We’ve all experienced the frustration and anxiety that comes from trying to communicate something important to a person who doesn’t appear to be listening or understanding. It’s especially hard when the communication involves trying to access services for your loved one.
When I’m trying to assert myself with staff on behalf of my son, my body language changes, and staff can see me as aggressive, they might see me as a difficult parent, but it’s because what I’m saying is important to me and my son.
Just as staff can come to see parents as ‘difficult’, so parents can become mistrustful, feeling as if everything has to be fought for:
As a parent, I’d like to be in a position where I no longer have to get angry or feel I have to fight. I want to be able to discuss things with professionals with mutual respect.
Such conflict is stressful for both staff and parents. But how can they discuss things ‘with mutual respect’ when discussion always takes place in a professional setting where the us/them division is clear?
The charity Pamis (promoting a more inclusive society) supports parents whose children have profound physical and learning disabilities. These are parents who, over the years, develop considerable expertise in their child’s condition and needs as well as in accessing services. Together with the Allied Health Professional CYP team at Fife Health and Social Care Partnership, Pamis recognises the importance of finding a different way for parents and practitioners to talk together.
As part of our Fife pilot of Connor Goes Swimming, both organisations saw an opportunity to see how our approach could support parents and practitioners to talk together in a non-professional setting.
Our group was an even mix of parents and practitioners, small but diverse:
- male voices (as both parents and practitioners) alongside female
- students alongside highly experienced practitioners and managers
- parents who are different stages in their journey, with different experiences and approaches, alongside practitioners.
- voluntary sector staff alongside NHS.
But, as someone commented, you couldn’t really tell by looking who were practitioners and who were parents.
People came to share information and expertise, to listen to each other’s stories, to see if this process would help create greater understanding and help transform relationships between families and services. When asked what they wanted to be different they said:
- more credit to be given to parents as experts on their own child
- parents to be listened to more often.
- to remove the barrier between professional and parent
- opportunity to discuss things in a non-threatening and non-judgemental environment
One person there was a student OT from Glasgow Caledonian University, on the second day of her placement with Pamis:
We were presented with a case study of a young boy (Connor Goes Swimming) whose parents were concerned and frustrated at his apparent lack of progress in normal development milestones; more specifically that he could not yet ride a bike. The structure of how we broke down and discussed the case study allowed us to gradually grow in confidence as a group and reveal more and more about our opinions and our experiences when it came to perceiving and meeting the needs of service users and carer families.
So what did she learn?
For me, as a student, I was able to ask questions I had not considered asking before in other placement settings…I was also able to candidly express some of the worries and stresses I have experienced trying to understand and communicate with frustrated service users and families, and find out from open and honest opinions why parents and service users can appear angry and defensive at systems that are supposed to be put in place to help them. I valued this experience as we were provided with a safe space to explore and tease out these difficult feelings and encouraged to listen to all sides, not just our own.
We asked how the Storyworlds Life approach could help people transform relationships between families and services. Here are some of their comments:
- It helps because you’re hearing a real situation that’s happened and you explore the views on both sides
- It offers an excellent structure for safe discussions to take place
- it helps us think about he whole care around the child
- It helps us develop our communication with parents, be more compassionate and ask the right questions.
This was the first time that we’d used our approach in a mixed group of parents and practitioners and we were all delighted at how well it worked. We learnt:
- How valuable a small group is in providing an environment that feels safe enough for people to want to contribute and to feel that their contribution is important
- This approach (and the tool Connor Goes Swimming) could offer a systematic way to gradually transform the relationship between families and services by offering meaningful conversation in small diverse groups
- The value for parents and practitioners of having freedom to ask one another questions that are nothing to do with a professional consultation.
If you would like more information about this work, then please contact us.