A Cohesive Research Approach to Assess Care-Related Quality of Life: Lessons Learned From Adapting an Easy Read Survey With Older Service Users With Cognitive Impairment

New or adapted methods and tools are needed to ensure the voices of older people with cognitive impairment and dementia are included in evaluations of care services which aim to support their quality of life (QoL). In this study, cognitive interviewing practices were used with a group of 26 older service users with cognitive impairment from two service providers in New South Wales, Australia, to test and modify the Adult Social Care Outcomes Toolkit Easy Read (ER) survey to improve its suitability for this cohort. We used Antonovsky’s “sense of coherence” framework to describe our research approach and how it was adapted to provide a manageable, meaningful, and comprehensible experience for our participants. While the modified ER format made the survey more comprehensible and meaningful, it was the techniques of cognitive interviewing that made the research approach manageable. We argue that while ER does support the research process for older service users with cognitive impairment, combining ER pictorials with the qualitative interactions with the researcher, in particular cognitive interviewing strategies, is needed to support a cohesive approach to assess care-related QoL in this vulnerable group