Participation of adolescents with and without physical disabilities and chronic diseases: A comprehensive conceptualization

IF 1.8 4区医学 Q2 PEDIATRICS

Child Care Health and Development Pub Date : 2024-03-01 DOI:10.1111/cch.13240

Marie Bernard, Laura Hoffmann, Matthias Richter, Carina Völlm, Astrid Fink, Britta Dawal

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引用次数: 0

Abstract

Background

In 2001, the International Classification of Functioning and Disability (ICF) introduced participation as a main goal of rehabilitation processes. However, to date, a comprehensive concept of participation in the rehabilitative context is missing, particularly in German-speaking countries. We thus aimed to refine and extend the existing concepts of participation in this brief communication.

Methods

In preceding studies, we conducted semi-structured interviews with adolescents who either had chronic diseases and/or physical disabilities or had no impairments and focus groups with parents and experts. Based on these diverse perspectives and findings, we refine the term participation.

Results

Participation is a construct that is embedded in a social context and consists of objective (i.e., attendance) and subjective (i.e., satisfaction and involvement) dimensions. These dimensions are reflected in different domains and areas that are relevant to adolescents' lives. In addition, the subjective relevance of respective areas in life needs to be regarded as a weighing component when evaluating participation.

Conclusion

Our results reflect international models on participation, refine the existing concept, and underline the multidimensional character of participation. These findings are urgently needed to develop appropriate instruments, for example, for assessing whether rehabilitative processes are effective regarding the goal of participation.

Abstract Image

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有身体残疾和慢性疾病的青少年与无身体残疾和慢性疾病的青少年的参与：综合概念。

背景：2001 年，《国际功能与残疾分类》（ICF）将参与作为康复过程的主要目标。然而，迄今为止，在康复领域还缺少一个全面的参与概念，尤其是在德语国家。因此，我们希望在这篇简短的文章中完善和扩展现有的参与概念：在之前的研究中，我们对患有慢性疾病和/或身体残疾或没有任何缺陷的青少年进行了半结构化访谈，并与家长和专家进行了焦点小组讨论。基于这些不同的观点和研究结果，我们对 "参与 "一词进行了完善：结果：参与是一个包含在社会环境中的概念，由客观（即出勤率）和主观（即满意度和参与度）两个方面组成。这些维度反映在与青少年生活相关的不同领域和方面。此外，在评估参与度时，还需将各生活领域的主观相关性作为权衡因素：我们的研究结果反映了有关参与的国际模式，完善了现有概念，并强调了参与的多维性。我们迫切需要这些研究结果来开发适当的工具，例如，用于评估康复过程在实现参与目标方面是否有效。

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来源期刊

Child Care Health and Development 医学-小儿科

CiteScore

3.40

自引率

5.30%

发文量

136

审稿时长

4-8 weeks

期刊介绍： Child: care, health and development is an international, peer-reviewed journal which publishes papers dealing with all aspects of the health and development of children and young people. We aim to attract quantitative and qualitative research papers relevant to people from all disciplines working in child health. We welcome studies which examine the effects of social and environmental factors on health and development as well as those dealing with clinical issues, the organization of services and health policy. We particularly encourage the submission of studies related to those who are disadvantaged by physical, developmental, emotional and social problems. The journal also aims to collate important research findings and to provide a forum for discussion of global child health issues.