Peer support and social network groups among people living with epilepsy: A scoping review

Peer support is a unique connection formed between people who share similar experiences of illness. It is distinct from, but complementary to other forms of support or care provided by family and friends, healthcare professionals, and other service providers. The role of peer support in contributing to the wellbeing and care of people living with epilepsy (PLWE) is increasingly recognized, including via online networks and group therapy. However, little overall synthesis is available to map and conceptualize the different ways peer support contributes to the wellbeing or care of PLWE, or how it occurs via formally and informally organized social network settings.

A scoping review of peer-reviewed literature published between 1998 and 2021 was conducted using Medline, Psychinfo, Embase, Scopus, and CINAHL databases. Included studies comprised empirical research that involved people with epilepsy as the primary participants; included 'peer social support' in the study question or study setting, and included outcome measures related to peer social support or peer-related groupings.

A total of 17 articles were included in the review. The functions of peer support for PLWE can be described as either emotional or instrumental. Emotional peer support includes a sense of empathy and encouragement gained from another person with a shared experience of illness, which can help to improve confidence for those challenged by isolation and stigma. Instrumental peer support refers to the more practical and tangible support provided by peers about treatment and support services, which can improve self-management and clarify misinformation. The mechanisms by which peer support and peer social networks materialize includes face-to-face meetings, online group gatherings, and telephone calls. As well as through organized channels, peer support can be fostered incidentally through, for example, research participation, or in clinical settings. Barriers to PLWE receiving opportunities for peer support include the perceived stigma of living with epilepsy, the high cost of transportation, or poor access to the internet to reach and meet others; enablers include the anonymity afforded by online forums and perceived trust in one's peers or forum organizers.

This nuanced conceptualization of the different types of peer support and peer support networks, as well as the variety of barriers and enablers of peer support for PLWE, will serve to inform more effectively designed clinical care practices and service delivery tailored to the needs of PLWE. This review will inform future research in peer support as an important and emerging area of investigation.