Narrative accounts of parenthood following the death of a child to muscular dystrophy

Abstract

Rationale and Aims: Research into the lived experience of parenting children with muscular dystrophy has typically addressed key transitions along the disease trajectory, such as diagnosis or end-of-life care. Families reportedly face continuous challenges as their child’s health deteriorates. No research has considered accounts of parenting across the lifespan that look at adaptation following their child’s death. This research was conducted in the context of a wish-fulfilment charity that offer experiences for children to be supported in activities that are usually deemed inaccessible. In this context, the study asked how do parents who have lost a child to muscular dystrophy story their experiences of parenting. Methods: This research used a qualitative approach that explored the accounts of eight parents interviewed in couples, all of who had experienced the death of their child to muscular dystrophy. The study used a semi-structured interview, lasting from 100-150 minutes each. Interviews were video-recorded, transcribed, and analysed using narrative analysis to explore what and how the parents narrated their experiences. Consideration was given to the social and cultural contexts that shaped these. Analysis: Multiple readings of the transcripts allowed me to develop individual summaries and then construct an analysis across all of the accounts. Three main stories of change, survival and creating change emerged through my analysis. These three stories represented six sub-stories in total: waking up to different futures; being so close, you don’t see the deterioration; humour through the struggle; storytelling together; creating a legacy; and living the dream. Findings: Couples narrated the loss of parental dreams, leading to the need for identity (re)formation. Humour and storytelling together were often used to regulate emotions during the storying telling, and a means of surviving their loss. Parents shared narratives of building legacies and the memories created through ‘living the dream’, which alluded to an impact that surpassed death itself. Implications: These findings suggest the need for greater consideration of sense-making, changing identities, and benefit-finding in clinical consultations, at key transitions during the parenting journey and particularly following the death of a child to muscular dystrophy. Accounts suggest that wish-fulfilment events can sustain hope for parents, a proposition that will need further investigation in the future.