适应 10-18 岁青少年的葡萄牙尊严问题框架。

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

机构信息

Equipa Comunitária de Suporte em Cuidados Paliativos de Sintra, Lisboa, Portugal.

Centro de Estudos e Investigação em Saúde da Universidade de Coimbra (CEISUC), Coimbra, Portugal.

出版信息

Palliat Support Care. 2020 Apr;18(2):199-205. doi: 10.1017/S1478951519000798.

DOI:10.1017/S1478951519000798

PMID:31559945

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.

摘要

目的

尊严疗法（DT）在成人中得到了很好的应用，并且可能对年轻人也有益。本研究旨在将成人葡萄牙语 DT 问卷框架（DT-QF-Adol）（10-18 岁）改编为青少年版。

方法

遵循五个阶段：（1）与原始作者合作改编成青少年的葡萄牙语 DT-QF，（2）专家委员会对改编版本提供反馈，（3）创建 DT-QF-Adol 的初步共识版本，（4）专家委员会咨询确认最终共识，（5）在门诊心理诊所对 17 名青少年进行验证阶段。

结果

DT 的原始作者认可了最终的葡萄牙语 DT-QF-Adol，强化了它捕捉了 DT 的基本维度。最终共识版本和定义的年龄组（10-18 岁）得到了 100%的同意。邀请了 20 名青少年参加，在获得知情同意后，有 17 名青少年参加；其中 53%为女性。平均年龄为 12.7 岁。接受采访的青少年表示，DT-QF-Adol 很清晰，他们在回答任何问题时都没有发现任何模糊或困难。他们认为这些信息可以积极影响父母和朋友看待和照顾他们的方式，允许他人理解他们的关注和偏好。参与者认为，DT-QF-Adol 可以成为与亲人交谈的良好起点。尽管他们认为健康专业人员获取他们的答案并不重要，但他们强烈认为 DT-QF-Adol 对患病青少年来说可能至关重要，他们会向其他人推荐。