August 22, 2019
By Rachel Tindall
Rachel Tindall describes some key findings of her research paper on how young people and their caregivers engage with early intervention services. The qualitative meta-synthesis was one of the Top 20 most downloaded journal articles in the Early Intervention in Psychiatry Journal for 2018 and identifies five main themes that affect engagement after a first episode of psychosis.
For most of my nursing career, I have worked with young people and their caregivers in the years following a first episode of psychosis. An episode of psychosis can be such a life-changing experience, and I continuously feel privileged to work alongside people on their journeys of recovery. The young people I work with continually inspire me with their strength and determination to move forward, often achieving amazing things in their lives.
Some of the relationships I built with young people and their families were strong, and I felt we worked well together. However, there were also young people who I struggled to connect with. This left me asking the question: what can we, as clinicians, do to optimise our services to best meet the needs of all young people and their families who use them?
As part of my PhD studies, I am starting to explore the answer to this question. Initially, I looked at all the published research to work out what we already know. The type of information I found most helpful was hearing from young people and their families and their reasons to engage, or not engage, with early intervention services after a first episode of psychosis.
The three key lessons I learned were:
1) Recognise the distress a first episode of psychosis can cause
It was clear from the qualitative literature that the experience of psychosis was confusing and distressing for young people and their caregivers. Young people hoped that symptoms would go away by themselves and caregivers did not realise the extent of the psychotic symptoms until they reached a crisis point. Most people described a sense of relief when clinicians named the experience as “psychosis” and a referral was made to a specialist early intervention service. This highlights the importance of recognising the trauma associated with a first episode of psychosis and supporting young people and caregivers to understand what is happening.
2) Provide help for the issues that are most important to the young person
The main concern for most young people was the impact symptoms had on school, work, family, relationships and/or friendships. If the recommended treatment addressed or improved these concerns, then this encouraged ongoing engagement with the service and enabled trust between clinician and young person. The importance of working with someone who dedicated time to listen to the young person and understand them cannot be overrated. This helped young people make sense of their situation and often work out their own solutions to move forward.
3) Use a model that supports young people and caregivers to be active participants in decision making about treatment
Young people described a strong personal desire to get better and to avoid another crisis point. When the benefits of attending services and receiving treatment (including talking, therapy, medication and peer support) were noticed by young people and their families, this made them want to continue attending the service. This highlights the importance of using a shared decision model when approaching decisions about treatment and recovery. This model facilitates clinicians to be transparent about all treatment options and the potential benefits, risks or harms. It also supports caregivers or significant others to be an integral part of this process.
Shared decision making tools are common in healthcare and are starting to be used more regularly in mental health treatment settings. An example of a good online shared decision making tool used in a youth mental health service with peer workers is described in the article published by Simmons et al.
I am currently conducting a study that aims to understand how engagement with early intervention services for first-episode psychosis changes over time. I am following a group of young people, their caregivers (if applicable) and clinicians through their time with an early intervention service. At different time-points, I will be asking them what makes them want to come in, or not, for their appointments. My initial findings from this study have been published in Psychological, Social and Integrative Approaches.
But while we continue to try and understand the complex phenomenon of engagement, clinicians and services can remember the three lessons above when working with young people. This has the potential to better align our services with the needs of young people and their caregivers. It is important to remember that each experience of psychosis and recovery is unique, and therefore, each experience of engagement with mental health services will also be unique. It is our ongoing privilege to hear and understand young people’s experiences, whilst having the opportunity to identify and collaborate on goals they have identified as meaningful to them.
Rachel Tindall is a senior mental health clinician with extensive experience in youth mental health. She is the Program Manager of Access and Primary Linkages at Barwon Health in Victoria, Australia and a PhD candidate, researching what makes young people with first episode psychosis want to engage, or disengage, from early intervention services. You can follow Rachel on Twitter @RachelMTindall