In our previous blog, we shared why lived experience must be at the centre of efforts to improve long-term care. But what does it actually mean to centre lived experience?
In this post, we share our engagement process and what we learned along the way:
When we do research at Health Justice, we start from the stories of lived and living experience. These stories contain more than information, they also contain essential evidence and wisdom. Centring lived experience is about inclusion and accuracy. Decision makers within healthcare systems risk misunderstanding the impacts of their decisions. They risk designing solutions that do not address the realities people face. Listening to lived experience is an ongoing, reflective practice that leads to a deeper understanding of what is happening, the impacts, and how they can meaningfully be addressed. This is critical towards improving healthcare systems and strengthening human rights within those systems.
In many systems, lived experience is treated as one form of evidence among many. It is often positioned alongside and secondary to traditional research findings, policy analysis, and “expert” opinion. Engagement processes are often designed around efficiency, timelines, and predefined methods. But when the goal is to truly centre lived experience, a different approach is needed.
In our approach, lived experience expertise is at the centre. It is the truth of the impacts of the system and insight into what needs to change. Other forms of analysis, such as legal, policy, or systemic research, extend from and support that expertise. Without lived experience expertise, the researcher misses the point.
Meaningful engagement can’t be a transactional process. Many people who share their stories do so because they want something to change, and they hope that their stories can contribute meaningfully to that change and prevent harm for others. Researchers who approach their work in a transactional way overlook the harm done to people who are sharing their stories. Our responsibility is to hold those stories, listen to them and treat them with the care they deserve. Engagement is relational.
This shapes how we approach everything, including consent. Consent is often understood as a one-time process, like signing a permission form. To approach consent in a relational way, it must be ongoing. It involves us being clear with people about what our intentions are, how their stories might be used, and what they can honestly expect. This ongoing consent process builds trust.
We began this project by building an engagement framework grounded in Health Justice’s past work with people with lived experience, and shaped by a few core ideas:
From there, we mapped out a process. We thought about how we might find people, how we would build relationships before asking anything of them, and how we could tailor each engagement to the individual. Although we had a framework at this stage based on wisdom shared with us from past engagement with people with lived experience, we knew it needed to be refined for the context of this project, and for long-term care.
Before moving into broader engagement, we spoke with three advisors with lived experience. Each had experience with dementia, and each had navigated the medical system in different ways. They helped us understand what it actually feels like to be in long-term care, and what makes engagement possible, or not.
They told us that trust is everything, that conversations need to feel human, that timing matters, that environment matters. They shared that tone, body language, and small gestures matter.
They also helped us continue to consider consent as something that lives inside a relationship and needs to be checked and re-checked over time. Our advisors reminded us that many people in these systems, and their caregivers, are exhausted, distrustful, and often carrying experiences of harm. Their guidance reshaped our approach in very real ways.
What the advisors shared with us showed that more traditional academic research models that often rely on structured methods and predefined timelines do not fit the circumstances. While those approaches can be valuable, they do not always create the conditions needed for people to share experiences that are complex, painful, or shaped by systemic harm.
We hoped to connect with people who had direct experience of involuntary treatment in long-term care settings. We expected this to be challenging, but what we did not fully anticipate was just how difficult it would be.
We had heard from people connected to long-term care systems that they were navigating deep fatigue, grief, and systemic distrust. We understood that participation needed to lead to something meaningful. But even with this grounding, the extent of the barriers challenged us.
Individuals
As the project unfolded, we began to see a pattern. It is exceptionally difficult to reach individuals with direct lived experience of involuntary psychiatric detention while residing in long-term care. In many cases, the people most directly affected are the hardest to reach. This can be because:
As a result, we were not always able to connect with the participant group we had originally envisioned.
Individuals through caregivers
Reaching individuals with lived experience through their caregivers was also challenging.
Some barriers include:
Caregivers
Engaging with caregivers directly also came with more barriers than we expected. Caregivers, too, are often navigating intense and ongoing strain.
Often, it is even difficult to name the human rights impacts of these systems while they are actually happening. In many cases, it is only after a loved one passes away that family members or care givers have the time and space to process and question the trajectory of decline and name the harms done.
All of this required us to be flexible and adapt our approach to better reflect how people are experiencing the system.
These conditions shape what is possible in engagement. They also reveal something important: the barriers to participation are not incidental. They are part of the system itself.
We began trying multiple ways of listening. Sometimes that meant speaking with caregivers and understanding the system through their experience. Sometimes it meant connecting with people after they had left long-term care or reflecting on past experiences. Often it meant recognizing that the absence of certain voices was not a failure of the process, but a reflection of the system and its impacts on people.
Connections did not always happen where and how we expected them to. Sometimes, a single conversation opened the door to others. Sometimes, caregivers shared perspectives that revealed new dimensions of the system. Some people shared detailed personal stories. Others spoke about patterns they had observed over time. Some conversations focused on specific moments of harm or exclusion.
Each time we talked to someone taught us something. This iterative nature of the work became one of the most important learnings of the project.
Taking account of barriers to participation, continuing to centre lived experience required flexibility and an openness to change our approach. It required finding alternative ways to centre the person and their story.
While we were only able to speak to a small number of people with direct lived experience, we engaged with caregivers who could paint the picture of their loved one’s experiences. Rather than shifting our project focus to centering the experiences of caregivers themselves, we maintained a focus on the personal stories and values of those who experienced long term care. We worked to understand who they were, how they lived, what was important to them, and the impact of the system on their human rights.
There is no single pathway to hearing lived experience. Listening requires ongoing reflection, adjustment, and responsiveness. A flexible process is necessary because it was the only way to centre lived experience. With more rigid processes, we would miss understanding all there was to learn about how people are experiencing coercion and detention and the impacts of the long-term care system.
What does it actually mean to centre lived experience? It means being flexible enough to interrogate and adjust the process at every step, while maintaining focus on the person at the centre.
Why is this important? If our goal is to have healthcare systems which uphold the dignity and human rights of all people, we can get there through a deep understanding of what people experience through their own voices.
This blog post was written in collaboration with Health Justice.
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