Impacts Of Genetic Diseases On The Affected Children's Parents

ABSTRACT

Globally, 1 out of 150 live births has a detectable chromosomal abnormality. Genetic diseases account for about 7 percent and 20–30 percent of birth defects in the industrialized and developing countries respectively. The aim of this study was to determine the impacts of genetic diseases on the affected children’s parents in Africa. A scoping review of eleven electronic databases was done. A multistep selection process was carried out. Only original peer-reviewed qualitative research studies done in Africa and published in peer-reviewed journals between 2018 and 2022 were included. Out of 4765 identified articles, only 10 studies fully met the inclusion criteria. The study concluded that parents of children with genetic diseases face many challenges such as; low quality of life-physically, socially, psychologically and environmentally; lack of information; lack of specialized services; financial strain; negative coping mechanisms; and existential concerns. Recommendations include; counselling and social support for affected parents to help mitigate the impact of genetic diseases; raising awareness of genetic diseases among the affected parents and their families, as well as the public in general; international and national policies and programmes should be instituted to enhance screening and detection of genetic disorders, coordination of clinical management of genetic diseases, facilitation of training of medical genetics/genomics professionals, and the stimulation of research in genetic diseases; ensure affordability of treatment and healthcare services to parents with children with genetic diseases; promote resilience and positive adaptive coping mechanisms; and provision of trauma counselling to the affected parents.

Keywords: Genetic diseases, children, parents, Africa.