Doświadczenia opiekunów i wyzwania społecznej akceptacji epilepsji w prowincjach Limpopo i Mpumalanga w Południowej Afryce
Lived experiences and acceptability challenges among caregivers of people with epilepsy in Limpopo and Mpumalanga, South Africa
W skrócie
Badanie pokazuje, że opiekunowie osób z epilepsją na wsiach w Południowej Afryce mają bardzo trudne życie - muszą ciągle uważać na pacjentów, są wyczerpani fizycznie i emocjonalnie, a do tego mierza się ze stygmatem i uprzedzeniami społeczności. Oprócz opieki medycznej opiekunowie borykają się z biedą, trudnościami w dojezdzie do szpitali i brakiem wsparcia, choć próbują radzić sobie dzięki wierze i zaangażowaniu rodziny. Badacze zaproponowali, aby pomoc dla tych osób obejmowała edukację, zmniejszanie uprzedzeń wobec epilepsji oraz większe wsparcie ze strony służby zdrowia i społeczności.
Oryginalny abstract (angielski)
BACKGROUND: Epilepsy places substantial demands on family caregivers, particularly in rural settings where stigma, poverty, limited access to health services, and misinformation shape care. In South Africa, little qualitative evidence has explored how caregivers experience epilepsy care across rural provinces and how social acceptability influences caregiving. OBJECTIVE: To explore the lived experiences and acceptability challenges among caregivers of people with epilepsy (PWE) in Limpopo and Mpumalanga Provinces, South Africa. METHODS: A qualitative exploratory-descriptive study was conducted among informal caregivers of PWE in rural and peri-urban communities across both provinces. Data were collected through in-depth semi-structured interviews and analyzed inductively using thematic analysis. RESULTS: Five interrelated themes captured caregivers' experiences: (1) caregiving as constant vigilance, (2) emotional and physical strain in responding to unpredictable seizures, (3) stigma and low social acceptability of epilepsy, (4) caregiving under structural and service constraints, and (5) coping, endurance, and unmet support needs. Caregivers described continuous supervision, fear during seizures, physical exhaustion, and major disruption to work, mobility, and household routines. Their experiences were further shaped by community judgment, misconceptions about epilepsy, and exclusion in schools, churches, and social spaces. Poverty, transport barriers, limited practical support, and inadequate caregiver guidance from services intensified these burdens. Although caregivers demonstrated endurance through treatment monitoring, family responsibility, faith, and selective use of available support, these coping mechanisms were often fragile and insufficient. CONCLUSION: Caregiving for PWE in rural South Africa is a demanding and socially shaped experience that extends beyond seizure management to include emotional labor, social negotiation, and structural hardship. Interventions to improve epilepsy outcomes should include caregiver education, stigma reduction, family-centered psychosocial support, and stronger community- and primary healthcare-based support systems.