Yu, Xuen and Lim, Kheng-Seang and Tang, Li-Yoong and Tang, Venus and Lim, Ying-Huan and Fong, Si-Lei and Tan, Chong-Tin (2023) Caregiver burden for adults with epilepsy in Malaysian families: A qualitative study. Epilepsy & Behavior, 147. ISSN 1525-5050, DOI https://doi.org/10.1016/j.yebeh.2023.109395.
Full text not available from this repository.Abstract
Background: Caregivers of adults with epilepsy (AWE) play an important role in the healthcare pathway of AWE and are described as the ``co-client.'' Being caregivers can be stressful and the negative impacts might accumulate over time, affecting their quality of life and well-being.Objectives: This qualitative study aimed to explore the lived experience of caregivers of AWE in Malaysian families and understand their caregiving challenges. Individual semi-structured interviews were held with 12 primary caregivers of AWE. Interpretative Phenomenological Approach (IPA) was used. The interview transcripts were analyzed using NVivo12 software.Results: Primary caregivers of AWE were parents or siblings, with ages ranging from 56 to 80 years old and years of caregiving from 24 to 40 years. Most AWE (58%) were intellectually disabled and fully dependent on ADL needs. Two categories of themes emerged, including four themes on caregiver burden, i.e., physical, emotional, and social burdens, and challenges in future planning of care, and two themes on coping strategies (problem-or emotional-focused). In future planning of care, most caregivers especially parents carried a burden of responsibility and were reluctant to depend on others or institutional services.Conclusion: The caregiving burden among caregivers for adult AWE was not confined to current burdens only but also challenges in future planning. A better understanding of the caregiving burden for AWE and coping strategies is needed to provide tailored psychoeducation or psychosocial intervention to support this population.& COPY; 2023 Elsevier Inc. All rights reserved.
| Item Type: | Article |
|---|---|
| Funders: | Department of Medicine Research Support Fund [Grant no. DOMRSF-2022-05/C3], Universiti Malaya [Grant no. IIRG003A-2020HWB] |
| Uncontrolled Keywords: | Caregiver; Epilepsy; Burden; Malaysia |
| Subjects: | R Medicine > R Medicine (General) |
| Divisions: | Faculty of Medicine > Medicine Department Faculty of Medicine > Nursing Science Department |
| Depositing User: | Ms. Juhaida Abd Rahim |
| Date Deposited: | 11 Oct 2025 13:24 |
| Last Modified: | 11 Oct 2025 13:24 |
| URI: | http://eprints.um.edu.my/id/eprint/48168 |
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