How residents and families are part of shaping long-term care research at Fraser Health

Photo: Janice Sorensen, Catherine Youngren, and Annette Berndt. Catherine and Annette are members of Fraser Health’s Long-Term Care and Assisted Living Research Partners Group as family care partners.

 

The COVID-19 pandemic put a spotlight on the need to improve the quality of care for those living in care home settings. But what questions should care providers and researchers ask to improve care? And what topics are most important to residents, their families and friends, care home staff?

Dr. Janice Sorensen, leader for clinical research in long-term care and assisted living at Fraser Health, was determined to find out.

Sorensen and her team recently received a Michael Smith Health Research BC Convening & Collaborating (C²) award to co-develop relevant research with people who would directly use and benefit from it.

“The pandemic significantly showed a clear need for the voices of residents and their family to inform positive change,” says Sorensen.

The C2 award enabled Sorensen’s team to convene discussions with a group of residents, family and friend carers, staff, volunteers, physicians, nurses, leaders and researchers in care communities at Fraser Health. Together they determined the most important research questions facing people that live and work in care homes,

Sorensen shares how the collaboration went and plans for ongoing projects to answer the research questions that matter most.

What were the most pressing research priorities identified? 

Clear communication between residents, their families / essential care partners, care providers and site leadership in long-term care and assisted living throughout a person’s stay in care. This includes: 1) regular updates between the consulting physician, the resident, their family and care team, and 2) continuous connection between residents and family, even during situations such as the COVID-19 pandemic, when in-person visits might not be possible.

What ongoing or planned research projects aim to address the top research questions identified during the collaboration process?   

The research priorities identified through this project have since informed two additional studies funded by the Canadian Institutes of Health Research. One is evaluating virtual physician care, and the other virtual family visits in care communities at Fraser Health. 

How significant was it to have research users on the team? 

It was essential. Nine diverse research partners with lived or living experience (as residents, care partners, volunteers, and staff) had key roles in leading the direction and conduct of the project.

The researchers in the team were motivated to engage meaningfully with the partners to listen and change course as needed and enable a safe space for open discussion. Researchers became aware of the skills and talents of many partners, such as writing narratives and developing graphic representations, that could enhance the priority setting process.

Can you share how the success of the research outcomes will improve care in long-term care and assisted living communities? 

A key learning from this project has been that research priority setting is a journey, not a destination. It requires strong relationships and open dialogue between researchers and research partners with lived and living experience. The co-created research priority setting process is integral to inform impactful research initiatives and partnerships with Fraser Health’s Long-Term Care and Assisted Living Research Partners Group.

What was key in bringing researchers and research users together?  

The discussions allowed for a range of viewpoints to be expressed and respected. It thus helped develop mutually trusting relationships and meaningful partner engagement of residents, family/friend care partners, staff, and researchers.  

This led to the co-creation of an ongoing development process to identify top priorities the group wanted to bring to the attention of the Fraser Health leadership. This also acknowledged the value of lived experience in research. 

Most significantly, the research priority setting process we used continually aimed to identify timely, relevant research topics for greatest value and impact for research users in the sector. 

A strong foundation was established for continued future long-term care and assisted living research partnerships and activities. 

Learn more about Dr. Janice Sorensen. 

Read about the CIHR Catalyst Grant-funded research projects evaluating virtual physician care and virtual family visits. 

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Dr. Janice Sorensen is leader for clinical research in long-term care and assisted living at Fraser Health. She provides leadership in managing capacity-building, collaboration, support and execution of research grounded in integrated knowledge translation across the sector in the region. Sorensen is a registered dietitian with experience working clinically in long-term care and assisted living. “Our team is tremendously appreciative for the C2 funding, which has had far reaching impacts on our program of research through authentic, ongoing engagement with diverse patient partners and research users in Long-Term Care and Assisted Living. This type of funding is so valuable and impactful.”