Deakin Health Economics, Institute for Health Transformation, School of Health and Social Development, Deakin University, Geelong, VIC, Australia.
Quality and Patient Safety, Institute for Health Transformation, School of Nursing and Midwifery, Deakin University, Geelong, VIC, Australia.
Qual Life Res. 2023 Nov;32(11):3109-3121. doi: 10.1007/s11136-023-03459-1. Epub 2023 Jun 25.
Identify aspects of quality of life (QoL) important to Australian informal carers and explore how well the Adult Social Care Outcomes Toolkit for Carers, Care-related Quality of Life instrument and Carer Experience Scale capture these aspects in the Australian context.
Online questionnaires were completed by Australian informal carers. Socio-demographics, open-ended questions: positive/negative aspects of caring and QoL aspects missing from the instruments, and ranking of the instrument domains was used to explore the content of the instruments. Instruments were scored using preference-weighted value sets (reported in another paper). Content analysis was used to analyse the open-ended responses. Chi-squared test looked at differences in domain importance. Descriptive analyses summarised all other information.
Eight themes were identified: Behaviour-mood of the care recipient, Caring responsibilities, Finances, Health, Own life, Perception of carers, Relationship with care recipient and Support. Many aspects of carer QoL mentioned as missing in the instruments appeared covered by the domains, of which all were reported as important. The highest ranked domain was relationship with the care recipient. The influence of the care recipient specific support, behaviour/mood and health on carer QoL appear absent in all instruments.
The content of the three instruments appears relevant in an Australian setting. The influence of care recipient's health and well-being on carer QoL should be considered, along with spillover effects. A content and/or face validity analysis is required to confirm differences in item interpretation in Australian informal carers.
确定对澳大利亚非专业照护者而言重要的生活质量（QoL）方面，并探讨成人社会护理成果工具包（Care-related Quality of Life instrument）和照护者体验量表（Carer Experience Scale）在澳大利亚背景下对这些方面的捕捉程度。
澳大利亚非专业照护者在线完成调查问卷。使用社会人口统计学资料、开放式问题（照护的积极/消极方面以及工具中缺失的 QoL 方面）以及对工具领域的排名，来探索工具的内容。使用偏好加权值集（在另一篇论文中报告）对工具进行评分。使用内容分析法对开放式回答进行分析。卡方检验用于分析各领域的重要性差异。描述性分析总结了所有其他信息。
确定了 8 个主题：照护对象的行为/情绪、照护责任、财务状况、健康、自身生活、照护者的认知、与照护对象的关系以及支持。提到工具中缺失的许多照护者 QoL 方面似乎涵盖在各领域中，且所有方面都被报告为重要的。排名最高的领域是与照护对象的关系。照护对象特定支持、行为/情绪和健康对照护者 QoL 的影响在所有工具中似乎都不存在。
这三种工具的内容在澳大利亚环境中似乎具有相关性。应考虑照护对象的健康和福祉对照护者 QoL 的影响，以及外溢效应。需要进行内容和/或表面有效性分析，以确认澳大利亚非专业照护者对项目解释的差异。
