Lived Experience led research
NDIS and the lived experience of psychosocial disability for people presenting to the emergency department (ED) (In Progress)
Mind Australia and the University of South Australia have partnered on a PhD research project where Mind is sponsoring Heather McIntyre, a Lived Experience research candidate, in her PhD. Heather’s project is titled “NDIS and the lived experience of psychosocial disability for people presenting to the emergency department (ED): A mixed methods co-enquiry study”.
The research found that NDIS participants often receive inadequate care within emergency departments, and they are discharged from emergency departments without proper treatment due to a major disconnect with the NDIS. Emergency departments and NDIS providers must acquire further skills and service capacities to provide supportive, overlapping care and decrease distress for people with psychosocial disabilities. The voices of people with a psychosocial disability with an NDIS plan are clear that emergency departments must learn how to build trust, how to really listen and provide safe, low-sensory environments.
Read more about the research project findings in peer-reviewed publications here:
- Communication pathways from the emergency department to community mental health services: a systematic review (PDF 536 KB)
- National Disability Insurance Scheme and lived experience of people presenting to the emergency department: protocol for a mixed methods study (PDF 125 KB)
- The lived experience of presenting to the emergency department for people with a psychosocial disability and an NDIS plan (PDF 354 KB)
- A nationwide study of emergency department contact by people with a psychosocial disability and a National Disability Insurance Scheme plan (PDF 369 KB)
- Let’s keep the emergency department safe: NDIS workers’ and service integration, Health and Social Care in the Community (PDF 518 KB)
Lived experience led services
Connect SA Evaluation with LELAN (2022)
At Mind, Connect provides 12 weeks of peer support to people in crisis (and to their carers/ families) who present to emergency departments, hospitals or other urgent care settings. LELAN (Lived Experience Leadership & Advocacy Network) was engaged as a Lived Experience evaluation partner and to be part of the service from day one. The specific methodology underpinning this work was informed by developmental evaluation. Mind and LELAN co-designed the theory of action to determine how the program would provide support and the intended impact on the people, staff and sector.
For consumers there were observable increases in average rating scores from pre- to post-service in nine out of 12 life areas. The largest increase (+2 points) was for the Looking at my health and wellbeing life area, with people entering Connect feeling fairly dissatisfied and exiting the service feeling satisfied with this life area.
- Walking the journey together from the start (PDF 1.66 MB)
Evaluation of Aftercare program with Impact Co (2022)
An evaluation of the Aftercare Program delivered by Mind Australia in the North Western Melbourne Primary Health Network was conducted by Impact Co in between 2019 and 2021. The Aftercare Program was a suicide prevention and postvention service targeted at LGBTIQ+ individuals following either a suicide attempt or experience of suicidal ideation.
The Program was identified to play a significant role in addressing a key gap that currently exist in the broader health system, which is the lack of culturally-appropriate and safe suicide prevention and postvention services for people who are LGBTIQ+. At the client level, it was able to: Reduce suicidal ideation, Improve mental health and wellbeing, Build the resilience and capacity of clients to manage suicidal ideation more effectively, Strengthen connections with other LGBTIQ+ people. At the system level, it was able to: Increase collaboration and integration between service providers, Increase the capacity and capability of the system to more effectively support, people who are LGBTIQ+.
- Impact Co - Aftercare evaluation report (PDF 1.33 MB)
Research on interventions that include a peer-component
Quitlink: a peer supported smoking cessation research project (2019 - 2021)
Quitlink was a randomised control trial led by the University of Newcastle looking at effective support for smoking cessation in people living with significant mental health challenges. Mind was a key partner in the Quitlink research with many Mind clients being able to access supports to quit smoking through this trial.
In total, 110 participants were recruited over 26 months and 91 had confirmed outcomes at 8 months post baseline. Participants who accessed the Quitlink intervention (n=6; 16%) were eight times more likely to have quit smoking for at least 6-months with no relapse compared to the control group (n=1; 2%), though this was not statistically significant. Quitlink participants received more and longer calls than the few participants in the control condition who contacted quitline, and the Quitlink calls were rated more highly on satisfaction.
- ‘Quitlink’: Outcomes of a randomised controlled trial of peer researcher facilitated referral to a tailored quitline tobacco treatment for people receiving mental health services (PDF 1 MB)
- The value of compassionate support to address smoking: A qualitative study with people who experience severe mental illness (PDF 306 KB)
- Adapting Peer Researcher Facilitated Strategies to Recruit People Receiving Mental Health Services to a Tobacco Treatment Trial (PDF 1 MB)