A novel way to explore parental life-limiting illness

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 and my PhD explored children’s experiences when a parent is at the end of life. I now work to raise awareness about parental life-limiting illness and the impact on children. 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, as a society, 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.

It sometimes feels like I am a small voice in a noisy world where, in this field, everyone is competing to share their opinions and beliefs. This frustration is compounded with the awareness that there isn’t always recognition that children are also affected by their parent’s illness and that they too often need support to help manage all the changes and challenges within their family.

The idea of writing a novel to raise awareness and to share my knowledge, experiences and passion came about after a chance conversation with my partner. Maybe that was a way forward and maybe a novel would be the medium for connecting with a wide audience.  The seed had been planted – write a novel and continue to try to make a difference about something that I am passionate about.

I found the process of writing Our Family and IT relatively easy. It took just four months to write and I didn’t once experience ‘writer’s block’. From the early planning stages I felt that, in line with the aim of the book, I had a responsibility to focus on the social and emotional impact of the illness and not on symptoms, treatments or a medical model.  My professional background is in social work and throughout my career 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 Williamsons’ 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 ramifications for all the family.

When thinking about the characters I carefully selected the ages of the three children to reflect how children at different stages typically cope and manage when a parent has a life-limiting illness.  For this I drew on child development research along with dying, death and bereavement literature. I wanted the experiences of each family member to be a true and accurate representation of what potentially could happen. I also wanted their actions, reactions and behaviour to be credible but also sufficiently edgy to make the reader question whether children would really behave in such a way. I was therefore very happy when an acquaintance, who was kindly reading a late draft of the book, questioned whether the fourteen year old would ‘really behave like that’.  Their comments and observations suggested to me that I had challenged their thinking. The story had made them stop and think about some of the potential repercussions when children and young people are not included in conversations about the illness and when they are not supported with what is happening. My proof-reader and I spoke about the antecedents leading up to the fourteen year old’s behaviour and I spoke, from experience, about how it would be probable that such behaviour could occur.

A potential challenge could have been getting the book published. I know that publishers receive countless uninvited proposals each day and that there needs to be an attractive ‘hook’ to grab their attention.  As an unknown author, writing about an emotive and often ignored subject I surmised that my ‘hook’ might not be sufficiently attractive. So I decided to self-publish, which in itself then creates many challenges; perhaps the biggest being marketing and promotion.  How many times can you post on Social Media without annoying your followers? There is also the risk that your fervent conversations about the project will begin to grate on family and friends very quickly. They may be interested in your work but it is unlikely they will have the same commitment or interest as you!

A personal challenge was to my confidence when I set up a Crowdfunding campaign to help raise funds for the publication. The response was poor and I became disheartened for a brief period. I think I was so emotionally connected to the idea of the book, the plot and characters that I struggled to understand why people would not want to donate to my project.   I looked at other Crowdfunding projects and saw the pledges mounting and wondered why my page was not attracting any attention despite my best efforts to promote it. The conclusion I came to was that the subject area was niche and therefore did not have the ‘hook’ to attract potential donors. However, my belief in the book and the messages that I wanted it to convey were such that I carried on. Still the doubts creep in, mainly when I receive the monthly sales spreadsheet from the company that printed and now handles the distribution of the book. But slowly they are being tempered by the positive feedback that is being shared on Social Media. One kind, positive comment about the book goes some way to help banish self-doubt.

And so Our Family and IT is out there for public scrutiny. I hope that when people read it they do stop, think and question. Is it really fair that pregnant women get great antenatal care and yet when a parent is dying there is no universal equivalent? Is it really fair that families are generally expected to cope and manage the best they can when faced with the most impossible crisis? Maybe the book will begin to change attitudes and extend people’s thinking to incorporate the impact on children and family life as well as the patient.  After all life-limiting illness affects all the family, not just the patient.




Rachel has worked for many years in social care, starting her career in the early 1980s as a Nursery Nurse. She is a qualified and registered social worker and now works as an independent researcher and campaigner. Rachel’s PhD explored children’s lives when a parent is at the end of life. This was a qualitative study where the voice of the child was paramount.  Her primary area of academic interest is the social and emotional impact of parental life-limiting illness on children and family life.





Rachel can be contacted via –

Email – rachel.fearnley@yahoo.co.uk

Twitter – @RachelFearnley1

Website – http://www.rachelfearnley.co.uk/


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