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Abstract
Objective: Adolescents' cancer-related distress is more complex, severe, and long-lasting than that of children and adults. Parents adopt an active role in supporting their adolescent, reporting that adolescent cancer-related distress is the most problematic symptom parents experience. Research has predominantly focused on exploring adolescents' experiences of cancer-related distress, with little attention to how their parents experience their adolescent's cancer-related distress. Therefore, we aimed to explore parents' experiences of distress within the context of parenting an adolescent with cancer-related distress during or immediately subsequent to active treatment. Methods: A total of 21 semi-structured interviews were conducted face-to-face or via telephone, with parents of adolescents aged 12–18 years from south-west England. Inductive reflexive thematic analysis was used to analyse the data. Results: Three themes were generated: “The contagion of distress”, “Navigating breaking point” and “Developmental disruption”. Parental distress transcended from adolescent cancer-related distress, eliciting uncertainty and challenging parenting limits. Parental distress was perpetuated by feelings that their adolescent had missed out on “normal” adolescence during and just after active treatment. Conclusion: Parental distress reflected the multi-faceted nature of their adolescent's cancer-related distress. Findings advocate the importance of providing a parental voice within adolescent oncology populations. Developing tailored interventions to address parental distress are suggested.
| Original language | English |
|---|---|
| Article number | e13417 |
| Journal | European Journal of Cancer Care |
| Volume | 30 |
| Issue number | 4 |
| Early online date | 29 Jan 2021 |
| DOIs | |
| Publication status | Published - 31 Jul 2021 |
Bibliographical note
Funding Information:This study was supported by University Hospitals Bristol NHS Foundation Trust and the Psychology Department at the University of Bath. A huge thank you to the parents who took the time to participate in this study and shared their experiences. We would also like to give thanks to the health and social care professionals at University Hospitals Bristol NHS Foundation Trust for supporting recruitment.
Funding Information:
Dr Loades is funded by the National Institute for Health Research (NIHR Doctoral Research Fellowship, DRF-2016-09-021). This report is independent research. The views expressed in this publication are those of the authors(s) and not necessarily those of the NHS, NIHR or the Department of Health and Social Care. This study was supported by University Hospitals Bristol NHS Foundation Trust and the Psychology Department at the University of Bath. A huge thank you to the parents who took the time to participate in this study and shared their experiences. We would also like to give thanks to the health and social care professionals at University Hospitals Bristol NHS Foundation Trust for supporting recruitment.
Publisher Copyright:
© 2021 The Authors. European Journal of Cancer Care published by John Wiley & Sons Ltd.
Keywords
- adolescent cancer
- cancer-related distress
- parental distress
ASJC Scopus subject areas
- Oncology
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Dive into the research topics of 'Parental experiences of adolescent cancer-related distress: A qualitative study'. Together they form a unique fingerprint.Projects
- 1 Finished
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Doctoral Research Fellowship: Depression in Paediatric Chronic Fatigue Syndrome (CFS/ME)
Loades, M. (PI)
National Institute for Health Research
1/10/16 → 28/02/22
Project: Central government, health and local authorities