Abstract
Caregivers caring for a child with a genetic condition may experience psychosocial distress, which may be compounded by the context in which the caring takes place. Few studies have examined psychosocial distress and support among caregivers caring for a child with a genetic disorder in low-middle-income countries such as Ghana. The purpose of the current study was to investigate the psychosocial impacts of caring for a child with a genetic disorder in an urban setting in Ghana’s capital, Accra. We conducted individual interviews among 17 caregivers who were taking care of children with various genetic disorders including, albinism, Edward’s syndrome, osteogenesis imperfecta, sickle cell disease, and spondyloepiphyseal dysplasia congenita. Thematic analysis of the data revealed three main themes on the psychosocial impacts, including: (1) self-blame, guilt, and shame; (2) sleep and mood disturbances; and (3) discrimination and stigmatization. We observed three themes about support: (1) psychological support; (2) family and community support; and (3) institutional support. Participants reported limited support from professionals such as psychologists. Discussion focuses on the supportive care needs of caregivers and implications for genetic counselling awareness, advocacy, and training.
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This study was funded by the West African Genetic Medicine Centre of the University of Ghana.
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Conceptualization: Paul Opoku, Annabella Osei-Tutu, Mabel Oti-Boadi; methodology: Paul Opoku, Annabella Osei-Tutu, and Mabel Oti-Boadi; formal analysis and investigation: Paul Opoku, Annabella Osei-Tutu, and Mabel Oti-Boadi; writing—original draft preparation: Annabella Osei-Tutu, Mabel Oti-Boadi, and Paul Opoku; writing—review and editing: Annabella Osei-Tutu, Mabel Oti-Boadi, and Paul Opoku; funding acquisition: Paul Opoku; supervision: Annabella Osei-Tutu and Mabel Oti-Boadi.
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All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients for being included in the study.
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Opoku, P., Osei-Tutu, A. & Oti-Boadi, M. Psychosocial impacts of caring for a child with a genetic disorder in Accra, Ghana. J Community Genet 14, 565–574 (2023). https://doi.org/10.1007/s12687-023-00662-y
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DOI: https://doi.org/10.1007/s12687-023-00662-y