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Understanding care when cure is not likely for young adults who face cancer: a realist analysis of data from patients, families and healthcare professionals

Kenten, Charlotte, Ngwenya, Nothando, Gibson, Faith, Flatley, Mary, Louise, Jones, Susie, Pearce, Wong, Geoff, Black, Kath, Haig, Sue, Hough, Rachael , Hurlow, Adam, Stirling, L. Caroline, Taylor, Rachel M, Tookman, Adrian and Whelan, Jeremy Understanding care when cure is not likely for young adults who face cancer: a realist analysis of data from patients, families and healthcare professionals BMJ Open.

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Abstract

Objectives: To understand the experiences of young adults with cancer for whom cure is not likely, in particular what may be specific for people aged 16-40 years and how this might affect care. Design: We used data from multiple sources (semi-structured interviews with people with cancer, nominated family members and healthcare professionals, and workshops) informed by a preliminary programme theory: realist analysis of data within these themes enabled revision of our theory. A realist logic of analysis explored contexts and mechanisms affecting outcomes of care. Setting: Three cancer centres and associated palliative care services across England. Participants: We aimed for a purposive sample of 45 people with cancer from two groups: those aged 16-24 years for whom there may be specialist cancer centres and those 16-40 years cared for through general adult services; each could nominate for interview one family member and one healthcare professional. We interviewed three people aged 16-24 years and 30 people 25-40 years diagnosed with cancer (carcinomas; blood cancers; sarcoma;central nervous system tumours) with a clinician-estimated prognosis of less than 12 months along with nominated family carers and healthcare professionals. Nineteen bereaved family members and 47 healthcare professionals participated in workshops. Results: Data were available from 69 interviews (33 people with cancer, 14 family carers, 22 healthcare professionals) and six workshops. Qualitative analysis revealed seven key themes: loss of control; maintenance of normal life; continuity of care; support for professionals; support for families; importance of language chosen by professionals;financial concerns. Conclusions: Current care towards end of life for young adults with cancer and their families does not meet needs and expectations. We identified challenges specific to those aged 16-40 years. The burden that care delivery imposes on healthcare professionals must be recognised. These findings can inform recommendations for measures to be incorporated into services.

Item Type: Article
Divisions : Faculty of Health and Medical Sciences
Authors :
NameEmailORCID
Kenten, Charlotte
Ngwenya, Nothando
Gibson, Faithf.gibson@surrey.ac.uk
Flatley, Mary
Louise, Jones
Susie, Pearce
Wong, Geoff
Black, Kath
Haig, Sue
Hough, Rachael
Hurlow, Adam
Stirling, L. Caroline
Taylor, Rachel M
Tookman, Adrian
Whelan, Jeremy
Depositing User : Rebecca Cooper
Date Deposited : 08 Jan 2019 13:59
Last Modified : 06 Jul 2019 05:26
URI: http://epubs.surrey.ac.uk/id/eprint/850102

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