Experiences of social relationships for adults living with multiple long-term conditions: a qualitative interview study

Abstract

Background: social relationships are important for self-management and outcomes of multiple long-term conditions (MLTC). Previous research indicates MLTC negatively impacts social relationships and people living with MLTC do not feel adequately supported to manage their health. However, there is limited understanding of the processes and contextual factors that influence social relationships in the context of MLTC. This study explored experiences of social relationships for adults living with MLTC to improve understanding of their social relationship needs.

Methods: semi-structured telephone interviews were conducted with 22 people living with MLTC in Southern England. Participants were recruited through charity networks and GP practices. Eligibility criteria were: individuals aged ≥45 years living with MLTC within the community. Participants were purposively sampled to include diverse characteristics in terms of age, gender, and residential area deprivation. Transcribed interview data were analysed using reflexive thematic analysis.

Results: four themes were developed. “There is no single route to meaningful social connection” reflected how participants achieved, valued, and maintained meaning in relationships in diverse ways. “Change in sense of self” captured the mental load, nostalgia, low mood and depressive symptoms experienced because of MLTC, which was reported to negatively impact their relationships with others. ‘‘A need to be seen and understood” described how participants valued social relationships that enabled them to talk about their conditions with others who have shared experiences. Participants experienced a sense of abandonment when they felt unable to share their needs and experiences with family and close friends. Some participants experienced distress around the need to self-manage their health, which was reinforced by limited health and care services. “Altered interaction” reflected how MLTC required participants to find new ways to maintain social connection.

Conclusion: meaningful connection may be achieved through diverse social relationships, including acquaintances and support groups. Further efforts to connect people to these forms of relationships could improve self-management of MLTC, though strategies may vary for adults with different characteristics and health needs. Interventions that target mental burden, nostalgia, low mood and depressive symptoms experienced because of MLTC could support appropriate and meaningful social connection. Further research is needed to test these relationships.

Patient and public contribution: three public contributors shaped the design of this study by sharing their experiences and views of key issues people who lack adequate social support may experience and how this might impact management of their health. They noted the importance of speaking to a range of people to understand social relationship needs of people living with MLTC, as experiences will vary. Two public contributors reviewed and helped refine the interview topic guide and commented on the importance of tone when conducting interviews, to encourage participants to share their experiences. One public contributor supported analysis of the transcripts through coding, discussion, and manuscript review. They highlighted the abandonment expressed by participants and how participants appeared to want to be seen as independent despite wanting and needing more support.

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Identifiers

ORCID for Hilda Hounkpatin: orcid.org/0000-0002-1360-1791

ORCID for Leanne Morrison: orcid.org/0000-0002-9961-551X

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