Online support groups for family caregivers: understanding the psychosocial mechanisms

This thesis explored the psychosocial mechanisms underpinning Online Support Groups (OSGs) for family caregivers, a growing phenomenon particularly accelerated by the COVID-19 pandemic. Family caregiving, while providing essential care to individuals with various health conditions, often results in significant stress and health impacts on the caregivers themselves. Social support, particularly through support groups, has been identified as a crucial factor in mitigating these negative effects.

This research investigated the types, characteristics, and effectiveness of OSGs for family caregivers and aimed to understand some of the underlying psychosocial processes through a series of studies employing a scoping literature review, two qualitative and one quantitative study. Although OSGs are intended to provide social support, there is nevertheless incomplete understanding how and why family caregivers use these groups and any barriers or facilitators to engagement. Where OSGs do provide support, the factors that contribute to their success are not well understood.

Key findings from the scoping review (Chapter 2) identified the range of OSGs available to family caregivers, highlighting the common use of text-based, asynchronous platforms that offer anonymity and are often moderated by peers or professionals. Two categories of Safe Communication in the Group and Engagement and Group Management were used to describe how social support is generated. The two qualitative studies were analyses of the same dataset created from 18 semi-structured interviews with participants of one Irish online support group. The first qualitative study (Chapter 3) confirmed that these groups provide essential emotional and informational support, with successful engagement linked to the sharing of lived experiences and the creation of a non-judgmental, supportive environment. A new framework, Journey of Engagement and Support in Online Support Groups for Family Caregivers, was presented, emphasising the importance of group facilitation, structure, and participant interaction.

In the second qualitative study (Chapter 4), a social identity framework was applied and reflexive thematic analysis generated four main themes, including “the formation of “Tribe and the Tribe gets it”. This Tribe identity fosters social support and a sense of belonging among members and helps participants to feel visible. The study highlighted the central leadership role of moderators in cultivating this group identity, concluding that group identity can be cultivated through considered, active and balanced moderation, creating a safe, welcoming and supportive space where family caregivers are able to have fun and seek information, advice and emotional support, which helps relieve loneliness and social isolation.

Finally, the quantitative analysis (Chapter 5) further examined the relationship between social support, social identity, and perceived stress among OSG participants and explored if there were any differences in levels in social support and stress between OSG and non-OSG members. Contrary to the study hypothesis, there was no significant differences in levels of social support and stress between the two groups. However, for OSG members, there were significant positive relationships between social identity and social support meaning higher social identity was correlated with higher social support although, independently, these were not correlated with perceived stress. Again, contrary to SIA theory and our hypothesis, in mediation analysis those who reported higher social support from OSG members, also reported higher OSG social identity which in turn was associated with lower perceived stress. Moreover, this mediation withstood adjustment for covariates.

This study offers new knowledge on non-participants of OSG as well as bringing forward the exploration on social support and social identity.

The thesis concluded with recommendations for the design and implementation of effective OSGs, aiming to enhance appropriate and meaningful support for family caregivers. A core component of the research was to contribute to the development of cohesive policy frameworks and practical interventions and the findings from this research have important implications for the design and implementation of OSG as support options for family caregivers.