“It’s like being chained up”: the oral mucositis experiences of children and young people with cancer, their parents, and healthcare professionals– a qualitative study

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.