Authors: Fiona Orr, Chloe Sinclair, Katherine Gill, Scarlett Franks, Jo River, Mark Goodhew, Rowena Jonas, Athena Field, Brett Bellingham, Grenville Rose, Bradley Foxlewin, Katy Sam, Marianne Wyder
Event: 2022 TheMHS Conference
Subject: services, recovery, research
Type of resource: Conference Presentations and Papers
Abstract: LEAD PRESENTATION: A co-produced study to explore the experiences of Functional Neurological Disorder to strengthen service delivery
Fiona Orr, Chloe Sinclair, Katherine Gill, Scarlett Franks, Jo River, Mark Goodhew
People with FND face multiple disadvantages in accessing support services , often falling between neurological and psychiatric services [2, 3]. They also experience stigma in health services and the community due to having a mental health diagnosis and neurological disability and the ongoing perception that people with FND are emotionally manipulative and malingering , creating ‘surplus suffering’ for this population .
Research exploring lived experience is vital to ensure services and public policy are responsive to the needs of people with FND. However, existing research has been criticized for being deficit-based and exacerbating negative perceptions of people with FND . In response to this, this project is a partnership between Lived Experience and Conventional academic researchers, who are using co-production to examine the experiences of 17 people living with FND. It utilises a strengths-based approach to qualitative inquiry, exploring the challenges of navigating health services, including intersectional experiences related to disability and mental health diagnosis. Preliminary findings from a thematic analysis of interview data will be presented to inform the education of health professionals and identify the strategies that people use when navigating services and their daily life to assist people early on their FND journey.
LEAD PRESENTATION: Beyond Recovery - Complexities and Possibilities
Rowena Jonas, Athena Field
Discovery is Wellways’ personal recovery program created by and for people with a lived experience of mental health issues, family members, whanau or carers. The Discovery program utilises practical approaches to wellbeing recovery with a social justice dimension. Through practical and explorative activities, peer facilitators support participants to strengthen relationships to community, examine richness of their identity and begin to understand and overcome wellbeing crisis. The CHIME framework informs the program’s processes - Connectedness, Hope, Identity, Meaning and Empowerment.
The program poses that recovery is not recovery unless it is addressing the social change aspect. We explore further, relating mental health issues as human rights issues, highlighting the need for advocacy and supports that enable empowerment and equity, and more broadly, social change.
Discovery is informed by a research base that is trauma-aware and guided by lived experience and peer support values. Story sharing of recovery is a large component, one that contributes to positive emotions and self-efficacy (McLeod et al in publication).
Discovery is entirely researched, co-developed, delivered and evaluated by lived experience. It is this methodology of quality co-design that shows that lived experience project teams can deliver outstanding results and under difficult conditions.
PANEL PRESENTATION: Co-production Kickstarter: A framework for equitable lived experience participation in mental health and AOD research.
Jo River, Brett Bellingham, Grenville Rose, Bradley Foxlewin, Katy Sam
In this talk, we present the Co-production Kickstarter, which lays out a ‘gold standard’ approach to participatory research that is consistent with original conceptualisations of co-production and aligns with advocacy efforts for substantive participation from Consumer and Peer movements. Although government agencies recommend participation of people with lived experiences in all stages of the research process, mental health and alcohol and other drug (AOD) researchers are provided with little guidance around what constitutes ‘high-level’ participation or how to achieve this. To meet this need, we developed a ‘Co-production Kickstarter’, a framework that aims to promote continuous and equitable partnership with people with lived experience throughout all stages of mental health/AOD research. It provides Lived Experience and conventional mental health/AOD researchers with a clear and accessible resource to get started, or become more familiar, with the principles and practices of co-production research. The Co-production Kickstarter was developed by Lived Experience researchers and conventional mental health/AOD researchers from across community and academic sectors in partnership with the Community Mental Health Drug and Alcohol Network (CMHDARN) – a collaborative project between Network of Alcohol and Other Drugs Agencies (NADA) and Mental Health Coordinating Council (MHCC) and the Mental Health Commission of NSW.
PANEL PRESENTATION: Co-constructed Research – Principles and practicalities
Rowena Jones, Marianne Wyder
In 2019 and 2020, Research Academics from Metro South Addiction and Mental Health Services and the Australian Catholic University joined with Wellways family/carer peer education facilitators to conduct a collaborative co-constructed, action-based research project. Co-constructed research is research that facilitates equal partnership in research between academics and non-academic parties over all phases and aspects of the research from research design, analysis and output (Happell et al., 2018). Co-production is becoming increasingly embedded in the mental health sector as it can be the bridge between the community and clinical disciplines. It also allows for faster access to an emerging evidence base and supports strategic development.
While different methodologies can be utilised for co-constructed research, the underlying principles behind these projects are similar and generally aim to either tap into tacit knowledge (knowing/feeling/experiential) or explicit knowledge (articulated/written/rational).
In this session we will explore the principles of co-production and an initial set of ideas based on these derived from the team’s research project.