Resumen

SABO, U A; BUTTNER, P  y  SCHER, G. Impact of caregiver burden on health-related quality of life and family functioning of carers of children with epilepsy at the Charlotte Maxeke Johannesburg Academic Hospital, South Africa. S. Afr. j. child health [online]. 2020, vol.14, n.2, pp.66-70. ISSN 1999-7671.  http://dx.doi.org/10.7196/SAJCH.2020.v14i2.1603.

BACKGROUND. The impact of caring for a child with a chronic disease on caregivers and their family functioning contributes to the child's adaptation to the disease. OBJECTIVES. To determine the impact of caregiver burden on the health-related quality of life (HRQOL) and family functioning of carers of children with epilepsy (CWE), and to determine factors associated with a high impact of caregiver burden. METHOD. A cross-sectional study was conducted among primary caregivers of CWE attending the Charlotte Maxeke Johannesburg Academic Hospital, South Africa. Participants had been involved in childcare for at least 6 months before study enrolment and all gave informed consent. Data regarding sociodemographic and epilepsy-related variables were obtained from questionnaires, including the 36-item family impact module of the Pediatric Quality of Life assessment tool. Scores in the lower quartile were considered indicative of a negative impact on HRQOL and poor family functioning. RESULTS. Participants identified as experiencing a high impact of paediatric epilepsy care reported raw scores <31.3 for both caregiver burden and family functioning. The family functioning score correlated strongly with the caregivers' HRQOL score (p=0.78; p<0.001). Multivariate analysis identified a low level of education among caregivers and a high seizure frequency in patients as independent predictors of caregiver burden associated with a negative impact. CONCLUSION. Our findings suggest that the burden of caregiving in paediatric epilepsy among our study population impacts negatively on family functioning. The burden of care was associated with a low level of caregiver education and a high seizure frequency in their children.

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