Correction to: Time to move? Factors associated with burden of care among informal caregivers of cognitively impaired older people facing housing decisions: secondary analysis of a cluster randomized trial.

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).

Time to move? Factors associated with burden of care among informal caregivers of cognitively impaired older people facing housing decisions: secondary analysis of a cluster randomized trial.

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.

"Please listen to me": A cross-sectional study of experiences of seniors and their caregivers making housing decisions.

BACKGROUND: Little is known about the decision-making experiences of seniors and informal caregivers facing decisions about seniors' housing decisions when objective decision making measures are used. OBJECTIVES: To report on seniors' and caregivers' experiences of housing decisions. DESIGN: A cross-sectional study with a quantitative approach supplemented by qualitative data. SETTING: Sixteen health jurisdictions providing home care services, Quebec province, Canada. PARTICIPANTS: Two separate samples of seniors aged ≥ 65 years and informal caregivers of cognitively impaired seniors who had made a decision about housing. MEASUREMENTS: Information on preferred choice and actual choice about housing, role assumed in the decision, decisional conflict and decision regret was obtained through closed-ended questionnaires. Research assistants paraphrased participants' narratives about their decision-making experiences and made other observations in standardized logbooks. RESULTS: Thirty-one seniors (median age: 85.5 years) and 48 caregivers (median age: 65.1 years) were recruited. Both seniors and caregivers preferred that the senior stay at home (64.5% and 71.7% respectively). Staying home was the actual choice for only 32.2% of participating seniors and 36.2% of the seniors cared for by the participating caregivers. Overall, 93% seniors and 71% caregivers reported taking an active or collaborative role in the decision-making process. The median decisional conflict score was 23/100 for seniors and 30/100 for caregivers. The median decision regret score was the same for both (10/100). Qualitative analysis revealed that the housing decision was influenced by factors such as seniors' health and safety concerns and caregivers' burden of care. Some caregivers felt sad and guilty when the decision did not match the senior's preference. CONCLUSION: The actual housing decision made for seniors frequently did not match their preferred housing option. Advanced care planning regarding housing and better decision support are needed for these difficult decisions.

Implementing shared decision-making in interprofessional home care teams (the IPSDM-SW study): protocol for a stepped wedge cluster randomised trial.

INTRODUCTION: The frail elderly in Canada face a tough decision when they start to lose autonomy: whether to stay at home or move to another location. This study seeks to scale up and evaluate the implementation of shared decision-making (SDM) in interprofessional (IP) home care teams caring for elderly clients or their caregivers facing a decision about staying at home or moving elsewhere. METHODS: A stepped wedge cluster randomised trial involving 8 Health and Social Service Centers (HSSCs) will be conducted with IP home care teams. HSSCs are the unit of randomisation. A decision guide will be passively distributed to all of the participating HSSCs at the beginning of the project. The participating HSSCs will then be randomised to 1 of 4 intervention start times, separated by 7-month intervals. The primary outcome is whether or not clients and caregivers assumed an active role in decision-making, assessed with a modified version of the Control Preferences Scale. The intervention, targeted at IP home care teams, consists of a 1.5 hour online tutorial and a 3.5 hour skills building workshop in IP SDM. Clients will be eligible for outcome assessment if they (1) are aged ≥65; (2) are receiving care from the IP home care team of the enrolled HSSCs; (3) have made a decision about whether to stay at home or move to another location during the recruitment periods; (4) are able to read, understand and write French or English; (5) can give informed consent. If clients are not able to provide informed consent, their primary caregiver will become the eligible participant. ETHICS AND DISSEMINATION: Ethics committee review approval has been obtained from the Multicenter Ethics Committee of CISSS-Laval. Results will be disseminated at conferences, on websites of team members and in peer-reviewed and professional journals intended for policymakers and managers. TRIAL REGISTRATION NUMBER: NCT02592525, Pre-results.

Improving Decision making On Location of Care with the frail Elderly and their caregivers (the DOLCE study): study protocol for a cluster randomized controlled trial.

BACKGROUND: One of the toughest decisions faced by elderly people is whether to stay at home or move to a care facility. This study seeks to evaluate the impact of training interprofessional home-care teams in shared decision making combined with a decision aid on the proportion of elderly people who report being active in the decision-making process regarding whether to stay at home or move to a care facility. METHODS/DESIGN: We propose a multicenter cluster randomized trial conducted with home-care interprofessional teams in the Province of Quebec with 2 data collection phases: before and after the intervention. Units of randomization will be centers for primary healthcare and social services. We will enroll 16 of these and ask each to provide one home-care interprofessional team involved in decisions and care planning with eligible clients. Clients will be included if they i) are aged ≥65; ii) are receiving care from the participating home-care interprofessional team; iii) have faced the decision about staying at home or moving to a care facility in the past 3 to 6 months; iv) are able to read, understand and write French or English; and v) are able to give informed consent. If clients are unable to provide informed consent, their primary caregiver who was involved in the decision-making process will be eligible to participate. The intervention arm will receive training in shared decision making and use of a decision aid. The control arm will receive 'usual care'. The primary outcome of interest is the assumed role in the decision-making process as assessed in clients or caregivers with a modified version of the Control Preferences Scale. Multilevel modeling will be used to take the hierarchical structure of the data into account. The study has obtained full ethical approval. The trial will comply with CONSORT guidelines adapted for cluster randomized trials. DISCUSSION: Home care is a rapidly growing sector and this study will lay the foundations of a national strategy to ensure that IP home-care teams provide the highest quality of care for seriously ill elderly people and support for their families. TRIAL REGISTRATION: ClinicalTrials.gov NCT02244359 (registered 18 September 2014).