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Winter 2011/12 | Vol 15 No 2

Q&A

Transition-aged youth need distinct culture of care

 

By Amanda Dale

Youth mental health reform has been at the top of Dr. Patrick McGorry’s agenda for 27 years. He is the executive director of Orygen Youth Health, a world-renowned mental health organization for young people that has put Australia at the forefront of innovation in preventing and treating mental illness in youth. Orygen targets the needs of young people with emerging serious mental illness and has become the model upon which many other youth mental health services in the world are based.

McGorry is also a founding member of Headspace, probably the best-known transition-aged youth program in the world. CrossCurrents interviewed him about his work.

Why does the transition-aged youth population merit specific focus in mental health programming?
“Transition-aged youth” (TAY) generally refers to a marginalized group of young people within the range of what I think is better termed “emerging adults,” a group that universally warrants a distinct culture of care. Emerging adulthood starts earlier and ends later than the traditional TAY designation; we are discovering that many young people are not ready for the full responsibilities of adulthood until their late 20’s. It is a critical age, which marks the peak of onset of all the major mental health disorders. It is the group with the highest mental health needs but with the least access to services and interventions.

TAY services in North America tend to focus on those youth with pronounced experiences of abuse, neglect and trauma. We do that work as well, and it is important work. But there is a broader spectrum of youth that needs access to a distinct culture of care.

What constitutes a “distinct culture of care” for emerging adults?
If you think of the waiting room in a children’s mental health service, there are toys, dolls, crayons. Children are brought in by their parents. They experience a range of disorders like autism and ADHD. But for emerging adults, there is a distinct culture of care and the disorders are different. Clinicians need different engagement approaches, and while parents still have to be involved, we don’t require them to come with their kids. The range of expertise and the resources clinicians need to be engaged with these youth are totally different: drug and alcohol treatment, employment programs and so on.

As for adult services, they are primarily geared to middle-aged people, and young people do not have the right diagnostic entry tickets. They are frightened by being in the company of 45-year-olds with chronic illnesses. The clinical skills required for work with young people are quite different, and adult services do not always acknowledge that this disconnect is happening for these young adults.

What makes the programs of Headspace a unique service for emerging adults with mental health issues?
Any young person can come to Headspace, which is a youth-friendly café shop-front setting. They can talk to youth workers or a GP as the first step—have someone listen sympathetically and get information and feedback If they need more professional care, it is available in a multidisciplinary team model in a low-stigma setting The usual issues that the youth present are anxiety, depression, relationship issues and drug and alcohol problems, usually in combination. We use a clinical staging model that seeks to define the extent of the young person’s mental health problems along a continuum from asymptomatic to increasingly severe. This staging model can be used to tailor each young person’s care and allow interventions to be matched to their illness course (or stage) by understanding and monitoring their vulnerability (for example, exposure to stress or trauma); early symptoms; the established illness trajectory and a recovery phase.

There are many ways for youth to connect with help, including multi-media expression, social media links, musicians’ endorsements of our centre and downloads of their music, as well as plain language blogs and other forms of information, research and support, all of which make it more approachable. There are 40 centres throughout the country; there will be 90 by 2016.

Traditionally, the doctor is considered the expert. Do you take a different approach?
We have a model that values youth participation. In our Orygen service, a dozen or so young people provide peer support, have advocacy and media roles and are involved in developing feedback and recommendations for care. It can be threatening to professionals when families and young people have more say. There can be tension about who gets to resolve the issue when there are differences. But this is a very healthy tension in the work. But this is a very healthy process. Often in adult services, consumer input can be tokenistic. Often adult survivors have had terrible experiences that make them very angry. Often they are also very debilitated. But young people are so resilient and those who make positive recoveries have a lot to give back. They have such positive energy.

For young people who have experienced trauma—where power has been taken away from them—is there healing power in the experience of having a say in their care?
Absolutely. When young people come to our space they talk about the experience of being empowered and respected. The services are designed and delivered with tremendous respect for them. This is not a top-down model. It also builds respect from the young people for the treatments. Some critics and even some colleagues misunderstand and sometimes misrepresent what we are doing and say we are medicalizing young people’s options. But that’s the opposite of what we are trying to do. We take a holistic approach, which does include respect for medical approaches and expertise in complex problems. The young people themselves do not have express this criticism.

How were you able to translate your clinical experience and research results into something taken up by policy makers?
I was fortunate to be honoured with the Australian of the Year Award in 2010, which gave me access to a lot of politicians, policy makers and media. But really, it’s such a simple argument that’s backed up by evidence. It is well supported by unbiased people who don’t have an interest to protect.

There has been a backlash, primarily from small groups of dissatisfied professionals, but for the most part there is great interest, including in Canada. Most honest people in the mental health field recognize that we need novel approaches and transformational reform. The Jigsaw Centre in the Irish city Galway is run on a similar model. In some ways, the success mirrors the success with early intervention reforms in Canada and other countries with respect to psychosis. The reforms we are advocating arise from evidence-based research with academics, clinicians, researchers, families and youth.

What feedback do you hear from youth and families?
We do regular consultations; we have some research results, and we have a formal complaints mechanism and feedback process, which allows us to monitor and adjust programs as we go. An independent evaluation of headspace showed a 93 per cent satisfaction rate with the service model.

Currently, psychologist Rosemary Purcell is leading a transitions study in which other researchers and I are involved that will evaluate the headspace program and later the Orygen model more systematically. It will test our theoretical framework, the “clinical staging model,” that seeks to define the extent of a young person’s mental health problems along a continuum, from those at increased risk of developing mental illness but who are not yet showing symptoms to those experiencing mild mental health problems and those with increasingly severe mental disorders. Most participants in the study will have depression and anxiety symptoms, sometimes co-occurring with substance use and personality issues. A smaller group will have more severe disorders such as mania and psychosis.

Participants in the Transitions Study will be assessed at baseline, then followed-up annually for five years to examine what factors predict improvement and what factors predict worsening symptoms, particularly transitions between different stages of illness, including the role of headspace interventions. Within the overarching framework of the study, several smaller nested studies will be established to test the effectiveness of low-intensity interventions to reduce depressive and anxiety symptoms and prevent progression to more severe or persistent depression and anxiety.

There seems to be a lot of interest in your model. Do you have advice for starting up similar programs in other jurisdictions?
Come with a prototype. Professionally work out a plan in consultation with all the stakeholders. Remind everyone that this is a major mental health gap. And the effect of this gap is not restricted to young people. By not getting help for these young people, society in general weakens. You need to build community support and develop a systematic campaign that includes families and consumers working in partnership. You need a strong mission, a clear vision, allies and a professional model. Demonstrate what you can do with research and then move to a full scaling-up of programs. I’d love to assist if there is any help I can offer for developments taking place in Canada.