Authors: Laura Hayes, Brett Williams, Ellie Hodges, Nicky Guerin, Amanda Harris, Kate Davies, Lauren Hislop, Shaylie Pryer, Karen Wells, Catherine Brasier, Heidi Keevers, Jack Powell, Deidre Robinson, Tessa-May Zirnsak, Lisa Brophy
Year: 2022
Event: 2022 TheMHS Conference
Subject: services, peer work, lived experience
Type of resource: Conference Presentations and Papers
Abstract: PANEL PRESENTATION: Walking together from the start: A lived experience-led developmental evaluation of the Connect Peer Service
Laura Hayes, Brett Williams, Ellie Hodges, Nicky Guerin, Amanda Harris
Connect provides 12 weeks of peer support to people in crisis who present to emergency departments, hospitals or other urgent care settings.
Mind has integrated Lived experience into every aspect of the service model, from its governance structures, staffing arrangements, design thinking, service promotion, evaluation and how Connect operates on the frontline day to day.
LELAN led an evaluation, supporting team discussion with evaluative questions, data and logic, and facilitating data-based assessments and decision-making in the unfolding and developmental processes of innovation centring on lived experience expertise.
The evaluation demonstrated :
• A reduction in emergency and hospital presentations in crisis situations
• improved outcomes related to consumer and carer outcomes and demand management
• Clinical and non-clinical, government and non-government agencies can work together to address systemic barriers leading to improved help seeking, greater efficacy and uptake of mental health services
Outcome measures showed:
• Social well-being improved from 37% to 69%
• mental well-being improved (Cohen’s d=1.14)
• recovery improved from 51% to 74%
• environmental wellbeing increased from 56% to 68%.
The Connect Peer-led service provides a unique model on how lived experience centred and peer-led service delivery can be implemented and is revolutionary for the mental health sector in South Australia.
PANEL PRESENTATION: Doing it, but barely breathing: The importance of self-care in lived experience research
Kate Davies, Lauren Hislop, Shaylie Pryer
Lived-experience research is an emerging field, whereby researchers’ subjective experiences of mental health and mental illness are integral to the method. Limited evidence in this field suggests that lived-experience research can give voice to socially excluded groups, while improving co-production and the translation of research into policy and practice. However, concerns regarding the impacts of such methods on the researcher remain unresolved. The limited literature tends dichotomise the researcher and research subject, focusing on potential harm caused to the research participant. There is a gap in recognising the importance of self-care and potential for exacerbating trauma where the researcher draws on their own lived experiences as an explicit part of the research process. Strategies such as self-care and trauma-informed care are becoming embedded in individual and organisational human services practices, but are not yet embedded in lived-experience mental health research. This presentation offers an overview of the current state of play in lived-experience mental health research, a critically reflective case study from the perspective of a lived-experience researcher and recommendations for shaping connections between lived-experience, research and practice that facilitate self-care of lived-experience collaborators.
PANEL PRESENTATION: Lived experience research of a complex and controversial topic - ECT: personal reflections
Karen Wells
This paper explores the complexities of conducting research into the stigmatized and controversial area of Electro Convulsive Therapy (ECT). For the last seven years I have been investigating people’s lived experience of ECT, whether it be positive, negative, neutral or ambivalent, to try to positively influence systems like informed consent, trauma-informed and recovery-oriented practice, and support during and after the ECT. During this time, I have come to understand a major reason for the lack of research in this area – namely, the pressure to silence the voices of these consumers that comes from advocates from both sides of the ECT debate. My research has been criticized for being both pro-ECT and anti-ECT. In this paper I grapple with questions like: If I study and work towards better outcomes and practice, am I legitimizing the use of ECT that many would like to see banned? Given that ECT has affected and continues to affect the lives of many people, does NOT conducting such research disrespect their voices and disenfranchise their experiences? and how does my own experience of ECT influence my ability to honour the diverse experiences of others?
PANEL PRESENTATION: “Pebbles in a Pond - A Lived Experience Needs Analysis of a Mental Health Service”
Catherine Brasier, Heidi Keevers, Jack Powell, Deidre Robinson, Tessa-May Zirnsak, Lisa Brophy
Aim: The ‘Pebbles in a Pond’ project sought to develop recommendations that would align the complexity of delivering mental health services with Lived Experience and active collaboration principles.
Methods: This mixed method needs analysis was guided by a Lived Experience Pebbles Collaborative Leadership Committee (PCLC). It included a document analysis, staff survey and focus groups with people who have the Lived Experience of mental distress, caring and PCLC members.
Results: Analysis of data from the document analysis, staff survey (n = 24) and focus groups with people who have the Lived Experience of mental distress (n = 6); caring (n = 3) and PCLC members (n = 9) was conducted. A synthesis of the findings identified these key themes: i) increased awareness of Lived Experience; ii) continued and increased engagement with Lived Experience; iii) wide-spread culture shift; iv) greater collaboration around consumer choice and control; and v) celebration of achievements and continued growth.
Conclusions: Lived Experience-led evaluations are a valuable way of integrating feedback in order to improve the quality of mental health services. This increases connection between the service and builds expertise in the Lived Experience community.
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