Barriers to epilepsy care in central Uganda, a qualitative interview and focus group study involving PLWE and their caregivers

Abstract Background Epilepsy is a common neurological disease with substantial impact on the subject and their caretakers. This exploratory study identified barriers to care for persons living with epilepsy (PLWE) to develop a culturally acceptable nurse led self-management intervention for PLWE previously developed in the United States. Methods The study involving 48 participants (31 PLWE and 17 caregivers) with in depth interviews and focus groups was conducted. We obtained insights into barriers to care in PLWE and their caregivers. Using a thematic analytic procedure emphasizing the dominant themes the qualitative responses were analyzed. Median age of PLWE was 24 years (IQR 19–30), and10 (52.6%) were male. The median age of epilepsy onset was 12 years (IQR 6 – 18), range of 1 -37 years. The median age of caregivers was 50 years (IQR 45 – 50.5), with a range of 18 -78 years. Seventy five percent of caregivers (6/8) were females. Results Three major areas of perceived barriers involving individual, family or community and provider and healthcare system barriers to epilepsy care emerged. Individual factors like limited epilepsy knowledge and medication non-adherence were reported to be key barriers to epilepsy care. Caregiver burden and lack of family support as well as poor health care access were identified from the family and health care systems. Conclusions The main barrier to epilepsy care is limited epilepsy knowledge in PLWE and their caregivers. Improving epilepsy care awareness and knowledge within communities and appropriate health care provider service for epilepsy would help reduce epilepsy barriers and improve care.