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Do parents of children with cancer want to participate in treatment decision-making?

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Abstract

Purpose

This study aimed to describe parents’ preferences regarding their role in treatment decision-making when a child has cancer and examines whether their preferences were related to parents sociodemographic characteristics (sex and education level), patients’ characteristics (age group and treatment status), and healthcare context features (parents’ perception of family-centered care).

Methods

Two hundred and twenty-eight parents of children/adolescents with cancer were recruited from two Portuguese pediatric oncology wards. Participants provided sociodemographic and clinical information. The Control Preferences Scale for Pediatrics was used to assess the parents’ preferred role in treatment decision-making. The Measure of Process of Care assessed the parents’ perception of family-centered care (family-centered services and providing general information subscales).

Results

Results showed that parents preferred a passive-collaborative role (45.2%), followed by collaborative (27.2%), passive (21.0%), and active-collaborative (6.6%). None preferred an active role. Chi-square test showed that the group of parents preferring a passive role had a lower proportion of more-educated parents, compared to those preferring active-collaborative or collaborative roles. Additionally, groups did not proportionally differ according to the parents’ sex, patients’ age, and treatment status. A multivariate analysis of variance showed that parents preferring an active-collaborative role reported lower mean scores on family-centered services compared to those preferring passive-collaborative and passive roles. Finally, no significant differences were found concerning providing general information.

Conclusions

This study’s findings may guide professionals in identifying parents’ preferences regarding their participation in treatment decision-making process. Mapping their preferences may support professionals in promoting desirable levels of parental involvement in decisions in pediatric oncology context.

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Acknowledgments

We gratefully thank all of the participants who generously shared their experience as well as the healthcare professionals and personnel from the Portuguese Institutes of Oncology in both Lisbon and Porto.

Funding

This study was supported by the Portuguese Foundation for Science and Technology (PhD grant to the first author; SFRH/BD/103265/2014) and the Calouste Gulbenkian Foundation (Gulbenkian Human Development Program, PGDH).

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Authors and Affiliations

  1. CICPSI, Research Center for Psychological Science, Faculty of Psychology, University of Lisbon, Lisbon, Portugal

    Ágata Salvador, Carla Crespo, Magda Sofia Roberto & Luísa Barros

  2. Faculdade de Psicologia, Universidade de Lisboa, Alameda da Universidade, 1649-013, Lisboa, Portugal

    Ágata Salvador

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  1. Ágata Salvador
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Correspondence to Ágata Salvador.

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All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards. This article does not contain any studies with animals performed by any of the authors.

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Informed consent was obtained from all individual participants included in the study.

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The authors declare that they have no conflict of interest.

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Salvador, Á., Crespo, C., Roberto, M.S. et al. Do parents of children with cancer want to participate in treatment decision-making?. Support Care Cancer 28, 1059–1067 (2020). https://doi.org/10.1007/s00520-019-04909-8

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