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. 

NDAS22- Through the eyes of a Parent Carer

I was invited to speak at Edinburgh University at the Neurodevelopmental Disorders Annual Seminar (NDAS22) conference. The conference was wonderful. From start to finish, I was included and made to feel welcome. There was warmth in the room and a buzz of excitement. One of the things that really struck me about the day was how considerate the researchers in the room were and how they were keen to do right by their participants. 

I can see solutions for many of the issues we face and yet system deliveries often cut people with lived experience (like me) out of the conversation at the initial stage. This got me thinking, wouldn’t it be wonderful to normalize a grass roots approach to the culture of co-production in research? A system whereby people who know how, meet the minds of the people equipped to make it happen? A mutually beneficial exchange of knowledge resources.

When it was my turn to speak, I spoke about my experiences of co- production in the wider sense and then focused on two research case studies I had been involved in and how they made me feel; Genuine vs tokenistic co-production. I explained how co-production is a values-based approach. It is about creating a meaningful environment where everyone feels heard and valued. My role on the day was to offer insights as a parent carer representative. I was there as someone sitting on the other side of the research fence, offering a different viewpoint for consideration. But I also felt like I was a fly on the wall, peeping through a half-closed door. I was getting to see how the world of research worked from the inside. I left the conference feeling energized and inspired because I had learned a lot and this knowledge would be useful for my family. When I spoke, I felt heard. I know that my contribution to the day would have helped others reflect on their practice. It gave me hope and I found comfort in seeing firsthand the passion from people in the field, excitedly talking about their work and keen to fulfil their role to the best of their ability.

Next week, I will be posting a blog about being involved in tokenistic co-production research versus genuine co-production research and how they each made me feel.