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Adapting the Portuguese dignity question framework for adolescents: ages 10–18

Published online by Cambridge University Press:  27 September 2019

Miguel Julião Open the ORCID record for Miguel Julião [Opens in a new window] ,
Bárbara Antunes Open the ORCID record for Bárbara Antunes [Opens in a new window] ,
Ana Santos ,
Maria Ana Sobral ,
Sara Albuquerque ,
Filipa Fareleira Open the ORCID record for Filipa Fareleira [Opens in a new window] ,
Daniela Runa ,
Paulo Faria de Sousa ,
Petra Chaves  and
Célia Gonçalves
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Miguel Julião*
Affiliation:
Equipa Comunitária de Suporte em Cuidados Paliativos de Sintra, Lisboa, Portugal
Bárbara Antunes
Affiliation:
Centro de Estudos e Investigação em Saúde da Universidade de Coimbra (CEISUC), Coimbra, Portugal Faculty of Medicine, University of Porto, Porto, Portugal Center for Health Technology and Services Research (CINTESIS), Porto, Portugal Department of Midwifery and Palliative Care, Florence Nightingale School of Nursing, King's College London, London, UK
Ana Santos
Affiliation:
PIN – Progresso Infantil, Lisboa, Portugal
Maria Ana Sobral
Affiliation:
Equipa Comunitária de Suporte em Cuidados Paliativos de Sintra, Lisboa, Portugal
Sara Albuquerque
Affiliation:
PIN – Progresso Infantil, Lisboa, Portugal
Filipa Fareleira
Affiliation:
Faculty of Medicine, University of Porto, Porto, Portugal Center for Health Technology and Services Research (CINTESIS – Health for All Research Group), Porto, Portugal
Daniela Runa
Affiliation:
Equipa Comunitária de Suporte em Cuidados Paliativos de Sintra, Lisboa, Portugal
Paulo Faria de Sousa
Affiliation:
Equipa Comunitária de Suporte em Cuidados Paliativos de Sintra, Lisboa, Portugal
Petra Chaves
Affiliation:
Equipa Comunitária de Suporte em Cuidados Paliativos de Sintra, Lisboa, Portugal
Célia Gonçalves
Affiliation:
Equipa Comunitária de Suporte em Cuidados Paliativos de Sintra, Lisboa, Portugal
Duarte Soares
Affiliation:
Departamento de Cuidados Paliativos da Unidade Local de Saúde do Nordeste, Bragança, Portugal
Harvey Max Chochinov
Affiliation:
Department of Psychiatry, Research Institute of Oncology and Hematology, Cancer Care Manitoba, Manitoba, Canada
*
Author for correspondence: Miguel Julião, Equipa Comunitária de Suporte em Cuidados Paliativos de Sintra, Portugal. E-mail: migueljuliao@gmail.com
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Abstract

Objective

Dignity therapy (DT) is well established in adult populations, and it is likely that it could benefit younger people. This study aimed to adapt the adult Portuguese DT question framework for adolescents (DT-QF-Adol) (ages 10–18).

Method

Five stages were followed: (1) the Portuguese DT-QF for adults was adapted for adolescents with the original author's collaboration, (2) an expert committee provided feedback on the adapted version, (3) an initial consensus version of the DT-QF-Adol was created, (4) expert committee consult affirmed final consensus, and (5) validation stage with a sample of 17 adolescents followed in ambulatory psychology clinic.

Results

DT's original author endorsed the final Portuguese DT-QF-Adol, reinforcing that it captures the fundamental dimensions of DT. There was 100% agreement on the final consensus version and defined age group (10–18 years old). Twenty adolescents were invited to participate, and 17 were included after informed consent was obtained; 53% were female. The average age was 12.7 years. The interviewed adolescents reported that the DT-QF-Adol was clear, and they did not identify any ambiguity or difficulty in answering any of the questions. They assumed that this information could positively affect the way parents and friends see and cared for them, permitting others to understand their concerns and preferences. Participants felt that the DT-QF-Adol could be a good starting point for a conversation with their loved ones. Although they did not consider vital for health professionals to access their answers, they strongly felt that the DT-QF-Adol might be essential to sick adolescents and they would recommend it to others.

Significance of results

We developed a DT-QF of nine questions for Portuguese adolescents (DT-QF-Adol), coined Protocolo de Perguntas da Terapia da Dignidade para Adolescentes — 10–18 anos. This tool can potentially be considered a good addition for pediatric palliative care.

Keywords

AdolescentsDignity therapyDignity Therapy Question FrameworkPediatric palliative carePortuguese adaptation and validation
Type
Original Article
Information
Palliative & Supportive Care , Volume 18 , Issue 2 , April 2020 , pp. 199 - 205
Copyright
Copyright © Cambridge University Press 2019

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References

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