Affiliations 

  • 1 Neurology Division, Department of Medicine, Faculty of Medicine, Universiti Malaya, Kuala Lumpur, Malaysia
  • 2 Neurology Division, Department of Medicine, Faculty of Medicine, Universiti Malaya, Kuala Lumpur, Malaysia. Electronic address: kslimum@gmail.com
  • 3 Department of Nursing Science, Faculty of Medicine, Universiti Malaya, Malaysia
  • 4 Department of Clinical Psychology, Prince of Wales Hospital, Hospital Authority, Hong Kong; Division of Neurosurgery, Department of Surgery, Faculty of Medicine, Chinese University of Hong Kong, Hong Kong
Epilepsy Behav, 2023 Oct;147:109395.
PMID: 37619469 DOI: 10.1016/j.yebeh.2023.109395

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.

* Title and MeSH Headings from MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine.