Marcella Niehoff School of Nursing, Loyola University Chicago, United States of America.
Department of Nursing Research, Children's Hospital of Wisconsin and Self-Management Science Center, College of Nursing, University of Wisconsin-Milwaukee, United States of America.
J Pediatr Nurs. 2019 Nov-Dec;49:10-17. doi: 10.1016/j.pedn.2019.08.004. Epub 2019 Aug 14.
The measurement of Quality of life (QOL) in adolescents and especially in adolescents with disabilities is limited, often by an assessment of function rather than perception. This analysis explores QOL in adolescents and young adults (AYA) with and without Spina Bifida (SB) from the perspective of AYA and their parents.
A descriptive study using content analysis was conducted as a component of a larger multi-site mixed-method study of secondary conditions and adaptation. Participants responded to a single open-ended question on the meaning of quality of life.
Descriptive accounts from 209 families generated the following shared categories: an engaged family, a positive life, the goal of independence, being healthy, essential needs for living, having friends, relying on faith, and romantic relationships. A unique category emerged from parents, doing what AYA wants to do.
Family was the most frequently nominated component of QOL. The centrality of family in QOL is an important finding generally not assessed in measures of QOL or even less in health-related QOL instruments.
Findings illustrate the importance of evaluating overall QOL from the perspective of AYA and their parents.
生活质量（QOL）的测量在青少年中，特别是在残疾青少年中受到限制，通常是通过对功能的评估而不是对感知的评估。本分析从青少年及其父母的角度探讨了伴有和不伴有脊柱裂（SB）的青少年和年轻人（AYA）的生活质量。
这是一项描述性研究，使用内容分析法作为多地点混合方法研究二次条件和适应的一部分。参与者对生活质量的含义回答了一个单一的开放式问题。
209 个家庭的描述性描述产生了以下共同类别：一个参与的家庭、积极的生活、独立的目标、健康、生活的基本需求、有朋友、依靠信仰和浪漫关系。父母提出了一个独特的类别，即做 AYA 想做的事。
家庭是生活质量中最常被提名的组成部分。家庭在生活质量中的核心地位是一个重要的发现，通常在生活质量评估中甚至在健康相关生活质量工具中都没有评估。
研究结果说明了从青少年及其父母的角度评估整体生活质量的重要性。
