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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., (© 2024. The Author(s).)

Objectives: Quality of life (QoL) of nursing home (NH) residents is critical, yet understudied, particularly during the COVID-19 pandemic. Our objective was to examine whether COVID-19 outbreaks, lack of access to geriatric professionals, and care aide burnout were associated with NH residents' QoL., Design: Cross-sectional study (July to December 2021)., Setting and Participants: We purposefully selected 9 NHs in Alberta, Canada, based on their COVID-19 exposure (no or minor/short outbreaks vs repeated or extensive outbreaks). We included data for 689 residents from 18 care units., Methods: We used the DEMQOL-CH to assess resident QoL through video-based care aide interviews. Independent variables included a COVID-19 outbreak in the NH in the past 2 weeks (health authority records), care unit-levels of care aide burnout (9-item short-form Maslach Burnout Inventory), and resident access to geriatric professionals (validated facility survey). We ran mixed-effects regression models, adjusted for facility and care unit (validated surveys), and resident covariates (Resident Assessment Instrument-Minimum Data Set 2.0)., Results: Recent COVID-19 outbreaks (β = 0.189; 95% CI: 0.058-0.320), higher proportions of emotionally exhausted care aides on a care unit (β = 0.681; 95% CI: 0.246-1.115), and lack of access to geriatric professionals (β = 0.216; 95% CI: 0.003-0.428) were significantly associated with poorer resident QoL., Conclusions and Implications: Policies aimed at reducing infection outbreaks, better supporting staff, and increasing access to specialist providers may help to mitigate how COVID-19 has negatively affected NH resident QoL., (Copyright © 2023 The Authors. Published by Elsevier Inc. All rights reserved.)

Objectives: Maximizing quality of life (QoL) is the ultimate goal of long-term dementia care. However, routine QoL measurement is rare in nursing home (NH) and assisted living (AL) facilities. Routine QoL measurement might lead to improvements in resident QoL. Our objective was to assess the feasibility of using DEMQOL-CH, completed by long-term care staff in video calls with researchers, to assess health-related quality of life (HrQoL) of NH and AL residents with dementia or other cognitive impairment., Design: Cross-sectional study., Setting and Participants: We included a convenience sample of 5 NHs and 5 AL facilities in the Canadian province of Alberta. Forty-two care staff who had worked in the facility for ≥3 months completed DEMQOL-CH assessments of 183 residents who had lived in the facility for 3 months or more and were aged ≥65 years. Sixteen residents were assessed independently by 2 care staff to assess inter-rater reliability., Methods: We assessed HrQoL in people with dementia or other cognitive impairment using DEMQOL-CH, and assessed time to complete, inter-rater reliability, internal consistency reliability, and care staff ratings of feasibility of completing the DEMQOL-CH., Results: Average time to complete DEMQOL-CH was <5 minutes. Staff characteristics were not associated with time to complete or DEMQOL-CH scores. Inter-rater reliability [0.735, 95% confidence interval (CI): 0.712-0.780] and internal consistency reliability (0.834, 95% CI: 0.779-0.864) were high. The DEMQOL-CH score varied across residents (mean = 84.8, standard deviation = 11.20, 95% CI: 83.2-86.4). Care aides and managers rated use of the DEMQOL-CH as highly feasible, acceptable, and valuable., Conclusions and Implications: This study provides a proof of concept that DEMQOL-CH can be used to assess HrQoL in NH and AL residents and provides initial indications of feasibility and resources required. DEMQOL-CH may be used to support actions to improve the QoL of residents., (Copyright © 2021 The Authors. Published by Elsevier Inc. All rights reserved.)

Background: The Translating Research in Elder Care (TREC) program is a partnered health services research team that aims to improve the quality of care and quality of life for residents and quality of worklife for staff in nursing homes. This team includes academic researchers, trainees, research staff, citizens (persons living with dementia and family/friend caregivers of persons living in nursing homes), and decision-makers (ministries of health, health authorities, operators of nursing homes). The TREC team has experience working with health system partners but wanted to undertake activities to enhance the collaboration between the academic researchers and citizen members. The aim of this paper is to describe the TREC team members' experiences and perceptions of citizen engagement and identify necessary supports to promote meaningful engagement in health research teams. Methods: We administered two online surveys (May 2018, July 2019) to all TREC team members (researchers, trainees, staff, decision-makers, citizens). The surveys included closed and open-ended questions guided by regional and international measures of engagement and related to respondents' experience with citizen engagement, their perceptions of the benefits and challenges of citizen engagement, and their needs for training and other tools to support engagement. We analyzed the closed-ended responses using descriptive statistics. Results: We had a 78% response rate (68/87) to the baseline survey, and 27% response rate (21/77) to the follow-up survey. At baseline, 30 (44%) of respondents reported they were currently engaged in a research project with citizen partners compared to 11(52%) in the follow-up survey. Nearly half (10(48%)) of the respondents in the follow-up reported an increase in citizen engagement over the previous year. Respondents identified many benefits to citizen engagement (unique perspectives, assistance with dissemination) and challenges (the need for specific communication skills, meeting organizing and facilitation, and financial/budget support), with little change between the two time points. Respondents reported that the amount of citizen engagement in their research (or related projects) had increased or stayed the same. Conclusions: Despite increasing recognition of the benefits of including persons with lived experience and large-scale promotion efforts, the research team still lack sufficient training and resources to engage non-academic partners. Our research identified specific areas that could be addressed to improve the engagement of citizens in health research. Plain English Summary: Engaging non-academic research partners is becoming an expectation for Canadian health research teams. Research specifically on citizen (patient) engagement has identified benefits and challenges of partnered research; however, most research has only examined one time point. Less is known about how the perception of engagement may change with exposure to engagement in research activities. Translating Research in Elder Care (TREC) is a research program that aims to improve the quality of care and quality of life for residents, and quality of work life of staff in nursing homes. The team includes academic researchers, citizens (the term preferred by our members to reflect persons with dementia, family/friend caregivers of individuals living in nursing homes), decision-maker stakeholders (e.g., ministries of health, operators of nursing homes), trainees (Masters, PhD, postdoctoral fellows), and staff. The TREC team initiated several activities to deepen the partnerships with our citizen members. This paper describes the teams' perceptions of engagement and the benefits and challenges of citizen engagement in an established health research team. We invited the TREC team to complete an online survey (May 2018) before undertaking engagement activities (e.g., training, priority setting) and after 15 months of activities (July 2019). We asked respondents questions about their experience with citizen engagement, their perceptions of the potential research activities citizens could be engaged in, and the benefits and challenges of citizen engagement. Research team respondents reported an increase in citizen engagement in their research but that needs for support persisted. We identify specific areas where research teams need more training and support to ensure that engaged research is possible and sustainable. [ABSTRACT FROM AUTHOR]