by Rachel Fearnley PhD DipSW
What does a mother say to her six year old when asked the question no mother wants to hear? How do parents begin to tell their children that their mother has an illness that is life-limiting?
Where do parents get help, support and guidance when they are diagnosed with an illness that is potentially life-limiting?
These are a few of the questions that I have been trying to find answers to and which have led me, temporarily, away from academic writing into the world of novel writing. Our Family and IT is the story of an ‘ordinary’ family faced with extra-ordinary challenges and changes following the mother’s diagnosis of a life-limiting illness.
The story is based in part on my research and practice. I have worked with children and families for many years, latterly as the manager of a Barnardo’s family support service. It was while at Barnardo’s that I became increasingly curious about how family life can be affected when a parent has a life-limiting illness and the implications for social work practice.
This curiosity led me to do a PhD which explored children’s experiences when a parent is at the end of life. Part of my work now is to raise awareness about parental life-limiting illness, the impact on children and how best practice can be developed.
We know from research that all aspects of children’s lives can be affected when their parent has a life-limiting illness, and that the implications from this can be enduring. We also know that there is no universal support for this community of children and their families and that their needs are often not seen as a priority.
‘Uphold my values’
As a social worker, I have always tried to advocate on behalf of those who are invisible or who don’t have a voice. Our Family and IT seemed to be a different but nevertheless important opportunity to uphold my values and beliefs and promote an aspect of life-limiting illness that is given little attention. The illness that becomes the uninvited guest in the Williamson’s home very quickly became “IT” a non-specific illness. I didn’t want one illness to have precedence over another. Whatever the illness, it is going to potentially have huge social and emotional ramifications for all the family.
My hope is that this novel approach will reach a diverse audience of readers who will react to the story and begin to question the plot. Would the conversations between the parents, regarding talking to their children about the diagnosis, really happen? Do families really struggle to navigate their way through parental life-limiting illness? Would the characters really react like that? If after reading the book such questions are considered and readers do connect with the family’s narratives I will feel that an aim of the book has been achieved.
If through it we can begin to have meaningful conversations about the need to change some small (but significant) areas of practice then I will feel my foray into novel writing will have been a truly worthwhile exercise.
The book has started to initiate discussions with social workers and social work students. In October I was privileged to be part of the @SWBookGroup which brings together social work students, qualified social workers, academics and colleagues from allied professions to discuss novels which have relevance to social work practice.
Amanda Taylor-Beswick (Senior lecturer at UCLan) is the driving force behind the book group which is ‘traditional’ insomuch as people read the nominated book and then come together to discuss it as a group but it also embraces technology and invites people to join in the discussions via Twitter. The event generated a lot of debate and discussion about the book, the characters and the impact on practice.
Comments from the attendees suggested that the story had had resonance for them and had invited them to reflect on their practice. For example, one social worker related the Williamson’s story to a case they were currently involved in. As a result, they reflected on how the family was being supported by all the multi-disciplinary team (MDT) and how small modifications to practice could be empowering for the family.
People spoke about how they connected with the different characters and how reading their stories affected them. One attendee said that as they were reading about Daniel (the 14 year old) they were willing him not to take the route he briefly took. For another person the reflections of Nathan (the father) about Daniel’s behaviour had affected them and challenged their thinking about implications for practice.
It was evident that reading the book had had an impact on the reader and people took an interest in the family’s stories. My hope is we can build on that interest so that more people begin reading their story and start to ask questions about how as social workers we can make a difference for all the Williamson families facing parental life-limiting illness.