Cichy ciężar: rzeczywiste doświadczenia opiekunów osób z epilepsją w Shai Osudoku i Ningo Prampram
Carrying the weight in silence: lived realities of epilepsy caregivers in Shai Osudoku and Ningo Prampram
W skrócie
Badanie pokazuje, że opiekunowie osób z epilepsją w Ghanie borykają się z wieloma trudnościami: muszą monitorować ataki, podawać leki, radzić sobie ze stresem emocjonalnym, finansować leczenie z własnej kieszeni i walczyć ze społecznym stygmatem. Mimo tych wyzwań opiekunowie wykazują się odpornością, opierając się na wsparciu rodziny i wierze religijnej. Autorzy wskazują, że potrzebne są programy wspierające opiekunów, łatwiejszy dostęp do leków oraz edukacja zmniejszająca stygmę epilepsji w społeczeństwie.
Oryginalny abstract (angielski)
BACKGROUND: Epilepsy is a chronic neurological disorder often associated with stigma, misconceptions, and considerable caregiving responsibilities, particularly in low- and middle-income countries such as Ghana. Caregivers are vital yet frequently undervalued in epilepsy care, confronting emotional, social, and health system-related, access-related and financial barriers. This study explored the lived experiences of caregivers of individuals with epilepsy, highlighting their roles, the difficulties they encounter, and their coping strategies within sociocultural and healthcare contexts. METHODS: A qualitative study was conducted with 10 caregivers (5 males and 5 females) of people living with epilepsy in the Shai-Osudoku and Ningo-Prampram districts of Ghana. Participants, including mothers, fathers, and a wife, were purposively selected for in-depth interviews. Transcribed data were analyzed using reflexive thematic analysis with the support of NVivo software. RESULTS: Caregivers took on multiple roles, such as monitoring seizures, managing medications, coordinating care, and navigating diverse care systems, including biomedical, traditional, and spiritual treatment options. Their experiences were marked by emotional and psychological stress, ongoing fear and uncertainty, financial strain from out-of-pocket expenses, reduced income, and social exclusion due to stigma. Limited access to affordable healthcare and antiseizure medications further hindered their ability to seek care and maintain treatment continuity. Despite these obstacles and challenges, caregivers showed resilience through reliance on family support, religious coping strategies, and practical knowledge. CONCLUSION: The findings underscore the need for contextually grounded epilepsy care models that address the interplay of sociocultural beliefs, financial constraints, and barriers to healthcare access. Strengthening and improving caregiver support through accessible mental health services, targeted education, improved access to affordable antiseizure medications, and community-based stigma-reduction awareness initiatives is essential to reduce caregiver burden and improve continuity and quality of epilepsy care in Ghana and similar contexts.