Participatory design and research processes are known in the tech world to produce superior products. There is also a movement in the mental health field to use collaborative processes, alongside service-users and people with lived experience, to produce novel insights and research while activating the healing powers of dialogue. Now, a new project is combining the powers of digital technology and collaborative design with the movement for peer inclusion in mental health research and treatment.
For the Alfred headspace Youth Early Psychosis Program (hYEPP), clinicians, peer-support workers, consumers, and digital resource specialists came together to produce a set of lived-experience personal recovery videos. These videos were then used in peer support work with young people experiencing psychosis.
The paper, published in Frontiers in Psychiatry, presents a research collaboration led by Clair Peck and Neil Thomas. They explain:
“The process of transforming consumer material from the content development workshops into a series of digital videos was an innovative approach to creating peer resources that were grounded in lived experience. Illustrating this approach helps create a dialogue on how digital technology could be integrated into the peer support work context and used to establish meaningful resources.”
Early intervention for young people experiencing psychosis has become a key focus of mental health services worldwide. In Australia, policies like the government-led National Youth Mental Health Initiative have led to widespread implementation of early intervention mental health services for young people experiencing psychosis or at high risk of psychosis. Backed by studies supporting the value of non-drug interventions at this stage, like personalized exercise regimens and talk therapy, this effort has led strengths-based programs for early psychosis to gain more ground in the United States.
Moreover, tapping into the wisdom of survivors has been increasingly encouraged within health research and mental health service design. The same results have become clear in the development of digital interventions across the board: participatory design processes are now standard because they capture practitioners’ expertise and the needs of those who have real stakes in the resource being designed.
Similar logic is at play in using these collaboratively developed resources in peer-support settings. Those who possess personal experience with psychosis more easily develop the trusting relationships required for therapeutic dialogue.
In this new study, the researchers describe the participatory development process used for making personal recovery lived experience video resources for use in peer support work. They detail the resultant web-based resource and discuss the benefits and drawbacks associated with the process.
By incorporating consumer, survivor, peer-support worker, and mental health service provider perspectives, some of the barriers associated with translating research into practice were broken down. Beginning with an initial content framework, the participatory process, and user participation at all steps of development enabled video resources on lived experience with psychotic episodes to be developed.
The idea is that such videos would have higher relevance for young people experiencing psychosis and the peer-support workers assisting them, though this is yet to be tested. The videos are meant to facilitate conversations about recovery and to inspire hope more generally. They are included as modules in a digitally assisted personal recovery and self-management program for peer support work called Peer Plus. Peer Plus is a four-session program designed to be used on an iPad by a peer-support worker and young person in a face-to-face session to watch and discuss the lived experience videos.
Six themes representing six program modules emerged from the content development workshops and the perspectives of the stakeholders (as well as the literature used as “guardrails” for development).
- The “My Journey” module provides an overview of the lived experience speaker’s mental health journey and their view on the meaning of recovery.
- The second, self-care, explores how stress affects people, the types of things that cause people stress, how to recognize the signs of being under stress, and strategies to cope with stress.
- A module called “My Identity”, explores people’s sense of self and how personal identity may be affected by ‘mental illness’ and associated stigma.
- “Connections” explores the impact of mental health on relationships with friends, family, people in the community, and social media.
- The module, “Life”, explores the navigation of life challenges of late adolescence and early adulthood with mental health concerns in the mix.
- The final module, “Mental Health,” explores personal experiences with mental health services.
The researchers note that the bottom-up approach they used was especially useful, given the lack of existing personal recovery models for young people experiencing psychosis. Interestingly, the themes that arose in the development process, like empowerment, identity, and one’s journey contributing to hope for the future, were similar to those developed in existing research, like the CHIME personal recovery framework. One novel theme they attributed to the age of participants was that they preferred to hear lived experience perspectives on how social media impacted their ability to connect with others.
A major challenge in the video resource development process was identifying participants whose stories would be used in the videos, which extended the length of the process and led to the decision to include additional interview material from other resources. While the videos eventually reflected diversity in race, sex, and age, the researchers note that a bias may be reflected in the overall positive tone of videos, over which they had final editorial control. The high turnover of peer-support workers also led to less of their input in content decisions.
This study highlights a new process for developing digital tools for peer-support work. It shows the value of a lived experience perspective in creating resources that may be more relatable to young people and peer-workers than traditional research materials. It also points to the promise of lived experience videos as a tool for facilitating intimate conversations about personal mental health recovery among peers.
Peck, C. E., Lim, M. H., Purkiss, M., Foley, F., Hopkins, L., & Thomas, N. (2020). Development of a Lived Experience-Based Digital Resource for a Digitally-Assisted Peer Support Program for Young People Experiencing Psychosis. Frontiers in Psychiatry, 11, 635. https://doi.org/10.3389/fpsyt.2020.00635 (Link)
When in the video she says that professional advice helped her understand psychosis, she does not touch on what was explained to her, nor how it made sense to her.