Project 2022_VILL_308030 / FRQS
Improving support for caregivers of older adults: The Living Lab Approach
Principal investigator :
Dr Olivier Beauchet, University of Montreal
Dyads of caregivers – seniors in Quebec – Family caregivers (FCs) are people who voluntarily provide significant non-professional support, on a continuous or occasional basis, to a person with whom they share an emotional bond and who is in a situation of loss of autonomy, i.e. unable to perform acts of daily living. If the support provided is too demanding and/or if the home support services and care provided by community organizations do not come to the rescue, FCs burn out. Exhaustion depends on the health of the person being cared for: the more their health is impaired, the greater their loss of autonomy, the greater the assistance required and the greater the exhaustion. This situation exposes the FCs to an alteration of its own health and autonomy, and that of the elderly person being cared for by ricochet, with the consequences of a decrease in quality of life and social isolation for the dyad.
The pandemic due to the coronavirus (COVID-19) has led to difficulties in accessing supportive care and services in the home of the senior. The resulting breakdown of resources, i.e. services and care, has increased the exhaustion of EPs, making them more vulnerable and making the EPs being cared for even more fragile. Because Quebec has 1 million seniors and some 1.3 million FCs, the lack of support for the FCs of seniors now affects nearly 25% of Quebecers, exposing them – and our entire health and social services (HSS) system – to the risk of major failure. Developing new practices to support FCs and seniors is therefore a priority.
Identified social need – Since in Quebec the majority of seniors (92%) live at home, support for FCs of seniors living at home is the social need targeted by this Living Lab Project (LL). The pandemic and its consequences force us to rethink the support of FCs of seniors. We must now: (1) focus on the physical and mental health of the dyad to better understand and reduce FCs burnout, (2) consider the social distancing measures imposed by the pandemic (3) consider FCs as partner-recipients of home-based supportive services and care, and (4) offer “solutions” rooted in the daily lives of FCs. These solutions should address actions in four key areas: (1) assessment for an understanding of the health and social condition of the dyad, (2) intervention through the implementation of adapted resources determined by the assessment, (3) information for better assistance of the FCs, and (4) training for better know-how of the FCs.
Challenges, issues and characteristics of effective and efficient support solutions – The threefold challenge related to the support of FCs of seniors is: (1) to ensure access to resources that allow seniors to remain in their homes safely while avoiding exhaustion of the FCs, (2) to do so without overloading the work of community organizations, (3) while preserving the roles and functions of the FCs. This challenge involves the implementation of accessible, simple, concrete solutions that are approved by dyads and community organizations and that can be integrated into the continuum of existing home care services and supports. These solutions must also be effective (i.e., target the right objective) and efficient (i.e., achieve the identified objective). They must, therefore, identify the “right” FC – i.e., the one in a state of burnout – and do so at the “right time” – i.e., as early as possible before burnout is too great and complications arise, in order to provide the “right interventions” – i.e., those that will be useful, usable and used.
Matching the challenges, issues and characteristics of support solutions is based on an approach that emphasizes: (1) the contribution of tacit knowledge from dyads and community-based organizations working with seniors, (2) a multi-stakeholder collaboration that provides access to diverse knowledge and is based on a trusting relationship that allows for constructive exchanges toward a common goal, (3) a “real life” environment to better understand the situations and moments of use of the co-created solutions, and (4) the involvement of the dyads in a process that must be participatory and co-creative, in order to arrive at valid solutions that are approved by all. Only the LL approach can meet all these conditions, which is why we chose LL for this project.
Research questions – Co-creating, observing usage behaviors, examining the effects of solutions supporting FCs of seniors, and deploying them in the field raises transdisciplinary and cross-sectoral research questions such as: (1) What are the interests, expectations, and needs of community-based dyads and organizations? (2) What are the barriers and levers to the use and integration of solutions in the current organization of home resources? (3) What are the proven effects of these solutions on the health, loss of autonomy, exhaustion, social isolation, quality of life of FCs and seniors, and consumption of home support resources? (4) What are the choices to be made for a successful deployment? and finally (5) How can this LL model be replicated in other Quebec territories?
The LL approach can (1) gather relevant information because it involves a multi-stakeholder participatory process, which will lead to (2) the co-creation of an early identification of the vulnerability of the FCs’ health status and the fragility of the assisted senior health status and (3) the formulation of interventions adapted to each member of the dyad, (4) which will have their approval because (5) the FC will have been informed and trained as a partner-beneficiary of the home’s supportive services and care, (6) which will result in improved support for the FC and thus (7) less burnout, less vulnerability, better quality of life and social inclusion of the FC.
Mission and objectives of the living laboratory
Mission – Supporting senior’s FCs in their role and actions to support the home of seniors is the overall goal of the LL project and its mission. Its implementation requires the definition of specific objectives (SO).
Specific objectives – We have identified five SOs. The first two define the axes of the LL. These SOs are to co-create: (SO1) a health assessment (physical, mental, and social) of dyads triggering interventions supporting FCs, and (SO2) the content of a FC information and training. In addition to these two SOs, there are two cross-cutting SOs which are: (SO3) to co-create the user interface of a digital platform that will support all the activities of the axes and (SO4) to document in the form of a guide the operational practices implemented throughout the project to ensure its replication. Finally, the last objective is (SO5) to ensure the implementation of a successful deployment – i.e. receiving a strong approval of the solutions, their wide dissemination and their durability of use over time – and to document it in the form of an implementation guide.
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