ward
Child cancer treatment
centers for far away
provinces
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Financial Needs
Most of the caregivers defined their financial status as "poor," and
the majority of PCGs described financial needs as the top-ranking
need among them.
They mentioned that their financial status is worsening after the
diagnosis of the child's cancer due to the following reasons:
1. Income
In some instances, the father, the family’s sole breadwinner, had
to become the PCG of their sick child. It is primarily due to the
inability of the mother to be with the sick child as the mother had
to take care of younger siblings. This has led to a significant
financial crisis with no income. Similarly, although the mother
was staying with the child, the father could not still earn as usual
since the father had to do frequent hospital visits and take care of
the other children who were at home in the absence of the mother.
These tasks demanded time off from work.
Therefore, family income has been affected adversely in most of
these families. An excerpt from a discussion illustrates the point
clearly as depicted below.
"Now my major need is earning; I am a farmer, in addition to that,
I used to do some casual work for a living. Now I have to stay with
my child, the child's mother has to look after the younger one who
is too little to look after by somebody else. Therefore, currently,
we do not have any income, it is a huge problem, and my family is
facing a lot of financial issues."- A father.
2. Expenses
a. Expenses for treatments
On top of the deprived income, increased expenses following the
diagnosis had aggravated the financial needs of these families.
Though the health services are provided free of charge at the point
of delivery in Sri Lanka, many other expenses have led to this
financial crisis.
Most PCGs praised the free health system providing medicines,
investigations, and most facilities free of charge, while few PCGs
said they had to pay for specific investigations and medicines
available only in the private sector.
Since the facilities for several treatment modalities, such as
certain transplant surgeries, are unavailable in Sri Lanka, those
surgeries are planned to be performed in other countries. However,
the costs for these surgeries are unbearable for an average person,
and it was stressed by PCGs who were waiting for this kind of
surgery for their ill child. This adds to emotional distress; when a
treatment is available somewhere else in the world, but could not
be accessed.
“Planned to do a bone grafting for my daughter’s leg bone cancer
in India, we need 30 Lakhs for that. It is a large sum of money” –
A father.
Some of the care givers have received donations from the hospital
staff or other well-wishers during the hospital stay to fulfill their
requirements to some extent.
Their views on expenses for the child's treatment reflect the merit
of having a free health system in Sri Lanka.
b. Expenses for Treatment-related needs
Though the PCGs do not have to pay for the treatment, they face
financial problems when fulfilling the treatment-related other
needs. For example, most of the children had to stay in the hospital
for a long period of time or make frequent visits to the hospital.
For PCGs and children who live at a distant place from Colombo,
expenditure on travelling back and forth was a significant burden.
Most of them used the public transport system to travel to the
hospital though it is not comfortable to the ill child. They could
not think about other options such as hiring a vehicle because of
the unbearable costs. They had to tolerate all the difficulties their
child endured whilst using often overcrowded public transport just
to come to the hospital.
"It is so expensive to hire a vehicle from Alawwa (approximately
80km away from the hospital), if so we have to pay around Rs:
6000 for the taxi for the journey. Therefore, we used to travel by
train, and I used to hire a taxi only from the railway station to the
hospital”- A mother from a rural area of Kurunegala District
In some instances, though the child is discharged from the
hospital, he/ she should come to the hospital once in two days for
treatments. PCGs pointed out the need for accommodation for
those living far away from the hospital in this kind of situation.
They are provided with accommodation facilities free of charge
within the hospital premises through Courage, Compassion, and
Commitment (CCC) foundation, known as CCC house. However,
according to the PCG's views, they face a big problem when this
facility becomes full to the capacity. Then they have to find
another outside/ private, usually a paid place for accommodation,
sometimes for higher prices, or plan to go back home.
"Sometimes we do not get a room in CCC house also, for instance,
now yesterday also, the child next to mine who was from
Anuradhapura (approximately 210 km away from hospital) was
discharged, CCC house was houseful, and he could not get a room
there, so his mother decided to go home, she had to hire a vehicle
& it had cost around Rs:10,000” - A mother
Emotional needs
Fear, sadness, and uncertainty were the most frequently cited
emotions by PCGs during the initial post-diagnosis period. Some
PCGs had described it as a totally depressed period, while some
had mentioned it as the mental status of "zero" level.
Time had become the healer of their emotional conflict. Some
PCGs pointed out that fear or sorrow goes away with time by
seeing the child's clinical improvement. In addition, seeing other
children with the same condition during the hospital stay and
talking with their caregivers had contributed to easing and dealing
with their emotions.
Only one participant pointed out the relief she experienced with
the counseling, while others have failed or not received the chance
of getting the benefits of counseling sessions.
"Initially, they sent me to counseling unit for counseling, and
doctors there discussed my issues with me. But I could not attend
that on the next date given, because the child was on treatment,
with needles in the hands; the child had much body aches too so
that I could not attend those sessions after that” - A mother
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In addition to the PCGs' emotional status, the emotional needs of
ill children, spouses, and siblings were also highlighted in the
discussions.
Though only one of the parents is staying with the ill child, their
spouse also suffers emotionally from this unexpected diagnosis as
a result of overwhelming responsibilities which come over to their
shoulders. Sometimes worrying on the spouse's part has led to
emotional and physical deterioration of the health condition
necessitating even treatment.
The emotional well-being of the ill child is affected due to various
factors. Among those, interruption to their usual schooling and
other day-to-day routines were found to play a significant role.
Furthermore, mothers who participated in discussions revealed an
aspect that we never thought of or considered harmful to others in
any way: visiting a child during their hospital stay by their parents/
relatives frequently.
According to some PCGs, most of the children admitted to NCI
Maharagama reside far away. Hence, their family members are
unable to visit the child regularly due to distance factor and
financial barriers, and they usually visit once a week or more apart.
However, the families of children who live close by or financially
strong visit their children daily or even twice a day.
A child who is not getting this opportunity of seeing their families
frequently is prone to get depressed by seeing the other children
with that opportunity. As a mother described this situation :
"Close by people visits their children several times per day, but as
we are living far away, nobody can visit us daily. So, they come
only once or twice per week. So, when our children see the visitors
of other children, they feel sad and get depressed, what to do?"- A
mother.
Caregivers' views reflected their worries towards the suffering of
their healthy children at home due to the absence of the
mother/father for an extended period. This is described in detail
under the practical need category.
Informational need
These discussions revealed three main areas of information they
deemed important; Information on the disease, resources /
supportive care, and information on facilities available at the
hospital.
PCGs required information on the disease; they were keen on
knowing the cause of the child's cancer and also whether cancer
can be cured or not. Knowing about the curability and the disease
course has supported them to relieve their sadness, fear, and
overall distress.
While some PCGs are satisfied with their knowledge of the child's
disease, some said they are not adequately aware of the condition.
Medical officers and the nursing officers of the relevant ward were
their primary information providers on disease and treatments.
Few participants from the lower socio-economic background
believed that they were not educated enough to ask questions from
doctors regarding the child's illness. Therefore, they tend to
believe what doctors say, as the final verdict without further
questioning, though they had many questions in their minds.
"as I am not educated enough and not much knowledgeable to ask
questions, am not asking anything from the doctor, but when my
son comes, he asks, and usually we get the answers for those"- A
Grandmother.
Some PCGs have referred to books to get information on the
child's disease. However, almost all PCGs agreed that it would be
more helpful if a booklet was available for them to refer to
pediatric cancer caregiving.
Some PCGs stated that medical officers and nursing officers
provide necessary information adequately and accurately when
they ask for it.
Few participants emphasized the need to orient the hospital setting
for newly registered patients and their families to avoid searching
for particular places and services.
When we discussed the resources / supportive care available to
them, most were unaware of available financial and psychological
support services.
Although they felt the need for support, they were unaware of
places/ persons they should meet. Most cited the need for financial
and psychological support, but they have not heard of social
service officers helping to obtain donations and other financial
benefits they deserved. They have not heard of the Counseling unit
of the hospital or even the word counseling to reduce their
psychological suffering.
"We know nothing about available supportive care services for us,
and actually we do not know from where or whom to ask for those
information”- a mother
When we consider participants' views, provision of the above
information to the PCG's of CAAWC will be a key to reducing
their distress in many ways.
Practical needs
Needs related to the sick child caring, caring for other children,
and self-caring needs were categorized under this theme. In
addition, if somebody met difficulties in fulfilling a task and did
not belong to other major need categories, those needs were
categorized under this theme. Among these subcategories, most
PCGs' main concern was caring for the sick child's sibling. It has
become a significant issue among hospitalized parents.
The majority of PCGs spoke about not having a proper way of
caring for ill child’s siblings. Though few PCGs had extended
family support, few were not getting that opportunity. Few PCGs
were getting support from relatives, while in many cases, the
parent who was at home was the sole caretaker of other siblings,
overwhelming his / her responsibilities.
Most PCGs had two to four children, including the sick child.
Some did not have grandparents or relatives living nearby to spend
at least a little time with these siblings. When the families had very
young siblings, including newborns, it was challenging to replace
the mother's role with anyone else other than the mother; therefore,
in such families, most of the time, the father or grandmother stayed
with the sick child at the hospital as the PCG. Therefore, the
responsibility of the other siblings was not much of a problem only
in the group mentioned above.
In almost all the other cases mother was staying with the sick child,
and then the issue has arisen. If they had grandparents living with
them, the problem would have been almost resolved. However, in
the unavailability of such close relatives, the father had to look
after siblings while trying to continue his job and make the ill
child's hospital stay comfortable by visiting him as required. Some
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PCGs had received the support of close relatives, and siblings
were cared for by them, while some had no one to look after their
children at home.
“I have a 12 years old daughter and four-year-old son at home. I
managed to find a babysitter, an old lady to look after them and I
paid her. But recently, she also left. Now my children are with one
of my friends” (tearfulness) – A mother
The above facts showcase the need to make the general public
aware of supporting a family with a child with chronic ill health.
Most mothers were worried about the siblings' safety staying at
home without the mother's care. When reviewing the mother's
comments, it was clear that mothers have noted the changes in
psychological status among siblings, with the diagnosis of cancer
in their brother/ sister making the family apart. Lack of mother's
love and care had made some children's lives miserable.
The education of the sick child's siblings also had been affected
due to this situation. However, finding a solution to this problem
was somewhat tricky. Almost all the mothers with children other
than the sick child expressed their worries about those siblings'
safety, education, and psychological impact in detail.
"My other daughter lives with her aunt now. But she is not happy
with them. She lives there with some kind of fear in her mind. I
feel that she has got affected mentally. So, I am worried about
her emotional status rather than her studies"- A mother.
These issues had got worse when the sick child's sibling was an
adolescent girl. Two parents expressed their worries about keeping
a young girl reaching puberty at home alone, without her mother's
love, care, and protection since it is not acceptable according to
Sri Lankan culture and traditions. However, they had no options
to choose other than doing that.
When going through the PCG's views on sick child caring, few
needs could be identified repeatedly. For example, while some
PCGs worried about the sick child's education, other groups
worried about providing meals to the child, getting hot water to
clean them, etc.
They described the situations they need support to handle when
caring for a sick child. At first, mentioned the child's emotional
needs created with the sudden change in his /her life with the
diagnosis. According to them, some children were fed up with the
hospital stay, and they insisted on going home since they wanted
to go back to their everyday life, including schooling.
“My little one is fed up with this hospital stay now, and He cannot
understand his condition. He wants to go back to school. he is
eight years old now, Not attended to school for the last three
months”-A mother
Some of the PCGs spoke on the issue of providing meals to sick
children. Though meals are provided free of charge from the
hospital, children sometimes refuse to eat those, making the reason
tasteless. Then the parents are faced with the problem of providing
them with something palatable. According to the parents, doctors
have advised them not to give food brought from outside to sick
children except when it is homemade. However, families living
closer to the hospital bring meals to their children as required.
Then for the people who are living in distant areas, such as
Dambulla, Monaragala, Mannar are unable to do this, since it takes
at least 8 – 12 hrs to complete their journey from home to the
hospital using public transport; they cannot bring homemade food
to the child without it getting spoiled. Hence, though it is not
suitable for the child's health to fulfill their request, PCGs are
forced to buy something from eateries and pastry shops.
As a solution to this, hospital management has provided a place
for mothers who want to cook themselves for their little ones.
However, after getting the inputs of PCGs, it was clear that this
small kitchen was underutilized by PCGs for several reasons,
including unawareness about this facility.
Few PCGs described their need for the continuation of sick child's
education. Some children had been preparing for major
examinations such as the General Certificate of Education (GCE.)
Ordinary level (O/L) or GCE Advanced level (A/L) when they
were diagnosed, and though they missed the first attempt because
of the diagnosis, their parents wish them to prepare for the
following year's exam. Some of the parents were very optimistic,
and their plans on the child's education with the recovery were
well expressed during the discussion. Like all other parents, they
also were dreaming about their child's future.
PCGs self-care needs are identified among caregivers in the
literature; the participants of these discussions also described their
self-care issues such as lack of proper sleep, no time to rest, no
meals on time etc. However, these participants do not care much
about their own needs. Their only hope is the child's recovery,
irrespective of all the difficulties they are going through
“At the beginning, I was always crying, did not eat, did not even
comb my hair, now it is already one and half months I have been
in the hospital, during which period I could not get proper sleep
at all”- A mother
Spiritual needs
Local rituals play an important role in treating ill people in Sri
Lankan tradition. People engage in various activities depending on
their religion, wishing for a rapid recovery. This fact was
supported by the comments given by the PCGs of CAAWC.
Primary caregivers who were Buddhists mainly engaged in Bodhi
Pooja, which is a form of worship found in Buddhist culture in Sri
Lanka, wishing for the rapid recovery of the child. As the PCG
was at the hospital with the child, their family members, relatives,
and neighbors engaged in these activities. Catholic people and
Muslims also have engaged in wishing the best for the ill child
through prayers and other rituals.
All these groups believe that they are getting relief by engaging in
these rituals.
"We are conducting Bodhi Pooja, and these lead to a great relief
for us; by now, my family has conducted more than 10 Bodhi
Poojas. I believe that these will lead to my child's recovery."-a
mother
Need for family and social support
Primary caregivers of CAAWC described the support they are
getting from their spouse, other family members, relatives, and
neighbors. Except for a few mothers, other PCGs were satisfied
with the support they received from their spouses, and spouses
were extremely helpful and understanding. However, few mothers
described poor understanding and support from their spouse, and
among them, one mother expressed her views as follows;
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"Sometimes, he scolds me when I did not call him; we only know
what we are doing here. Sometimes, when some intravenous drugs
continue, I have to monitor the child continuously for 12 hours.
The husband does not know what is going on here, and he does
not even try to understand my situation here."
Though some people get good extended family support, some are
not getting that. In addition to that, some relatives and neighbors
of the affected families have also become so helpful, and they have
supported the PCGs by caring for the sick child's siblings,
engaging in rituals wishing rapid recovery to the sick child, and
supporting to be financially strong.
Following are the views of a mother related to support they are
getting from close ones;
"I am not doing a job, my husband was working in Italy, but he
came back because of the child's illness. All his relatives are in
Italy, and they are helping financially, so we are having relatively
fewer financial issues, and I am getting good support from my
relatives, what they want is to get the child cured somehow or
other."- A mother.
Health care needs
Things that people expect from a health care facility and health
professionals could be categorized under this theme.
From admission to the hospital, patients and caregivers become
members of the health care team. Attempted to identify their
health care needs as follows;
The majority of the PCGs were satisfied with the care provided
through the hospital, and they appreciated the health care services
provided to them, almost everything free of charge. According to
their views, all the staff, including consultants, other medical
officers, and nursing officers, are accommodating, kind, caring,
and understanding. It is as follows in their own words;
"Service should be appreciated."
"Do not know about the other wards; doctors and nurses all are
good in this ward."
IV. DISCUSSION
Psychosocial needs of cancer caregivers and the impact of unmet
needs have become a significant concern during the recent past,
mostly in developed countries; this is well supported with a
growing body of literature (12) (13) (8).
During this study, a qualitative assessment of psychosocial needs
through conducting of four FGDs was carried out.
We found few additional categories of needs in addition to the
ones found in literature. These needs comprised of financial,
practical (needs related to sick child caring, caring for siblings of
the sick child and self-care needs of PCG), emotional, family and
social support, informational, spiritual, and healthcare-related
needs, which were consistent with the evidence in the literature
(12) (14) (8).
Three subcategories were found related to emotional needs during
discussions of the present study; PCGs had felt a need for support
to deal with their own emotions, sick child's emotions, and the
emotions of family members.
PCGs have reported fear, sadness, and uncertainty as frequent
emotional needs to be dealt with this unexpected diagnosis. In
addition, conversations with them revealed their need to appear
strong in front of the child to minimize the child's suffering, even
though parents themselves wanted to grieve. Further, they
revealed the practical barriers in accessing available support such
as counseling during this period. At the same time, they claimed
that this severe distress goes away with time, which is a well-
accepted fact in the literature (15) (16) (17).
Similarly, they have reported seeing the other children with cancer
and sharing their difficulties with the other caregivers as modes of
relief of emotional distress. This sharing of ideas and support with
other caregivers is a common finding found in the literature (18),
and this is a form of peer support that will help cope with emotions
of distressed PCGs with a child's diagnosis and consequences (12).
Similarly, they have stated that "words of doctors" explaining the
child's condition to them, including the prognosis per se, is a
distress reliever. Again, this indicates the immense use of realistic
reassurance and a prognosis prediction with timing to the
emotionally overwhelmed PCGs.
A hidden cause for the emotional suffering of the sick child has
come up during the interviews; those children who were residing
far away from the hospital were not getting frequent visits from
their families due to distance and financial issues. When these
children see the other children who live close by, facilitating their
family members' frequent hospital visits with foods and toys, they
feel sad and involuntarily suffer. This is not a fact found in the
literature, and this might be a finding that is specific to this setting.
Unless the children were in separate rooms, this disparity would
be there. It is challenging to find a simple solution to this kind of
an issue. Nevertheless, the possibility of creating peer support
among the PCGs would help to mitigate the situation.
Siblings of the ill child are the third party who suffers emotionally
by deprivation of their chance to be with loved ones. Deprivation
of mothers' love and time to spend with their loving family may
lead to unhealthy emotional relationships among siblings of the ill
child, which will badly affect their future. This finding followed
similar studies (18).
In summary, witnessing the suffering of their beloved child,
knowing the life-threatening nature of the disease adding to other
family commitments such as caring for other children with the
additional financial burden altogether contribute to this substantial
emotional distress of the PCGs of CAAWC. Therefore, they need
support in coping with emotional needs through peer support
programs, counseling /psychotherapy at the individual or group
level, and, if indicated, pharmacological management (12).
When the financial needs are considered, lengthy treatments with
long hospitalization periods have created the issue of loss of
income/ earning among childhood cancer caregivers. This finding
is consistent with the findings form similar studies (18). However,
this issue is exaggerated when the PCG or spouse suffers a job loss
or does not work during treatment (12).
High costs for medical treatment and lack of / inadequate medical
insurance are the primary sources of economic/financial burden
among childhood cancer caregivers in most other countries (12).
However, this is not valid for a country like Sri Lanka, in which a
free health care system exists.
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Moreover, travel expenses have become a significant issue among
most study participants as they reside far away from the hospital.
This leads to a major expense to bring the child to the hospital; if
they hire a vehicle, the cost varies from thousand to ten thousand
Rupees depending on where they live. Therefore, they tend to use
crowded and congested public transport, ignoring the child's
discomfort when coming to the clinics. During the interviews,
some stated with a sigh, "If we had this type of hospital in our
district too….", though they knew that it would not come true in
the near future.
Provision of health care information to the patient, family
member, or caregiver is considered essential in cancer care. And
the informational needs of caregivers of pediatric cancer patients
have been categorized as information about the illness process,
prognosis, treatment plan, possible side effects of the treatments,
discharge planning, home care needs and on injections, nutrition,
and on many more aspects (19) (20). In parallel to the literature,
present study revealed three subcategories of information needs;
information on the disease itself, information on resources
/supportive care, and information on facilities available at the
hospital. PCGs expressed their views on disease-related
information, and basically, what they wanted to know was the
cause for developing cancer in their children and whether it can be
cured or not, and how long it will take.
Further, these discussions revealed the ignorance of PCGs on
available supportive care services.
A qualitative study has been conducted among parents of children
with cancer in Sweden to describe the parents' experiences of
information acquisition and use related to the child's diagnosis.
The researchers have highlighted the need for paying extra
attention to the parents' informational needs by clinicians. Equally,
they have emphasized the importance of the continuous provision
of information throughout the cancer journey, beyond the early
phase of the diagnosis, modifying the content and quantity of
information according to the need (21). Therefore, providing the
correct information to the caregivers at the right time is vital for
the patient and caregiver's betterment.
As revealed during the discussions, the low health literacy was
due to the unavailability of specific books and reading material on
childhood cancers at the ward setting or not knowing about a
specific book to read.
As they were hospitalized with the child, for a long term, they
were reading whatever was available at the wards for them to read,
and during the discussions, they specifically mentioned the
benefits of having some booklets written on childhood cancers so
everybody can read it and can pass it on to the next comer.
Showing the perceived power difference between the PCGs and
staff, few PCGs who participated in the discussions have revealed
that they are not asking questions from doctors about a child's
illness, as they feel that they are not educated enough to do so.
This communication gap still exists in the Sri Lankan community
that healthcare providers should address.
In this study, three categories of needs emerged during the
discussions under the Umbrella term of practical needs. They were
PCGs' self-caring needs, caring siblings of the sick child, and
needs that arose during sick child caring.
PCGs worried a lot about rest of their children at home with either
the other parent/grandparent or with some relative. Again, this was
an area where PCGs talked in-depth, similar to financial issues
during the interviews.
If the other sibling was a newborn, requiring breastfeeding, or if
that one was a girl at the age of puberty, fathers/grandparent was
staying with the sick child allowing the mother to stay with the
sibling. Their views display the Sri Lankan cultural beliefs
regarding a girl's attainment of puberty.
In addition to this, views of the PCGs revealed that their worries
about siblings' deteriorating mental status, educational status, and
safety, with this unexpected event, occurred in their families,
making them apart. These findings related to siblings of the sick
child were similar to the findings within the literature (18).
Under the practical needs, PCGs faced specific needs related to
caring for a sick child. Among those concerns, needs related to
meals was mainly specific to the study setting. Creating peer
support groups would help mitigate this kind of issues. This form
of support likely takes place informally as most parents will bring
some food that could be shared among other children as well.
Among the practical needs, we found that, the self-caring need was
the least discussed area compared to other practical needs which
are not directly related to the caregiver. PCGs clearly stated that
they do not want any facility for them, and what they only want is
the child's cure. As per the literature, usually, caregivers tend to
put the needs and interests of the patient above their own (13). The
findings of this study repeatedly proved that fact.
When considering their views on self-care, it seems that "time out"
or a break for PCG is severely lacking in our setup.
Spiritual needs have been defined in the literature as needs related
to the "meaning that life holds a sense of purpose, a relationship
with a Higher Being" (14).
Based on the Sri Lankan cultural background, people tend to
believe an unseen power of religion bound local rituals in curing a
sick person. This fact was supported by the findings of this study,
in which they have described their ways of connecting to the
religion in wishing a speedy recovery. Bodhi pooja and prayers
were the commonly mentioned activities, which were carried out
to fulfill the spiritual needs of PCGs and the whole family.
This was elaborated during the discussions, explaining that
conduction of these things is voluntarily carried out by family
members, relatives, neighbors, or friends.
In a disease like cancer, patients and caregivers need immense
family and social support to cope with the situation.
Most PCGs mentioned the poor support they were getting even
from their close relatives during that period. In some cases, it was
clear that the understanding of the situation by the partner was not
satisfactory. Unfortunately, few mothers expressed their views on
this aspect during the discussions, and according to them, lack of
overall understanding of the circumstances related to the child's
condition among the couple sometimes has led to the family
dispute, despite the child's condition. On the other hand, most of
the PCG's appreciated the support extended by their partners. In
addition to this, the support provided by health professionals was
very much appreciated. Consistent with this, mothers of children
diagnosed with cancer in Turkey have reported the immense
support they received from their spouses and the support extended
from health care professionals and other family members (18).
Furthermore, needs related to health care provision play a vital
role in cancer caregiving.
Things that people expect from the health care facility and the staff
were assessed during the FGDs, and fortunately, most of the
9. International Journal of Scientific and Research Publications, Volume 12, Issue 1, January 2022 314
ISSN 2250-3153
This publication is licensed under Creative Commons Attribution CC BY.
http://dx.doi.org/10.29322/IJSRP.12.01.2022.p12140 www.ijsrp.org
participants appreciated the health care staff and seemed satisfied
with what they were getting. However, reviewing their views
indicated that their only expectation from the hospital staff was the
child's cure and not anything else.
V. CONCLUSIONS
In line with the literature, identified major psychosocial need
categories of PCGs of CAAWC attending the main pediatric
cancer treatment center in Sri Lanka are financial, emotional,
informational, social, and practical needs. These needs should be
identified and addressed as early as possible to mitigate the burden
of caregiving and for the betterment of the caregiver, care
recipient, and professional care providers. Based on the study
findings, formation of peer support groups among PCGs,
counseling and psychotherapy at individual level and group level,
provision of the correct information on right time including
disease prognosis and information on available supportive care
services, and referring the needy one to the correct services, and
making available a booklet on childhood cancer caregiving for
them during the early stage following diagnosis would help to
reduce the distress among these caregivers, facilitating a better
quality of life for the child and whole family.
ACKNOWLEDGMENT
I acknowledge all the study participants and experts in the
clinical field, especially pediatric consultant oncologists at NCI,
Maharagama, and the experts in the public health field who gave
valuable inputs to complete the study successfully.
Declaration of interest:
All four authors declare that there is no conflict of interest in
relation to this study.
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AUTHORS
First Author – Sachintha Dilhani W.N., MBBS, MSc in
Community Medicine, MD in Community Medicine, National
Cancer Control Program, Ministry of Health, Sri Lanka
navarathnasachi@gmail.com
Second Author –Sivayogan S., Emeritus Professor, Department
of Community Medicine, Faculty of Medical Sciences,
University of Sri Jayawardenapura, shivyom@yahoo.com
Third Author – Jayamal De Silva, Senior lecturer, Department
of Psychiatry, Faculty of Medical Sciences, University of Sri
Jayawardenapura, jayamalds@yahoo.com
Fourth Author - Suraj N. Perera, Consultant Community
Physician, National Cancer Control Program, Ministry of
Health, Sri Lanka,
pererasn@yahoo.com
Correspondence Author –Sachintha Dilhani W.N.
navarathnasachi@gmail.com