If you’re supporting a loved one hospitalized with a mental health condition, Elly Litvak and Shannon O’Neill of CMHA Toronto’s Family Navigation and Support program want you to know you are not alone.
For hundreds of people whose loved ones are involved in psychiatric care at St. Joseph’s Health Centre, Elly and Shannon are companions, guides, and advocates for the kind of support that is often unavailable to families.
For most people, it can be scary, confusing, and frustrating to interact with the psychiatric health care system. Often, there has been a long lead-up to the hospitalization, or perhaps a series of hospitalizations over months or years. There is frequently a crisis point where hospitalization is deemed the only option to ensure safety. There may be a cycle of stabilization and relapse where frequent hospitalizations become part of the rhythm – albeit a disruptive one – of family life.
Families often find themselves at sea in a system that is poorly designed for recovery or healing and focused more on containment and compliance – one that leaves them feeling marooned and disempowered.
Focusing on families in the recovery journey
When approached to establish a family navigation program in partnership with St. Joseph’s Health Centre, Elly was initially reluctant. “I had been in mental health for almost 20 years, working mostly in recovery-oriented programs where I intentionally avoided going to the hospital,” said Elly. But her research suggested there was a space for a family navigation program to work without being embedded in a healthcare institution. She created the program, recruited Shannon as a family navigator, and within the first year the program had easily met the mandate of supporting 100 families and reducing return emergency room visits for individuals experiencing a mental health crisis.
The program is founded on a deep conviction that not only do families need and deserve support themselves during what is almost always a traumatic experience, but that strengthening family members’ resilience and ability to cope aids in their own and their loved one’s recovery.
Lived experience: The foundation of empathy and effectiveness
It is their lived experiences – Elly as a psychiatric survivor and long-time advocate in the recovery movement and Shannon, whose sister experienced mental health issues and hospitalization – that enables the Family Navigation and Support team to build instant rapport with families.
“When we’re talking to a family, we say things like ‘I'm wondering if your loved one has said this to you …’ and families reply ‘Yes, that's exactly it.’ We can put ourselves into that perspective so quickly, and it right away makes the person feel they are not alone,” Shannon said.
This insider’s view, which combines empathy for families and their loved ones with in-depth knowledge of the psychiatric system, allows Shannon and Elly to advocate for families within that system. They help normalize the family’s experience, ensure their needs are considered, and provide them with information, resources, and guidance to support them directly while their loved one is in the hospital and after they are discharged.
We make it clear from the outset that we believe that if one person in the family is struggling, then the whole family is struggling. The first question we ask is ‘how are you, as a family member, taking care of yourself? Let’s start there’.
The gap between expectations and reality
One of the first challenges is to help families understand that what they thought might happen in the hospital is often not the reality. Shannon explains that there is a lot of education and validation involved in the first days or weeks of their work with families. She knows how overwhelming it can be especially if it is the family’s first experience “meeting the beast of mental health care. There's a lot of information coming at you. Everything you thought would be true doesn't really happen,” said Shannon.
Elly stresses the importance of ensuring, in the early stages, that there is a discharge meeting planned. This lets families know that “they have a voice throughout the process, and particularly at that discharge meeting, to ensure that their wishes and their needs are met upon discharge,” she said.
Shannon’s own experience illustrates both the problem families regularly face and the solution that the Family Navigation and Support program offers. “Like everybody, I thought that the hospital would fix [my sister],” said Shannon. “I thought that was their job, so I was fighting for that but she was discharged with no plan,” she said. While Shannon knows that she probably would not have been able to change the hospital’s decisions, she now realizes that, if she had an ally to call on, she may have had more influence over those decisions.
We're there to listen and advocate, advocate, advocate … to empower families to know that they have a voice throughout the process.
Dispelling stigma by reframing
Shannon met Elly after her sister was released from the hospital (before Shannon was employed as a family navigator). The first thing Elly helped her understand and let go of was the shame and stigma that too often accompanies mental health diagnoses and treatment.
“There is a lot of stigma about the things that my sister was going through, out there in the world and in our family as well,” Shannon said. “The first thing Elly did was reframe it, saying ‘it sounds like your sister is in a lot of pain.’ I couldn't really identify with things like mental illness or addiction, but I could wrap my head around someone being in pain. It just took away all of the negative narratives, all of the judgement. It humanized it and normalized it.”
Working with family navigators, families gain access to a wealth of information, resources and options that otherwise would not be available to them. They learn new ways to think about and cope with any challenges that emerge so that they can draw upon options other than re-hospitalization to aid in their own and their family member’s recovery. Family navigators support family members, for example, to “assess, as a family, the difference between ‘danger to themselves and others’ and what may be just a really big emotional outburst. We can help family members show up in those moments and be more effective,” said Shannon.
A delicate balance: Advocating for systemic change
The program is committed to staying true to its roots as a support service that is independent of the hospital, staffed by people who can counsel, educate, and advocate for families. Doing that requires balancing sometimes conflicting goals or philosophies and acting as a change agent within a highly structured system. The hospital-centric approach to mental health care, which relies heavily on diagnosis and medication compliance, is often at odds with the community or peer-based recovery approach.
Step by step, “we have been able to make headway into educating hospital staff on our program and on family-centred support and care, looking at families and how to best deal with families. Early on, we did a training video and piloted some workshops with staff. We now have staff who champion our program and the recovery model. Slowly – very slowly – they are tweaking their programs in an authentic recovery way,” Elly reports.
Monica Figueiredo was in on the ground floor of this work. A clinical educator in nursing, mental health and addictions at St. Joseph’s Health Centre, Monica helped develop recovery training for caregivers and piloted it. One of the questions they asked people during a pre-pilot survey was whether they knew what a recovery framework was – and the answer, at that time, was 'no’.
This has now started to change. “We really got the patient voice as to what they needed,” Monica said, which has informed some of the changes she has implemented to better align with the recovery and engagement model of the Family Navigation and Support program. “Our day hospital is now called ‘day treatment’ so people are not going to a hospital, they’re going for therapy. Our injection clinic is now called ‘medication and wellness’. We have a GP for people that don't have a GP so that there's somebody making sure that we're keeping people well. We’re really looking at the fundamentals of recovery.”
There is still a way to go to bring this significant shift to the larger hospital context, but change is on the horizon. Monica is planning to bring the recovery focus forward in an upcoming strategic session where she’ll ask "what's our philosophy of care? Are we recovery? Are we trauma informed? I don't want to just use buzzwords, I want to find out what we need to do to truly make [our work] recovery and trauma informed,” she said.
Families benefit from the shift to a recovery focus too
It’s not just institutions, psychiatrists, and medical team members who are being shown a new way to think about and deal with mental health issues and the family’s role. Families themselves benefit from the reframing of mental health treatment away from the strict medical model to a recovery model that centres the family’s needs and care alongside that of their loved one.
Diagnosis and treatment compliance are frequent flashpoints between families, their loved ones, and the hospital system. When someone gets diagnosed, they're often devastated. When managing conflicts that arise, “we take the approach that we're collaborating and we're learning from each other. People get frustrated and we validate their experience in a respectful way,” said Elly, adding “we’ll say, ‘we're really sorry that you got that message’ and then suggest there’s another way of looking at it.”
Elly emphasizes that it is at these critical points where her own and Shannon’s lived experience gives them a connection with families who may have a different point of view than their loved one: “A lot of families say, ‘my loved one is in denial. They won't take their medication or they won’t accept their diagnosis’. I can validate how difficult that is for a family member because I understand what they are hearing from the medical side. And I can put myself in their loved one’s shoes and tell that family member what a diagnosis represents to their loved one. What taking medication represents to them, which may be informing their resistance.”
We work on helping people understand their own perspective and how to ground themselves to be able to hear their loved one’s perspective, even though it doesn't necessarily jibe with theirs. Their perspective and their loved one’s perspective are not in competition. They can both be true and they both are true.
Along the recovery journey, the families who work with Shannon and Elly learn where and how to have a positive influence, and when to “step back and let their loved one fumble along the way, so as to gain confidence in making changes in their lives,” said Shannon, adding: “My analogy is that you [the family member] want to be the bumpers in the bowling alley preventing the ball from going in the gutter. You’ve got to let people bounce along the lane. Maybe they’ll hit a pin, maybe they won’t … but just, no gutter balls.”
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