The Psychological Impact of Sickle Cell Disease on the Sick Child's Family (original) (raw)
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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 ...
Children
There is limited information on knowledge, perceptions, and management of sickle cell disease (SCD) in Africa in general and in the Democratic Republic of the Congo (DRC) in particular. This study explored knowledge, perceptions, and burden of 26 parents/caregivers of children with SCD in three selected hospitals in Kinshasa, DRC. We conducted a focus group with in-depth interviews with parents/caregivers of children affected with SCD. Four themes were discussed, including knowledge and perceptions, diagnosis and management, society’s perceptions, and the psychosocial burden and the quality of life of the family affected by SCD. The majority of participants/caregivers felt that society, in general, had negative perceptions of, attitudes toward, and knowledge about SCD. They reported that children with sickle cell are often marginalized, ignored, and excluded from society or school. They face a number of challenges related to care, management, financial difficulties, and a lack of ps...
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.
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 ...
Journal of Black Psychology, 1999
Conceptions of individual and family coping with sickle cell disease (SCD) must incorporate several disease and sociocultural factors. This article proposes an integrative model and tests the relative contribution of model parameters to the prediction of social, academic, and psychological adjustment of children with SCD. The individual coping and family functioning variables most highly predictive of the child's psychological outcomes (anxiety, depression, and positive mood) include parental psychological functioning, maturity demands made of the ill child, and the quality of relations with parents and siblings. Academic adjustment was significantly predicted by parental academic expectations and by the child's rejection of a restrictive sick role. Competent social functioning also was predicted by the extent to which the ill child rejected the role of being sick.
Situational Analysis of Parenting Problems for Caregivers of Children with Sickle Cell Syndromes
Journal of Developmental & Behavioral Pediatrics, 2001
A situational analysis of problematic situations was conducted for 37 caregivers of children with sickle cell disease (SCD) who ranged in age from 5 to 13 years. Participants responded to a semistructured interview related to caring for a child with SCD. The interview included the domains of medication adherence, nutrition, minimizing and coping with pain episodes, social problems, academic difficulties, and children's expression of negative feelings related to having SCD. Caregivers described a total of 356 problems. Almost all caregivers reported experiencing problems with their children's nutrition (n = 35), minimizing pain episodes (n = 34), and their children expressing feelings about having SCD (n = 33). Moderately challenging and emotionally upsetting problems were reported for coping with pain episodes. The total number of problems was significantly higher for boys than for girls. Nutrition issues were more frequently reported for younger children. Findings have salient clinical implications for the care of children with SCD.
Nusantara Journal of Behavioral and Social Science, 2024
Sickle cell disease, the most widespread genetic disorder globally, is characterized by chronic and painful crises and high treatment costs, particularly in the Sub-Saharan African context where the disease is often associated with imminent death. This study aims to understand the experiences of an adolescent in Cameroon living with this disease and residing with her grandparents. Through in-depth interviews, we reveal how therapy non-compliance-particularly evident in medication delays-and the ambivalent behavior of her grandparents impact her disease management. The grandparents exhibit behaviors that are sometimes overprotective and at times aggressive, which not only affect how this adolescent understands and manages her condition but also hinder the process of subjectivation of her disease. These findings highlight the need to provide a space for grandparents to express their understanding of their granddaughter's illness and to assume their role in the care process. This study extends our understanding of family dynamics in managing sickle cell disease and demonstrates the importance of supporting grandparents as crucial resources in healthcare within this context.
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...
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.
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....