Exploring how young people and their GPs experience mental health care in the ACT: the JAMMed study

An innovative new research project hopes to gain insight into the unique mental health challenges faced by Australian youth, write Louise Stone, Caitlin Pilbeam, Erin Walsh …

YOUNG people in Australia have difficulty accessing appropriate mental health support. In the wake of coronavirus disease 2019 (COVID-19) and with the pressures of modern living, mental ill-health is an increasing problem around the world and for all ages. However, young people have particularly poor mental health compared with the general population, and their risk of self-harm and suicide is also high. It is therefore critical that we understand why they and their GPs make the health care choices they do so that we can facilitate appropriate care.

Young people who live with mental ill-health are a diverse group and have fluctuating social and occupational functioning over time. Some live with specific vulnerabilities, such as poverty or unstable housing, others experience discrimination or harassment, and many have a history of trauma. There are also a number of developmental changes that occur in late adolescence that change the way young people experience, conceptualise, and express their mental health needs. These changes intersect with changing rights and privileges, including the right to give consent, access to financial support, and transition from child and adolescent to adult health and social services. As in older people, multimorbidity is common. Mental illnesses frequently occur together, and occur with physical illness and other conditions such as substance misuse. Trauma complicates access, as young people may have difficulties negotiating the interpersonal challenges inherent in a therapeutic relationship. Unfortunately, much of this diversity is missing from clinical research in youth mental health.

We do know that is difficult for GPs and their young patients to find appropriate services to meet their changing needs, particularly when they are experiencing a crisis. Despite the availability of services that target young people with mental health concerns, young people continue to report difficulty accessing the care they need, when they need it.

We have some ideas about why young people may choose not to engage, be unable to engage, or disengage from health services. However, our evidence to date is often limited to snapshots in time and can miss perspectives of the young people themselves. The ‘JAMMed’ (Journeys Around Mental Health and Mental Services) study intends to fill this knowledge gap by qualitatively exploring the journeys of young people (aged 16–25 years) over one year in the Australian Capital Territory in Australia, starting in 2023. It shows one method of understanding the longitudinal experience of health care and incorporates innovative methods of co-design.

What are we aiming to achieve with this research?

The JAMMed research project aims to answer three key questions. First, where do young people go for mental health care when experiencing their first significant episode of mental illness? Second, what it is like for them to (try to) access that care? And finally, what makes it easier or harder for them to access the care they need when they need it?

In designing our research, we needed to engage deeply with a variety of young people. We want to know why, given these increasing and intersecting vulnerabilities, young people are not getting the help that they need. Is it because there are not enough youth-friendly services, or because young people do not know about them? Is it because services are not easily accessible, or because young people do not want the kind of support that is offered? Have they had or heard about a bad experience, or are they worried about stigma and their friends and families finding out? The reality, of course, is probably a complex combination of all these things and more.

The complexity is compounded by the fact that mental ill-health (and seeking help for this ill-health) is not just about measuring and understanding what is happening at one or two points in time. Mental health is often a much longer, and ongoing, journey. We understand that mental health care needs and wants change over time, that different services offer different kinds of support, that young people might be accessing multiple sources of support at the same time, and that wait-times for certain services may equally mean a lack of support in the meantime. This is why it is important to map young people’s journeys through mental health care longitudinally.

We decided to capture both the perspectives of the young people seeking mental health care, and the GP involved in coordinating their care. We wanted to know how they worked together to find appropriate services, and why they made the choices they did when pursuing mental health support.

Who is the research team?

Our research team includes a GP, child psychiatrist, critical health psychologist, dietitian, medical anthropologist, youth worker, social worker, and a graphic artist. The graphic artist in the team has provided invaluable advice on the use of creative methods, but they will also be involved in disseminating the findings to young people and their advocates. The research team are supported by the Young Person’s Reference Group, made up of diverse young people who may have had mental ill-health themselves or been affected by peers’ mental ill-health. By bringing such a diverse group of people together, and drawing on their differing expertise, we aim to capture and understand as much as possible about the complex picture of seeking, accessing and experiencing mental health care over time – without being too intrusive or asking too much of unwell participants.

We have also been guided by a Steering Committee made up of youth mental health and representatives from a range of relevant local, national and government organisations. This group and the Young Person’s Reference Group have been essential in ensuring that our research questions and methods are valuable and appropriate to different stakeholders and participants. We have also engaged a social work student with deep experience in youth mental health to liaise with participants and ensure they are supported while undertaking the study. Their role is not to provide care, but to facilitate engagement with the study. Although there are methodological challenges to this approach, we recognise that some young people will need support to manage the practical requirements of the study, including transport, access to creative materials and support to arrange research interviews.

Using art-based and creative methods

The study involves interviewing 20–25 diverse young people and their GPs four times over a 12-month period. Working with the Young Person’s Reference Group, we realised that this meant the participants would need to use some method of recording their thoughts, feelings, experiences and reflections between interviews. Giving voice to young people’s experiences in their own words is important, but our Reference Group were clear that words alone may not be the only way a young person might capture or communicate their own experience.

We decided with the Reference Group that creative arts-based methods would be an innovative and engaging way of doing research with the young people experiencing mental ill-health that we hope to work with. Although arts-based methodologies are common in the social sciences, they are less common in health. There are some studies using a single medium such as photography, audio diaries and art. But creative methods are more common in therapy with children and adolescents.

Mental health experience may not be easily articulated, and to be inclusive, it is important to have a range of methods for engaging with the researcher. We have therefore identified a range of options for young participants to record their experience, and multiple ways for them to communicate these ideas and reflections to the researchers. They have a choice as to whether the products of their reflections (eg, their artwork or diaries) are included as data in the study or used to help them recall their experience during interviews.

Arts-based methods allow participants to curate, create, or respond to imagery or other forms of creative expression including photos, videos, drawings, journalling, poetry, music, multimedia etc. These methods do not require young people to articulate their lived experiences, which may be ineffable, only in words.

Learning about creative methods with the Young Person’s Reference Group was certainly educational for the researchers, as we discussed everything from pixels to playlists using a variety of mobile phone applications, tools and trackers. We were keen to ensure the participants felt comfortable using their chosen technique and that they were able to choose their preferred method. 

By using multiple qualitative methods and engaging with diverse participants, we can triangulate our analysis, so that we do not rely only on one form of data, one perspective, or one narrative. We want to capture the nuances, contradictions and multiplicities inherent in life as lived and the journeys we make – the ones that have dead-ends, or parallel branches, or in hindsight seem like there were some wrong turns and some right ones.

What outcomes are we expecting?

Ultimately, we have a shared goal with our participants, the Reference Group, and ACT Health, who has funded the work. We wish to understand what young people need, and how appropriate services can be made available to them when and where they need it. By understanding their unique perspectives, we may be able to reduce health service waste, such as missed appointments and inappropriate referrals, and improve the outcomes for young people with mental ill-health.

However, this study has broader implications for the way we understand and analyse mental health services. We know that services are becoming increasingly diverse, using the skills of a widening range of multidisciplinary health professionals and lived experience workers. We also know that the way our patients understand their illness is shaped by the multiple communities (including virtual communities) and services with whom they interact. We believe that over time it will be possible to map the way individuals travel around health services and where they engage. We hope that this study will be part of a growing methodological strategy to find out why they make the choices that they do. We are deliberately recruiting to give voice to the people who are often silenced in research, and hope to add to the growing literature addressing a diversity gap in mental health service provision.

Undoubtedly, cultures, health care needs and expectations of services will change over time. Despite the deep methodological, ethical and practical challenge of doing longitudinal work, we believe it is one of few ways of the reasoning behind patient choice. Without understanding why our patients do what they do, we run the risk of wasting precious health resources on services that don’t meet the needs for which they are designed.

The JAMMedproject has been funded by the ACT Health Research Innovation Fund.

Dr Louise Stone, is a GP with clinical, research, teaching and policy expertise in mental health. She is Associate Professor in the Social Foundations of Medicine group, Australian National University (ANU) Medical School.

Dr Erin Walsh is a multidisciplinary researcher spanning the fields of psychology, visual science communication, biology (focus on brain morphometrics), and human health (focus on brain ageing). She is a Senior Research Fellow ANU College of Health and Medicine.

Dr Caitlin Pilbeam is an interdisciplinary Medical Anthropologist with expertise in ethnographic and other qualitative research methods. Her research spans explorations into living and dying well in local and global health contexts. She is currently a Research Fellow Social Foundations of Medicine Group, ANU Medical School.

The statements or opinions expressed in this article reflect the views of the authors and do not necessarily represent the official policy of the AMA, the MJA or InSight+ unless so stated.

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