What Older Adults and Their Caregivers Need for Making Better Decisions at Home

February 19, 2021 updated by: CHU de Quebec-Universite Laval

Decision-making Needs of Older Adults Receiving Home Care From the Perspective of Older Adults, Their Caregivers and Inter-disciplinary Health and Social Care Providers: Participatory Mixed Methods Study

Most Canadians wish to stay at home in their old age. As older adults stay at home with the support of home and community services, they are often faced with difficult decisions, such as "Who will look after me when I can't look after myself any more, or if I have dementia?" or "Should I move to a nursing home, or stay here?" Care providers in the home and community can support older adults and their families make these difficult decisions by providing them with information they need and asking them about their values and preferences. By helping older adults and their families know more about their choices and choose options that reflect what is important to them, care providers can work with their clients to help them make informed health decisions together. In this fellowship, the investigators will study what supports are needed for older adults to make informed health decisions from the perspective of older adults, caregivers and front-line care providers in the home and community setting across Canada. This can help improve the home and community services provided to older adults (and their caregivers) so that older adults (and their caregivers) can make better decisions together with their health care team.

Study Overview

Status

Unknown

Conditions

Intervention / Treatment

Detailed Description

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 (e.g., information on risks and benefits of options). This study will explore what older adults and their caregivers need for making better health-related decisions at home, and what health and social care providers need for supporting their home care clients with decision-making.

Methods and analysis This two-phase sequential exploratory mixed methods study will be conducted in a pan-Canadian healthcare organization, St Elizabeth Health Care. First, the investigators will create a participant advisory group (one older adult, one caregiver and two care providers) to advise us throughout the research process. In Phase 1 (qualitative), the investigators will recruit a convenient sample of older adults and caregivers receiving home care to participate in open-ended semi-structured interviews to discuss what health-related decisions they face at home and what they need for making better decisions (e.g. types of knowledge, sources of support). In Phase 2 (quantitative), interdisciplinary health and social care providers (e.g., nurses, personal support workers, occupational therapists, physiotherapists) will be invited to answer an online survey to share their views on the decision-making needs of older adults and their caregivers. The survey will include close-ended questions informed by findings from the qualitative interviews in Phase 1. Finally, qualitative and quantitative results will be triangulated from the perspective of older adults, caregivers and health and social care providers. Results will be reported using EQUATOR guidelines.

Study Type

Observational

Enrollment (Anticipated)

5000

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Locations

  • Canada
    • Quebec
      • Québec, Quebec, Canada
        • CERSSPL

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

18 years and older (ADULT, OLDER_ADULT)

Accepts Healthy Volunteers

Yes

Genders Eligible for Study

All

Sampling Method

Non-Probability Sample

Study Population

Older adults who have received or are receive home care services (and their caregivers)

Description

Inclusion Criteria:

  • older adults who have received, or are receiving home care services
  • caregivers of older adults who have received, or are receiving home care services
  • interdisciplinary health and social care providers who provide home care services for older adults

Exclusion Criteria:

  • no experience receiving or providing home care services

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

Cohorts and Interventions

Group / Cohort
Intervention / Treatment
Older adults and their caregivers
Older adults who have received or are receiving home care services and their caregivers
Other: Decisional needs assessment
Assessment of decision-making needs
Interdisciplinary health and social care providers
Interdisciplinary health and social care providers who provide home care services to older adults
Other: Decisional needs assessment
Assessment of decision-making needs

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Measure Description
Time Frame
Decision making needs of older adults who receive home care services and their caregivers.
Time Frame: About 60 minutes
Interview of older adults and their caregivers. Open-ended questions guide by the Ottawa Decision Support Framework (ODSF).
About 60 minutes
What health and social care providers need to support older adults and their caregivers with making decisions.
Time Frame: 5 to 10 minutes
Survey of interdisciplinary health and social care providers, based on the Ottawa Decision Support Framework (ODSF) factors contributing to difficulty.
5 to 10 minutes

Secondary Outcome Measures

Outcome Measure
Measure Description
Time Frame
-Health and social care providers opinion how often older adults faced difficult decisions. -Shared decision-making. -Others participants involved in the decision making.
Time Frame: 5 to 10 minutes
  • Opinion frequency; 5-point Likert scale always to never.
  • Shared decision-making generic approach in 5 questions; 5-point Likert scale always to never.
5 to 10 minutes

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

CHU de Quebec-Universite Laval

Collaborators

St Elizabeth Healthcare

Investigators

  • Study Chair: France Legare, Laval University /SE Health

Publications and helpful links

The person responsible for entering information about the study voluntarily provides these publications. These may be about anything related to the study.

General Publications

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (ACTUAL)

August 15, 2019

Primary Completion (ACTUAL)

May 4, 2020

Study Completion (ANTICIPATED)

March 1, 2021

Study Registration Dates

First Submitted

March 27, 2020

First Submitted That Met QC Criteria

March 27, 2020

First Posted (ACTUAL)

March 31, 2020

Study Record Updates

Last Update Posted (ACTUAL)

February 21, 2021

Last Update Submitted That Met QC Criteria

February 19, 2021

Last Verified

February 1, 2021

More Information

Terms related to this study

Keywords

Other Study ID Numbers

  • MCD315

Plan for Individual participant data (IPD)

Plan to Share Individual Participant Data (IPD)?

NO

Drug and device information, study documents

Studies a U.S. FDA-regulated drug product

No

Studies a U.S. FDA-regulated device product

No

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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