“It’s Not Just Care, It’s Our Life”: A Qualitative Study of Caregiving Relationships Between Young Adults with Mobility Disabilities and Their Parents in India

Abstract

Caregiving relationships between young adults with mobility disabilities and their parents are often examined through the frameworks of burden, dependence, and/or role strain, overlooking the relational and emotional processes through which care is experienced by both parties. This qualitative study explores caregiving as a psychological and relational experience shaped by emotional reciprocity, negotiation, and shared meaning within the Indian sociocultural context. Using Interpretative Phenomenological Analysis (IPA), in-depth semi-structured interviews were conducted with six participants (three parent-child dyads). The analysis yielded five interconnected themes: caregiving as moral identity and relational interdependence; emotional withholding as a form of care and reciprocity; negotiated autonomy within close relationships; systemic inaccessibility as a shared burden; and the redefinition of normalcy through adaptation, companionship, and shared joy. Findings highlight caregiving as a co-constructed relationship rather than a unidirectional task, where autonomy, identity, and emotional well-being are continuously negotiated.