TY - JOUR

T1 - Development of an item pool for a patient reported outcome measure of resilience for people living with dementia

AU - Roberts, Jennifer

AU - MacLeod, Catherine

AU - Hoare, Zoe

AU - Sullivan, Mary Pat

AU - Brotherhood, Emilie

AU - Stott, Joshua

AU - Windle, Gill

PY - 2023/9/27

Y1 - 2023/9/27

N2 - Background and objectives Policies to support people living with dementia increasingly focus on strengthsbased approaches, highlighting the importance of building resilience. This research responds to the lack of a suitableresilience measure for people with dementia. It develops a pool of items to inform a new measure of resilience for thispopulation.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, leadingto refinement and item reduction. Cognitive interviews with people living with dementia (n=11) then examinedthe face and content validity of items and the suitability of response-scale formatting. These two phases informedsubsequent 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 professionalsand this refinement reduced the measure to 63 items across 7 domains of the conceptual model (psychologicalstrengths; 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; therole 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) lowpreference for that item (n=6); and (d) presence of a preferred item within a cluster of similar questions (n=4). Itemswere 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 dementiaand led to the generation of a set of items for a new resilience measure that were understandable and acceptableto this target population. This 37-item pool reflects the conceptual understanding of resilience in dementia as beingderived across individual, community and societal level resources.

AB - Background and objectives Policies to support people living with dementia increasingly focus on strengthsbased approaches, highlighting the importance of building resilience. This research responds to the lack of a suitableresilience measure for people with dementia. It develops a pool of items to inform a new measure of resilience for thispopulation.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, leadingto refinement and item reduction. Cognitive interviews with people living with dementia (n=11) then examinedthe face and content validity of items and the suitability of response-scale formatting. These two phases informedsubsequent 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 professionalsand this refinement reduced the measure to 63 items across 7 domains of the conceptual model (psychologicalstrengths; 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; therole 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) lowpreference for that item (n=6); and (d) presence of a preferred item within a cluster of similar questions (n=4). Itemswere 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 dementiaand led to the generation of a set of items for a new resilience measure that were understandable and acceptableto this target population. This 37-item pool reflects the conceptual understanding of resilience in dementia as beingderived across individual, community and societal level resources.

KW - Dementia, Resilience, Strengths-based, Measure

U2 - 10.1186/s41687-023-00638-z

DO - 10.1186/s41687-023-00638-z

M3 - Article

C2 - 37755535

VL - 7

JO - Journal of Patient Reported Outcomes

JF - Journal of Patient Reported Outcomes

IS - 1

M1 - 96

ER -