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

NCT ID: NCT04327830

Last Updated: 2021-02-21

Basic Information

• Recruitment Status: UNKNOWN
• Total Enrollment: 5000 participants
• Study Classification: OBSERVATIONAL
• Study Start Date: 2019-08-15
• Study Completion Date: 2021-03-01

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.

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.

Conditions

Aging

Study Design

• Observational Model Type: CASE_ONLY
• Study Time Perspective: RETROSPECTIVE

Study Groups

Older adults and their caregivers

Older adults who have received or are receiving home care services and their caregivers

Decisional needs assessment

Intervention Type: OTHER

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

Decisional needs assessment

Intervention Type: OTHER

Assessment of decision-making needs

Interventions

Decisional needs assessment

Assessment of decision-making needs

Intervention Type: OTHER

Eligibility 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

• Minimum Eligible Age: 18 Years
• Eligible Sex: ALL
• Accepts Healthy Volunteers: Yes

Sponsors

St Elizabeth Healthcare

OTHER

Sponsor Role: collaborator

CHU de Quebec-Universite Laval

OTHER

Sponsor Role: lead

Responsible Party

Responsibility Role: SPONSOR

Principal Investigators

France Legare

Role: STUDY_CHAIR

Laval University /SE Health

Locations

CERSSPL

Québec, Quebec, Canada

Countries

Canada

References

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

Reference Type: BACKGROUND

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.

Reference Type: BACKGROUND

Lai C, Holyoke P, Plourde KV, Decary S, Legare F. What older adults and their caregivers need for making better health-related decisions at home: a participatory mixed methods protocol. BMJ Open. 2020 Nov 9;10(11):e039102. doi: 10.1136/bmjopen-2020-039102.

Reference Type: DERIVED

PMID: 33168556 (View on PubMed)

Other Identifiers

MCD315

Identifier Type: -

Identifier Source: org_study_id