Background: The Translating Research in Elder Care (TREC) program is a longitudinal partnered program of research in Western Canada that aims to improve the quality of care and quality of life for residents and quality of worklife for staff in long-term care settings. This program of research includes researchers, citizens (persons living with dementia and caregivers of persons living in long-term care), and stakeholders (representatives from provincial and regional health authorities, owner-operators of long-term care homes). The aim of this paper is to describe how we used priority setting methods with citizens and stakeholders to identify ten priorities for research using the TREC data. Methods: We adapted the James Lind Alliance Priority Setting Partnership method to ensure our citizens and stakeholders could identify priorities within the existing TREC data. We administered an online survey to our citizen and stakeholder partners. An in-person priority setting workshop was held in March 2019 in Alberta, Canada to establish consensus on ten research priorities. The in-person workshop used a nominal group technique and involved two rounds of small group prioritization and one final full group ranking. Results: We received 72 online survey respondents and 19 persons (citizens, stakeholders) attended the in-person priority setting workshop. The workshop resulted in an unranked list of their ten research priorities for the TREC program. These priorities encompassed a range of non-clinical topics, including: influence of staffing (ratios, type of care provider) on residents and staff work life, influence of the work environment on resident outcomes, and the impact of quality improvement activities on residents and staff. Conclusions: This modified priority setting approach provided citizens and stakeholders with an opportunity to identify their own research priorities within the TREC program, without the external pressures of researchers. These priorities will inform the secondary analyses of the TREC data and the development of new projects. This modified priority setting may be a useful approach for research teams trying to engage their non-academic partners and to identify areas for future research.
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 healthrelated 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 ¼ 84.8, standard deviation ¼ 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.
Background Family and friend caregivers play significant roles in advocating for and ensuring quality health and social care of residents in Assisted Living (AL) homes. However, little is known about how the COVID-19 pandemic and related visitor restrictions affected their health and mental well-being. We examined the prevalence and correlates of anxiety and depressive symptoms among caregivers of AL residents during the initial wave of COVID-19 in two Canadian provinces. Methods A cross-sectional web-based survey was conducted among family/friend caregivers of AL residents in Alberta and British Columbia (Oct 28, 2020—Mar 31, 2021) to collect data on their sociodemographic, health and caregiving characteristics, as well as concerns about residents’ health and social care before and during the first wave of the pandemic. A clinically significant anxiety disorder and depressive symptoms were assessed with the GAD-7 and CES-D10 instruments, respectively. Separate multivariable (modified) Poisson regression models identified caregiver correlates of each mental health condition. Results Among the 673 caregivers completing the survey (81% for Alberta residents), most were women (77%), white (90%) and aged ≥ 55 years (81%). Clinically significant anxiety and depression were present in 28.6% and 38.8% of caregivers respectively. Both personal stressors (comorbidity level, income reduction, low social support) and caregiving stressors exacerbated by the pandemic were independently associated with caregiver anxiety and depression. The latter included increased concern about the care recipients’ depression (adjusted risk ratio [adjRR] = 1.84, 95% confidence interval [CI] 1.19–2.85 for caregiver anxiety and adjRR = 1.75, 95% CI 1.26–2.44 for caregiver depressive symptoms) and reported intention to withdraw the resident from AL because of COVID-19 (adjRR = 1.24, 95%CI 0.95–1.63 for caregiver anxiety and adjRR = 1.37, 95%CI 1.13–1.67 for caregiver depressive symptoms). Conclusions Caregivers of residents in AL homes reported significant personal and caregiving-related stressors during the initial wave of COVID-19 that were independently associated with an increased likelihood of experiencing clinically significant anxiety and depressive symptoms. Healthcare providers and AL staff should be aware of the prevalence and varied correlates of caregivers’ mental health during public health crises so that appropriate screening and support may identified and implemented.
Family or friend caregivers’ concerns about assisted living (AL) residents’ mental health are reflective of poor resident and caregiver mental health. COVID-19-related visiting restrictions increased caregiver concerns, but research on these issues in AL is limited. Using web-based surveys with 673 caregivers of AL residents in Western Canada, we assessed the prevalence and correlates of moderate to severe caregiver concerns about residents’ depressed mood, loneliness, and anxiety in the 3 months before and after the start of the COVID-19 pandemic. Caregiver concerns doubled after the start of the pandemic (resident depressed mood: 23%–50%, loneliness: 29%–62%, anxiety: 24%–47%). Generalized linear mixed models identified various modifiable risk factors for caregiver concerns (e.g., caregivers’ perception that residents lacked access to counseling services or not feeling well informed about and involved in resident care). These modifiable factors can be targeted in efforts to prevent or mitigate caregiver concerns and resident mental health issues.
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.
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