Experiences of social participation and inclusion among primary caregivers of children with cerebral palsy in China: a qualitative descriptive study

Abstract

Primary caregivers of children with cerebral palsy (CP) may experience challenges affecting their social participation and inclusion. However, these experiences remain insufficiently understood in the Chinese context. Understanding these experiences is important for family-centred nursing and rehabilitation support. A qualitative descriptive study was conducted with 26 primary caregivers recruited from a tertiary rehabilitation hospital in China. Semi-structured interviews were conducted face-to-face, via WeChat video call, or by telephone. Data were analysed inductively using Braun and Clarke’s six-phase approach to reflexive thematic analysis. Four themes, each comprising two subthemes, were developed: (1) Emotional distress and withdrawal from social life; (2) Caregiving demands restricting opportunities for participation; (3) Role expectations narrowing social identities and everyday roles; and (4) Stigma and exclusion undermining belonging and acceptance. In this study, primary caregivers of children with CP described reduced social participation and limited inclusion associated with overlapping emotional, caregiving, role-related, and social influences.