School of Health and Society, Faculty of Arts, Social Sciences and Humanities and Australian Health Services Research Institute, University of Wollongong, Wollongong, New South Wales, Australia.
Australian Health Services Research Institute, University of Wollongong, Wollongong, New South Wales, Australia.
Health Expect. 2022 Aug;25(4):1453-1463. doi: 10.1111/hex.13484. Epub 2022 Apr 19.
It is important to involve older people in evaluating public programmes that affect their lives. This includes those with physical and cognitive impairments (such as dementia) who may need support to live at home. Many countries have implemented new approaches to support older people to live well at home for longer. However, it can be challenging to involve disabled people in service evaluation, so we are unclear whether services are meeting their needs.
This study explored how a cascading methodology, offering different supports enabled the involvement of home care users with cognitive and physical impairments in the assessment of their care-related quality of life.
We used multiple tools from the Adult Social Care Outcomes Toolkit (ASCOT) with n = 63 older adults who were recipients of home care in the Illawarra. We also offered different physical and cognitive supports as needed.
We started with the standard ASCOT questionnaire to assess the care-related quality of life, but then offered alternative formats (including Easy Read) and supports (including physical and cognitive assistance) if the older person needed them to participate. This allowed us to involve a greater diversity of older people in the evaluation, and changed what we found out about whether their care needs were being met.
There is a need to implement more flexible and inclusive methods to increase the involvement of vulnerable users of long-term care in the assessment of service outcomes. This is important to ensure that the perspectives of all service users inform the delivery of person-centred care. It is also critical to understand the extent to which programmes are meeting the needs of vulnerable service users.
Service users with dementia were involved in the design of the 'Easy Read' questionnaire used in the study.
让老年人参与评估影响他们生活的公共计划非常重要。这包括那些有身体和认知障碍（如痴呆症）的人，他们可能需要支持才能在家中生活。许多国家已经实施了新的方法来支持老年人更长时间地在家中过上好日子。然而，让残疾人参与服务评估可能具有挑战性，因此我们不清楚服务是否满足他们的需求。
本研究探讨了级联方法如何通过提供不同的支持，使患有认知和身体障碍的家庭护理用户能够参与评估他们的护理相关生活质量。
我们使用了来自成人社会护理结果工具包（ASCOT）的多种工具，共纳入了 63 名在伊拉瓦拉接受家庭护理的老年成年人。我们还根据需要提供了不同的身体和认知支持。
我们首先使用标准的 ASCOT 问卷来评估护理相关的生活质量，但如果老年人需要参与，我们会提供替代格式（包括易读版）和支持。这使我们能够让更多样化的老年人参与评估，并改变了我们对他们的护理需求是否得到满足的发现。
需要实施更加灵活和包容的方法，以增加长期护理弱势使用者在服务结果评估中的参与度。这对于确保所有服务使用者的观点都能为以患者为中心的护理提供信息至关重要。了解方案在多大程度上满足弱势服务使用者的需求也至关重要。
痴呆症患者参与了研究中使用的“易读版”问卷的设计。
