Obciążenie opiekunów i powiązane z nim czynniki wśród głównych opiekunów dzieci z epilepsją w południowo-zachodniej Ugandzie
Caregiver burden and associated factors among primary caregivers of children with epilepsy in southwestern Uganda
W skrócie
Badanie wykazało, że prawie 60% opiekunów dzieci z epilepsją w Ugandzie doświadcza obciążenia psychicznego związanego z opieką. Obciążenie było silniejsze u starszych opiekunów, kobiet, osób bardziej wykształconych oraz gdy dziecko miało ostatnie napady lub potrzebowało pomocy przy lekach. Autorzy sugerują, że dodanie wsparcia psychologicznego do leczenia epilepsji mogłoby zmniejszyć stres opiekunów i poprawić funkcjonowanie całych rodzin.
Oryginalny abstract (angielski)
BACKGROUND: Globally, caregiver burden in childhood epilepsy is recognized as a major public health concern. However, this phenomenon remains under-studied in Uganda. OBJECTIVE: To assess the prevalence of caregiver burden and identify caregiver- and child-related factors associated with it among primary caregivers of children with epilepsy in Rubanda District, Southwestern Uganda. METHODS: A cross-sectional study was conducted among 288 primary caregivers of children with epilepsy attending Health Centre IV facilities in Rubanda District. Caregiver burden was assessed using the 22-item Zarit Burden Interview (ZBI-22). Descriptive statistics summarized caregiver burden levels, while bivariable and multivariable linear regression analyses identified factors associated with caregiver burden. RESULTS: Overall, 172 caregivers (59.7%) experienced caregiver burden, including 145 (50.4%) with mild-to-moderate burden. Higher caregiver burden was significantly associated with older caregiver age (β = 0.18, 95% CI 0.06-0.31; = 0.003), female sex (β = 4.98, 95% CI 1.74-8.23; p = 0.003), higher educational attainment ( < 0.05), recent seizure activity (β = 7.70, 95% CI 4.89-10.52; < 0.001), longer duration of epilepsy (β = 0.06, 95% CI 0.03-0.09; p < 0.001), and dependence on caregivers for medication administration (β = 4.04, 95% CI 0.98-7.11; = 0.010). CONCLUSION: Caregiver burden is highly prevalent among caregivers of children with epilepsy in rural Southwestern Uganda and is influenced by both caregiver characteristics and child-related clinical factors. Integrating caregiver-focused psychosocial support into epilepsy care services may help reduce caregiver burden and improve outcomes for children and their families in resource-limited settings.