January 29, 2016 - Just when a young person being treated for mental illness may need help the most, he or she is often transferred from youth-focused programs to adult services.
“Age 18 is such a critical period for a person as they move into adulthood,” says Dr. Kristin Cleverley, CAMH Clinician-Scientist in the Margaret and Wallace McCain Centre for Child, Youth & Family Mental Health. “It’s also typically the time when a young person who is in child or adolescent mental health treatment programs often needs to transition to adult care.” This line in the sand is sometimes drawn by program and funding decisions rather than client needs, she adds.
“We do know there is a large drop-out rate from mental health treatment at this milestone; it’s also a high-risk age for suicide among young people.”
CAMH Change Agent: Dr. Kristin Cleverley – Tracking treatment transitions.
What is not well understood are the specific factors that may enable – or undermine – success during that transition, she said.
In February, Dr. Cleverley is launching the Longitudinal Youth in Transition Study (LYiTS), working with CAMH co-investigators Dr. Peter Szatmari, Chief of the Child, Youth and Family Program and head of the Cundill Centre for Child and Youth Depression at CAMH, and Dr. Joanna Henderson, Director of the McCain Centre. The study will track 135 young clients of CAMH and other mental health services (both inpatient and outpatient programs) as they move through the age 18 milestone.
Participants, starting at age 16 or 17, will be assessed each year over a period of three years. The assessment will look at their mental health symptoms, life functioning, service utilization, readiness to transition to adult services and other factors. The study is funded by the McCain Centre at CAMH, and through Dr. Cleverley’s role as the CAMH Chair in Mental Health Nursing Research at the University of Toronto.
Defining an effective transition
For those who do make a transition to adult services in the mental health system, “we will be able to pinpoint elements of a good transition,” says Dr. Cleverley. These may include factors such as appropriate hand-off of client records, and collaboration between the youth and adult services.
Meanwhile, in a related qualitative study, the research team will conduct more in-depth interviews with young people and their family members to identify key themes both before and after the transition. “There’s an enormous amount of change occurring simultaneously in the lives of young people at this age with finishing high school, transitioning to work and/or post-secondary education, and changing living situations,” says Dr. Cleverley. Yet as they move towards independence, young people confronting mental health problems often need to depend even more on family members and health providers.
What makes for an effective treatment transition? The research team will formalize a set of validated measures by seeking input not only from mental health caregivers but from youth, their family members, community and hospital service providers, academic partners and policy makers, Dr. Cleverley says.
The case for change
There are some hard facts behind this inquiry into the transition from youth to adult mental health programs, says Dr. Cleverley:
- Treatment drop-out rate: An estimated 50 per cent of youth in child and adolescent mental health services drop out at entry to adult services
- Prevalence: Mental health challenges surge in adolescence – an estimated 35 per cent of 16-year-olds have experienced a mental disorder, and most adult mental illness have their onset in adolescence.
- Suicide: Suicide is the leading cause of non-accidental death among youth aged 15-24.
There can be a shift in the culture of treatment programs for a young person transitioning to adult care, says Dr. Cleverley. For example, youth-focused treatment may still be more appropriate for a 20-year old, but that person may now be receiving services geared to adults of a wide age range.
A personal motivation
Dr. Cleverley also has a personal motivation for this research. In 2011, she lost her younger brother, David.
A talented athlete and sometimes thrill-seeker (he was nicknamed “Superman” as a boy) David had started a career in corporate sales in the high-tech sector in Ontario. But he was unsettled, and continued to battle depression, anxiety and alcohol problems.
“When he sought treatment, he bounced around different programs and services, visited many emergency rooms, and his diagnosis kept changing,” Dr. Cleverley recalls. “Looking back, it was such an incredibly stressful time for him and our family. It was clear to us that some of the programs were not appropriate for my brother at his stage in life. Certainly, a youth-focused program would have been more appropriate but, given his age, he was sent to adult programs.”
David pursued a life-long dream and moved to B.C. in the fall of 2010; however, rather than finding the peace he was hoping for, his mental health deteriorated and he was hospitalized after attempting suicide. After a brief hospital stay, David was discharged without a follow-up plan or aftercare. With the support of his family, he decided to stay in B.C. and “lead a simpler life.” He joined his cousin’s church, found factory work, and quit alcohol. Dr. Cleverley recalls that while David appeared to be doing better, he was still struggling with his mental health, and they began discussing next steps to access treatment. However, David didn’t get that chance.
After a floor hockey game with friends at a church retreat, the group decided to cool off by diving off the cliffs into Cultus Lake, B.C. David, being Superman, ascended higher than the others. He hit the water awkwardly and was tragically killed. He was 26 years old.
“One of the hardest things for my family was that we couldn’t help him get the continuity of mental health care he needed at a critical time in his life,” says Dr. Cleverley.
Making an impact
In addition to her current academic research role as CAMH Chair in Mental Health Nursing at the University of Toronto, Dr. Cleverley brings significant expertise with children and youth with mental illness, to her latest research initiative. As the former Director of Practice Research and Innovation at CAMH, she co-directed a care collaborative with Ryerson University, led the development of a tool to better understand the staff mix in a mental health context, and developed fellowships to strengthen academic practice in nursing.
Results of the new study will provide “a foundation for decisions on effective clinical care for transitional-aged youth in the future,” says Dr. Cleverley. That could involve changes to care pathways, collaboration between youth and adult services, youth-friendly service design – such as service on evenings and weekends – and ways to make transitions smoother. “In collaboration with other CAMH researchers, we’re also seeing the potential for technologies such as apps that can engage younger clients at an important part of their lives,” Dr. Cleverley says.
“Through this research,” she says, “I want to make an impact on services and care for youth, their families, and service providers.”