Parents of a child or young person with disability face not only the same challenges as parents of typically developing children and young people, but also the extra challenges of supporting the child or young person with disability in such a way as to maximise both their own quality of life (QOL) and family quality of life (FQOL) for all family members. Health-related quality of life (HRQOL) encompasses not only physical health but also mental and emotional health, equally important for FQOL. This article builds on information from previous publications, and illustrates relevant issues and the innovative methods parents, caregivers, and professionals have devised to enhance the HRQOL for children and young people with disability, and to improve FQOL. The author draws upon her personal lived experiences of having two daughters, the eldest an adult with disability, as well as being the medical consultant and manager of a newly created health unit tasked with supporting students with disability, who often have high health needs, in educational settings. The health conditions selected are those that have a major impact, not only on the young person with disability but also on family members. Vignettes, all deidentified true stories, will be included to illustrate the multiple issues faced by children and young people with disability, their families and extended families, and treating clinicians. These stories will hopefully resonate with families in particular.

中文翻译：

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当儿童或年轻人有残疾时与健康有关的家庭生活质量

残疾儿童或年轻人的父母不仅面临与通常发育中的儿童和年轻人的父母相同的挑战，而且还面临着以最大程度提高自身素质的方式来支持残疾儿童或年轻人的额外挑战。所有家庭成员的生活质量（QOL）和家庭生活质量（FQOL）。与健康相关的生活质量（HRQOL）不仅包括身体健康，还包括精神和情绪健康，对FQOL同样重要。本文以先前出版物的信息为基础，并阐述了相关问题以及父母，护理人员和专业人员为增强残疾儿童和青年人的HRQOL以及改善FQOL而设计的创新方法。作者借鉴了她有两个女儿的亲身经历，年长的残疾人，也是新成立的卫生部门的医学顾问和经理，负责在教育环境中为经常有很高健康需求的残疾学生提供支持。选择的健康状况不仅对残疾青年而且对家庭成员都具有重大影响。小插图，包括所有无法确定的真实故事，将包括在内，以说明残疾儿童和年轻人，其家庭和大家庭以及治疗临床医生所面临的多个问题。这些故事有望特别引起家庭的共鸣。选择的健康状况不仅对残疾青年而且对家庭成员都具有重大影响。小插图，包括所有无法确定的真实故事，将包括在内，以说明残疾儿童和年轻人，其家庭和大家庭以及治疗临床医生所面临的多个问题。这些故事有望特别引起家庭的共鸣。选择的健康状况不仅对残疾青年而且对家庭成员都具有重大影响。小插图，包括所有无法确定的真实故事，将包括在内，以说明残疾儿童和年轻人，其家庭和大家庭以及治疗临床医生所面临的多个问题。这些故事有望特别引起家庭的共鸣。