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发育障碍:儿童和青少年时期的家庭与功能

Developmental Disability: Families and Functioning in Child and Adolescence.

作者信息

Rosenbaum Peter

机构信息

CanChild Centre, Department of Pediatrics, McMaster University, Hamilton, ON, Canada.

出版信息

Front Rehabil Sci. 2021 Aug 23;2:709984. doi: 10.3389/fresc.2021.709984. eCollection 2021.

Abstract

The WHO's International Classification of Functioning, Disability and Health (ICF) provides an integrated framework for health for everyone. Several aspects of this approach to health allow us to see people's lives in a richer and more holistic manner than has traditionally been the case based on diagnosis alone. These features include the positive language (emphasizing in particular "activity," "participation," and "personal factors"); the interconnections of the parts of this "dynamic system," in which every component can influence every other one; and the formal inclusion of "contextual factors"-personal and environmental-that are otherwise too easy to take for granted and then ignore. This paper addresses the "environmental" dimension of the ICF framework-specifically referring to "family" as the central environmental force in the lives of children and adolescents. The perspectives of the author are those of a developmental pediatrician, whose career has focused on children with conditions that challenge their development, and their families. Lessons learned from a lifetime of work-including teaching and research as well as clinical services-are offered. Particular emphases will be on (i) the importance of focusing on the family in a non-judgmental "family-centered" way; (ii) how conceptual ideas about child (and family) development and parenting are as important as technical approaches to intervention; and (iii) how the ICF framework "allows"-indeed encourages-such a focus to have value and importance equal to the best of biomedical interventions. Examples from current research will illustrate how these ideas can be implemented.

摘要

世界卫生组织的《国际功能、残疾和健康分类》(ICF)为每个人提供了一个综合的健康框架。这种健康方法的几个方面使我们能够以比以往仅基于诊断的传统方式更丰富、更全面的方式看待人们的生活。这些特点包括积极的语言(特别强调“活动”、“参与”和“个人因素”);这个“动态系统”各部分之间的相互联系,其中每个组成部分都可以影响其他部分;以及正式纳入“背景因素”——个人和环境因素,否则这些因素太容易被视为理所当然然后被忽视。本文探讨了ICF框架的“环境”维度——具体指“家庭”作为儿童和青少年生活中的核心环境力量。作者的观点来自一位发育儿科医生,其职业生涯专注于患有影响其发育疾病的儿童及其家庭。文中提供了从一生的工作(包括教学、研究以及临床服务)中吸取的经验教训。特别强调的将是:(i)以非评判性的“以家庭为中心”方式关注家庭的重要性;(ii)关于儿童(和家庭)发展及养育子女的概念性想法与干预的技术方法同样重要;(iii)ICF框架如何“允许”——实际上是鼓励——这种关注具有与最佳生物医学干预同等的价值和重要性。当前研究的示例将说明这些想法如何得以实施。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/68e0/9397754/fd021bda6adb/fresc-02-709984-g0001.jpg

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