The Psychosocial Challenges and Coping Mechanisms of Parents of Children with Epilepsy: The Case of Adama City
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Date
2025-06-01
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Addis Ababa University
Abstract
Epilepsy is a serious health condition that affects not only children but also their families, especially their parents, who serve as primary caregivers. While much attention has been given to treating epilepsy in children, the challenges faced by their parents are often overlooked. This study aims to explore the psychosocial challenges and coping mechanisms of parents of children with epilepsy in Adama City. It focuses on parents of children with epilepsy who are members of the Adama City Association of People with Disabilities. A qualitative research design was used to better understand the experiences of these parents. Data were collected through semi-structured interviews and Focus Group Discussions from 14 parents (11 mothers and 3 fathers. These parents were selected from 24 (Male 29 and Female 13) members of the parents of children with epilepsy in the association. The findings were thematically analyzed into three main themes: (i) psychological challenges, (ii) social challenges, and (iii) coping mechanisms. The findings show that parents face significant psychological challenges such as stress, anxiety, depression, loneliness, and self-blame. Social challenges include stigma, discrimination, lack of support, financial hardship, and limited access to healthcare and counseling services. Cultural beliefs that associate epilepsy with spiritual causes or punishment for sin worsen these challenges. Despite these difficulties, parents use various coping mechanisms. These include relying on faith and spirituality, seeking help from local organizations, educating themselves about epilepsy, and drawing strength from personal resilience and commitment to their children. However, the study also revealed a lack of professional support, particularly in areas such as medical care, nutrition, and behavioral management. The study recommends that healthcare services and psychosocial support programs for families of children with epilepsy should be improved. Raising awareness in the community is also essential to reduce stigma and promote understanding.
Keywords: Epilepsy, Psychosocial Challenges, Coping Mechanisms, Stigma, Parents
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Epilepsy is a serious health condition that affects not only children but also their families, especially their parents, who serve as primary caregivers. While much attention has been given to treating epilepsy in children, the challenges faced by their parents are often overlooked. This study aims to explore the psychosocial challenges and coping mechanisms of parents of children with epilepsy in Adama City. It focuses on parents of children with epilepsy who are members of the Adama City Association of People with Disabilities. A qualitative research design was used to better understand the experiences of these parents. Data were collected through semi-structured interviews and Focus Group Discussions from 14 parents (11 mothers and 3 fathers. These parents were selected from 24 (Male 29 and Female 13) members of the parents of children with epilepsy in the association. The findings were thematically analyzed into three main themes: (i) psychological challenges, (ii) social challenges, and (iii) coping mechanisms. The findings show that parents face significant psychological challenges such as stress, anxiety, depression, loneliness, and self-blame. Social challenges include stigma, discrimination, lack of support, financial hardship, and limited access to healthcare and counseling services. Cultural beliefs that associate epilepsy with spiritual causes or punishment for sin worsen these challenges. Despite these difficulties, parents use various coping mechanisms. These include relying on faith and spirituality, seeking help from local organizations, educating themselves about epilepsy, and drawing strength from personal resilience and commitment to their children. However, the study also revealed a lack of professional support, particularly in areas such as medical care, nutrition, and behavioral management. The study recommends that healthcare services and psychosocial support programs for families of children with epilepsy should be improved. Raising awareness in the community is also essential to reduce stigma and promote understanding. Keywords: Epilepsy, Psychosocial Challenges, Coping Mechanisms, Stigma, Parents