Aging is complex and unique to every person. While researchers and experts in the field of aging may have decades of experience and knowledge, residents have unique and valuable firsthand experience of aging themselves.
That’s why the Ontario Centres for Research, Learning, and Innovation (CLRI) at the RIA prioritizes co-design – the inclusion of community members, specifically older adults, as equal collaborators – when developing programs and courses. Persons with lived experience bring unique and valuable insights to the conversation. They provide personal perspectives and they represent the voices, views, and experiences of older adults and care partners.
One such co-designed course is our long-term care (LTC) leadership program, which includes a course on residents’ rights – Respecting and Promoting Resident Rights in LTC. The Residents’ Bill of Rights includes 29 rights, divided into four sections. This important document ensures all people living in long-term care receive safe, consistent, and high-quality care that they are empowered to direct. However, the bill as written is basically a checklist of rights, not a road map for team members wishing to apply them in real life. That’s where co-design comes in.
“Team members saw residents’ rights as a simple, numbered list of items to check off,” said Lisa Hughes, Education Manager at the Schlegel-UW Research Institute for Aging. “Due to the demands of their work, and the specialized skills needed to provide crucial care, team members generally need to be task-oriented. But residents’ rights are everywhere in the home; they are part of every single interaction and we wanted to capture that reality in the course to better support team members and improve the resident experience.”
To kick off the co-design process, we reached out to the Ontario Association of Residents’ Councils (OARC) to get their perspective and advice. Through this partnership, three residents who live in long-term care volunteered to participate in a course review.
These residents were able to bring the rights to life, and provided specific examples of how they would like the resident rights to be promoted and respected throughout their home. Residents shared their experiences of both where they felt their rights were being respected and at times where there could be improvement. It was clear that these experiences happened throughout their home (resident room, dining room, hallway, activity room, etc.).
During the consultation, Sharon Cooke, past president of the OARC, encouraged LTC team members to put themselves in the shoes of residents and shared powerful examples from her own experiences.
“I feel very disrespected when a team member is assisting me with eating and rushing me along; it makes me feel helpless and I lose my appetite. When I hear team members complaining that they’re tired, I feel like I’m a burden to them. When I hear team members speaking [a different] language while providing my personal care, I feel invisible.”
Cooke also shared positive experiences that go a long way.
“When team members take the time to introduce themselves and wear their name tags, I feel comfortable and I feel I can develop trusting relationships. When I see team members making an effort to get to know my unique likes and dislikes, I feel grateful and appreciative. When I hear you sharing your own experiences and thoughts, I feel that I can trust you like my own family.”
Resident voices helped shape the course, as we began to look for ways to demonstrate other positive experiences. Some of the examples included: posting information in the hallway at an accessible height for someone in a wheelchair, providing a private and quiet space to pray, having fresh food and snacks available and accessible throughout the day, and allowing residents to choose where to sit during meals. In the end, the residents helped inform 28 examples of how to promote and respect each right.
This collaboration has not only improved the Respecting and Promoting Resident Rights in LTC course but has also helped bridge the gap between the way team members and residents understand and experience rights. We plan to continue engaging residents in the development of future courses, including one on resident mental health.
Co-design and the inclusion of community members with lived experience is crucial for creating programs and courses that accurately reflect the experiences and perspectives of older adults. We believe in the value of their voices and will continue to involve them in our work.
Orientation e-Learning courses were developed as part of the Ontario Centres for Learning, Research and Innovation in Long-Term Care (Ontario CLRI) and can be found at learn.clri-ltc.ca.