Caregivers’ Perspective on the Psychological Burden of Living with Children Affected by Sickle Cell Disease in Kinshasa, the Democratic Republic of Congo (original) (raw)
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2022
Background: Families of children living with sickle cell disease face several challenges ranging from psychosocial to social-economic challenges. This study aimed to explore psychosocial challenges experienced by caretakers of patients with SCD and the various coping mechanisms. Methods: A mixed-methods cross-sectional study was carried out among caregivers of children with SCD who were admitted at the pediatric wards of the Mbale Regional Referral Hospital from September 2019 to November 2019. Results: Most participants 285(85.59%) reported that they experienced psychological challenges and almost all the participants in this study 297(89.19%) experienced social challenges during the care of their patients. Only 36(10.81%) reported not experiencing any social challenges. Almost all the participants reported coping with the situation in various ways of which, 296(88.89%) used acceptance, 9(2.7%) still lived in denial, while 9(2.7%) used talking with others and getting counseled to reduce the intensity of the feelings experienced. Qualitatively, three themes were generated from the in-depth interviews; knowledge of the child's health condition, common symptoms and care, the experience of psychosocial challenges, and coping strategies. Conclusion. Sickle cell disease has produced two sets of sufferers; the people living with the disease and those who are caring for loved ones. Being conscious of this will help health practitioners to be more empathetic at patients with the caregivers when treating people living with sickle cell disease.
Psychosocial burden of sickle cell disease on the family, Nigeria
African Journal of Primary Health Care & Family Medicine, 2012
Background: Sickle Cell Disease (SCD), the most common genetic disorder amongst Black people, poses a significant psychosocial burden on the sufferers, the caregivers and their families.Objective and methods: From 01 January 2011 to 30 September 2011 the caregivers of children with SCD treated at the Paediatric Haematology Clinic of the University Teaching Hospital in Ado-Ekiti, Nigeria, were included in a study, using a structured questionnaire and a validated, culture-relevant disease burden interview to assess the psychosocial burden of SCD on these caregivers. Three main objective psychosocial domains and some subjective domains, including the caregivers’ coping ability were assessed.Results: A total of 225 caregivers, consisting of 202 mothers (89.8%), 15 grandmothers (6.7%) and 8 fathers (3.6%) were studied. In 53.3% of the families, the care of children with SCD adversely affected the provision of their basic needs, with 73.3% of the caregivers stating that time spent caring ...
BMJ Open, 2023
Objective This study sought to explore the burden experienced by informal caregivers in caring for their children with sickle cell disease (SCD). Design A qualitative exploratory design was employed in the study using in-depth interviews. Setting The study was conducted at the sickle cell clinic of the Tamale Teaching Hospital, Ghana. Participants Data were gathered from 15 purposively selected informal caregivers, whose children with SCD received care at the sickle cell clinic of the Tamale Teaching Hospital, using a semistructured in-depth interview guide in May-June 2021. Their responses were audio-taped, transcribed and analysed using the reflexive thematic analysis approach. Results Five major themes emerged from data analysis. These were: the burden of children's ill-health; financial burden; employment challenges; psychosocial burden and determinants of caregivers' burden. These burdens destabilised the personal lives, financial standing, social relationships, and employment of caregivers in general and that of other immediate family members, thus, impacting family processes and health. Conclusions Health professionals must devise strategies for counselling, early diagnosis and effective management of children with SCD across Ghana. The Ministry of Health must subsidise medications and laboratory services for children with SCD to help minimise the financial burden on caregivers. Further, counselling and psychological support services must be established in hospitals to assist caregivers to cope effectively.
International Journal of Environmental Research and Public Health
Tanzania is among the top five countries with a high burden of sickle cell disease (SCD) in the world. Even though the effects of SCD on quality of life have been documented in other countries including Nigeria and the United States of America, few are known from Tanzania. Therefore, this study focused on evaluating the effects of SCD on the quality of life among children living with SCD and their parents. The study employed a qualitative approach to interview purposively selected parents of children who have lived with SCD and have used hydroxyurea (HU) for more than 3 years. The in-depth interviews were conducted with 11 parents of children with SCD at the Muhimbili University of Health and Allied Sciences (MUHAS) in Dar-es-salaam, Tanzania. A semi-structured interview guide was used. Interviews were audio-recorded, transcribed, and thematically analyzed. Three themes were generated including psycho-social effects: family conflicts and divorce, limited access to education, stress ...
BioMed Research International
Sickle cell disease (SCD) is a serious genetic and inherited disorder. It has a physical, psychological, and socioeconomic impact on affected individuals including children and families. Globally, about 275,000 children are born annually with SCD, with an estimated 85% of these births being in Africa. In Ghana, an estimated 2% of infants that were screened were affected by SCD. Although extensive studies have been conducted on the burden on parents of children with SCD, little is known about how parents manage the disease among their children at home in our setting. This qualitative study explored the knowledge of caregivers of children with SCD, how they recognize/monitor complications of the disease and management strategies at home. An explorative qualitative study using the nonprobability purposive method was used to interview fourteen (14) caregivers of children with SCD who were recruited from the Tamale Teaching Hospital. In-depth interviews using an interview guide was used....
The Psychological Impact of Sickle Cell Disease on the Sick Child's Family
Acta Scientific Paediatrics, 2020
It is accepted that a supportive and containing family environment conducive to a therapeutic alliance being established in the best conditions is a necessary condition for improving the quality of life of the sick child and his family [1,2]. Few studies focus specifically on the experience of families including a child with sickle cell disease. However, it remains a common pathology characterized by physical suffering, repeated hospitalization, side effects from the treatment and even risk of mortality. This genetic disease is the most prevalent in the world, with about 500 million individuals carrying the sickle cell trait and 50 million living with the disease worldwide [3]. Originally spread over malaria-endemic areas such as sub-Saharan African countries,
Psychosocial impact of sickle cell disorder: perspectives from a Nigerian setting
Globalization and Health, 2010
Sickle Cell Disorder is a global health problem with psychosocial implications. Nigeria has the largest population of people with sickle cell disorder, with about 150,000 births annually. This study explored the psychosocial impact of sickle cell disorder in 408 adolescents and adults attending three hospitals in Lagos, Nigeria. A questionnaire was designed for the study, with some of commonly described areas of psychosocial impact including general public perceptions and attitudes, education, employment, and healthcare issues, and emotional responses. The majority of participants thought that society in general had a negative image of SCD, and reported negative perceptions and attitudes. Some issues in education, employment, and healthcare were expressed, however these were in the minority of cases. The results also showed that depressive feelings were experienced in almost half the study population, even though feelings of anxiety or self-hate were uncommon. Clinical implications of these findings are considered.
Psychosocial Burden of Childhood Sickle Cell Disease on Caregivers in Kenya
Journal of Pediatric Psychology
Objectives To characterize the types and magnitude of psychosocial burden present in caregivers who have a child with sickle cell disease (SCD) in Kenya and to identify predictors of caregiver psychosocial burden, including disease severity and financial hardship. Methods Primary caregivers (N = 103) of children aged 1–10 years diagnosed with SCD completed surveys assessing multiple domains of caregiver quality of life (QOL), adjustment to child illness, mental health, and financial hardship. Descriptive statistics characterize psychosocial burden, and linear models assess associations. Results On indicators of QOL, caregivers report multiple difficulties across most domains, including daily activities and physical, social, cognitive, and emotional well-being. Daily activities emerged as most burdensome. On indicators of parental adjustment to chronic illness, guilt and worry emerged as the greatest concern, followed by long-term uncertainty and unresolved sorrow and anger; relative...
BMC Public Health
Background: Worldwide, the burden of Sickle Cell disease (SCD) has not been amply addressed. In Africa, Uganda has the 5th highest burden, a situation aggravated by limited and inaccessible formal social support structures to aid patients and families cope better with the psychosocial burden of SCD. In addition, this has been coupled with stigmatization and discrimination of people living with sickle cell disease causing isolation from family and society. Method: This cross sectional study therefore set out to determine the attitudes, perception and level of awareness towards Sickle Cell disease in Ugandan communities. The study used an interviewer administered questionnaires to collect the data. Results: Out of 110 people sampled; 91.2% of the respondents had ever heard of SCD with the highest proportion 38.7% hearing of SCD from friends and family. Close to half of the respondents 48% knew that SCD is inherited, however a large proportion 44.2% did not know the cause of SCD. However, 68.7% of the respondents said they cannot marry a person with SCD. Conclusion: The study results indicate that more effort needs to be done to promote sickle cell awareness in Uganda communities with emphasis on the inclusion of sickle cell in health education campaigns.