Co‐Designing an Easy‐Read Adult Social Care Outcomes Measure for Older People: Approach to and Reflections on Involving People Living With Dementia and Their Supporters.

Background: In the UK, over half a million older people rely on publicly funded social care services to support their daily living needs. It is crucial to measure the quality of these services to ensure they meet the needs of those they support. The Adult Social Care Outcomes Toolkit (ASCOT) was dev...

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Publicado en:Health Expectations Vol. 29; no. 3; pp. 1 - 12
Autores principales: Mikelyte, Rasa, Oliver, Keith, Oliver, Rosemary, Caiels, James, Rand, Stacey, Field, Elizabeth, Webster, Lucy, Towers, Ann‐Marie
Formato: pictorial questionnaire/scale research tables/charts Journal Article
Publicado: Wiley-Blackwell Jun2026
Acceso en línea:Ver este registro en EBSCOhost
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        atl: Co‐Designing an Easy‐Read Adult Social Care Outcomes Measure for Older People: Approach to and Reflections on Involving People Living With Dementia and Their Supporters.
      aug:
        au:
          Mikelyte, Rasa
          Oliver, Keith
          Oliver, Rosemary
          Caiels, James
          Rand, Stacey
          Field, Elizabeth
          Webster, Lucy
          Towers, Ann‐Marie
        affil: Centre for Health Services Studies, University of Kent, Canterbury,, UK
      sug:
        subj:
          Dementia Psychosocial Factors
          Caregivers Psychosocial Factors
          Outcome Assessment
          Quality of Life Evaluation
          Social Work Service In Old Age
          Support, Social
          Dementia Patients Psychosocial Factors
          Reflection
          Collaboration
          Instrument Construction
          Questionnaires
          Health Services Accessibility
          Readability Evaluation
          Human
          Aged
          Quality of Health Care
          Health Care Delivery
          Patient Participation
          Cognition
          Activities of Daily Living
          Self Report
          Communication
          Patient Centered Care
          United Kingdom
          Interviews
          Empowerment
          Funding Source
          Aged: 65+ years
      ab: Background: In the UK, over half a million older people rely on publicly funded social care services to support their daily living needs. It is crucial to measure the quality of these services to ensure they meet the needs of those they support. The Adult Social Care Outcomes Toolkit (ASCOT) was developed to assess social care‐related quality of life (SCRQoL; Netten et al., 2012). However, many older individuals, particularly those living with dementia, face difficulties completing standard questionnaires (Aznar et al., 2021). Aim: This project aimed to enhance the accessibility of the ASCOT toolkit for older people, enabling more people to self‐report their experiences of social care. Methods: We employed a co‐design methodology, bringing together a working group of older adults, primarily those living with dementia, along with their carers/supporters, to adapt the ASCOT toolkit. The adaptation process involved six working group meetings. In between these meetings, three rounds of cognitive testing (Meadows, 2021) with 25 participants who had difficulties completing traditional questionnaires also took place, with findings brought back to the working group after each round, so they could further refine the toolkit in light of cognitive testing results. Results: The final adapted version of the ASCOT toolkit differs significantly from the original. The cognitive testing results demonstrate a considerable reduction in challenges experienced by participants between testing rounds, indicating a more accessible and user‐friendly tool. Implications: The findings from this project demonstrate that co‐designing outcome measures with older people, particularly those living with dementia, is both feasible and impactful. This work offers a replicable model for creating inclusive, accessible tools that amplify the voices of service users. Patient and Public Involvement: 8 older people, including those living with dementia, have co‐designed the new version of the tool over 6 meetings. Further meetings took place to jointly design dissemination materials. Working group members have co‐presented project findings at conferences and events, and two members have co‐authored this article. PPI were involved from the funding acquisition stage of this project. Two PPI members who were not part of the working group were part of the project steering group.
      pubtype: Academic Journal
      doctype:
        pictorial
        questionnaire/scale
        research
        tables/charts
        Journal Article
      ougenre: Article
    language: English
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