Examining the Cultural Appropriateness of Advance Care Planning Tools for Adolescents and Young Adults With Cancer: An Example of Cross-Cultural Adaptation of the Voicing My CHOiCES Tool

Authors

Holly E. Evans, Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospital, Randwick, New South Wales, Australia; School of Clinical Medicine, UNSW Medicine and Health, Randwick Clinical Campus, Discipline of Paediatrics, UNSW Sydney, Kensington, New South Wales, Australia. Electronic address: holly.evans@unsw.edu.au.
Sophie Jessop, Michael Rice Department of Haematology/Oncology, Women's and Children's Hospital, Adelaide, Australia.
Sima Z. Bedoya, Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, MD.
Maureen E. Lyon, Center for Translational Research/Children's Research Institute, Children's National Hospital, Washington, DC; Department of Pediatrics, George Washington University School of Medicine and Health Sciences, Washington, DC.
Lori Wiener, Department of Pediatrics, George Washington University School of Medicine and Health Sciences, Washington, DC.
Ursula M. Sansom-Daly, Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospital, Randwick, New South Wales, Australia; School of Clinical Medicine, UNSW Medicine and Health, Randwick Clinical Campus, Discipline of Paediatrics, UNSW Sydney, Kensington, New South Wales, Australia; Sydney Youth Cancer Service, Prince of Wales/Sydney Children's Hospital, Randwick, New South Wales, Australia.

Document Type

Journal Article

Publication Date

9-11-2023

Journal

Current problems in cancer

DOI

10.1016/j.currproblcancer.2023.101010

Keywords

Adolescents and young adults; Advance care planning; Cancer; Communication; End of life; Palliative care

Abstract

Advance care planning (ACP) is crucial in supporting optimal, patient-centered care for adolescents and young adults (AYAs) with life-limiting illnesses and can reduce unwanted outcomes at end-of-life. While several ACP tools and interventions have been designed for AYAs, most of these were developed in the United States of America (USA). This paper describes a study designed to adapt the AYA ACP tool, Voicing My CHOiCES (VMC), for the Australian population. A 2-stage mixed methods approach was used. Stage 1 involved a multiperspective interview to determine changes for the new Australian VMC. Participants were AYAs between the ages of 15 to 25, healthcare professionals, and parents. For each section, participants responded to questions targeting the helpfulness and usefulness of the items as well as open-ended questions about any suggested content or formatting changes. Stage 2 used think-aloud interviews asking AYA cancer patients and survivors aged between 15 and 39 years to respond to proposed changes for the Australian VMC. Stage 1 participants suggested changes to all pages of VMC, with proposed changes being based around language, content, and format. Stage 2 participants qualitatively confirmed the acceptability of these changes. Our data suggests that even between similar Western cultures, significant adaptations can be made to make ACP tools more culturally appropriate. More research is needed to further adapt ACP tools like VMC for culturally and linguistically diverse groups and to ensure these tools can be accessed by all AYAs with life-limiting illness.

APA Citation

Evans, Holly E.; Jessop, Sophie; Bedoya, Sima Z.; Lyon, Maureen E.; Wiener, Lori; and Sansom-Daly, Ursula M., "Examining the Cultural Appropriateness of Advance Care Planning Tools for Adolescents and Young Adults With Cancer: An Example of Cross-Cultural Adaptation of the Voicing My CHOiCES Tool" (2023). GW Authored Works. Paper 3425.
https://hsrc.himmelfarb.gwu.edu/gwhpubs/3425

Department

Pediatrics