University of Hertfordshire

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Original languageEnglish
Article numberILL-21-0011
JournalIllness, Crisis and Loss
Publication statusAccepted/In press - 23 Apr 2021


Muscular dystrophy is a terminal muscle-wasting condition, whereby families face continuous challenges as their child’s health deteriorates. This research explored accounts of parenthood following bereavement of their child to muscular dystrophy. Narrative inquiry was used to analyse interviews with four couples. Findings suggest an importance in narrating adversities (waking up to different futures) and positive influence (creating legacies). The research highlighted how humour is often used to support others to witness painful accounts (humour through the struggle). Parents appeared to co-regulate the painfulness of narrating loss (storytelling together). Further research is needed on conjoint narrative interviews and how these may enable participants to address shared loss experiences. Practitioners who support bereaved parents could consider the potential value highlighted in this study of meeting with parents conjointly, which include that, through co-regulatory, collaborative processes, families seemed to be supported to reach narrative cohesion, sensitively and safely, when facing loss and bereavement.

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