Advancing the Care Experience in PAlliative care patient Transitions from subacute to Home – Bruyere (ACEPATH-Bruyere): Co-designing an intervention to improve patient and family caregiver experiences
About the Project
As Canadians living with frailty in sub-acute facilities approach the end-of-life, the focus of their care often shifts to comfort and they seek to return home. Sub-acute care settings provide specialized care to patients with long-term and complex medical conditions who do not require the intensity of care in acute care settings. Patients in sub-acute facilities often have longer periods of frailty, deterioration, and decline, compared to those in acute care. Few interventions have addressed sub-acute-to-home transitions, and among existing interventions, no Canadian interventions focused on end of life, nor were they developed in partnership with patients and family caregivers. Accordingly, interventions may not capture the components needed to improve outcomes that most matter to patients in sub-acute care near end of life and their family caregivers.
This project aims to involve patients living with frailty receiving a palliative approach to care, their caregivers and healthcare providers/workers at Bruyère Continuing Care (a sub-acute facility) as participants in the design of a sub-acute-to-home transition intervention. We will guide participants through workshops to design and iterate the intervention and identify and select metrics for an evaluation. The most successful concept from the workshops will undergo refinements and will be our recommendation for a study to test if our intervention will work when put into practice. Our approach seeks to develop an innovative intervention that will make the sub-acute-to-home transition seamless and patient-centred, while improving the end-of-life care experience for Canadians living with frailty.
Project Team
Principal Investigators:
Sarina Isenberg – Bruyère Research Institute
Jill Rice – Bruyère Continuing Care
Co-Investigators:
Shirley Bush – University of Ottawa
Edward Fitzgibbon – Ottawa Hospital Research Institute
Paul Hebert – University of Ottawa
Kerry Kuluski – Trillium Health Partners
Peter Lawlor – University of Ottawa
Peter Tanuseputro – Ottawa Hospital Research Institute
Daniel Vincent – University of Ottawa
Colleen Webber – Ottawa Hospital Research Institute
Kirsten Wentlandt – University of Toronto
Camilla Zimmermann – Princess Margaret Cancer Centre
Knowledge Users:
Susan Blacker – Ontario Palliative Care Network
James Downar – The Ottawa Hospital
Nathalie Gilbert – Home and Community Care Support Services Champlain
Mona Kornberg – Caregiver Partner
Claire Ludwig – Services Champlain
Denyse Lynch – Caregiver Partner
Maya Stern (Ayelet) – Patient Partner
Debbie Watt – Home and Community Care Support Services Champlain
Collaborators:
Nicole Dunlop – Bruyère Continuing Care
Natalie Ernecoff – RAND Corporation
Vinay Kumar Mysore – Parsons School of Design
Madeline Lamanna – Bruyère Research Institute
Karen Oikonen – The Moment
Melanie Spencley – Home and Community Care Support Services Champlain
Marianne Weiss – Marquette University
Keywords: home and community care; palliative care; end-of-life care; co-design; patient and caregiver engagement; health services research; frailty; feasibility study; mixed methods; care transitions
Background
As Canadians living with frailty in sub-acute facilities approach end-of-life, the focus of their care often shifts towards comfort, and they seek to return home. This transition can be distressing and logistically challenging. When these transitions are poorly handled, they negatively impact the physical, psychosocial, and spiritual well-being of patients and family caregivers.
Rationale
There are few interventions that have addressed sub-acute-to-home transitions, and among existing interventions, no Canadian interventions focused on end-of-life, nor were interventions developed in partnership with patients and family caregivers. Co-design involves partnering with patients, caregivers, healthcare providers, and decision makers to create an intervention informed by all groups of stakeholders, while also tailoring it to the Canadian sub-acute-to-home setting.
- Co-design workshop (CDW) development. Develop research materials to be used in workshops to share key findings from prior research and lived experience with workshop participants.
- CDWs. Patients living with frailty who experienced a Bruyère-to-home transition while receiving a palliative approach to care, family caregivers, and healthcare providers will participate in workshops. Outputs from the workshops will include descriptions of transition interventions, expected impact, and potential
measures of success. - Low-fidelity prototype testing. CDW outputs will be developed into 4-6 low-fidelity prototypes of interventions that expert stakeholders will review.
- High-fidelity prototype testing. 2-3 prototypes from the previous phase will be developed into high fidelity prototypes, which participants will validate or reject.
- Co-design an intervention (ACEPATH) aimed at improving the sub-acute-to-home transition for adults living with frailty receiving a palliative approach to care and their caregiver(s).
- Identify and select key metrics to measure the success of ACEPATH, which are patient and family caregiver-focused and health system relevant.