Voicing My CHOiCESTM: Transcultural adaptation and validation of an advance care planning tool for Brazilian young adults with cancer

Author(s)

Marina Noronha Ferraz de Arruda Colli

• Document type: Doctoral Thesis
• Press: Ribeirão Preto.
• Institution: Universidade de São Paulo (USP). Faculdade de Filosofia, Ciências e Letras de Ribeirão Preto (PCARP/BC)
• Defense date: 2020-12-01

Examining board members

Manoel Antonio dos Santos; Érika Arantes de Oliveira Cardoso; Beatriz Schmidt; Regina Szylit

• Advisor: Manoel Antonio dos Santos

Abstract

Considering the importance of having adequate communication and culturally appropriate instruments to promote advance care planning, this study aimed to implement the cross-cultural adaptation and validation for the Brazilian context of Voicing My CHOiCESTM, a guide originally developed in the United States. The document was translated by two independent bilingual translators and the versions were analyzed for similarity in comparition with the original text. The synthesis of the translation was defined and submitted to semantic validation by a group of expert judges and young adults with cancer between 18 and 39 years. The judges critically reviewed the document and filled out a questionnaire to assess the guide\'s structure, relevance and appropriateness to the Brazilian context. In addition to critical reading the guide, young adults answered a questionnaire with socio-demographic questions, anxiety measures, previous communication experience on end-of-life care planning and the readiness assessment for such discussions. The revised version was then submitted to back-translation, performed by two other independent bilingual translators, and discussed with the authors of the instrument, with attentiveness to the content adequacy. With the final version in Portuguese defined, a pilot study was conducted to investigate the acceptability and feasibility of its use in Brazil. At this time, young adults between 18-39 years old, diagnosed with metastatic cancer, relapse or disease progression were invited to answer the questionnaire used in the first phase of the study, to critically read and fill out 3 pages of the guide. After 3-7 weeks, a follow-up interview was conducted. Quantitative data were analyzed by descriptive statistics, while qualitative data were evaluated by thematic analysis. Nine expert judges and 15 patients aged 18-39 years participated in the first phase of the study. The judges considered the document to be adequate for use with the target population and the oncological context. All sections were considered appropriate in terms of age and culture and useful for participants or other people their age by more than 80% of young adults, with the exception of the section about funeral planning. Suggestions for adaptation focused on cultural, legal, linguistic aspects and how to incorporate the instrument into the treatment trajectory. Thirty young adults participated in the second phase of the study. Participants expressed interest in filling out the pages of the guide, seeing benefits for their emotional expression and receiving care aligned with their preferences. The guide proved to be appropriate to introduce discussions on the subject with young Brazilian adults, with potential to mediate communications between patients, family members and providers. The evaluation of the readiness and timing for the introduction of the document were important for the advance care planning implementation. Limitations of this study were the predominance of high education level of the participants and the data collection restricted to a Brazilian public hospital, with most participants being from the Southeast region of the country. It is hoped that the results of this study contribute to health care in psycho-oncology and favor the inclusion of advance care planning in regular care to cancer patients. (AU)

• FAPESP's process: 16/15269-3 - Voicing my CHOiCESTM: cross-cultural adaptation and validation of an advance care planning tool for Brazilian young adults with cancer
• Grantee: Marina Noronha Ferraz de Arruda Colli
• Support Opportunities: Scholarships in Brazil - Doctorate