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Considerations for the cross-cultural adaptation of an advance care planning guide for youth with cancer

Journal title
Clinical practice in pediatric psychology
Publication year
2018
Author(s)
de Arruda-Colli, M. N. F.; Sansom-Daly, U.; Dos Santos, M. A.; Wiener, L.
Pages
341-354
Volume
6
Number
4

Objective: Adolescent and young adults’ (AYAs) involvement in advance care planning and end-of-life discussions may enhance the decision-making process, reduce stress and improve the patient’s quality of life. Given the importance of establishing adequate communication and having culturally-appropriate tools to introduce advance care planning, our paper will describe the cross-cultural adaptation of the advance care planning guide, Voicing My CHOiCES () in Australia and in Brazil. Methods: In Brazil, the process involved initially translating the document to Portuguese followed by evaluation by a group of providers and patients (aged 18-39) undergoing cancer treatment. The document was revised based on the feedback received, then back-translated to English and discussed with Voicing My CHOiCES () ‘ authors to refine the final version in Portuguese. In Australia, a multi-perspective interview-based study was undertaken with AYA cancer patients/survivors (aged 15-25), siblings, parents, and a range of healthcare providers from the oncology setting, to determine the perceived acceptability of the tool within the Australian clinical context. Results: These interviews pointed to a variety of recommended adaptations ranging from the aesthetic and linguistic, through to the re-structuring of content within the tool. Adaptations for the Australian setting were then revised in an iterative capacity within several focus groups of AYA participants and healthcare providers. Conclusions: The processes used in both countries highlight ways to engage youth living with a life-limiting illness in conversations about advance care planning and how to develop culturally-appropriate clinical tools.

Research abstracts