Left to the mercy of fate: a reconstructed psychosocial support narrative of a family raising children with disabilities

Abstract

In a purposeful effort to work with couples to find answers to what kind of support is lacking for families raising children with disabilities, this ar¬ticle presents data from a participatory action research study. Nine families raising children with disabilities participated in the study. The research data were analysed using narrative data analysis, which allows for recon¬structing how families convey and present their experiences of receiving (or not receiving) psychosocial support. The reconstructed narrative of families raising children with disabilities revealed that, despite the avail-ability of assistance, families feel left alone. The reconstructed narrative reflected that the meta-narrative conveys a single meaning: the declarative nature of the support system in responding to the needs of families raising children with disabilities. Participants reported that support is ineffective and fragmented, leaving parents solely responsible for caring for children with disabilities.