Abstract
BackgroundEpilepsy 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.MethodsThe 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.ResultsThree 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.ConclusionsThe 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.
Highlights
Epilepsy is a common neurological disease with substantial impact on the subject and their caretakers
Studies assessing the barriers to epilepsy care in Uganda are not available yet developing a culturally acceptable and effective intervention requires an understanding of these modifiable barriers in epilepsy care
Based on the content of the analyzed study data generated, predominant barriers to epilepsy care were summarized under three themes
Summary
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. Limited knowledge on epilepsy in PLWE and their caregivers to guide appropriate choices of care remains a challenge, despite advancements in treatment, diagnosis and care of PLWE in our settings. This subsequently portends to recurrent seizures and associated stigmatizing or negative beliefs, and attitudes among community dwellers to PLWE [3,4,5,6]. This study set out to explore the perceived barriers to epilepsy care in PLWE and their caregivers in a Ugandan setting
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