'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, S ORCID: https://orcid.org/0000-0003-2810-5659, Blackburn, M, Chambers, L, Downing, J, Flemming, K, Hale, J, Marston, HR, O'Dell, L, Sinason, V and Whitney, S, 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, K and Horne, J, eds., Understanding the grief and loss experiences of carers: research, practitioner and personal perspectives. Abingdon: Routledge, pp. 27-40. ISBN 9781032564043

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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.

Item Type:	Chapter in book
Creators:	Earle, S., Blackburn, M., Chambers, L., Downing, J., Flemming, K., Hale, J., Marston, H.R., O'Dell, L., Sinason, V. and Whitney, S.
Publisher:	Routledge
Place of Publication:	Abingdon
Date:	1 October 2024
Number of Pages:	154
ISBN:	9781032564043
Identifiers:	Number Type 10.4324/9781003435365-3 DOI 2248054 Other
Rights:	This is an Accepted Manuscript of a book chapter published by Routledge/CRC Press in Understanding the Grief and Loss Experiences of Carers on 1 October, 2024, available online: https://www.routledge.com/Understanding-the-Grief-and-Loss-Experiences-of-Carers-Research-Pract/Horne-Jones/p/book/9781032564043.
Divisions:	Schools > School of Social Sciences
Record created by:	Melissa Cornwell
Date Added:	11 Oct 2024 10:27
Last Modified:	11 Oct 2024 10:27
URI:	https://irep.ntu.ac.uk/id/eprint/52398

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