Our Family and IT – Ponderings of a Passionate Maverick
How do parents tell their children that they have an illness that might not be curable? How do people contemplate having that conversation, which, let’s face it is probably the hardest conversation they will ever have to have?
These are questions that have interested me since I completed my PhD in 2010. I have worked for over thirty years with children and families in social care and have loved (nearly) every minute of it. My last ‘proper’ job was as the manager of a Barnardo’s family support service in the UK. We provided preventative support to families with young children (under the age of 8 years) and it was the most brilliant job. It was while I was there that I became increasingly curious about how serious illness, dying and death impacts on family life. I was regularly hearing stories from mothers about how following the birth of their babies they were struggling to cope with significant bereavements from their childhoods. In one of my headstrong moments I decided to apply to do my PhD (there are some notable events in my life where I have ‘done first and thought second’!). My research explored children’s experiences when a parent is at the end of life. It was a qualitative study as I wanted to hear the voices of children and young people and wanted them to have a platform to tell their stories.
After completing the research I started working as an independent researcher / consultant. During this time I have been employed as a part time Teaching Fellow and worked for different national and local charities where the emphasis is on life-limiting illness. I have written an academic book (Communicating with Children when a Parent is at the End of Life – Jessica Kingsley) and developed a resource for professionals working with children and families (Let’s Talk About Dying – Speechmark). In addition I have set up (sadly unsuccessfully) a local support group for children and families, and have delivered training sessions in universities to social work students.
Throughout this time I have been trying to raise awareness about children’s lives when living with a parent who has a life-limiting illness. There is beginning to be more support and recognition for bereaved children which is excellent, however, there remains very little for children who are living with an ill parent. This saddens me greatly as children often struggle during the illness because of all the changes and challenges that typically accompany illness.
My latest attempt to raise awareness is through my debut novel. Our Family and IT, is about how a family tries to cope following the mother’s diagnosis of a life-limiting illness. Although it is about a fictitious family the changes, challenges and issues that they are forced to manage are very real. I hope that people read the book and take time to think about the story. What support does the family receive, what support would they like and how do they manage some very difficult and painful situations? The book has been influenced by my PhD and draws heavily on all my research and work experiences. Writing it has been a challenge to balance ‘a good story’ with the desire to use it as a platform to describe some serious social issues. However initial reviews are very positive and reassuring. The book was (self) published in May 2018 and sales have been steady so far.
So what next for a passionate maverick? I think my priority is to stick with the social issues that are important to me and use the privileged voice I have to speak for those whose voices aren’t always heard!
Our Family and IT, is available from: http://www.ypdbooks.com/
If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.
I’m a regular Contributor at “The Mighty”. You can check out my published articles at My Author Page
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