Overcoming Barriers to Co- Production, A Parent Carer Perspective

I love co- production because it is a way of working where everyone around the table has an equal voice. When I talk about co-production, I mean it from a viewpoint of complete equity which includes removing barriers to maximize participation and paying and crediting people for their work.

As a carer my most valuable asset is my time, and I am often expected to gift it freely. So often I have been invited to meetings, research groups, service planning groups, where I have contributed my knowledge, thoughts, ideas, told my stories and I have not been paid, or treated as an equal. My intellectual property has been gathered, stored, and used. I am invited because I am a parent carer and invited back because I am recognized as an idea generator and problem solver. And yet, often these meetings are full of people who are not actively contributing and are being paid well to be there. These meetings are often full of people who do not know what it is genuinely like to live as a 24/7 carer, and yet their vote has been the one that counts. I have felt that my pain, hope, fears, and stories have been exploited in the past to further other people’s career agendas or ambitions all the while my family have been left to flounder and that is not right. 

I often volunteer my time to research and community projects. I am over generous with gifting this precious asset of mine because for me often the cause outweighs the financial elements. I am fueled by love and driven by pain in the pursuit of equality. I know professionals who need lived experience insights know this though. Families of disabled children and those who live with poor health are often vulnerable. We are in pursuit of answers. We want to make sure we leave no stone unturned, and it is important that this desperation is not taken advantage of. It is important that people are protected and treated well. Research can be a very extractive process, often requiring participants to give more than they get back.

I have found that the best research I have taken part in has been co-produced. I am also more likely to take part in a research project if it is co-produced. However, there have been times I have been involved in projects that misrepresent co-production. Co-production done in a tokenistic way can be damaging, leaving people feeling angry, frustrated, used, and undervalued. In the long term, this can lead to a mistrust of services (all round). It can lead to bad reviews and feedback and people not wanting to get involved. It can lead to people having trauma responses to simple questions, because of the number of times they have had to re-tell painful stories.

Tokenistic research I have experienced is:

• Doing to and not with
• Minimization
• Not feeling like I am a valued partner in the process. 
• Not being listened to (especially when I have identified a barrier to participation- such as times of engagement, financial constraints, communication preference, childcare issues.)
• Lack of transparency 
• Not having information in advance, or being upfront and honest about what is expected
• Taking advantage of people’s good nature. i.e., expecting people to do considerable amounts of unpaid work under the guise of volunteering and at their own expense but to meet the researchers’ needs
• Researcher name on work but no thanks or recognition for contribution to work
• Being the only one not being paid for the work
• Not getting informed of the research outcome

I am invested in co- production when it is done well because co-production done well makes you feel valued and included. It has the power to change lives. It has the power to change my family’s life, to improve outcomes for my child. It has the power to ensure better outcomes for all involved because it is equality in action. 

Here are my top 20 recommendations to create a co-produced working environment that will help people feel valued and included 

1. Pay people for their time
2. Make the space feel a safe place to talk 
3. Using simple jargon free language
4. Be trauma informed
5. Be transparent, upfront, and honest 
6. Produce timelines to allow people to plan ahead 
7. Good communication- for example, give people information in advance 
8. Provide clear information about what is expected (This will help manage people’s expectations.) 
9. Provide a step-by-step process  
10. Ask people in advance what their communication preference is 
11. There needs to be a focus on kindness, wellness (Do not underestimate coffee breaks and the discussions and connections that happen over these) 
12. Provide diverse ways for people to feed back
13. Do not go in with preconceived ideas. Let the room guide the conversation and common themes will naturally occur
14. Round table discussions are great
15. Keep people informed about the work progress
16. Provide opportunities to feedback after meetings- Tools like jam board are useful
17. Actively listen 
18. Plan to go overtime and provide people with a means of communication outside the meeting. If people leave feeling unheard you may lose their future participation and in doing so you will lose out on potential valuable data contributions
19. Allow time for open discussions
20. Credit people for their input and intellectual property

I often hear blame placed on lack of financial resource, but you will see in my list of recommendations that actually very little of the recommendations focus on financial elements and the recommendations focus mostly on communication, values, ethics, and creating a welcoming environment.