Morgan, Jessica E, Phillips, Bob orcid.org/0000-0002-4938-9673, Stewart, Lesley A orcid.org/0000-0003-0287-4724 et al. (1 more author) (2018) 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. BMJ Open. e020324. ISSN 2044-6055
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.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © 2018. Article author(s) |
Keywords: | Journal Article |
Dates: |
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Institution: | The University of York |
Academic Units: | The University of York > Faculty of Sciences (York) > Hull York Medical School (York) The University of York > Faculty of Social Sciences (York) > Centre for Reviews and Dissemination (York) The University of York > Faculty of Sciences (York) > Health Sciences (York) |
Depositing User: | Pure (York) |
Date Deposited: | 22 May 2018 10:10 |
Last Modified: | 21 Jan 2025 17:33 |
Published Version: | https://doi.org/10.1136/bmjopen-2017-020324 |
Status: | Published |
Refereed: | Yes |
Identification Number: | 10.1136/bmjopen-2017-020324 |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:131181 |