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Quest for certainty regarding early discharge in paediatric low-risk febrile neutropenia: a multicentre qualitative focus group discussion study involving patients, parents and healthcare professionals in the UK
  1. Jessica E Morgan1,
  2. Bob Phillips1,2,
  3. Lesley A Stewart1,
  4. Karl Atkin3
  1. 1 Centre for Reviews and Dissemination, University of York, York, UK
  2. 2 Department of Paediatric Haematology and Oncology, Leeds Teaching Hospitals NHS Trust, Leeds, UK
  3. 3 Department of Health Sciences, University of York, York, UK
  1. Correspondence to Dr Jessica E Morgan; jess.morgan{at}york.ac.uk

Abstract

Objectives A systematic review of paediatric low-risk febrile neutropenia found that outpatient care is safe, with low rates of treatment failure. However, this review, and a subsequent meta-ethnography, suggested that early discharge of these patients may not be acceptable to key stakeholders. This study aimed to explore experiences and perceptions of patients, parents and healthcare professionals involved in paediatric febrile neutropenia care in the UK.

Setting Three different centres within the UK, purposively selected from a national survey on the basis of differences in their service structure and febrile neutropenia management.

Participants Thirty-two participants were included in eight focus group discussions.

Primary outcomes Experiences and perceptions of paediatric febrile neutropenia care, including possible future reductions in therapy.

Results Participants described a quest for certainty, in which they attempted to balance the uncertainty involved in understanding, expressing and negotiating risk with the illusion of certainty provided by strict protocols. Participants assessed risk using both formal and informal stratification tools, overlaid with emotional reactions to risk and experiences of risk within other situations. The benefits of certainty provided by protocols were counterbalanced by frustration at their strict constraints. The perceived benefits and harms of previous inpatient care informed participants’ appraisals of future treatment strategies.

Conclusions This study highlighted the previously underestimated harms of admission for febrile neutropenia and the paternalistic nature of decision making, along with the frustrations and challenges for all parties involved in febrile neutropenia care. It demonstrates how the same statistics, generated by systematic reviews, can be used by key stakeholders to interpret risk differently, and how families in particular can view the harms of therapeutic options as different from the outcomes used within the literature. It justifies a reassessment of current treatment strategies for these children and further exploration of the potential to introduce shared decision making.

  • febrile neutropenia
  • focus group
  • early discharge
  • certainty

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 JEM designed the study, approached and liaised with centres, moderated focus groups, analysed the data and wrote the first draft of the manuscript. BP, LAS and KA provided substantial critical input into the design, performance and analysis of the study throughout the work and also critically revised the manuscript. All authors have given approval for the final version to be published.

  • Funding JEM was funded by Candlelighters Children’s Cancer Charity for the duration of her PhD fellowship, of which this study forms a part.

  • Competing interests None declared.

  • Patient consent Obtained.

  • Ethics approval NHS Research Ethics Committee (ref 15/YH0208).

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

  • Data sharing statement Given the nature of qualitative research, no additional unpublished data are available from this study.

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