Focus

Growing pains

Struggles and innovations in serving transition-aged youth

By Melissa Vloet, Simon Davidson and Mario Cappelli

The mental health of young people is increasingly fragile. In Canada, one in five children and youth are identified with a mental illness. It’s a trend reflected in other countries. Policy leaders and researchers with the European Commission and the U.S. Department of Health and Human Services predict that mental illness will be one of the five most common causes of morbidity, mortality and disability among youth by 2020.

Statistics about transition-aged youth are particularly worrisome. According to a 2002 Statistics Canada report, suicide is the leading cause of non-accidental deaths among 15- to 24-year-olds, accounting for 24 per cent of all deaths in this age group.

Yet only a fraction of youth with mental health issues receive the supports and interventions they need. In response to this critical issue, the Mental Health Commission of Canada (MHCC) has identified child and youth mental illness as an area of key importance and is advocating for resources to improve prevention, preserve the well-being of young people and build capacity for a more resilient youth population and a healthier future for all Canadians.

Prioritizing youth mental health also reflects best practice standards developed by international experts in youth mental health like Dr. Patrick McGorry in Australia. In a 2007 issue of the Medical Journal of Australia, he writes, “Early, effective intervention, targeting young people aged 12–25 years … is required if we wish to reduce the burden of disease created by these [mental] disorders.”

Youth between 16 and 25 moving to adult mental health services have been identified as a particularly vulnerable group for four reasons. First, the peak onset of mental illness occurs before age 25, and evidence indicates that youth who don’t get treatment become “more vulnerable and less resilient” over time, according to Brenda Wattie, a member of the Canadian Mental Health Association Ontario Children and Youth Reference Group. Second, the greatest financial and institutional weaknesses in mental health services have been reported during the transition between youth and adult services. Third, international and Canadian researchers have identified a lack of integrated systems of care and co-ordinated service provision between youth and adult services. Finally, young people navigating service transitions also experience developmentally specific changes (e.g., relationships, housing, school, employment) that further complicate their ability to negotiate mental health journeys. “The maximum weakness and discontinuity in the system occurs just when it should be at its strongest,” says McGorry.

At least 60 per cent of young people with enduring mental health issues disengage from service during the transition between the youth and adult service systems.

The discontinuities in service, financial support and comprehensive psychosocial care that occur between youth and adult services have become systemic problems that require immediate intervention. Research shows that at least 60 per cent of young people with enduring mental health issues disengage from service during the transition between the two systems.

Feedback from many stakeholders in Canada suggests that, overall, youth services are siloed from adult services. This is problematic, given research evidence, such as that published in a 2008 issue of the Journal of Behavioral Health Services and Research by Pottick and colleagues, which found that poor transitions “jeopardize the life chances of transition-aged youth (aged 16–25) who need to be supported to successfully adopt adult roles and responsibilities.” We must learn how to best support youth transitioning from youth services to adult services and implement appropriate strategies.

The empirical evidence indicates that creating better linkages between systems requires formal transition services that focus on shared responsibilities in planning and flexibility in their application. In other words, transition interventions must be tailored to the needs and strengths of individuals and their families.

The Canadian context. As a critical part of model development, our research group has conducted studies with key stakeholders in youth mental health transitions. Researchers, policy leaders, youth, caregivers and care providers pooled their expertise and lived experiences with the goal of creating better linkages between the youth and adult mental health systems. The recommendations from our stakeholders closely aligned with best practices that promote well-being in youth and their families.

Merging stakeholder perspectives and recommendations with evidence gleaned from a review of leading transitional practices in health care such as the Good to Go Program at the Hospital for Sick Children and the Growing Up Ready Program at the Holland Bloorview Kids Rehabilitation Hospital (both in Toronto) resulted in a proposal to study a shared management model of service delivery for youth in transition. This approach to care involves close collaboration, stakeholder investment and the creation of transition teams and services to help youth navigate the journey. Currently, our group is piloting this project in the Ottawa area.

The Australian context. The best-known transition program internationally is Headspace. This program evolved as a community-based model of care to complement Australia’s Orygen program, which features a specialized youth mental health clinical service, an internationally renowned youth mental health research centre and a youth mental health training and communications program. (See Q&A for more information about Headspace and Orygen.)

Headspace promotes and facilitates improvements in the social well-being, economic participation and mental health of young Australians. This model of service delivery provides comprehensive care (including GPs, psychiatrists, psychologists, addictions counsellors, social workers and administrative personnel) in a single setting. The program considers developmental age and engages with the community to overcome eligibility constraints and service boundaries. Data from a 2009 preliminary evaluation supported the efficacy of Headspace as a transition program; however, the nature of the funding model for this structure would likely render it unfeasible in a Canadian public health care context.

Transitioning in the United Kingdom. National Service Framework protocol and reciprocal agreement templates were disseminated to care providers. These tools were intended to provide the foundation for a continuous care system for transitioning youth by acting as cost-effective service contracts to facilitate transitions. However, the efficacy of the approach has proved less than ideal, largely due to a pervasive policy–practice gap. Still, about 25 per cent of mental health service providers in the United Kingdom have identified specific transition agreements.

The shared management approach being implemented in Canada represents a middle ground between the intensive care provided by Headspace and the policy-directed protocol structure of the United Kingdom. Establishing a transition team as part of a shared cared approach marks a first in Canadian mental health. This approach closely reflects the model of service delivery proposed by the MHCC by helping to break down silos within the mental health system.

Back in Canada, the Champlain Local Health Integration Network (LHIN) (PDF), which services eastern Ontario, has provided funding to implement the shared management model to transition 110 youth with moderate to severe mental illness from youth to adult services. A transitions team, comprised of a co-ordinator and partner community and hospital providers, was formed. The co-ordinator position is funded through the Champlain LHIN, and the partner providers have all dedicated in-kind contributions to assist in linking youth services with adult services.

With the partner providers, the transitions co-ordinator and an advisory board of child, youth and adult allied health professionals and community care providers work with youth to develop a youth-driven care plan that provides a co-ordinated transition between services. If this model is implemented appropriately, it may help to establish a better standard of mental health care and act as the launching point for other youth mental health transition programs.

To assess the efficacy of this model, an outcomes-based evaluation platform was designed, which involves tracking tools, standardized measures and qualitative interviews. This platform represents a positive initial step toward developing a framework to evaluate and identify evidenced-based practice in youth mental health transitions.

Currently, we are using this platform to study our model and are working with other Canadian researchers and international collaborators to expand it. Our goal is to assemble an international network of transition researchers to create a common platform to help us compare the efficacy of international transition programs and identify evidence-based practices in the field. It’s a big step toward helping young people on the path to adulthood.

Melissa Vloet is a doctoral candidate in clinical psychology at the University of Ottawa.

Dr. Simon Davidson is the regional chief of Specialized Psychiatric and Mental Health Services for Children and Youth at the Children’s Hospital of Eastern Ontario/Royal Ottawa Mental Health Centre (CHEO). He is also chair of the Child and Youth Advisory Committee with the Mental Health Commission of Canada.

Dr. Mario Cappelli is the director of mental health research at CHEO and a clinical professor of psychology and adjunct professor of psychiatry at the University of Ottawa.