Challenging society’s negative narrative to understand the positivity of caring for a child with disabilities

with Dr Joanna Griffin, University of Warwick

Dr Joanna Griffin is a university researcher, psychologist and a parent carer. She’s currently working on a new online programme for family carers - and co-produced by them, called Positive Family Connections. Joanna and her colleagues at the University of Warwick are investigating what co-production really means and what good practice looks like when ensuring disabled children and their families and carers are closely involved in programmes for them.

One of the issues many carers face when participating in research, or when invited to give views to local or national government, is their time is often not compensated. This means they can be the only unpaid people at the table- and sometimes even their travel isn’t paid for, not to mention the cost of backfilling their caring responsibilities. This research has a different - and much-needed— approach.

Joanna has written about the project for us:

Family carers at the heart of research by Dr Jo Griffin and the University of Warwick Positive Family Connections team

Families of disabled children have many skills and strengths that can contribute to the development of services and research. Unfortunately, though, these skills are not always harnessed by organisations and professionals.

What is co-production supposed to achieve?

Co-production is an approach where families and professionals work together meaningfully to improve outcomes and services for all. True co-production involves families in a way that respects what each person brings (theory, research and lived experience) and where power is shared equitably. Importantly in Positive Family Connections, family carers were paid a professional rate for their expertise and time.

Positive Family Connections

The Centre for Research in Intellectual and Developmental Disabilities at the University of Warwick focuses on research to support people with Intellectual (learning) and Developmental disabilities and their families. One such project is Positive Family Connections, a new online six-week programme for families who have a child with additional developmental needs (learning disability, autism, or both) aged between 8-13. It was co-produced with family carers from the start.

Positive Family Connections is a positively-oriented, family-focused programme aimed at enhancing relationships within families with a child with a learning or developmental disability. Our relationships with those closest to us are key for the wellbeing of the whole family and that is no different when there is a disabled family member. We define ‘family’ in the widest possible sense acknowledging that families come in many different forms. We can be connected to others through birth, affinity (e.g. marriage) or choice. At its simplest, for this programme, a family can comprise a family carer and child with a learning or developmental disability. It may also include a partner, uncle, cousins and grandparents for some families. In others, it may be the parent and child along with friends or even a support worker.

The programme adopts a positive narrative to having a disabled child, challenging the predominantly negative narrative that exists in society and academia.

How did the project work?

Over several meetings with five family carers, three researchers and me, Dr Jo Griffin, a family carer and researcher myself, designed a virtual programme aimed at enhancing family relationships and connections. The programme includes real-life examples and topics that the development group shared, combined with the latest evidence from research and theory.

We produced a paper describing the development process for the Tizard Learning Disability Review[i]. Table 1 outlines key features of co-production as outlined by the National Institute for Health Research (NIHR)[ii], which is a research funder and partner of the NHS.

  Table 1: Key features of co-production (NIHR, 2021)  

1. Sharing of power – the research is jointly owned and people work together to achieve a joint understanding
2. Including all perspectives and skills – make sure the research team includes all those who can make a contribution
3. Respecting and valuing the knowledge of all those working together on the research – everyone of equal importance
4. Reciprocity – everybody benefits from working together
5. Building and maintaining relationships – an emphasis on relationships is key to sharing power  

We first ran a feasibility study- a small trial to see if a larger trial of Positive Family Connections would be possible in the future, and this proved successful. At the end of this phase, we held a meeting for the group to come together in person as all previous meetings and discussions had taken place virtually. At this meeting, we shared the findings and discussed the next steps. As the findings are encouraging, we can hopefully go on to apply for a larger fund to run Positive Family Connections for more families. Here are photos taken at the meeting.

What did the carers think of the project?

Some of the family carers share their thoughts and reflections on the process below:

“Facilitating with Positive Family Connections allows me to put the daily challenges of special needs parenting to good use. I have learned so much about myself, processing my feelings as we go through the course. I’ve learned from the other family carers too as we grapple with issues together. Throughout the process I have always felt my suggestions and views are listened to and valued by the whole team. I have made friends along the way and it feels like a safe and supportive working environment where I am seen as not just a ‘special needs mum’ but someone who can use my brain to contribute to an impactful project that will make a difference to people’s lives.”

“It has been a great pleasure and privilege to be part of Positive Family Connections. Creating a new programme for family well-being by family carers was a wholly positive and empowering experience. I have learned something valuable from every person in the project. When we began the coproduction process no one knew what shape the programme would take, what it would contain etc, and the possibilities were many but now it has been written I can’t imagine it being any other way. I am incredibly proud to have contributed to this resource and also to the evidence base that a group of family carers (with the right support and guidance) have the skills to create a programme of support for families. Being led by a researcher who is also a family carer gave the project even greater authenticity. Through this process, I have made connections and friends that have enhanced my own quality of life and well-being.”

How was it successful?

‘If I were to reflect on my thoughts around being involved in the study I would say that it’s so refreshing to be involved in a project where there is genuine co-production. So often as a parent carer I feel my views are sought as a ‘box-ticking’ exercise when decisions have already been made and so my opinion will change nothing. In PFC there is real recognition of parent’s knowledge and expertise. We are listened to and can see how our thoughts and feedback shape the project.” 

It has been really rewarding to design and pilot the programme as part of the feasibility study and meet other family carers from across the United Kingdom. I have learned so much from my colleagues and it was great to finally meet them in person to share the success we have achieved to date, while also enabling us to focus on next steps.

For me, some of the factors that have made co-production so successful in this instance are:

  • We all united quickly behind the shared objective and vision for the programme and remained committed to it over a long period
  • We have been extremely respectful of each other’s personal, professional and cultural backgrounds
  • We have all brought our knowledge, skills, lived experience and positive mindset to support its co-creation and evolution
  • We have focussed on the strengths that the individual brings to the collective
  • We have been good at listening and sharing thoughts and ideas without the fear of them being rejected or individuals being too possessive of them
  • We trusted smaller working groups to develop materials and then present their work for comment by the wider group
  • We have been ambitious but also realistic at the same time
  • We successfully made the process fun and meaningful through our connections with one another

I really hope other initiatives can similarly approach co-production in this manner because it has significant potential to lead to more successful outcomes in the special needs arena.

Hear more from the family carers below:

Moving forward

A lack of collaboration with family carers can exacerbate the ‘them and us’[iii] feeling between professionals and carers which can be disempowering and divisive.

As well as the five NIHR principles outlined in Table 1, the group also felt it was important to disseminate information about co-production more widely. This is in part to promote the benefits of co-production to researchers and services, as well as to encourage family carers to get involved and remove some of the ‘mystery’ around what research entails. That is part of the reason for writing this article for Special Needs Jungle and its extensive audience. Your voice matters and your skills and knowledge are highly valuable.

Positive Family Connections team

  • Jillian Allan, family carer
  • Debbie Austin, family carer
  • Natasha Boxill, family carer
  • Kevin Burchell, family carer
  • Ellie Finch, family carer
  • Sam Flynn, Assistant Professor
  • Jo Griffin, family carer and Assistant Professor
  • Rasha Haffidh, family carer
  • Lucy Hasler, family carer
  • Richard Hastings, Professor
  • John Lynham, family carer
  • Claire Percival, family carer
  • Daniel Sutherland, PhD student

References

  1. [i] Griffin, J.Austin, D.Lynham, J.Hafidh, R.Boxill, N.Sutherland, D.Flynn, S. and Hastings, R.P. (2023), "Positive family connections: co-producing a virtual group programme for family carers of children with learning disabilities or who are autistic", Tizard Learning Disability Review, Vol. 28 No. 3/4, pp. 61-70. https://doi.org/10.1108/TLDR-03-2023-0008 (you can request a copy from jo.griffin@warwick.co.uk)
  2. [ii] National Institute for Health Research (2021) Guidance on co-producing a research project, April 2021 [NIHR Guidance on co-producing a research project (learningforinvolvement.org.uk)] (Accessed on 9th June 2023).
  3. [iii] Griffith, G. M., & Hastings, R. P. (2014). “He’s hard work, but he’s worth it.” The experience of caregivers of individuals with intellectual disabilities and challenging behaviour: A meta-synthesis of qualitative research. Journal of Applied Research in Intellectual Disabilities, 27, 401-419.

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