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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; Jones, Louise; Pearce, Susie; Wong, Geoff; Black, Kath M; Haig, Sue; Hough, Rachael; Hurlow, Adam; Stirling, L Caroline; Taylor, Rachel M; Tookman, Adrian; Whelan, Jeremy.
BMJ Open; 9(1): e024397, 2019 01 28.
Artigo em Inglês | MEDLINE | Jan 2019 | ID: mdl-30696681
Resumo: 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 <12 months along with nominated family carers and healthcare professionals. 19 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; and 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.