Written by Dr Rachel Tindall (PhD) – Barwon Health

In my role, I frequently facilitate co-design activities. Participants, depending on the design context, generally bring one or more of the following perspectives:

• Lived experience, consumer
• Lived experience, carer
• Mental health clinical (e.g., doctors, nurses, social workers, psychologists)
• Lived experience professional (e.g., peer workers)
• Health service management
• Non-clinical staff (e.g., administration)
• Other relevant departments (e.g., capital works)

As a facilitator, I bring together all the key people who will be affected by the ‘entity’ being codesigned. My challenge is to enable a space for authenticity and vulnerability, that is also safe and productive for all participants.

I have found that many people mistake co-design in public mental health as solely hearing from those with lived experience of service use. Whilst I strongly agree with the need for the voices of those with lived experience to be heard, elevated, and respected, I struggle when this becomes the only goal. In public mental health, understanding the perspectives and stories of others, such as clinicians and health service staff, is also paramount. Without this knowledge and expertise, design ideas and decisions may not be able to be feasibly implemented within the complexity of the mental health system.

The task of a co-design facilitator is therefore to build an environment of equity so that all perspectives can be heard and considered. I often come back to this image, which was produced by the Interaction Institute for Social Change (artist Angus Maguire).

Image from interactioninstitute.org and madewithangus.com

Different people may need distinctive types of support to reach the same level of participation. However, are we considering this diversity in the support people need deeply enough before embarking on co-design activities? To highlight the extent and diversity of support required, I’ll focus on some of the supports that two different participants groups (lived experience and clinical) may benefit from.

Lived Experience

In co-design, consumers and carers are invited into unfamiliar settings to discuss serious and often distressing topics on which they have personal experience (Cataldo et al. 2021). For many, it is the first time they are sharing this type of information. It may be beneficial to provide and / or work through storytelling frameworks or readiness proformas with participants prior to co-design commencing. A range of resources are available here: https://aci.health.nsw.gov.au/projects/co-design/library-of-related-resources. During co-design, facilitators need to be emotionally attuned to participant’s levels of comfort and discomfort, ensuring that people feel confident in their role and reasons (purpose) for being present. As there is a risk that power imbalances could be re-enacted during the co-design process (e.g., clinician–consumer), the facilitator needs to respond to any conscious or unconscious demonstrations of power that occur. Depending on the length and type of codesign activity, access to immediate support, debriefs, supervision, mentoring and reflection may also be required to maintain safety and enable full participation

Clinical

Often overlooked are the supports that clinicians require to feel safe and supported during co-design. Clinicians are working with the impossible challenge of providing kind, person-centred care in a system that is standardised, risk-averse, under-resourced and highly regulated (Ballatt, Campling & Maloney 2020). There is a risk that when clinicians are placed into co-design activities, they may fall into the role of advocating for design decisions that may be restrictive or non-person centred. These outcomes are likely not what the clinician would want in an ideal (or any) situation. Or individual clinicians may take on the role of a scapegoat for an ineffective system, which can contribute to defensiveness, disengagement, or helplessness. Without suitable support and facilitation, this group may not be able to articulate the meaning, motivation and emotions behind an opinion or perspective. Clinicians often benefit from education on how to frame their experiences beyond a simple ‘that’s how it’s done’ to ‘this is what I experience, and this is how it can impact the care I am providing’.

It is important to also be mindful that as humans, we do not fit well into tidy categories. We enter co-design as unique individuals, with a range of experiences that often blur the boundaries between defined roles (i.e., a consumer may also be a carer, a clinician may also be a consumer). However, that is a discussion that requires its own reflection.

A useful resource that helps unpack the different needs of participant groups can be found here: https://aci.health.nsw.gov.au/__data/assets/pdf_file/0013/502240/Guide-Build-Codesign-Capability.pdf . This resource provides guidance for those entering co-design, focusing on capabilities, behaviours, actions, enablers, and barriers specific to each role. I have found it useful to guide conversations I have with participants prior to commencing co-design activities.

However, two actions that I hope you can take-away from this reflection are:

• To enter co-design with a willingness to get to know other participants as people. Most people are doing the best they can with the resources they have available to them.
• To make a commitment to maintain curiosity and listen to understand.

By doing this, we can contribute to safeguarding a space of equity for all present. Whilst some people may need more (or less) support to participate equally in the process of codesign, every person and perspective brings value. Understanding this opens a space for true innovation and cultural change to occur.

References

Ballatt, J., Campling, P. & Maloney, C., 2020. Intelligent kindness: rehabilitating the welfare state. Cambridge University Press.

Cataldo, M.L., Street, B., Rynehart, S., White, C. & Larsen, K., 2021. Remembering radical roots: Lived experience participation movements and the risks and responsibilities of co-design in community-led change. Parity, 34(6), pp.13-16.

About the writer

Rachel is a mental health nurse employed as the Program Implementation Manager at Barwon Health Mental Health Drugs and Alcohol Services. She has clinical, research, project management and senior management expertise and is a strong advocate for lived experience participation at all levels of mental health service reform, design and delivery.