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What older adults and their caregivers need for making better health-related decisions at home: a participatory mixed methods protocol.

ABSTRACT: INTRODUCTION:Shared decision making is an interpersonal process whereby healthcare providers collaborate with and support patients in decision-making. Older adults receiving home care need support with decision-making. We will explore what older adults receiving home care and their caregivers need for making better health-related decisions. METHODS AND ANALYSIS:This two-phase sequential exploratory mixed methods study will be conducted in a pan-Canadian healthcare organisation, SE Health. First, we will create a participant advisory group to advise us throughout the research process. In phase 1 (qualitative), we will recruit a convenience sample of 15-30 older adults and caregivers receiving home care to participate in open-ended semi-structured interviews. Phase 1 participants will be invited to share what health-related decisions they face at home and what they need for making better decisions. In phase 2 (quantitative), interdisciplinary health and social care providers will be invited to answer a web-based survey to share their views on the decisional needs of older adults and their caregivers. The survey will include questions informed by findings from qualitative interviews in phase 1, and a workbook for assessing decisional needs based on the Ottawa Decision Support Framework. Finally, qualitative and quantitative results will be triangulated (by methods, investigator, theory and source) to develop a comprehensive understanding of decision-making needs from the perspective of older adults, caregivers and health and social care providers. We will use the quality of mixed methods studies in health services research guidelines and the Checklist for Reporting the Results of Internet E-Surveys checklist. ETHICS AND DISSEMINATION:Ethics approval was obtained from the research ethics boards at Southlake Regional Health Centre and Université Laval. This study will inform the design of decision support interventions. Further dissemination plans include summary briefs for study participants, tailored reports for home care decision makers and policy makers, and peer-reviewed publications. TRIAL REGISTRATION NUMBER:NCT04327830.

SUBMITTER: Lai C

PROVIDER: S-EPMC7654109 | biostudies-literature | 2020 Nov

REPOSITORIES: biostudies-literature

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What older adults and their caregivers need for making better health-related decisions at home: a participatory mixed methods protocol.

Lai Claudia C Holyoke Paul P Plourde Karine V KV Décary Simon S Légaré France F

BMJ open 20201109 11

<h4>Introduction</h4>Shared decision making is an interpersonal process whereby healthcare providers collaborate with and support patients in decision-making. Older adults receiving home care need support with decision-making. We will explore what older adults receiving home care and their caregivers need for making better health-related decisions.<h4>Methods and analysis</h4>This two-phase sequential exploratory mixed methods study will be conducted in a pan-Canadian healthcare organisation, SE ...[more]

PMID: 33168556

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Project description: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.

Project description:ObjectivesThere is a huge treatment gap for late-life depression in sub-Saharan Africa. Building on prior work to scale-up mental healthcare with the aid of the WHO Mental Health Gap Action Programme Intervention Guide electronic version (emhGAP-IG), this study aims to involve older people in the iterative development of innovations to overcome challenges in the detection and clinical management of late-life depression by frontline non-specialist primary healthcare workers (PHCW) in Nigeria.MethodsThere were 43 participants in the study. We conducted formative qualitative research using 15 in-depth key informant interviews with persons who were 60 years or older and had a recent experience of depression. We also conducted two focus group discussions comprising 13 of their caregivers. Through a full day stakeholders workshop comprising 15 participants, we drew on the results of our qualitative explorations to identify the pathway to impact of an intervention package (emhGAP-Age) appropriate for the specific needs of persons with late-life depression in Nigeria.ResultsA Theory of Change (ToC) map was produced. It highlights the expected long-term outcomes of emhGAP-Age to include the potential for improvement of the mental health and wellbeing of older people living in Nigeria and the generation of interest among governmental agencies concerned with policy and planning for mental healthcare. Key resources that serve as preconditions were identified to consist of the availability of PHCW who are skilled in the identification and treatment of depression and have interest in and commitment to providing care to older people. Required community resources include support from immediate family, neighbours, and informal groups. Interventions that are appropriate for depression in old age need to incorporate these community resources and address not only the symptoms of the condition but also comorbid physical health problems.ConclusionsA participatory ToC process led to the identification of the key components of an age-appropriate version of the emhGAP-IG for delivering care to older persons with depression by PHCW in Nigeria.

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What older adults and their caregivers need for making better health-related decisions at home: a participatory mixed methods protocol.

Publications

What older adults and their caregivers need for making better health-related decisions at home: a participatory mixed methods protocol.

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