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.

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

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.

 

A pioneering research program that translates research evidence into resources to improve student mental health outcomes, started at Queen’s University in Kingston, Ontario, has surpassed its goals. The resources can be sustained over years and scaled to the different needs and sizes of institutions, helping students at other Canadian and international universities.

A unique research program conducted in partnership with students brings together research to understand what university students need and what contributes to their mental health, on the one hand, and engaging, evidence-informed solutions and resources to meet those needs, on the other. This program was made possible through funding from the Mach-Gaensslen Foundation of Canada.

The funding helped Dr. Anne Duffy, the principal investigator, develop and expand preliminary research funded by the Canadian Institutes of Health Research (CIHR) into a research program called “U-Flourish.” She says the interlinked projects would have been difficult to fund through traditional granting programs.

Mental health on campus

Rising rates of mental health problems and demand for mental health services have overwhelmed postsecondary campuses in recent years. Duffy, a psychiatrist and professor at Queen’s University in Kingston, Ontario, and visiting professor at Oxford University in the United Kingdom, says data from the UK show that “young people today are more likely than in previous generations to experience common mental health disorders such as depression and anxiety.” This is particularly the case among young women. Self-harm is increasing in young people (especially girls and women), and the suicide rate has increased slightly (especially in boys and men).

“Mental health issues are too common among university students,” says Dr. Christopher Carruthers, Chair of the Mach-Gaensslen Foundation of Canada. “Research, prevention methods and treatment options are critical to address the challenge.” This is why the foundation enthusiastically supported this research with a grant of more than $700,000 over 3 years (September 2020 to September 2023).

University student mental health is a perennial issue, says Duffy. Records show concern about student mental health after World War II and during the 1960s in North America and the UK. Queen’s University held a national meeting to discuss a way forward on student mental health in 1963, and the themes raised are similar to those under discussion today. The transition to postsecondary education has always been “a leap,” says Duffy, “at a time when brain development especially in regions governing planning, self-regulation and judgment is still very much a work in progress.”

Students also face social pressures making new friends and adapting to a new environment. In addition, more so today, postsecondary students face financial and academic pressures as enrolment widens and competition increases. Duffy also pointed out that international students face the additional challenge of having to adapt not only to a new culture but also, in some cases, a learning style much different from that in their home country.

Helping students: data needed

Efforts to help students — from health promotion to care pathways — have rarely been systematically evaluated or studied. As a result, there is a lack of data about what works, for whom and how. There is also a recognized need for initiatives to fit into a cohesive framework, such as the stepped-care model used in this program. Authoritative papers and publications all point to the need for reliable, large-scale, longitudinal data that track students’ journeys and outcomes over the transition to and through university.

With a small start-up grant from CIHR, in partnership with the Rossy Foundation, Duffy’s team started addressing the gaps and needs by engaging students in conversation from entry to university using a survey administered online. Engaging students in the work has been part of the program since the beginning, with two student co-leads developing a student-led engagement campaign. When this funding ended, the Mach-Gaensslen Foundation stepped in to support an expanded translational program, allowing it to continue and evolve seamlessly.

In 2018, the U-Flourish Student Well-Being Survey started to provide data on the well-being of students and factors that put students at risk or protect them from mental health problems. The survey, offered to all incoming undergraduate students, was completed by a “phenomenal” 60% of first-year undergraduates. The students are followed with repeat surveys twice a year throughout their 4 years of undergraduate education. To date, 10,808 Queen’s students have taken the survey at least once. The survey has been adapted and launched at Oxford University since the fall of 2019 and at the University of Ottawa as both French and English versions in the fall of 2022.

The U-Flourish survey is the first longitudinal, methodologically rigorous study of its kind in Canadian and UK universities. It has already resulted in several high-impact publications in partnership with students. Among the results, it found that about 30% of incoming first-year students suffer clinically significant symptoms of anxiety and depression, and rates are higher at the end of first year. Further, social connectedness, sleep quality, exercise frequency, and substance use were identified as important targets for health promotion. The timing of the survey also allowed Duffy’s team to compare mental health before and during the pandemic, finding that students had higher rates of symptoms during the pandemic than before, but drank alcohol less, possibly because of a lack of opportunities to socialize. Cannabis use remained unchanged.

The survey results provide “one of the richest databases on student mental health,” says Duffy. “We have core measures and we can add optional or timely questions as they arise.”

Developing interventions, step by step

With this evidence base, the U-Flourish research program has taken a “stepped-care approach” to intervention, as recommended in the peer-reviewed literature. This model starts with the least intensive and moves through to more intensive support, tailored to the needs of the target population.

The least intensive step, considered a “universal approach” that should benefit most students, is an undergraduate course on mental health literacy. Duffy developed the course with graduate student Simone Cunningham, and it was launched at Queen’s in January 2021, enrolling an initial class of 50 students. The fully digital course is interdisciplinary and gives students credits toward their degree. It has been repeated every semester and is very popular. Classes are filled to capacity, and that capacity has progressively expanded to 350 students each of three terms starting in fall 2022. Almost 2,000 students have now completed the course at Queen’s.

The course is being adapted for the University of Ottawa in a bilingual format, to be offered to first-year medical students in 2023. In addition, Duffy has worked with UK colleagues to adapt the course for evaluation across six UK universities. She has also developed a brief 20-hour version intended for high school students preparing for the transition to university, being piloted at the University of British Columbia this summer.

Preliminary findings show that course participation is associated with a significant positive impact on mental health knowledge, emotional self-awareness, and stigma reduction, as well as reduced anxiety and substance use and improved sleep.

The next “step” is an app developed with students to help them monitor their well-being, provide evidence-based well-being plans they can follow and automated feedback, and suggest resources based on student’s entries. This digital well-being app on the i-Spero platform was first piloted in the winter of 2022 at Queen’s and is now being expanded in response to feedback from the pilot.

Duffy says evaluation of the pilot showed students liked using digital tools as part of their university well-being support. But many didn’t stick with it, a common finding with self-guided interventions. Students had plenty of good suggestions for improvements. “Students expressed the need for more abbreviated self-monitoring measures, a more intuitive platform to use on their phones, and for more immediate support from the app,” says Duffy, all of which are being considered in the next version of the platform.

For students who need more help, another module uses an adapted version of the same i-Spero digital platform. This module allows students and health care providers to keep track of symptom levels over the course of treatment and to plan clinic visits to meet individual needs. They can share this information with any care providers, from counsellors at university wellness centres to their family physician, to their psychiatrist. This is called “digitally supported care.”

While the grant from the Mach-Gaensslen Foundation of Canada has come to an end, U-Flourish will continue and grow, supported by a new CIHR grant (in partnership with the Rossy Foundation) over the next 4 years. Additional partner funding from the McCall MacBain Foundation will support the team to further develop and improve the digital well-being app. There are plans to bring U-Flourish to new campuses, with the University of Calgary next in line. The researchers are sharing insights from the research, in 11 research papers published to date and four underway.

Duffy describes the team’s combined research and interventions for student mental health, achieved in partnership with students and funders, as “a whole new field of research.” It’s one that will lead to better mental health for generations of students to come.