Lost in transition: the gap between child and adult mental health services
I first met “Alice” during my pediatric residency. She is a shy and articulate 17 year old girl, who has been struggling with depression since her early teen years. Over the past several years, she has been seeing a counsellor at her local pediatric mental health centre. She has learned to trust and rely on her clinical team during her times of struggle.
But as her 18th birthday approaches, this relationship is set to change. Like so many pediatric centres, Alice’s current treatment centre is only able to care for children. Therefore, on her 18th birthday, Alice’s care will be transitioned to an adult centre. For Alice, this transition is one laced with hesitancy, worry and anxiety. Not only will she be leaving behind her trusted clinical team, but also the disjointed nature of the pediatric and adult mental health sectors means that she might not be eligible for the same services as an adult. And Alice is not alone. For many adolescents, this period of transition can be overwhelming and for some children, so distressing and frustrating that they do not seek, or simply stop, medical treatment.
It is estimated that 1.04 million young people aged nine to 19 are living with a mental illness in Canada. That represents nearly one in four children and youth. Yet, a recent study shows that in Ontario, only one in six children received the specialized treatment they require. The lack of adequate treatment can have lifelong consequences, because children and youth who experience a mental illness are at a much higher risk of experiencing a mental illness as adults. This risk is increased if children are not able to receive early and appropriate treatment.
The transition from childhood to adult life is a natural developmental process. But for adolescents with mental health conditions this can be a difficult time. Adolescence and young adulthood are high risk periods for the development of mental illness. In fact, 70% of mental illnesses arise in childhood or adolescence. Furthermore, for those with mental illness, this period is one where more serious symptoms, such as psychosis, can arise or worsen. Adolescents can also face a number of other barriers that can influence the impact of their illness including homelessness, lack of education, barriers to employment, learning disabilities and drug use.
This is compounded by the fact that adolescents are also moving away from their established and trusted circle of care providers to another, often completely different treatment program and set of health care providers. Thus, in an illness where continuity and stability is important, this transition period can create the perfect storm.
There are increasing movements within pediatric medicine towards more structured and gradual transition periods for patients with chronic or complex medical histories. But the same movement is not as apparent within mental health, and where efforts have started they are often in their infancy.
In mental health, perhaps more than other medical conditions, continuity of care is imperative. Fortunately, unlike pediatricians, child psychiatrists are trained and licensed to provide treatment to both children and adults. So theoretically they can provide ongoing care to adolescents and young adults. In reality, however, this is often not possible because psychiatrists who practice in a pediatric facility may only be allowed to see children under the age of 18. This same limitation may also exist for other clinicians who work with this population, such as social workers and counsellors.
However, even if one eliminates this barrier, there are many other factors that make this transition period challenging for youth with mental illness. For example, pediatric and adult services often have different practice patterns. While pediatric practices tend to focus on the children as well as their families, there is a movement away from this in adult services, where the emphasis is instead placed on the individual patient. Thus for teenagers who are not accustomed to having sole decision-making power in their medical care, this change in practice culture can be daunting. Furthermore, the decreased emphasis on family involvement in decision making in adult systems may leave families feeling less involved in their children’s care. Without family collaboration, teens are potentially at increased risk for disengagement from their medical team.
Overall, the impact of poor transition can be grave. Up to 60% of youths with ongoing mental health needs can disengage from their medical and community services as a result of poor transitions. And it is the children at greatest risk who are the most likely to withdraw from treatment.
There is no simple answer for fixing the challenges faced by teens during this transition period. But reworking the complex and fragmented social and medical system that provides mental health services is one place to start. Within Ontario, for example, mental health services are shared among a number of ministries and the distribution of services changes when a patient turns 18 and in some cases 21. There is also no cross talk between ministries. Thus, when children enter the adult system, they often are required to begin the process of applying for services from the start. Further adding to the frustration is the fact that for patients with established pediatric services, there are no guarantees that they will receive the same level of services from the adult sector. In the end, families are often left scrambling to find their children the appropriate services they require.
There are changes afoot within the mental health sector, as more and more become aware of the true impact of mental illness of our youth. But as we move forward, it will be important to remember that the even within the chronically underserviced mental health system, the importance of transitions can’t be ignored.
Meera Rayar is a clinical fellow in Paediatric Hematology/Oncology at the Hospital for Sick Children and a Masters of Science candidate at the Institute of Health Policy, Management and Evaluation at the University of Toronto.