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Cancer-related information needs and treatment decision-making experiences of people with dementia in England: a multiple perspective qualitative study
  1. Lorna McWilliams1,2,
  2. Carole Farrell1,2,
  3. John Keady2,
  4. Caroline Swarbrick2,
  5. Lorraine Burgess3,
  6. Gunn Grande2,
  7. Sarah Bellhouse1,
  8. Janelle Yorke1,2
  1. 1 Christie Patient Centred Research, School of Oncology, The Christie NHS Foundation Trust, Manchester, UK
  2. 2 Division of Nursing, Midwifery and Social Work, School of Health Sciences, University of Manchester, Manchester, UK
  3. 3 Psycho-Oncology, The Christie NHS Foundation Trust, Manchester, UK
  1. Correspondence to Dr Lorna McWilliams; lorna.mcwilliams{at}christie.nhs.uk

Abstract

Objectives Little is known about the cancer experience and support needs of people with dementia. In particular, no evidence currently exists to demonstrate the likely complex decision-making processes for this patient group and the oncology healthcare professionals (HCP) involved in their care. The aim of this study was to explore the cancer-related information needs and decision-making experiences of patients with cancer and comorbid dementia, their informal caregivers and oncology HCPs.

Design Cross-sectional qualitative study. Semistructured interviews were conducted face to face with participants. Interviews were audio recorded and transcribed prior to thematic analysis.

Setting Patients with a diagnosis of cancer and dementia, their informal caregivers and oncology HCPs involved in their care, all recruited from a regional treatment cancer centre.

Participants Purposeful sample of 10 patients with a diagnosis of cancer–dementia, informal caregivers (n=9) and oncology HCPs (n=12).

Results Four themes were identified: (1) leading to the initial consultation—HCPs require more detailed information on the functional impact of dementia and how it may influence cancer treatment options prior to meeting the patient; (2) communicating clinically relevant information—informal caregivers are relied on to provide patient information, advocate for the patient and support decision-making; (3) adjustments to cancer care—patients with dementia get through treatment with the help of their family and (4) following completion of cancer treatment—there are continuing information needs. Oncology HCPs discussed their need to consult specialists in dementia care to support treatment decision-making.

Conclusions Although patients with cancer–dementia are involved in their treatment decision-making, informal caregivers are generally crucial in supporting this process. Individual patient needs and circumstances related to their cancer must be considered in the context of dementia prognosis highlighting complexities of decision-making in this population. Oncology teams should strive to involve healthcare staff with dementia expertise as early as possible in the cancer pathway.

  • dementia
  • oncology
  • qualitative research

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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Footnotes

  • Contributors Conception and design: LM, CF, JK, LB, CS, GG and JY; data collection: LM, CF and LB; data analysis and interpretation: LM, CF, JK, LB, CS, GG, JY and SB; drafting of the paper: LM, CF, JK, CS, GG, LB, SB and JY; all authors reviewed the manuscript and approved the final draft.

  • Funding This work was supported by Manchester Institute for Collaborative Research on Ageing.

  • Competing interests None declared.

  • Patient consent Detail has been removed from this case description/these case descriptions to ensure anonymity. The editors and reviewers have seen the detailed information available and are satisfied that the information backs up the case the authors are making.

  • Ethics approval Yorkshire & The Humber—Bradford Leeds Research Ethics Committee (ref: 16/YH/0156).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement Additional unpublished data from the study are not available.

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