Abstract

Background
Epilepsy is a chronic neurological disorder that imposes a substantial burden on caregivers of patients with the condition. There is a lack of research in sub-Saharan Africa assessing the burden of informal caregiving in epilepsy.

Aims
This study investigated caregiver burden among carers of people with epilepsy, focusing on its patterns, severity, correlates, and impact on caregiver quality of life.

Methods
A descriptive cross-sectional study was conducted among 246 adult attendees (patients with epilepsy and their caregivers in a 1:1 ratio) at a neurology outpatient clinic. Patients aged 18 to 65, and their caregivers, who were at least 18 years old, were recruited consecutively. A socio-demographic questionnaire and the National Hospital Seizure Severity Scale assessed demographics and illness severity, respectively. The socio-demographic questionnaire, Zarit Burden Interview, and WHO Quality of Life-Bref scale were used to assess the carers’ demographics, burden of care, and quality of life, respectively.

Results
The mean burden score was 26.5 ± 13.3. Fifty-three caregivers (43.1%) reported a mild-to-moderate burden, while twenty-one (17.0%) reported moderate-to-severe and severe burdens. Caregiver burden was significantly negatively correlated with carers’ quality of life across almost all domains, with the strongest inverse correlation in the psychological domain (r = -0.4, p = 0.01). There was no statistically significant relationship between caregiver burden and respondents’ demographics or clinical variables, except for the epilepsy severity index of the patients (p = 0.01).

Conclusion
This study provides valuable insights into the burden of care experienced by family members of individuals with epilepsy, highlighting the negative impact on the caregivers' quality of life. Healthcare providers should focus not only on alleviating the suffering of patients with epilepsy but also consider the well-being of caregivers in their treatment plans.

Key words: caregiver burden, epilepsy, quality of life, seizure severity, carers.