Perceived epilepsy-related support and enabling environments and associated caregiver factors in rural South Africa: a cross-sectional study in Limpopo and Mpumalanga

Résumé fourni par la source

Background Family caregivers are important sources of support for people with epilepsy (PWE), particularly in rural settings where formal services may be limited. However, less is known about caregivers' perceptions of the community and the informational and service conditions that support the inclusion of PWE. Objective This study described caregivers' perceptions of epilepsy-related support and enabling environments and examined the caregiver and contextual factors associated with these perceptions in selected rural communities in Limpopo and Mpumalanga, South Africa. Methods A cross-sectional study was conducted among 384 family caregivers of PWE in Collins Chabane Local Municipality, Limpopo, and Bushbuckridge Local Municipality, Mpumalanga. Data were collected using a self-developed questionnaire covering stigma, caregiving burden, barriers, and support or enabling conditions. The instrument underwent an exploratory ordinal psychometric assessment. Perceived epilepsy-related support and enabling conditions were measured using a four-item continuous score ranging from 4 to 20. The score demonstrated acceptable preliminary ordinal reliability (ordinal α = 0.723; McDonald's ω = 0.729). Multivariable linear regression with heteroscedasticity-robust standard errors was used to identify associated factors. Results The mean age of respondents was 49.4 years (SD = 14.6; median = 49; IQR = 39–60; range = 18–86). The mean support and enabling-environment score was 6.52 (SD = 2.77), indicating limited availability of the measured support structures. Caregivers at the Mpumalanga study site had scores that were, on average, 1.13 points lower than those at the Limpopo site after adjustment (B = −1.13; 95% CI −1.71 to −0.54; p < 0.001). A greater emotional and safety-related caregiving burden was associated with a lower support-environment score (B = −0.31; 95% CI = −0.44 to −0.18; p < 0.001). Age was not independently associated with the continuous outcome (B = −0.010; 95% CI = −0.032 to 0.012; p = 0.377). The positive association between barriers and the support-environment score was not interpreted substantively because shared item wording and response style may have contributed to this relationship. Conclusion Caregivers reported limited access to support groups, epilepsy management information, community leadership support and organized community inclusion mechanisms. The findings describe perceptions of the contextual support environment rather than direct family acceptance of PWE. Further development and independent validation of the questionnaire are required.

Ce résumé expose les affirmations des auteurs. BNTIC ne l’interprète pas comme une validation indépendante des résultats.