Co-design research and evaluation methodologies are being increasingly adopted as a preferred approach for mental health research. However, research on the effectiveness and impacts of co-design involving carers is scarce. This article discusses how to conduct research using an integrated experience-based co-design method. It includes issues considered during the formation of the research team and during the study design and implementation.
We found integrated experience-based co-design useful throughout the conceptualization and implementation phases of the research moving beyond reporting of carers’ experiences of services to actual engagement in mental health service design. Key factors contributing the success of this process were the inclusion of members of some of the lesbian, gay, bisexual, transgender, gender diverse, intersex, and queer communities on the research team as well as having researchers with personal and/or practical experience, of mental health services, and as carers and consumers of mental health services. Integrated experience-based co-design allowed for flexibility and adaptability. Taking time early on and a focus on shared values and understandings with lesbian, gay, bisexual, transgender, gender diverse, intersex, and queer networks was important for collective ownership of the co-design process. The integrated experience-based co-design approach recognized the varied and multiple characteristics and contributions of members of the research team and study participants.
Meridian engaged Collective Action to lead a co-design process to design a mental health service for LGBTIQA+ people in the ACT. The co-design process involved a series of co-design workshops with an LGBTIQA+ service user reference group, as well as with mental health practitioners, and a survey of the LGBTIQA+ community. We received excellent feedback from the service user reference group who expressed that it was a genuine co-design process that gave service users the power to design a service that meets their needs. We also received positive feedback from the funding body, and Meridian was funded to implement the model.
Background: Sexual and gender minority youth (SGMY) are at an increased risk of a range of mental health problems. However, few evidence-informed interventions have been developed specifically to support their mental well-being. Interventions that are evidence-informed for the general population and are fine-tuned specifically with SGMY in mind proffer considerable potential. A particular opportunity lies in the delivery of engaging interventions on the web, where the focus is on enhancing the coping skills and building the resilience of SGMY, in a way that is directly relevant to their experiences. On the basis of earlier work related to an intervention called Rainbow SPARX (Smart, Positive, Active, Realistic, X-factor thoughts), we seek to create a new resource, especially for SGMY in the United Kingdom.
Objective: This project has 3 main objectives. First, together with SGMY as well as key adult experts, we aim to co-design a media-rich evidence-informed web-based SGMY well-being prototype toolkit aimed at those aged between 13 and 19 years. Second, we will explore how the web-based toolkit can be used within public health systems in the United Kingdom by SGMY and potentially other relevant stakeholders. Third, we aim to conduct a preliminary evaluation of the toolkit, which will inform the design of a future effectiveness study.
Methods: The first objective will be met by conducting the following: approximately 10 interviews with SGMY and 15 interviews with adult experts, a scoping review of studies focused on psychosocial coping strategies for SGMY, and co-design workshops with approximately 20 SGMY, which will inform the creation of the prototype toolkit. The second objective will be met by carrying out interviews with approximately 5 selected adult experts and 10 SGMY to explore how the toolkit can be best used and to determine the parameters and user-generated standards for a future effectiveness trial. The final objective will be met with a small-scale process evaluation, using the think out loud methodology, conducted with approximately 10 SGMY.
Results: The study commenced on September 1, 2021, and data gathering for phase 1 began in October 2021.
Conclusions: A considerable body of work has described the issues faced by the SGMY. However, there is a dearth of research seeking to develop interventions for SGMY so that they can thrive. This project aims to co-design such an intervention.
The National Mental Health Consumer and Carer Forum and the National Primary Health Network Mental Health Lived Experience Engagement Network acknowledge the Traditional Custodians of the lands and waters on which we work and live on across Australia. We recognise their continuing connection to land, waters, culture and community. We pay our respects to Elders past and present.
“A lived experience recognises the effects of ongoing negative historical impacts and or specific events on the social and emotional wellbeing of Aboriginal and Torres Strait Islander peoples. It encompasses the cultural, spiritual, physical, emotional and mental wellbeing of the individual, family or community.
“People with lived or living experience of suicide are those who have experienced suicidal thoughts, survived a suicide attempt, cared for someone through a suicidal crisis, been bereaved by suicide or having a loved one who has died by suicide, acknowledging that this experience is significantly different and takes into consideration Aboriginal and Torres Strait Islander peoples ways of understanding social and emotional wellbeing.” - Aboriginal and Torres Strait Islander Lived Experience Centre
We welcome Aboriginal and Torres Strait Islander people to this site and invite them to provide any feedback or items for inclusion.
We also recognise people with lived and living experience of mental ill-health and recovery and the experience of people who are carers, families, kin, or supporters.