Perinatal Lived Experience Workshops
WayAhead Mental Health Association NSW (WayAhead), Perinatal Anxiety and Depression Australia (PANDA) and NSW Perinatal and Infant Mental Health Services (PIMHS)
WayAhead, PANDA and NSW PIMHS trained lived experience volunteers to fill positions at local PIMHS services.
Lived Experience Framework: Actions to achieve change
- Focus: shift how we do things, our assumptions, cultures we foster, and stories we tell
- Employment opportunities: employment opportunities and support are available for people with lived experience of mental health issues and caring, family and kinship groups
- Capacity-building: leaders ensure their services are employing people with lived experience of mental health issues and/or families and carers and provide them with development opportunities in leadership.
People are called upon by mental health services to contribute their expertise as people with lived experience without support, information or training. As volunteers they do not have the same access to systems, policies, and supports that people who are employed within the services have. This can create potentially unsafe situations for people as they may not have the skills and knowledge to effectively work within these systems and practices. Drawing on personal experiences to bring about change can also be a risk to the person and their audience.
A one-day training workshop was offered to people who have experienced perinatal mental health issues including perinatal anxiety, depression, and postnatal psychosis, who were keen to become volunteers. The training was designed and delivered by WayAhead and PANDA with input from NSW Health. Lived experience leadership was provided by the WayAhead Mental Health Promotion Officer who was co-presenter and co-creator alongside PANDA’s Community and Training Programs Coordinator.
Cross-agency collaboration can achieve common goals of supporting people with lived experience of perinatal mental health issues to co-design, improve and evaluate services.
The workshops delivered information to 14 people with lived experience of perinatal mental health issues about PIMHS and advocacy work in the health sector, to boost the skills and knowledge to people considering becoming a PANDA ‘Community Champion’ peer volunteer. They were recruited via the PIMHS networks and all participants underwent an interview process.
The workshop trained volunteers to understand the different priorities and considerations for different roles of full-time workers and volunteers in PIMHS and other volunteer and peer work opportunities.
Training included a history of consumer advocacy achieving significant change to health systems and services, emerging peer worker roles, and how to be involved; and PANDA key messages and how to access resources and guidance.
- Evaluation was conducted through a survey of members’ understanding of eight components of advocacy and peer work the perinatal infant mental health program, at the workshop’s end.
- An evaluation showed improvements in confidence or maintenance of confidence in all areas.
Participants, following the workshops, rated increased levels of confidence and understanding of:
- Consumer advocate roles in perinatal health and the Perinatal Infant Mental Health Program
- Preparation to share experiences, wider consumer perspectives, and purposeful storytelling
- How to prepare for consumer advocacy, for self-care and the role of debriefing
- How to self-advocate, handle tricky stuff, and how PANDA can support this work.
Organisers learned from volunteer lived experience:
- Discussion, awareness of power dynamics and who is in the room: raised throughout the day
- Self-care: understanding the importance of including debriefing and its components
- Safety: have a break away space and a support person for individuals.
Feedback on co-design and training co-delivery:
- Agencies collaborated to plan, design and deliver workshops with common goals to support the value of lived experience in co-design and improving mental health services
- Training co-delivery modelled how co-design can work
- Co-design implies equality, but this is challenging; in a paid versus voluntary workforce, the expectation is for people with lived experience to be up-skilled without the same expectation for the clinical workforce. Consideration of reciprocity, the desire for leadership versus input, and the ability to be open to challenge are all aspects of co-design to be considered.
Benefits for other organisations or settings:
- Transferable learnings on training people with lived experience of perinatal mental health issues
- After the training it was important to reflect on what worked and what to do better next time
- It enabled an environment to test expectations against volunteer experiences, such as volunteer/service worker tension.
People with lived experience of perinatal mental health issues could undertake this project’s perinatal training before or during a recruitment process as a PIMHS volunteer.
Offer opportunities for PIMHS / NSW Health staff to engage fully in co-design by providing training, guidelines and reflective practice techniques when working with people with lived experience of mental health issues.
Opportunities exist to develop ongoing engagement with workshop participants, both as part of program quality assurance, and to create and expand future work opportunities for participants.
WayAhead, PANDA and NSW Health PIMHS may evaluate the benefits of this training to support people with lived experience of perinatal mental health issues to encourage, support and develop a peer workforce:
- Support lived experience participants with a PIMHS volunteer guide or an online PIMHS volunteer learning portal
- Support PIMHS to understand the needs of volunteers with lived experience of mental health issues or trauma
- Develop plans to support future organisation collaborations
- Consider the volunteer to peer worker path and other paid work opportunities.
- Perinatal Lived Experience Framework project report.