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

The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Read our disclaimer for details.
 
ClinicalTrials.gov Identifier: NCT04327830
Recruitment Status : Active, not recruiting
First Posted : March 31, 2020
Last Update Posted : February 21, 2021
Sponsor:
Collaborator:
St Elizabeth Healthcare
Information provided by (Responsible Party):
CHU de Quebec-Universite Laval

Brief Summary:
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.

Condition or disease Intervention/treatment
Aging Other: Decisional needs assessment

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.

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Study Type : Observational
Estimated Enrollment : 5000 participants
Observational Model: Case-Only
Time Perspective: Retrospective
Official Title: 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
Actual Study Start Date : August 15, 2019
Actual Primary Completion Date : May 4, 2020
Estimated Study Completion Date : March 1, 2021

Resource links provided by the National Library of Medicine

MedlinePlus related topics: Caregivers

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




Primary Outcome Measures :
  1. 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).

  2. 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.


Secondary Outcome Measures :
  1. -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.



Information from the National Library of Medicine

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Ages Eligible for Study:   18 Years and older   (Adult, Older Adult)
Sexes Eligible for Study:   All
Gender Based Eligibility:   Yes
Accepts Healthy Volunteers:   Yes
Sampling Method:   Non-Probability Sample
Study Population
Older adults who have received or are receive home care services (and their caregivers)
Criteria

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

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT04327830


Locations
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Canada, Quebec
CERSSPL
Québec, Quebec, Canada
Sponsors and Collaborators
CHU de Quebec-Universite Laval
St Elizabeth Healthcare
Investigators
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Study Chair: France Legare Laval University /SE Health
Publications:
1. Statistics Canada. Home health care and related services [Report on the Internet]. Ottawa: Statitics Canada, 2017 (cited July 31, 2019). Accessed on Feb 10, 2020 from: https://www150.statcan.gc.ca/n1/daily-quotidien/190731/dq190731c-eng.htm
2. Canadian Institute for Health Information. Home care expenditures in the NHEX Database [Technical note on the Internet] Ottawa: The Institute; 2017 (cited November 2017). Accessed on Feb 20, 2020 from: https://www.cihi.ca/sites/default/files/document/technical_notes_on_home_care-nhex2017-en.pdf.

Publications automatically indexed to this study by ClinicalTrials.gov Identifier (NCT Number):
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Responsible Party: CHU de Quebec-Universite Laval
ClinicalTrials.gov Identifier: NCT04327830    
Other Study ID Numbers: MCD315
First Posted: March 31, 2020    Key Record Dates
Last Update Posted: February 21, 2021
Last Verified: February 2021
Individual Participant Data (IPD) Sharing Statement:
Plan to Share IPD: No

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Studies a U.S. FDA-regulated Drug Product: No
Studies a U.S. FDA-regulated Device Product: No
Keywords provided by CHU de Quebec-Universite Laval:
Shared decision making
Home care