Enhancing quality of life measurement: adapting the ASCOT easy read for older adults accessing social care

• Published in: Quality of life research
• Main Authors: Caiels, James, Rand, Stacey, Mikelyte, Rasa, Webster, Lucy, Field, Elizabeth, Towers, Ann-Marie
• Format: Journal Article
• Language: English
• Published: Netherlands 26.09.2024
• Subjects: Co-production; Older adults; Social care; Easy read; Dementia; Quality of life
• ISSN: 0962-9343; 1573-2649; 1573-2649
• DOI: 10.1007/s11136-024-03791-0

This study aimed to adapt and assess the content validity of the ASCOT Easy Read (ASCOT-ER) for older people accessing social care. A co-production working group of 8 older social care users and their supporters was established to evaluate the comprehensibility and relevance of the ASCOT-ER images, wording and layout. Changes made by the working group were iteratively tested using cognitive interviewing techniques (think aloud) with 25 older social care users not able to self-complete the original ASCOT. Co-research with people with dementia and their supporters was critical to the development of an effective and accessible tool. Issues identified with comprehension, recall, judgement and response were addressed through iterative adjustments to design, layout and wording. An unexpected finding was that illustrations were disliked or disregarded by the majority of people, and, in particular, those living with dementia. This result contrasts with the typical assumption of easy read approaches, where illustrations are expected to enhance comprehension. The ASCOT-ER measure for older people is suitable for older people using social care services with mild to moderate dementia, mild cognitive impairment and other age-related needs. The revisions applied were designed to improve comprehension, judgement and response for this group and even those who were most cognitively impaired experienced fewer issues by the final round of testing. Nonetheless, some prompting was still required, particularly for those with higher levels of cognitive impairment and it is likely that some respondents will require the questionnaire to be administered in an interview format.