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Abstract
Objective The objective is to explore the experiences of children and young people (CYP) with cancer, their parents, and healthcare professionals (HCPs) involved in their care of oral mucositis.
Design A qualitative study was conducted. CYP with experience of mucositis were purposively sampled, aiming for diversity in age, sex and cancer diagnosis. HCPs were purposively sampled aiming for diversity in professional role and years of experience. Semi-structured interviews with CYP and their parents and focus groups with HCPs were conducted. Interviews were audio recorded and professionally transcribed. Anonymised transcripts underwent reflexive thematic analysis using an inductive essentialist approach. Codes were discussed and constant comparisons made to increase validity. Recruitment occurred alongside analysis until no new codes were identified.
Results 27 participants were interviewed (8 CYP, 10 parents, 9 HCPs). CYP had diverse cancer diagnoses and were aged between 8 and 15 years. HCPs had diverse professional roles across medicine, dentistry, nursing, dental nursing, and play therapy with a mean of 7.4 years of experience in their individual role. Four themes were generated: (1) mucositis as a multifaceted, negative emotive experience, (2) being taken away from ‘normality’, (3) complex biopsychosocial impact on eating and (4) management of mucositis presents additional strain. Within these themes, multiple subthemes were generated and cross-cutting challenges in maintaining oral health were identified.
Conclusion Oral mucositis presents a significant challenge to CYP, families and HCPs during cancer treatment functionally, psychologically and socially, with an adverse impact on treatment experiences. Prevention of oral mucositis is a priority to these groups within supportive cancer care.
- Child Health
- Paediatrics
- Dentistry
- Qualitative research
Data availability statement
Data are available on reasonable request.
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Data availability statement
Data are available on reasonable request.
Footnotes
X @ClaudiaHeggie, @KGrayBurrows
Contributors CH, PFD and BP contributed to conception of the study and application for grant funding and ethical approval. AC and KG-B provided expertise in qualitative methods in study design and analysis. CH and BP completed all interviews. CH completed primary analysis, management of the research and led the writing of the paper. CH is responsible for the overall content as guarantor. All authors reviewed the completed paper.
Funding This work was supported by the Royal College of Surgeons Faculty of Dental Surgery & British Society of Paediatric Dentistry Pump Priming Grant. Funding in kind was received from Candlelighters Children’s Cancer Charity (Registered Charity Number 1045077) to support patient and public involvement, recruitment of participants and use of their facilities for qualitative interviews with families. CH is a Doctoral Research Fellow (Award Number 303289) and is funded by the National Institute for Health and Care Research (NIHR). The views expressed in this publication are those of the authors and not necessarily those of the NIHR, National Health Service (NHS) or the UK Department of Health and Social Care. Two of the authors of this paper (KG-B and PD) are supported by the NIHR Applied Research Collaborations Yorkshire and Humber (NIHR ARC YH) NIHR200166 (www.arc-yh.nihr.ac.uk). The views expressed in this publication are those of the authors and not necessarily those of the NIHR, the NHS or the Department of Health and Social Care. BP is part funded by the Candlelighter’s Supportive Care Research Centre.
Provenance and peer review Not commissioned; externally peer reviewed.
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