Symposium Chair: Cathy McLeod-Everitt
The state-wide BPD Collaborative (BPD Co) initiative was developed in response to the demonstrated need for enhanced, evidence-based BPD service development in SA, tailored to the needs of consumers, carers and clinicians.
The Model of Care was developed through a process of extensive consultation and collaboration with multiple stakeholders across South Australia (SA) and interstate. This resulted in a commitment to active, ongoing partnership with consumers and carers throughout the design and implementation of this service, facilitated by two Lived experience project officers (consumer and carer).
The Model of Care outlined the functions of the Lived experience roles, including:
In supporting capacity building and training, lived experience project officers:
This symposium will focus on several projects representing some of the key achievements consumer and carer engagement work, which have been led by the Lived experience project officers.
Presentation 1:
Title: Community engagement – how we pushed from consultation to co-production.
Presenters: Jessica A. Giles (Lived Experience Project Officer, Consumer) & Karen E. Bailey (Lived Experience Project Officer, Carer)
Background: The Model of Care for establishing our new service, was developed through a process of extensive consultation and collaboration with multiple stakeholders across South Australia (SA) and interstate. This resulted in a commitment to active, ongoing partnership with consumers and carers throughout the design and implementation of this service, facilitated by two Lived experience project officers (consumer and carer).
Objectives: To develop and embed consumer and carer engagement mechanisms for BPD Co, including advocacy for consumers and carers, capacity building and training, the development and delivery of training in the LHN’s and the development of partnerships with carer and consumer groups to develop community among consumers and carers.
Methods: We developed and utilised a range of strategies to develop pathways for engagement including building a community mailing list, onsite activities, expressions of interest and personal development opportunities.
Findings: Consistent approaches to how we work with people help build trust in community members who are likely to stay engaged with services outside of receiving direct care. Each interaction provides the service provider with opportunity to stretch the parameters of how we collaborate with community, in turn increasing service aptitude and encouraging new ground.
Presentation 2:
Title: Establishing a lived experience education team.
Presenter: Jessica A. Giles (Lived Experience Project Officer, Consumer) & Cathy McLeod-Everitt (Service Development Officer)
Background: The literature suggests that people with a diagnosis of BPD are perceived negatively by health workers. Providing clinicians with training has been found to shift these attitudes and may be one method for reducing stigma within systems. Further, collaborating with individuals with lived experience in the delivery of training, may be a particularly powerful learning experience.
Objectives: In order to challenge the stigma and attempt to demonstrate the heterogeneity of BPD, the lived experience officers set about developing a framework to support current/previous consumers and carers into reimbursed roles, as lived experience co-facilitators.
Methods: This presentation will report on the learnings of the lived experience project officer in establishing pathway for Lived Experience Co-facilitators. We will also report on some of the findings from the evaluation of our Foundations Training, in which staff attitudes were assessed before and after a full day training program.
Findings: It is feasible to include lived experience educators in the delivery of staff-focussed training. We found that foundations training significantly shifted health worker attitudes and a key theme in the qualitative feedback was the benefits of including lived experience educators in the delivery of training.
Presentation 3:
Title: Co-production of a peer group for people with BPD: Supporting growth and change
Presenters: Jessica A. Giles (Lived Experience Project Officer – Consumer) & Dianna R. Bartsch (Research Coordinator)
Background: In establishing a new state-wide service for borderline personality disorder (BPD), consumers strongly advocated for peer group programs to support them in their recovery journey. There was a dearth of information in the literature regarding the development and effectiveness of peer group programs for consumers with a diagnosis of BPD. A co-production process was utilised to develop a 10-week peer group program.
Objectives: We describe the co-production of a 10-week peer group program for people with a lived experience of BPD. The aim of the group was to promote hope in recovery, empowerment, increase consumers self-esteem and self-efficacy, promote self-management, facilitate social inclusion, engagement and increase social networks.
Methods: We utilised a mixed methods research design incorporating both quantitative and qualitative methods to gather information about participants’ experience of the group and to explore consumer self-reports of changes in recovery domains before and after the group.
Findings: Qualitative feedback suggested that the group supported growth and change; helped by providing connection and feeling understood; and created safety. Preliminary analysis of the quantitative assessments of functioning in recovery domains trended in the anticipated direction.
Presentation 4:
Title: Building a BPD Carer Peer Program: With carers, for carers.
Presenter: Karen Bailey (Lived Experience Project Officer, Carer), Helen van Roekel (Senior Clinician – Social Work)
Background: Carers can be a major source of support for people living with BPD, and their informed involvement correlates with positive treatment outcomes. BPD Co’s Carer Program reflects the Model of Care approach which champions a stepped level of service to people living with BPD.
Objectives: To provide carers with information and support in a peer environment that suits their need and time availability. The overall carer program includes Information Sessions (2-hr) and a co-produced Peer Group (4-wks). BPD Co also co-facilitates some of South Australia's Family Connections (12-wks) groups which are led by the NEA-BPD. Sessions are co-presented by a lived experience carer and a clinician, in a variety of formats to maximise accessibility. Carer support is also integrated into clinical services at various steps (e.g., 1-1 carer session in Gold Card SA and a carer group session within Road Maps).
Methods: We will report activity across the carer interventions and summarise carer feedback collected for quality assurance purposes.
Findings: Carer feedback has been positive across the different services provided. Future research will aim to explore the impact of carer support services on carer wellbeing.