Caregiving burden for adults with epilepsy and coping strategies, a systematic review

Caregiving for adults with epilepsy (AWE) imposes a different degree and scope of challenges than for children and teenagers with epilepsy, and it remains understudied. This study aimed to identify the types of caregiver burdens, needs, and coping strategies in caregiving for AWE.

Previous studies relevant to this topic were identified from 7 databases. Searches were performed in PubMed, CINAHL, Web of Science (WOS), Scopus, Psychology and Behavioral Science Collection (PBSC), Embase, PsychINFO from 1 Jan 1980 to 31 December 2023. The findings were reported according to caregiver burden, caregiver needs, and coping strategies.

22 studies were included in this review, including 14 quantitative and 8 qualitative studies. Six types of burdens were identified: psychological, physical, medical, economic, social, and family. The predominantly reported burden was the psychological burden in developed and developing countries. However, caregivers in developing countries reported additional physical, social, and economic burdens due to cultural and socioeconomic factors. Furthermore, inaccessible and unaffordable health care with a lack of medical knowledge exacerbated the challenges. Stigma and misconceptions led to more psychological distress and social restriction. There is a need for psychological, social, and family support as well as medical information to promote self-efficacy among caregivers. Most caregivers develop their own coping strategies for dealing with caregiving stress.

The caregiving burden for AWE is an understudied area that needs to be addressed by healthcare professionals. The caregivers are experiencing unaddressed psychological and other types of burdens, together with a lack of appropriate interventions and healthcare information.