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Decision-making in childhood cancer: parents’ and adolescents’ views and perceptions

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Abstract

Purpose

Few studies have addressed the way in which families of children with cancer make treatment decisions, and how we can meet parents’ and young peoples’ decisional involvement needs. We aimed to explore parents’ and adolescents’ views and perceptions of making medical decisions in pediatric oncology.

Methods

We conducted semi-structured interviews with 25 parents of children diagnosed with cancer in the past 12 months, and 5 adolescents diagnosed in the past 12 months. Our interview schedule was underpinned by Elwyn and Miron-Shatz’s decision-making model. The model acknowledges the deliberation (process of coming to a decision) and determination (making a choice) phases of decision-making. We conducted a thematic analysis.

Results

Our findings indicate that information provision is not enough to facilitate parents’ decision-making involvement. Many parents sought additional information to meet their individual needs and preferences. While many parents and young people desired decisional involvement, they trusted the doctors to make treatment decisions. Feelings of distress, inadequacy, and lack of choice impacted decision-making participation. Regardless, many parents in our study were satisfied with treatment decisions, but this was largely dependent on positive treatment outcomes.

Conclusion

Our study contributes to understanding how families of a child with cancer make treatment decisions. Families tend to rely on doctors to make treatment decisions, but often seek additional information to help them feel involved in the decision process. Findings highlight that decision-making in pediatric oncology should focus on involving families in the deliberation phase, rather than just determination of choice.

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Acknowledgements

We would like to thank Pirathat Techakesari for his assistance on this project.

Funding

This project is supported by the Cancer Institute NSW Translational Program Grant. Experimental therapeutics for Myc-driven childhood cancer, 10/TPG/1-13, Professor Glenn Marshall. Professor Claire Wakefield is supported by a Career Development Fellowship from the National Health and Medical Research Council of Australia (APP1143767). Dr. Joanna Fardell is supported by The Kids Cancer Project. The Behavioural Sciences Unit is supported by the Kids with Cancer Foundation, the Kids Cancer Alliance, and a Cancer Council New South Wales Program Grant PG16-02 with the support of the Estate of the Late Harry McPaul.

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Authors and Affiliations

  1. Discipline of Pediatrics, School of Women’s and Children’s Health, UNSW Sydney, Kensington, NSW, Australia

    Eden G. Robertson, Claire E. Wakefield, Brittany C. McGill, Richard J. Cohn & Joanna E. Fardell

  2. Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children’s Hospital, Randwick, NSW, Australia

    Eden G. Robertson, Claire E. Wakefield, Brittany C. McGill, Richard J. Cohn & Joanna E. Fardell

  3. Psycho-Oncology Co-operative Research Group (PoCoG), The University of Sydney, Camperdown, NSW, Australia

    Joanne Shaw

  4. Faculty of Health Sciences, University of Southampton, Southampton, United Kingdom

    Anne-Sophie Darlington

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  1. Eden G. Robertson
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Correspondence to Eden G. Robertson.

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Robertson, E.G., Wakefield, C.E., Shaw, J. et al. Decision-making in childhood cancer: parents’ and adolescents’ views and perceptions. Support Care Cancer 27, 4331–4340 (2019). https://doi.org/10.1007/s00520-019-04728-x

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