Psychosis is a medical condition that is most commonly characterised by visual hallucinations and voices, and/or by the presence of grandiose, persecutory or self-blaming delusions. A psychotic episode can be a terrifying and often traumatic experience for young people. This is especially true for those that have previously had limited exposure to or awareness of mental illness. The two years that immediately follow a first episode of psychosis are a critical time for intervention and treatment for the young person experiencing the psychosis, as well as for their family and close friends.
The Early Intervention Approach
Early intervention services have been established internationally to minimise the adverse impact of psychotic disorders on young people, their families, and society. They provide treatment that not only focuses on the biological aspects of mental illness, but also on the psychological and social impact that it can have. This is referred to as a bio-psycho-social approach, and it involves providing access to a range of different treatments that may include:
– and linking the young person with resources such as housing, education, vocation and financial support.
These interventions are carefully tailored to the individual needs of the young person with the ultimate aim of providing the most effective treatment possible. Treatment teams consist of case-managers (who may be a nurse, social worker, occupational therapist or psychologist) and medical staff (psychiatric registrars and psychiatrists). Young people are most often seen in clinics, but strategies such as outreach to their house or school are often used to maximise recovery.
Treatment can only be effective if young people and their families engage with it in a sustained manner. This involves not only attending appointments but also actively contributing to the case-manager relationship, seeking help and working towards mutual goals. Research has shown that around 30 percent of young people disengage from early intervention services and subsequently do not receive the most effective treatment for their illness. As discussed in depth here, the degree of disengagement can be viewed on a spectrum ranging from active avoidance of services to attending sessions but not participating in them.
Understanding the Problem
Due to this persisting issue, studies are currently exploring young peoples’ engagement with mental health services. I undertook a qualitative study seeking to understand the experience of engagement and disengagement from seven young people attending an early intervention service for first episode psychosis in Melbourne, Australia. Those interviewed discussed how engagement with a service could be viewed as a process or a journey, with different stages occurring between the initial referral and discharge. Throughout this process, several factors influenced young people’s decisions to engage with, or disengage from, their case manager. This created a push–pull dynamic, with periods of good engagement and poor engagement.
Factors that Promoted Engagement
– Belief that attending appointments would support recovery from psychosis and help patients to understand their experiences. This was often accompanied by a fear of relapse or being re-admitted into hospital.
– Trust in the case-manager, who was often seen as an expert who could provide guidance through the journey of recovery.
– Having the opportunity to talk about experiences of psychosis with someone outside of one’s immediate social network.
– Being helped to develop a routine and practice being out in the community.
Factors that Discouraged Engagement
– Waiting for treatment to start; this caused distress and confusion for some young people, who described almost giving up on the service before they had met their case-manager.
– Having to retell personal stories to multiple clinicians whilst waiting for the consistent case-manager to be allocated, or experiencing disruption when changing case-manager.
– Difficulty trusting or opening up to the case-manager, or feeling that talking about problems was not helpful.
– Hearing stigmatizing comments about mental illness from medical professionals.
– Experiencing conflict between ongoing appointments with the early intervention service and other important appointments in ‘normal life’, such as meetings with employment agencies.
Engagement is therefore experienced by young people as a dynamic process; constantly changing and evolving as their needs change. It is of the upmost importance that services and clinicians recognize this and constantly adapt their approach to engagement to match the young person’s current needs and priorities.
Mental illness is the leading cause of disability worldwide for young people. Engaging young people in treatment for their first episode of illness is therefore a priority. It became evident through this cross-sectional qualitative study that engagement was a dynamic process that incorporated different stages and fluctuated over time.
As a final thought, it is important to remember that each young person’s experience of psychosis and recovery is unique and personal to them. As such, their engagement with mental health services is also a unique and personal journey that requires us to tailor our treatment approach to their needs based on where they are at. Our focus should always centre on supporting young people and helping them recover from what can be an extremely challenging experience for them. Recovery is not about what we want for young people but what they want for themselves.
Tindall, R., Francey, S., & Hamilton, B. (2015). Factors influencing engagement with case managers: Perspectives of young people with a diagnosis of first episode psychosis. International journal of mental health nursing, 24(4), 295-303.
About the Author
Rachel Tindall is a credentialed mental health nurse and senior clinician at Orygen Youth Health’s Early Psychosis Prevention and Intervention Centre (EPPIC) in Melbourne, Australia. EPPIC is an internationally renowned early psychosis clinic that conducts and researches pioneering work in mental health care for young people. Rachel was awarded valedictorian for her Masters of Advanced Nursing Practice (Mental Health) in 2014. She is currently studying a PhD through The University of Melbourne, Department of Nursing; The University of Melbourne, Centre for Youth Mental Health and Orygen, The National Centre of Excellence in Youth Mental Health. She has been awarded the Hospira Grant for her PhD studies.
This blog post is based on the opinions of the author and does not necessarily represent the views of the University of Oxford or the Oxford Department of Psychiatry.