For young people receiving mental health care, a gap in care opens when they turn 18 – they must leave youth mental health services, and search for adult services. CAMH scientist Dr. Kristin Cleverley is working to improve this crucial transition for young people and their families.
After struggling with mental health problems since her early teens, and seeking help from her family doctor and multiple mental health specialists, 17-year-old Maia* receives an appropriate diagnosis and starts treatments. For the first time, Maia and her family feel relieved she has consistent mental health care and a trusting relationship with a clinician, and is on a path to recovery.
As her 18th birthday approaches, Maia and her family learn she will no longer be eligible to see her child and adolescent clinician. The need to search out new care for Maia from adult mental health services is unsettling, frustrating and frightening. For many young people and their families, this transition is extremely difficult.
“We need to ensure we don't have that revolving door of more distress,” says CAMH’s Dr. Kristin Cleverley, Senior Scientist in the Margaret and Wallace McCain Centre for Child, Youth & Family Mental Health and in the Professional Practice Office. “Young people fall through the cracks in the health care system.” It’s estimated that up to 60 per cent of youth in child and adolescent mental health services lose access to treatment at the transition to adult services. This gap may also increase mental health risks for young people.
A major challenge to closing this gap is a lack of evidence on what a successful transition is and how it can be effectively achieved. Dr. Cleverley is addressing this issue by leading the first studies of their kind in Canada into the transition experiences and needs of young people and their families. Her long-term goal is to transform transitions by co-designing services with young people and their families.
The Longitudinal Youth in Transition Study (LYiTS), which began as a pilot study in 2016, is now a larger initiative supported by the Canadian Institutes of Health Research (CIHR). Two hospitals (CAMH and SickKids) and two community mental health agencies (George Hull Centre and SickKids Centre for Community Mental Health) are participating. Over a five-year period, the research team is tracking 250 young people as they move out of child and adolescent mental health services at age 18, and examining the impacts on mental health, day-to-day functioning and health services use. In a related qualitative study supported by the University of Toronto Connaught New Researcher Award, Dr. Cleverley and colleagues are conducting in-depth interviews with young people, their families and health care professionals. The aim of both studies is to better understand the effects of transitions, what youth and parents need, and factors that foster or impede successful transitions.
In a different CIHR study, Dr. Cleverley and colleagues are using online consensus methods as an approach to learn what youth, their families and health care professionals from across Canada consider important outcomes or indicators to use as measures of successful transitions.
“We can’t just take what works in adult mental health care and apply it to young people at this stage, because there are complexities. For example, the role of the family is critical,” says Dr. Cleverley, who is also the CAMH Chair in Mental Health Nursing Research at the University of Toronto. “These years are an unstable time of life, and there are external demands – high tuition costs, unemployment and social media use – that coincide with this transition time.”
The research to date is showing “youth and families have basic transition needs – they just want to be involved in the decision, know where they are going, who they will see and when,” says Dr. Cleverley.
All of this evidence will guide the next steps – collaborating with young people and their families to design services around their needs, then evaluating their effectiveness. Two models may also be promising. One model is new one-stop-shop youth clinics for ages 11 to 25, created by CAMH and collaborators. The other is having transition support workers (see below, "Bridging hospital to community transitions for youth and their families").
“Translating this evidence into action will be the biggest challenge, because the health care system is not there yet,” says Dr. Cleverley. Still, there is keen interest across Canada and internationally in creating successful transitions for young people.
“We’re going to change the system. It’s happening,” says Dr. Cleverley. “We’re starting to have the conversations with youth, parents and clinicians about co-designing new interventions. We’re going to get there.”
* Some details have been changed to ensure confidentiality.
Bridging hospital to community transitions
for youth and their families
For many young people experiencing mental health challenges, a hospital stay may be their first contact for mental health care. Discharge from hospital services is an important transition, and may be a distressing time as these young people and their families look for community mental health services to continue care.
This is often a transition that young people and families navigate on their own.
In some settings across Canada, transition support workers are a promising approach. They act as a bridge between hospital care and community services and facilitate access to community services.
CAMH’s Dr. Kristin Cleverley is building evidence on this approach through a new study, published in November 2018 in the Journal of the Canadian Academy of Child and Adolescent Psychiatry. The research examined two transition support programs assisting young patients at three hospitals in the Greater Toronto Area. The study’s goal was to describe what a transition support worker does, recommendations for organizations interested in this model, and areas where further research is needed.
The study found that, in both programs, the transition support worker provides intensive support that begins while a patient is in the hospital. The transition support worker is the patient’s advocate, learning about their needs, then reaching out to appropriate community services. Support continues for one to six months until the patient begins care in the community. The transition support worker also facilitates the transition to adult services if the patient is turning 18.
Both programs have received positive feedback from patients and families. The next step for the programs is to develop quantitative measures to evaluate their impact.
“The transition support worker is a model that’s already designed, can easily be adapted, and functions well in these agencies,” says Dr. Cleverley. “I believe it’s a promising model to explore further to create successful transitions for young people.”
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