Development of an item pool for a patient reported outcome measure of resilience for people living with dementia

Jennifer Rhiannon Roberts; Catherine Anne MacLeod; Zoe Hoare; Mary Pat Sullivan; Emilie Brotherhood; Joshua Stott; Gill Windle

doi:10.1186/s41687-023-00638-z

Development of an item pool for a patient reported outcome measure of resilience for people living with dementia

J Patient Rep Outcomes. 2023 Sep 27;7(1):96. doi: 10.1186/s41687-023-00638-z.

Authors

Jennifer Rhiannon Roberts¹, Catherine Anne MacLeod², Zoe Hoare², Mary Pat Sullivan³, Emilie Brotherhood⁴, Joshua Stott⁵, Gill Windle²

Affiliations

¹ School of Medical and Health Sciences, Bangor University, Bangor, UK. j.roberts@bangor.ac.uk.
² School of Medical and Health Sciences, Bangor University, Bangor, UK.
³ Faculty of Education and Professional Studies, School of Social Work, Nipissing University, North Bay, ON, Canada.
⁴ Dementia Research Centre, Queen Square Institute of Neurology, University College London (UCL), London, UK.
⁵ Department of Clinical, Educational and Health Psychology, University College London (UCL), London, UK.

Abstract

Background and objectives: Policies to support people living with dementia increasingly focus on strengths-based approaches, highlighting the importance of building resilience. This research responds to the lack of a suitable resilience measure for people with dementia. It develops a pool of items to inform a new measure of resilience for this population.

Methods: A conceptual model and associated data informed the item generation of the draft resilience measure. Regular meetings with professionals (n = 7) discussed response-scale formatting, content and face validity, leading to refinement and item reduction. Cognitive interviews with people living with dementia (n = 11) then examined the face and content validity of items and the suitability of response-scale formatting. These two phases informed subsequent revision and further item reduction of the resilience measure.

Results: The first item generation exercise led to 140 items. These were independently assessed by the professionals and this refinement reduced the measure to 63 items across 7 domains of the conceptual model (psychological strengths; practical approaches for adapting to life with dementia; continuing with hobbies, interests and activities; strong relationships with family and friends; peer support and education; participating in community activities; the role of professional support services). Cognitive interviews explored the 63 items with people living with dementia. Detailed feedback led to items removed due to difficulty with (a) understanding (N = 7); (b) answering (n = 11); (c) low preference for that item (n = 6); and (d) presence of a preferred item within a cluster of similar questions (n = 4). Items were amended to enhance clarity/conciseness (n = 19) leading to a final 37-item pool.

Conclusion: Established methods for measurement development included the expertise of people with dementia and led to the generation of a set of items for a new resilience measure that were understandable and acceptable to this target population. This 37-item pool reflects the conceptual understanding of resilience in dementia as being derived across individual, community and societal level resources.

Keywords: Dementia; Measure; Resilience; Strengths-based.

MeSH terms

Dementia* / psychology
Humans
Patient Reported Outcome Measures*
Quality of Life / psychology
Reproducibility of Results

Grants and funding

ES/S010467/1/Economic and Social Research Council