LEGACy

Full title of the project
ScaLing up sharEd decision makinG for pAtient-centred Care

Description
Most Canadian older adults lived in private households and want to stay at home as they age. Aging at home optimizes older adults’ health, independence, sense of well-being, and social connectedness. However, with declining health and autonomy, many older adults receive informal or formal care at home. Home care is a setting where seniors/caregivers face difficult decisions that significantly affect wellbeing. Shared decision making (SDM) is a collaborative process whereby healthcare providers support clients in making decisions informed by best evidence and what matters most to them. Although SDM results in better outcomes, most Canadians do not experience SDM and even fewer seniors. To benefit more Canadians, SDM needs to be scaled up. However, there is a persistent failure to do so as scaling up remains an understudied phase of knowledge translation. Since 2007, I have evaluated the implementation of SDM in home care with an emphasis on local/regional context and demonstrated its positive impact. I now propose to reduce knowledge gaps about scaling up SDM in home care across Canada.

Objectives
Our research question is “What are the steps to scaling up access to shared decision making for a majority of older Canadians?” Our objectives are to determine the most difficult decisions faced by older Canadians receiving home and community care and their caregivers, design and pilot a decision support intervention, and using the best available evidence on scaling up, scale up the intervention across 5 Canadian jurisdictions.

Methods
The program has 5 principal aims corresponding to separate phases. In the first phase, in partnership with patients, healthcare professionals and decision-makers, we seek a consensus on the most difficult decisions faced by older adults and their caregivers in the home care context. In the second phase, we review existing decision support interventions targeting older people in home care and select the closest match for the identified priority decision using a Delphi process; we identify behaviour changes and policy changes associated with the decision, select appropriate behaviour change mechanisms, and adapt or design a new decision support intervention. Concurrently, we review the literature on scaling up healthcare interventions using an environmental scan, a realist review, a living review and a review of reviews, and develop a scale-up plan. In the third and fourth phase, we a) assess the effectiveness, validate feasibility, acceptability and scalability of LEGACy, and b) conduct a pragmatic stepped-wedge trial to scale up LEGACy in five provinces in Canada, and ensure ongoing monitoring, process evaluation and tailoring of the scaled-up intervention. The aims 5 is to build capacity in the practice and science of scaling up and SDM. We will train scientists, empower and educate patients, and disseminate knowledge as we produce it.

Conclusion
The final outputs of the program will be a validated and sustainable intervention that addresses one of the most difficult decision faced by older Canadians in home and community care implemented across the country; a comprehensive guide to the design, implementation and scaling-up of decision support interventions; and a new generation of experts schooled in the science of scaling up.

Coordinators

Sabrina Guay-Bélanger, Centre de recherche sur les soins et les services de première ligne de l’Université Laval (CERSSPL-UL)

France Légaré, MD, Université Laval

Patrick Archambault, Université Laval

Ali Ben Charif, Université Laval

Marie-Claude Boily, Imperial College (London, England)

Emelie Braschi, University of Ottawa/Université d'Ottawa

Emmanuelle Careau, Université Laval

Angela Coulter, University of Oxford (England)

Suzanne Dupuis-Blanchard, Université de Moncton

Lyle J. Fagnan, Oregon Health & Science University

Audrey Ferron Parayre, University of Ottawa/Université d'Ottawa

Pierre-Gerlier Forest, University of Calgary

Anik Giguère, Université Laval

Ian Graham, University of Ottawa/Université d'Ottawa

Gary Groot, University of Saskatchewan

Jayna Holroyd-Leduc, University of Calgary

Paul Nolyoke, Saint Elizabeth Health Care

Allyson Jones, University of Alberta

Eric Kavanagh, Université Laval

Maude Laberge, Université Laval

John Lavis, McMaster University

Hélène Lee-Gosselin, Université Laval

Fabiana Lorencatto, London's Global University Centre Behaviour Change

Andrew Milat, University of Sydney

Léon Nshimyumukiza, Université Laval

Jean-Sébastien Paquette, Université Laval

Véronique Provencher, Université de Sherbrooke

Vardit Ravitsky, Université de Montréal

Louis-Paul Rivest, Université Laval

Geneviève Roch, Université Laval

Dawn Stacey, University of Ottawa/Université d'Ottawa

Sharon Straus, University of Toronto

Annette Totten, Oregon Health & Science University

Holly O. Witteman, Université Laval

Luke Wolfenden, University of Newcastle

A large team of knowledge user

 

Institut Recherche en santé du Canada (IRSC)

Canadian Institutes of Health Research (CIHR)

Start and end dates for project financing

2018-2025