Counting what counts: assessing quality of life and its social determinants among nursing home residents with dementia

dc.contributor.authorHoben, Matthias
dc.contributor.authorDymchuk, Emily
dc.contributor.authorDoupe, Malcolm B.
dc.contributor.authorKeefe, Janice
dc.contributor.authorAubrecht, Katie
dc.contributor.authorKelly, Christine
dc.contributor.authorStajduhar, Kelli
dc.contributor.authorBanerjee, Sube
dc.contributor.authorO’Rourke, Hannah M.
dc.contributor.authorChamberlain, Stephanie
dc.contributor.authorBeeber, Anna
dc.contributor.authorSalma, Jordana
dc.contributor.authorJarrett, Pamela
dc.contributor.authorArya, Amit
dc.contributor.authorCorbett, Kyle
dc.contributor.authorDevkota, Rashmi
dc.contributor.authorRistau, Melissa
dc.contributor.authorShrestha, Shovana
dc.contributor.authorEstabrooks, Carole A.
dc.date.accessioned2024-03-06T17:54:47Z
dc.date.available2024-03-06T17:54:47Z
dc.date.issued2024-02-21
dc.date.updated2024-03-01T04:34:54Z
dc.description.abstractAbstract Background Maximizing quality of life (QoL) is a major goal of care for people with dementia in nursing homes (NHs). Social determinants are critical for residents' QoL. However, similar to the United States and other countries, most Canadian NHs routinely monitor and publicly report quality of care, but not resident QoL and its social determinants. Therefore, we lack robust, quantitative studies evaluating the association of multiple intersecting social determinants with NH residents’ QoL. The goal of this study is to address this critical knowledge gap. Methods We will recruit a random sample of 80 NHs from 5 Canadian provinces (Alberta, British Columbia, Manitoba, Nova Scotia, Ontario). We will stratify facilities by urban/rural location, for-profit/not-for-profit ownership, and size (above/below median number of beds among urban versus rural facilities in each province). In video-based structured interviews with care staff, we will complete QoL assessments for each of ~ 4,320 residents, using the DEMQOL-CH, a validated, feasible tool for this purpose. We will also assess resident’s social determinants of QoL, using items from validated Canadian population surveys. Health and quality of care data will come from routinely collected Resident Assessment Instrument – Minimum Data Set 2.0 records. Knowledge users (health system decision makers, Alzheimer Societies, NH managers, care staff, people with dementia and their family/friend caregivers) have been involved in the design of this study, and we will partner with them throughout the study. We will share and discuss study findings with knowledge users in web-based summits with embedded focus groups. This will provide much needed data on knowledge users' interpretations, usefulness and intended use of data on NH residents’ QoL and its health and social determinants. Discussion This large-scale, robust, quantitative study will address a major knowledge gap by assessing QoL and multiple intersecting social determinants of QoL among NH residents with dementia. We will also generate evidence on clusters of intersecting social determinants of QoL. This study will be a prerequisite for future studies to investigate in depth the mechanisms leading to QoL inequities in LTC, longitudinal studies to identify trajectories in QoL, and robust intervention studies aiming to reduce these inequities.
dc.identifier.citationBMC Geriatrics. 2024 Feb 21;24(1):177
dc.identifier.urihttps://doi.org/10.1186/s12877-024-04710-1
dc.identifier.urihttp://hdl.handle.net/1993/38045
dc.language.rfc3066en
dc.rights.holderThe Author(s)
dc.titleCounting what counts: assessing quality of life and its social determinants among nursing home residents with dementia
dc.typeJournal Article
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