Clinical trial NCT04327830: What Older Adults and Their Caregivers Need for Making Better Decisions at Home
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
Study type: OBSERVATIONAL
Overall status: UNKNOWN
Conditions: Aging
Keywords: Shared decision making
Home care
Lead sponsor: CHU de Quebec-Universite Laval
Sponsor class: OTHER
Collaborators: name: St Elizabeth Healthcare
First posted: 2020-03-31
Enrollment: 5000
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: yes
Observational model: CASE_ONLY
Time perspective: RETROSPECTIVE
Sampling method: NON_PROBABILITY_SAMPLE
Study population: Older adults who have received or are receive home care services (and their caregivers)

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.

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

Primary outcomes:
measure: Decision making needs of older adults who receive home care services and their caregivers.
timeFrame: About 60 minutes
measure: What health and social care providers need to support older adults and their caregivers with making decisions.
timeFrame: 5 to 10 minutes
Secondary outcomes:
measure: -Health and social care providers opinion how often older adults faced difficult decisions. -Shared decision-making. -Others participants involved in the decision making.
timeFrame: 5 to 10 minutes
Other outcomes:
Locations:
city: Québec
country: Canada
facility: CERSSPL
state: Quebec
Study officials:
affiliation: Laval University /SE Health
name: France Legare
role: STUDY_CHAIR
References:
citation: 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
citation: 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.
citation: 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.