“Nothing about us without us”: Dr. Srividya Iyer’s research involves youth in services for their mental health

Dr. Srividya Iyer wins the ninth annual Royal-Mach-Gaensslen Prize

Dr. Iyer holds her Royal-Mach-Gaensslen Prize after the prize ceremony 5 December 2023 at the University of Ottawa Institute of Mental Health Research at the Royal. Left to right: Mach-Gaensslen Foundation chair Christopher Carruthers, Dr. Iyer, moderator Ian Mendes and Institute of Mental Health Research president Florence Dzierszinski.

Dr. Srividya Iyer is helping transform Canada’s services for mental health for youth and transforming lives as a result.

Dr. Iyer, a professor at the Douglas Research Centre, McGill University, in Montréal, Quebec, conducts research into the mental health of youth. Among this age group, mental illness is a top cause of disability and death. Dr. Iyer’s research aims to create mental health services for youth that are accessible, effective, and welcoming. She also innovates in mental health services for diverse, underserved youths in Canada and globally. She works with youth, family, community, health care, and government partners to change real-world practice and policy.

At a ceremony to present Dr. Iyer with the 2023 Royal-Mach-Gaensslen Prize held 5 December 2023 at the Royal Mental Health Centre in Ottawa, she said her experience working as a psychologist in India and the United States forged her path to this unique research in Canada. Seeing people with serious mental illness returning to hospital multiple times impressed upon her the importance of identifying mental issues and treating them promptly when they first arise—mainly in youth (12 to 25 years).

She said the existing mental health system is not set up for young people. Some services are not welcoming for youth. Many cut off youth services at age 18, sending youth into an adult system that may not be suitable for them. As well, the mental health system is still largely organized by diagnosis, whereas many youth are facing what she called a “mélange” of issues involving life events, mental health and substance use.

Joining her in a panel discussion was moderator Ian Mendes, a sports journalist with The Athletic and advocate for mental health, and Dr. Feodor Poukhovski-Sheremetyev, who started advocating for youth mental health when he was a youth himself and has made it his career. He is currently co-lead of a national youth advisory council for Access Open Minds, a national youth mental health network uniting youth, families/carers, researchers, service providers and decision-makers in transforming services. “How do we engage youth and other stakeholders in the design of research?” he asked. He said researchers are asking youth not only “what kind of system do you want, but what do you need to build that system?”

Dr. Iyer helped establish Access Open Minds. She said the answers to questions about youth involvement in their own mental health services can differ, depending on the community. She mentioned one First Nations Community in which youth took carpentry classes to actually build the spaces for youth. In another community, youth and their families have asked to be involved in hiring the staff who will care for youth.

The important thing, Dr. Iyer says, is that services for youth are a “learning health system” in which continuous feedback provides information on what works and what is missing, which changes the way services are delivered, evolving the system. For example, peer support is being added to services for youth with psychosis, in response to feedback from clients and community.

She says the future includes exploring ethical use of artificial intelligence to analyze large amounts of data or even youth people’s artistic expression to see if it offers clues to their mental health. Mental health services would also benefit from agile, digital systems to help them operate effectively and to determine questions like which young people need brief intervention and which need more formal services.

She looks forward to a future in which young people get the services they need in an environment that supports them to flourish and reach their potential.

Video about Dr. Srividya Iyer’s research on mental health services for youth

If you missed the live-stream of the Royal-Mach-Gaensslen Prize event 5 December 2023, it has been recorded and is available on The Royal’s YouTube channel.

Creating community, dealing with death: Ottawa’s Healthy End of Life (HELP) project

The multifaceted program transformed how communities cope with illness, loss and grieving. But the project’s end is just the beginning for better approaches to death.

Ottawa’s Health End of Life (HELP) project Steering and Dissemination Committee. Top row, left to right: Dr. Charles Barrett (committee chair), Dr. Jim Nininger, Dr. Mary Lou Kelley, Jack McCarthy. Bottom row, left to right: William MacDonald (Mac) Evans, Dr. Ian Arnold, Dr. Sarah Todd, Dr. Pamela Grassau (principal investigator).

When the communities involved in Ottawa’s Healthy End of Life (HELP) project reflect on what the project meant to them, they talk as much about realizations that their communities came to as about their achievements.

“There was an unrecognized need,” says Heather McGrath, community facilitator at Orleans United Church. At Christ Church in Bell’s Corners, community facilitator Jen Hubbard says, “Having awareness within the community has shifted the culture.”

At South-East Ottawa Community Health Centre, community facilitator Ann Gallant says, “People said they didn’t realize it was going to be so valuable.”

“It was real, meaningful change,” sums up Dr. Charles Barrett, chair of the Steering and Dissemination Committee for the project, who is with the organization that sponsored the project, Compassionate Ottawa.

Launched in February 2019, the project aimed to support people with advanced age, frailty, chronic and/or life-limiting illness to live at home or in the community as long as possible. The Mach-Gaensslen Foundation supported the project with a grant of more than $640,000 over the project’s three-year lifespan.

“In line with the mandate for the Mach-Gaensslen Foundation provided by its founders Vaclav R. Mach and Dr. Hanni Gaensslen, the Foundation encourages research that supports the mental health of individuals and enhances the resources available to provide that support,” says Dr. Ian Arnold, a member of the Foundation’s Board of Directors. “The HELP research project, using a social science research approach, focused on how the quality of life, and in particular, the psychological health, of persons at the end of life — and those caring for them — could be improved.”

“The Mach-Gaensslen Foundation was very generous in funding HELP Ottawa,” says Barrett. “It was a ‘step outside the box’ for the foundation because it was social science rather than clinical research.”

Taking action based in the community

To support those at end of life, community networks need to be in place. And those who need help must feel comfortable asking for it, according to the original HELP project, developed at La Trobe University in Melbourne, Australia.

Building the networks so that people can ask for, and offer, help, is what HELP Ottawa was about. But the project found that the starting points, routes and destinations for that goal could vary widely.

One of the many unique aspects of the project is that it was both community-based and academic, with researchers studying what worked and what didn’t — an approach called “community-based participatory action,” explains researcher Dr. Lindy Van Vliet.

Van Vliet, a post-doctoral fellow in Carleton University’s School of Social Work, says that, in this type of research, the community is involved in setting the research questions. Community members help design the research and collect and analyze the data. They also put the results into practice. “The research is meant to solve a problem that the community has identified. The community must benefit from the research,” says Van Vliet.

A report by Van Vliet, principal investigator Dr. Pamela Grassau and project coordinator Dr. Lorraine Mercer points to four main findings from the project.

Different contexts

First, the project involved four community “pilot” sites — two faith communities and two community health centres — and each had a unique context. What worked at one site might or might not work at another. “Each site approached it in their own way,” says Van Vliet. The challenges differed, and so did the solutions.

At Orleans United Church, McGrath describes “grief walks” at which parishioners experiencing grief participated in a simple ceremony and walked in the neighbourhood, silently, on their own or with a small group, to devote time to remembrance. Similarly, an outdoor ceremony on All Saints Day during the pandemic lockdown allowed people to share grief for lost friends and family for whom no funeral could be held.

At Christ Church in Bell’s Corners, the shift to online services and events during the pandemic had unexpected benefits, says Hubbard. Parishioners with serious illnesses and disabilities could participate in services and HELP-related workshops virtually. When someone died, the funeral could be streamed online for those unable to attend — both those around the corner and far-flung family around the world.

At community health centres, when professional staff lose clients, Gallant says they may experience “disenfranchised grief” — “it’s this idea that, as a worker, grief is not something you have a right to feel.” To address this, the staff at both community health centres held “good-bye” ceremonies to honour clients who had died. “It was an opportunity to get together and speak the name of people who had died,” Gallant says. Staff members shared stories and cried together.

Barriers to asking for help

Second, researchers found that social barriers prevented people from asking for help.

Encouraging people to ask for help is a struggle, says McGrath. “We grew up in a time when you sucked it up and carried on. You didn’t ask for help,” she says, speaking of the older generation in many churches.

“People are much more comfortable offering help than being the one receiving it,” adds Hubbard.

Particularly for elderly people, the project found, asking for help could lead to a loss of autonomy. Many fear that their driver’s licence will be suspended or that they will no longer be able to live independently.

At Christ Church in Bell’s Corners, the HELP team tried to foster a “community of helpers,” says Hubbard. Because those who need help may not ask for it, those who could help were encouraged to drop in on parishioners who might need help just to chat and check in. The team recognized as well that caregivers need support to care for others. In fact, supporting caregivers was a theme that emerged at all HELP locations. At Christ Church, caregivers also had difficulty finding resources and helping people navigate sometimes complex systems for medical and social support. This led the church to create a comprehensive resource guide for a wide range of issues people may be facing.

People helping people

At each site, the community carried out many activities and initiatives to improve its capacity to care for its members. Among the most successful were those where the community created a peer-led initiative.

McGrath describes low-key networks, like a widowed parishioner who met with fellow widowers for coffee. It was a not a formal “support group,” but it created bonds in the community. At Christ Church, Hubbard says that the HELP team arranged workshops offered by professionals on advance care planning and grief and loss, but facilitators at the church have now been trained to offer these to their own community.

Participants agree that there is a place for professionally led events and training, but building that capacity within the community is key.

Basing care on trust

Fourth, Van Vliet says the research shows that networks of care need to be based on trust. She gives the example of one church team that formed a partnership with a resource centre in the community. Members of the parish could call the resource centre, but they didn’t. They had concerns about who would be aware of their health and social issues. The solution was to have a volunteer from the church go with the parishioner to the resource centre, so that a trusted person was present.

As Barrett points out, social networks are often lacking as our society becomes more urban and secular. “Recreating the village is a necessary outcome,” he feels, “but a village that’s appropriate for a multicultural urban society in the 21st century.”

By the numbers

During the three-year project, there were 40 events and activities across the four sites, ranging from workshops to arts activities and tips printed in church bulletins. The research team was also busy, making 27 presentations across Canada and internationally about the project. They have had two academic publications about the project and are working on six more. There are also infographics and videos. Nine “toolkits” are designed to help other communities create programs for end of life. A magazine-format publication on the project for the public will be available soon.

For more about the many resources generated through the project, see Healthy End of Life Project (HELP) Ottawa.

Keep on HELPing

The HELP Ottawa project is meant to be just the beginning, says Barrett. From the four pilot sites, the HELP concept can be adopted in other local community organizations — in Ottawa and across Canada — and adapted to their specific needs.

Barrett says the next direction is not yet clear. “Do you go deep or do you broaden? The answer is probably ‘both.’ We can replicate the project at other sites. And there are interesting models that would involve going further, looking at the relationship between the health care system and communities.”

The project research team are planning community forums at each of the pilot sites, and a “summit” meeting in 2024, thanks to a grant from the Social Sciences and Humanities Research Council. Van Vliet says one of the project’s goals is to keep HELP going where it has taken root. “How does it continue after the research portion has officially ended?”

Part of the answer is what is often called “knowledge mobilization” — disseminating the learning from the project beyond the project sites and organizations, fostering action.

At Christ Church, Hubbard says the project has worked to “raise awareness and break down barriers in talking about harder stuff.” Now, at children’s program, community members consider whether children have suffered significant loss. At a pancake supper, members consider whether anyone coming might need people to check in with them. She says this type of caring “is something that we’ve always done, but it has put a spotlight on it.” And it’s not an issue separate from other things the church does. “It’s all of our work.”

A brave research journey for BRAVA: a group intervention to help youth who are thinking about suicide

A plan to help youth experiencing suicidal ideation, as well as their parents or caregivers, had to pivot when the pandemic started.

The BRAVA team. Top row: Nicole Sheridan (research coordinator), Paula Cloutier (co-principal investigator), Leigh Dunn (research assistant); middle row: Stephanie Drouin (research assistant), Jayme Stewart (research assistant), Ademola Adeponle (co-investigator); bottom row: Hannah Elliott (research assistant), Clare Gray (co-principal investigator), Allison Kennedy (co-principal investigator).

It started with a good idea — to offer adolescents who were thinking about suicide, as well as their parents or caregivers, prompt access to group therapy. And to do a research study to understand how well the intervention worked. But, for a group of researchers at the Children’s Hospital of Eastern Ontario in Ottawa, there were many hurdles along the way. In facing these, they had to exemplify the connection and resilience that they aim to build in the adolescents.

Today, the research is almost complete, with only a few more participants needed before the research team can compile their data. But there were points when “we had to go back to the drawing board,” says Dr. Allison Kennedy, a clinical psychologist and one of three principal investigators on the research project, called “Building Resilience and Attachment in Vulnerable Adolescents” (BRAVA).

The Mach-Gaensslen Foundation of Canada was one of the funders of the research, investing $90,000 from 2012 to 2014 and $225,000 from 2018 to 2020.

Dr. Ian Arnold, the vice-chair of the foundation, notes that, “Psychiatry is one of three areas mandated for research funding by the Foundation’s founders, Vaclav F. Mach and Dr. Hanni Gaensslen. The BRAVA research program is an excellent example of a scientifically based research program with methodologies that can be widely applied and with outcomes that provide long-term benefits for adolescents and their families.”

But that excellence was hard won. While it’s common for research on real-world patient interventions to adapt as it proceeds, this research had to deal with a huge challenge — an unexpected pandemic that moved the intervention from in-person to online. And it happened just when the team was planning to start a major study.

Building BRAVA

When the pandemic lockdown hit, many years’ work had already gone into the intervention and research plans by Kennedy and the team — co-principal investigators Dr. Clare Gray and Paula Cloutier, four co-investigators, research coordinator Nicole Sheridan and several research staff.

The principal investigators had started the project in the early 2010s, explains Kennedy. “I was doing urgent mental health assessments for young people with suicidal ideation,” which means thoughts or ideas about death and suicide. “I would see them within a week of their presentation to the emergency department. Some of them they would be much better within a few sessions.” She talked with Gray and Cloutier about getting these youth and their parents or caregivers into an intervention very soon after they visited the emergency department. “And BRAVA was born,” she says.

First, the team developed a group therapy program based on recognized forms of psychotherapy that can help people thinking of suicide, such as cognitive-behavioural therapy and dialectical behavioural therapy. Separate groups were offered for youth and for their parents or caregivers. Each group had six sessions on skills to help participants improve their connection to others and resilience. But participants can join in at any session, so there is no delay in starting to participate. The researchers also had to prepare a detailed protocol for the research they were planning.

They first tried the program to ensure it was feasible and acceptable to youth. They then did a feasibility study involving 10 families in 2010, “and we learned what would make it better,” Kennedy says. She says the program is for youth with mild or moderate suicidal ideation, which means they have thought about suicide but can manage their safety, at least with support. Youth with more severe suicidal ideation need individual support.

The researchers then wanted to launch a study comparing a therapy group with a control group that would not get the therapy, but patients balked. “It failed miserably. Once kids found out there was a 50 per cent chance of not getting involved, some didn’t want to participate.” Others who started in the control group did not complete their participation.

Kennedy says this was the first time, but not the last, the researchers had to rethink their plans. Instead of a controlled study, they did a study of how participants were doing before and after the therapy, so they were all included in therapy. This first study showed that therapy reduced suicidal ideation significantly, as well as parents’ or caregivers’ stress levels. Results were published in a peer-reviewed journal.

For a larger randomized controlled study — which provides much stronger evidence of how effective the intervention is — the researchers changed how the control group works. They offer participants in the control group some forms of support. These consist of helpful weekly text messages with coping tips and reminders of crisis resources. “There is some evidence from other researchers that this has some positive impact,” explains Kennedy. And youth and parents or caregivers in the control group can join the BRAVA program later.

The research team also reached out to other departments of the hospital and to other doctors and programs, beyond the children’s hospital, to recruit youth thinking about suicide. These included the Youth Services Bureau, the Ottawa Community Pediatricians Network, the Manotick Medical Centre, and 1Call1Click.ca, an integrated system for child and youth mental health and addiction care that links together existing services in eastern Ontario.

Pandemic pivot

Everything was in place when the pandemic forced the team to pivot.

The groups moved from in-person to virtual. Researchers did a pilot study with six families to see how the virtual sessions were working. This led to some changes, such as shortening some of the content to teach youth.

“They couldn’t cope with as much virtually,” says Kennedy. The team also ensured that slides presented virtually “spoke for themselves,” with clear content and appealing graphics.

When the study launched with virtual group therapy, the response was positive. “We wondered, with the virtual format, would participants get a sense of interpersonal connection from other participants? The feedback is that they did,” says Kennedy. She says the virtual format has also allowed participants from other towns and cities in the region to participate without having to travel.

The study is expected to conclude soon. Although the data cannot be analyzed until the study is complete, there are already signs of success. “I see great value in BRAVA,” says Kennedy. “I see that the youth stick with it and don’t drop out. That’s pretty good on its own.” Paula Cloutier adds, “Caregivers report feeling supported and less alone. They also report gaining new knowledge and skills that they find helpful in understanding and responding to their youth’s needs.”

Analysis will show whether BRAVA changes suicidal ideation in youth, measured through standard psychometric questionnaires. The researchers plan to follow up with youth for several months, asking them to complete questionnaires and looking at their medical records “to see how they are doing.”

In addition to publishing research results, the BRAVA research team has mentored many young staff members at the children’s hospital who have gone on to advance their education or careers.

What is the future for BRAVA? To this point, it has been offered as part of a study. The challenge is to make it a service regularly offered to youth with suicidal ideation and their parents or caregivers. It could be made available in the community as well as through a hospital. For example, Kennedy has adapted the content for a program called “Step Up, Step Down” at the Ottawa Youth Services Bureau. There are benefits to either in-person and virtual formats, so both may be available in future. Once the study is complete, the researchers will focus on making BRAVA content available so it can be adopted in other communities across Canada to help youth embrace a future without self-harm or suicide.

 

First annual Dr. Francis Wayne Quan Memorial Prizes awarded

The Mach-Gaensslen Foundation of Canada and the Journal of Psychiatry and Neuroscience (JPN) are happy to announce the first winners of the annual Dr. Francis Wayne Quan Memorial Prize for the best papers published in JPN over the previous year.

The prize was launched in January 2022 to honour the contributions of psychiatrist and former editor Dr. Francis Wayne Quan to the foundation and the journal.

Dr. Quan, who died 9 August 2021 after a brief battle with kidney cancer, was one of the founders and the first managing editor of the Psychiatric Journal of the University of Ottawa, the predecessor of JPN, from 1976 to 1983. He was also a director of the Mach-Gaensslen Foundation of Canada from 2016 to his death. These experiences were among Dr. Quan’s many contributions during his busy career as an eminent psychiatrist in Ottawa.

The first winning papers, published during 2022, are:

The Mach-Gaensslen Foundation of Canada would like to congratulate these winners of the inaugural prizes. For more information about the winning papers, see the announcement in JPN.