“I need to talk, to talk to people”: a qualitative study of service user and carer views and priorities for social functioning in schizophrenia-spectrum disorders

Improving social functioning for people with schizophrenia-spectrum disorders is a priority for service users, carers and broader society. While many face challenges with social functioning, a proportion do obtain a job, a partner, and other valued social goals. Informal carers are key stakeholders, support recovery and may support service users' social functioning, though some research suggests carer and service user priorities may differ. Research suggests item content in measures of social functioning may not fully capture people's social world. The aim of this study was to explore service user and carer understandings of social functioning and what they value most, to inform intervention and measurement approaches. Semi-structured interviews were conducted with twelve service users and eight carers and audio recorded. Reflexive thematic analysis was conducted on anonymized transcripts with input from a multidisciplinary team and a carer with lived experience. One overarching theme, 'Fitting in and being accepted' reflected service user and carer participants' emphasis on integration and belonging beyond any particular social functioning outcome. Four themes were generated from the analysis: 'the value in performing everyday activities', 'communication and sociability as connection to the world', 'close relationships as central to social functioning and wellbeing' and 'the paradox of work: highly valued but a potentially risky endeavour'. Having a job was considered important but was out of reach for many. Revised expectations meant that service users who had more challenges with social functioning valued basic independence and achieving this helped them feel integrated in society. Service users and carers had broadly similar priorities and expectations for social functioning, with some exceptions including expectations around romantic relationships. Digital communication served as an important means of low pressure connection to others. People with schizophrenia need more social opportunities that fit their circumstances including developing relationships and accessing work. Instruments that measure social functioning may not reflect what service users find meaningful about social functioning, such as feeling accepted and fitting in and their use of digital communication.