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Exploring pain among young people who have completed treatment for acute lymphoblastic leukemia: experiences of youth and caregivers

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Abstract

Purpose

Acute lymphoblastic leukemia (ALL) is the most common cancer diagnosed among individuals <14 years of age. The disease and its treatments are associated with negative side effects, including pain, which is both prevalent and distressing. Little is known about pain experiences in this population, which has slowed efforts to identify strategies to mitigate and cope with this adverse effect. This study sought to explore youth’s and their caregiver’s experiences with, and perspectives of, pain in the context of pediatric cancer treatment.

Methods

Youth and one of their caregivers were recruited through (omitted for peer review). Following completion of a demographic survey, youth and one of their caregivers were interviewed separately using a semi-structured, one-on-one interview guide. Demographic information was analyzed with descriptive statistics, and interviews were transcribed verbatim and analyzed using reflexive thematic analysis.

Results

Youth (n = 19; Mage = 15.3 years) and caregiver (n = 19; Mage = 45.4 years) perspectives informed 4 themes: (1) my pain experience is nuanced, multidimensional, and is changing over time; (2) the cancer experience has changed the way I experience and respond to pain; (3) I used strategies to manage pain, and not all of them worked; and (4) my pain experience was influenced by people around me.

Conclusions

Findings extend prior work, suggesting that pain is common, distressing, multidimensional, and influenced by social context. Results highlight the number of ways in which youth and their caregivers attempt to manage their pain and factors influencing pain experiences. Greater efforts are needed to address pain during cancer treatment and survivorship.

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Data availability

Data for this research are available by request from the author.

Notes

  1. For high-income countries.

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Funding

Funding for this work was provided by the Alberta Children’s Hospital Research Institute and the Charbonneau Cancer Research Institute.

Author information

Authors and Affiliations

  1. Department of Oncology, Division of Psychosocial Oncology, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada

    Sara Cho & Fiona Schulte

  2. School of Kinesiology, University of the Fraser Valley, Fraser Valley, BC, Canada

    Amanda Wurz

  3. Department of Psychology, University of Calgary, Calgary, AB, Canada

    Brianna Henry, Andrew Tran, Jenny Duong, Melanie Noel, Alexandra Neville, Michaela Patton & Brooke Russell

  4. Alberta Children’s Hospital, Haematology, Oncology, and Transplant Program, Calgary, AB, Canada

    Jennifer Giles & Kathleen Reynolds

  5. Department of Family Medicine, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada

    Kathleen Reynolds

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Contributions

Sara Cho: data curation, formal analysis, writing—original draft, and writing—review and editing. Amanda Wurz: data curation, formal analysis, writing—original draft, and writing—review and editing. Brianna Henry: data curation, formal analysis, and writing—review and editing. Andrew Tran: data curation, formal analysis, and writing—review and editing. Jenny Duong: data curation, formal analysis, and writing—review and editing. Melanie Noel: conceptualization, methodology, data curation, formal analysis, and writing—review and editing. Alexandra Neville: data curation, formal analysis, and writing—review and editing. Michaela Patton: data curation, formal analysis, and writing—review and editing. Brooke Russel: data curation, formal analysis, and writing—review and editing. Jennifer Giles: conceptualization, data curation, writing—reviewing and editing. Kathleen Reynolds: conceptualization, data curation, and writing—reviewing and editing. Fiona Schulte: conceptualization, methodology, data curation, formal analysis, project administration, supervision, writing—original draft, and writing—review and editing.

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Correspondence to Fiona Schulte.

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Cho, S., Wurz, A., Henry, B. et al. Exploring pain among young people who have completed treatment for acute lymphoblastic leukemia: experiences of youth and caregivers. Support Care Cancer 31, 415 (2023). https://doi.org/10.1007/s00520-023-07888-z

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