'I could cry all day, every day, about my losses': Caring for young adults with life-shortening conditions — families' experiences of disruption and loss

Earle, Sarah; Blackburn, Maddie; Chambers, Lizzie; Downing, Julia; Flemming, Kate; Hale, Jamie; Marston, Hannah R.; O'Dell, Lindsay; Sinason, Valerie and Whitney, Sally (2024). 'I could cry all day, every day, about my losses': Caring for young adults with life-shortening conditions — families' experiences of disruption and loss. In: Jones, Kerry and Horne, Joanna eds. Understanding the Grief and Loss Experiences of Carers: Research, Practitioner and Personal Perspectives. Routledge Key Themes in Health and Safety. London: Routledge, pp. 27–40.

DOI: https://doi.org/10.4324/9781003435365-3

Abstract

Young people with life-shortening conditions were not expected to live into adulthood. However, changes to medical technologies and treatments mean that this ‘new’ population are now living longer than ever. This chapter is based on co-produced qualitative research carried out during the Coronavirus (COVID-19) pandemic which investigated the unexpected consequences of pandemic control measures such as lockdown and shielding. Using constructivist Grounded Theory Method, the chapter draws on interviews with family members who care for a child with a life-shortening condition. Four key findings emerge that highlight the disruption brought about by the material and anticipatory losses experienced by parents. These are: a loss of certainty and ontological security; the loss of idealised notions of babies and parenthood; the loss of future(s); and the anticipatory loss of an idealised good death.

Viewing alternatives

Metrics

Item Actions

Export

You can export this page using these formats Digital Object Identifier - DOI