Supporting the involvement of older adults with complex needs in evaluation of outcomes in long-term care at home programmes.

Abstract

BackgroundIt 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.AimThis 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.MethodWe 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.ResultsWe 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.ConclusionThere 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.Patient or Public ContributionService users with dementia were involved in the design of the ‘Easy Read’ questionnaire used in the study.