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Abstract Background Making health-related decisions about loved ones with cognitive impairment may contribute to caregiver burden of care. We sought to explore factors associated with burden of care among informal caregivers who had made housing decisions on behalf of a cognitively impaired older person. Methods We conducted a secondary analysis within a cluster randomized trial (cRT) conducted in 16 publicly-funded home care service points across the Province of Quebec. The cRT assessed the impact of training home care teams in interprofessional shared decision making (IP-SDM). We assessed burden of care with the Zarit Burden Interview (ZBI) scale. We adapted Pallett’s framework to inform our data analysis. This framework posits that factors influencing burden of care among caregivers fall within four domains: (a) characteristics of the caregiver, (b) characteristics of the cognitively impaired older person, (c) characteristics of the relationship between the caregiver and the cognitively impaired older person, and (d) the caregiver’s perception of their social support resources. We computed the ZBI score and performed multilevel linear regression modelling. Results Among 296 caregivers included in the dataset, the mean ZBI score was 29.8 (SD = 17.5) out of 88. The typical participant was 62.6 years old (SD = 11.7), female (74.7%), and caring for a mother or father (61.2%). Using multivariate analysis, factors significantly associated with caregiver burden mapped onto: caregiver characteristics (caregivers with higher burden were female, experienced higher decision regret and decisional conflict, preferred that their loved one move into the caregiver’s home, into a private nursing home or a mixed private-public nursing home, and had made the decision more recently); relationship characteristics (spouses and children experienced higher burden); and caregiver’s perception of social support resources (caregivers who perceived that a joint decision making process had occurred had higher burden). Conclusion In line with the proposed framework used, we found that caregiver characteristics, relationship characteristics and caregiver’s perception of social support resources were associated with burden of care. Our results will help design interventions to prevent and/or reduce caregivers’ burden of care. Trial registration NCT02244359. Date of registration: September 18, 2014.

Abstract Background Frail seniors often receive ineffective care, which does not meet their needs. It is still unclear how healthcare systems should be redesigned to be more sensitive to the needs and values of frail seniors and their caregivers. We thus aimed to describe key stakeholders’ perspectives on the current healthcare and services available to frail seniors. Methods In this qualitative descriptive study, we conducted semi-structured interviews with a convenience sample of 42 frail seniors, caregivers, clinicians, or healthcare administrators/decision makers involved in frail senior care from five Canadian provinces. We explored participants’ perspectives on the quality of care and services for frail seniors. We used an inductive/deductive thematic data analysis approach based on the Square-of-Care model, including emerging themes using the constant comparison method. Results We grouped participants’ perspectives into strengths, weaknesses and opportunities for improvement, and then into nine themes: care processes, continuity of care, social frailty, access to healthcare and services, models of healthcare delivery, cost of care, healthcare staff management and professional development of healthcare providers, material resources and environmental design of healthcare facilities, and coordination of care. Our findings suggest redesigning assessment, communication with frail seniors and their caregivers, targeting care and services to the needs, and integrating care better across settings and in time. Conclusions A systematic identification of frail older people is the first step to adapt healthcare systems to this population’s needs. Participation of frail older people and their caregivers to decision making would also allow choosing care plans meeting their care goals. The integration of care and services across settings, over time, and with various providers, is also needed to meet frail senior needs.

Abstract Objective Improving care transitions for older adults can reduce emergency department (ED) revisits, and the strain placed upon caregivers. We analyzed whether caregivers felt a change in burden following a care transition, and what may be improved to reduce it. Methods This mixed-methods observational study nested within LEARNING WISDOM included caregivers of older patients who experienced an ED care transition. Burden was collected with the brief Zarit Burden Interview (ZBI-12), and caregivers also commented on the care transition. A qualitative coding scheme of patient care transitions was created to reflect themes important to caregivers. Comments were randomly analyzed until saturation and themes were extracted from the data. We followed both the SRQR and STROBE checklists. Results Comments from 581 caregivers (mean age (SD) 64.5 (12.3), 68% women) caring for patients (mean age (SD) 77.2 (7.54), 48% women) were analyzed. Caregivers overwhelmingly reported dissatisfaction and unmet service expectations, particularly with home care and domestic help. Communication and follow-up from the ED emerged as an area for improvement. Caregivers who reported an increased level of burden following a patient’s care transition had significantly higher ZBI scores than caregivers who self-reported stable burden levels. Conclusion Caregivers with increasing, stable, and improved levels of subjective burden all reported areas for improvement in the care transition process. Themes centering on the capacity to live at home and inadequate communication were most frequently mentioned and may represent serious challenges to caregivers. Addressing these challenges could improve both caregiver burden and ED care transitions.

Abstract Objective Improving care transitions for older adults can reduce emergency department (ED) visits, adverse events, and empower community autonomy. We conducted an inductive qualitative content analysis to identify themes emerging from comments to better understand ED care transitions. Methods The LEARNING WISDOM prospective longitudinal observational cohort includes older adults (≥ 65 years) who experienced a care transition after an ED visit from both before and during COVID-19. Their comments on this transition were collected via phone interview and transcribed. We conducted an inductive qualitative content analysis with randomly selected comments until saturation. Themes that arose from comments were coded and organized into frequencies and proportions. We followed the Standards for Reporting Qualitative Research (SRQR). Results Comments from 690 patients (339 pre-COVID, 351 during COVID) composed of 351 women (50.9%) and 339 men (49.1%) were analyzed. Patients were satisfied with acute emergency care, and the proportion of patients with positive acute care experiences increased with the COVID-19 pandemic. Negative patient comments were most often related to communication between health providers across the care continuum and the professionalism of personnel in the ED. Comments concerning home care became more neutral with the COVID-19 pandemic. Conclusion Patients were satisfied overall with acute care but reported gaps in professionalism and follow-up communication between providers. Comments may have changed in tone from positive to neutral regarding home care over the COVID-19 pandemic due to service slowdowns. Addressing these concerns may improve the quality of care transitions and provide future pandemic mitigation strategies.

Abstract Background and objectives Although the positive influence of social activity on health is now well-established, a complex relationship exists among social participation, personal, social and the environment. Social participation of older adults was examined in rural and urban settings to identify features of the built-environment and perception of neighborhood specific to the locale. Research Design and methods Using cross-sectional data from the Canadian Longitudinal Study on Aging (CLSA), we examined social participation and health of older people (65 + yrs) in relation to the built environment and sociocultural contexts for urban and rural areas. A social participation index was derived from responses on the frequency of participating in 8 social activities over the past 12 months. Personal, household and neighborhood indicators were examined to develop multivariable regression models for social participation in urban and rural cohorts. Results No meaningful differences were seen with the frequency of social participation between rural and urban settings; however, the type of community-related activities differed in that a greater proportion of urban participants reported sports and educational/cultural events than rural participants. Service club activities were greater for rural than urban participants. Different neighborhood features were statistically significant factors in explaining social participation in rural than in urban locales, although transportation was a significant factor regardless of locale. Trustworthiness, belonging and safety were perceived factors of the neighborhood associated with higher social participation for rural participants. Discussion and implications The relationship between home and health becomes stronger as one ages. Social and physical features of built environment specific to urban and rural settings need to be considered when implementing appropriate social activities for older people.

Abstract Background Older adults (≥65 years) with diabetes and multiple chronic conditions (MCC) (> 2 chronic conditions) experience reduced function and quality of life, increased health service use, and high mortality. Many community-based self-management interventions have been developed for this group, however the evidence for their effectiveness is limited. This paper presents the protocol for a randomized controlled trial (RCT) comparing the effectiveness and implementation of the Aging, Community and Health Research Unit-Community Partnership Program (ACHRU-CPP) to usual care in older adults with diabetes and MCC and their caregivers. Methods We will conduct a cross-jurisdictional, multi-site implementation-effectiveness type II hybrid RCT. Eligibility criteria are: ≥65 years, diabetes diagnosis (Type 1 or 2) and at least one other chronic condition, and enrolled in a primary care or diabetes education program. Participants will be randomly assigned to the intervention (ACHRU-CPP) or control arm (1:1 ratio). The intervention arm consists of home/telephone visits, monthly group wellness sessions, multidisciplinary case conferences, and system navigation support. It will be delivered by registered nurses and registered dietitians/nutritionists from participating primary care or diabetes education programs and program coordinators from community-based organizations. The control arm consists of usual care provided by the primary care setting or diabetes education program. The primary outcome is the change from baseline to 6 months in mental functioning. Secondary outcomes will include, for example, the change from baseline to 6 months in physical functioning, diabetes self-management, depressive symptoms, and cost of use of healthcare services. Analysis of covariance (ANCOVA) models will be used to analyze all outcomes, with intention-to-treat analysis using multiple imputation to address missing data. Descriptive and qualitative data from older adults, caregivers and intervention teams will be used to examine intervention implementation, site-specific adaptations, and scalability potential. Discussion An interprofessional intervention supporting self-management may be effective in improving health outcomes and client/caregiver experience and reducing service use and costs in this complex population. This pragmatic trial includes a scalability assessment which considers a range of effectiveness and implementation criteria to inform the future scale-up of the ACHRU-CPP. Trial registration Clinical Trials.gov Identifier NCT03664583 . Registration date: September 10, 2018.

BackgroundOlder adults with disabilities such as loss of autonomy face the decision of whether to stay at home or move to a health care facility such as a nursing home. Therefore, they may need support for this difficult decision. ObjectiveWe assessed the intention of Canadian older adults to use an electronic decision aid (eDA) to make housing decisions and identified the factors that influenced their intention. MethodsWe conducted a cross-sectional study using a web-based survey targeting older adults across 10 Canadian provinces and 3 territories. We included respondents from a web-based panel who were aged ≥65 years, understood English or French, had access to an electronic device with an internet connection, and had made a housing decision over the past few months or were planning to make a decision in the coming year. We based the web-based survey on the Unified Theory of Acceptance and Use of Technology (UTAUT). We adapted 17 UTAUT items to measure respondents’ intention to use the eDA for housing decisions, as well as items measuring 4 intention constructs (performance expectancy, effort expectancy, social influence, and facilitating conditions). We also assessed eHealth literacy using both subjective and objective scales. We used descriptive statistics and multivariable linear regression analyses to identify the factors influencing the intention to use the eDA. ResultsOf the 11,972 invited panelists, 1176 (9.82%) met the eligibility criteria, and 1000 (85.03%) respondents completed the survey. The mean age was 72.5 (SD 5.59) years. Most respondents were male (548/1000, 54.8%), White (906/1000, 90.6%), English speakers (629/1000, 62.9%), and lived in Ontario or Quebec (628/1000, 62.8%) and in urban areas (850/1000, 85%). The mean scores were 27.8 (SD 5.88) out of 40 for subjective eHealth literacy and 3.00 (SD 0.97) out of 5 for objective eHealth literacy. In our sample, the intention score was 4.74 (SD 1.7) out of 7. The mean scores of intention constructs out of 7 were 5.63 (SD 1.28) for facilitating conditions, 4.94 (SD 1.48) for performance expectancy, 5.61 (SD 1.35) for effort expectancy, and 4.76 (SD 1.59) for social influence. In the final model, the factors associated with intention included mother tongue (β=.30; P

BackgroundFrail older adults and caregivers need support from their home care teams in making difficult housing decisions, such as whether to remain at home, with or without assistance, or move into residential care. However, home care teams are often understaffed and busy, and shared decision-making training is costly. Nevertheless, overall awareness of shared decision-making is increasing. We hypothesized that distributing a decision aid could be sufficient for providing decision support without the addition of shared decision-making training for home care teams. ObjectiveWe evaluated the effectiveness of adding web-based training and workshops for care teams in interprofessional shared decision-making to passive dissemination of a decision guide on the proportion of frail older adults or caregivers of cognitively-impaired frail older adults reporting active roles in housing decision-making. MethodsWe conducted a stepped-wedge cluster randomized trial with home care teams in 9 health centers in Quebec, Canada. Participants were frail older adults or caregivers of cognitively impaired frail older adults facing housing decisions and receiving care from the home care team at one of the participating health centers. The intervention consisted of a 1.5-hour web-based tutorial for the home care teams plus a 3.5-hour interactive workshop in interprofessional shared decision-making using a decision guide that was designed to support frail older adults and caregivers in making housing decisions. The control was passive dissemination of the decision guide. The primary outcome was an active role in decision-making among frail older adults and caregivers, measured using the Control Preferences Scale. Secondary outcomes included decisional conflict and perceptions of how much care teams involved frail older adults and caregivers in decision-making. We performed an intention-to-treat analysis. ResultsA total of 311 frail older adults were included in the analysis, including 208 (66.9%) women, with a mean age of 81.2 (SD 7.5) years. Among 339 caregivers of cognitively-impaired frail older adults, 239 (70.5%) were female and their mean age was 66.4 (SD 11.7) years. The intervention increased the proportion of frail older adults reporting an active role in decision-making by 3.3% (95% CI –5.8% to 12.4%, P=.47) and the proportion of caregivers of cognitively-impaired frail older adults by 6.1% (95% CI -11.2% to 23.4%, P=.49). There was no significant impact on the secondary outcomes. However, the mean score for the frail older adults’ perception of how much health professionals involved them in decision-making increased by 5.4 (95% CI −0.6 to 11.4, P=.07) and the proportion of caregivers who reported decisional conflict decreased by 7.5% (95% CI −16.5% to 1.6%, P=.10). ConclusionsAlthough it slightly reduced decisional conflict for caregivers, shared decision-making training did not equip home care teams significantly better than provision of a decision aid for involving frail older adults and their caregivers in decision-making. Trial RegistrationClinicalTrials.gov NCT02592525; https://clinicaltrials.gov/show/NCT02592525

BackgroundLittle is known about engaging patients and stakeholders in the process of scaling up effective knowledge translation interventions targeting the public. ObjectiveUsing an integrated knowledge translation approach, we aimed to scale up and evaluate an effective pilot program to disseminate research results in public libraries. MethodsWe conducted a scaling-up study targeting the public. On the basis of our successful pilot project, we codeveloped and implemented a large-scale program of free citizen workshops in public libraries, in a close research partnership with stakeholders and patient representatives. Citizen workshops, each facilitated by 1 participating physician and 1 science communicator, consisted of a 45-minute computer-assisted presentation and a 45-minute open exchange. The intervention outcome was knowledge gained. The scale-up outcomes were satisfaction, appropriateness, coverage, and costs. An evaluation questionnaire was used to collect data of interest. Both quantitative and qualitative analyses were performed. ResultsThe workshop theme chosen by the patient and stakeholder representatives was the high prevalence of medication overuse among people aged ≥65 years. From April to May 2019, 26 workshops were conducted in 25 public libraries reaching 362 people. The mean age of participants was 64.8 (SD 12.5) years. In total, 18 participating physicians and 6 science communicators facilitated the workshops. Participants reported significant knowledge gain (mean difference 2.1, 95% CI 2.0-2.2; P

Following publication of the original article [1], we have been notified that one of the authors’ given name and last names are reversed and misspelled and thus not reflected correctly (given name now is Painchaud-Guérard and it should be Geneviève and last name now is Geneviève and it should be Painchaud Guérard).