Overview

TITLE
Lived experience perspective of borderline personality disorder services in NSW

LEAD AGENCY 
University of Wollongong School of Psychology - Project Air Strategy 

PROJECT OVERVIEW
Develop and distribute co-designed fact sheets for mental health services and professional networks in NSW based on input from people with lived experience of borderline personality disorder (BPD) and carers supporting people with borderline personality disorder.

Lived Experience Framework: Actions to achieve change

  • Culture and approach: the value of lived experience of people with mental health issues and caring, families and kinship groups is recognised across services and communities
  • Education: develop and deliver training based on challenging assumptions, beliefs and behaviours around the value of lived experience of people with mental health issues and caring, family and kinship groups in mental health and social services
  • Capacity building: sponsor the development of tools to implement the Lived Experience Framework across mental health and social services.

Challenge

Voices of people with lived experience of personality disorder, their families, carers and kinship supports should be heard by service leaders, managers and clinicians. 

Wollongong, NSW

Response

Co-design fact sheets to represent the lived experiences of borderline personality disorder and those of carers. Distribute fact sheets widely to Local Health Districts, people with BPD lived experience, events and training, Project Air’s consumer, carer and family day and clinical conference, social media, Project Air Strategy online, Mental Health Carers NSW and BPD Foundation.

 

Fact sheets were developed through two co-designed focus group sessions of nine people with lived experience of BPD, and seven people with lived experience as carers, family and supporters. This data was qualitatively analysed, and themes were presented to personality disorder support groups. Feedback was incorporated into the development of the final resources.

Evaluation process

  • The evaluation is co-designed with people with lived experience, who will be authors on the paper. The evaluation will be submitted for publication in a peer-reviewed journal. 
  • Ethics approval from an institutional human research ethics committee has been granted.

Outcomes

Five fact sheets continue to be distributed and are available online and via training to health professionals, people (and carers) with lived experience of personality disorder, and Local Health Districts:

  1. Giving a diagnosis of personality disorder: Guide for mental health professionals
  2. Supporting Carers: Guide for mental health professionals
  3. Following your BPD Diagnosis - What Now? *
  4. First Responders and health professionals in hospitals: Support Guide
  5. Compassionate Recovery-Oriented Care *

* Fact sheets #3 and #5 give information developed through the Lived Experience Project. Fact sheets are available at https://www.projectairstrategy.org/mpafactsheets/index.html 

Key learnings for the organisers:

  • There were high levels of interest and recruitment, despite a tight recruitment period
  • Participation was promoted through lived experience and carer groups which increased interest from a broad range of people: BPD Foundation and Mental Health Carers NSW (MHCN)
  • It was important to ensure people could give feedback both verbally or in writing to allow for more confidential feedback to be provided  
  • Despite a two-week promotion timeframe, both focus groups were oversubscribed, however as expected a small number did not show up for the group. It is important to plan for potential reduction in numbers for a range of unexpected reasons 
  •  Two thirds of people with lived experience of BPD who attended the focus groups were female. A majority of carers were female (86%) but came from diverse backgrounds and perspectives including children, partners and parents of a person with a personality disorder
  • Strategies to improve the inclusion of men’s perspectives could be an area for future focus
  • It was vital to the success of the project that people with lived experience of BPD facilitated feedback throughout project planning and focus groups to stay true to co-design principles.

Benefits facilitated by the design of the project:

  • Focus groups allowed people with lived experience of BPD and caring to come together to give feedback
  • Further feedback from representatives and other peak consumer and carer bodies in NSW could be included in the final fact sheets.

Project challenges

  • A short (two week) recruiting timeframe restricted the number and breadth of participants
  • Time restrictions meant a focus group format may have discouraged the participation of people with lived experience or carers, uncomfortable with sharing their experiences with a group.

Next steps

  1. Continue to grow the lived experience co-design work across Project Air Strategy.
  2. Continuously monitor the use of the resources and check for their currency and relevance as the project matures.
  3. Further consider how partner organisations that use the resources better incorporate the Lived Experience Framework for people with lived experience of personality disorders, and their carers.

References 

  1. Project Air Strategy Lived Experience Framework Project report.