Author ORCID Identifier
Document Type
Article
Publication Date
7-17-2019
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.
Keywords
barriers, epilepsy, seizures, sub-Saharan Africa
Language
english
Publication Title
BMC Neurology
Grant
K43TW010401
Rights
© The Author(s) 2019. This is an Open Access work distributed under the terms of the Creative Commons Attribution Licence (http://creativecommons.org/licenses/by/4.0/) which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Creative Commons License
This work is licensed under a Creative Commons Attribution 4.0 International License.
Recommended Citation
Kaddumukasa, M., Nalubwama, H., Kaddumukasa, M.N. et al. Barriers to epilepsy care in Central Uganda, a qualitative interview and focus group study involving PLWE and their caregivers. BMC Neurol 19, 161 (2019). https://doi.org/10.1186/s12883-019-1398-z
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Psychiatric and Mental Health Commons, Psychiatry Commons, Psychiatry and Psychology Commons
Manuscript Version
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