"They Just Love Me"-An Examination of Social Support Experiences and Values Among People With TBI.

Abstract

Social support is important for health and functional outcomes after traumatic brain injury (TBI), but many adults with TBI report inadequate social support. Little research has examined the social support priorities of adults with TBI or what an optimal social support network should include. The objective of this study was to describe the social support structures and experiences of adults with TBI. Community-based rehabilitation program. Community-dwelling adults with TBI, predominantly from racial and ethnic minority groups. Cross-sectional collection of quantitative and qualitative data. Number of close social contacts and total social contacts, along with a report of the frequency of social support using the Medical Outcomes Study Social Support Survey. Qualitative interviews were used to examine the quality of social support and participant values and priorities. Participants had an average of 4.3 close contacts (median 3.5, range 1-10), an average of 8.5 total social contacts (median 7, range 2-28), and a low frequency of social support (mean 28.4, SD=24.7). Interview themes fell under 2 grand themes: structure of social networks (social networks are made up of families; proximity influences the type of support) and quality of social support (commitment vs indifference; doing things with and for others adds meaning; and "they just love me"). Participants in this study had small social networks and a low frequency of social support. Findings suggest that people with TBI value committed support partners, social inclusion, bidirectional relationships, and emotional connection, yet experience lower support in these areas compared to tangible support. Future research should examine how to adapt existing models of social support to more closely align with participant values. Rehabilitation services may need to focus more heavily on individual and family training, addressing strategies to develop and maintain relationships, emotional connection, and communication to enhance relationship and social support quality.