Our Family & IT: Festival of Debate Interview
We sat down for a chat with Dr Rachel Fearnley who is hosting the upcoming Festival of Debate event - Our Family & IT: Exploring Challenges, Dilemmas & Moral Obligations of Parental Life-Limiting Illness on Tuesday 14 May from 12-1:30pm at Union St Co-Working Space.
Firstly, can you tell us a little bit about the work you do?
I am a qualified, registered social worker who has worked with children and families in different settings for over 30 years. I now work as an independent researcher and trainer. I'm particularly interested in how parental life-limiting illness impacts on children and family life. I am passionate about trying to increase awareness about this often ignored area of care so that children who are living with a parent who has a life-limiting illness receive recognition and appropriate support.
What prompted you to write your debut novel, Our Family and IT?
I've been working in this area for some years now but two years ago I began to feel that I was making little impact with my work. This frustration was the prompt for me to write Our Family and IT. I thought that the book would be a novel way (pun intended) to help raise awareness about the impact of parental illness and to generate conversations about some of the issues families typically experience.
It is about an ordinary Yorkshire family who are faced with extraordinary changes and challenges following the mother's diagnosis of 'IT' a non-specific illness. I was aware that I did not want to write about a particular illness. This was in part because I wanted the book to focus on the emotional and social impact of life-limiting illness as opposed to symptoms and treatment, but also because I did not want to give one illness precedence over another. It does not matter what the illness is, it is very likely to have serious consequences for the patient and their family.
We continue to live in a death-denying society
The topic of parental life-limiting illness and the issues surrounding it are hardly discussed and often ignored. Why do you think this is?
A fundamental issue is that we continue to live in a death-denying society. There remains a taboo around dying and death and as a consequence we rarely have conversations about it. This is especially true in relation to parental life-limiting illness and how this affects children. The idea of children being bereaved of a parent goes against societal norms and does not fit in the logical order of life so therefore maybe we avoid thinking about it.
Maybe such thoughts would challenge the predictable, safe order of life and make us question our own mortality? I also think there remains a fear about talking about dying and death. As professionals we often have anxieties about not feeling confident or competent to tackle such 'difficult' subjects. This was certainly highlighted during my research. The lack of training for health, social care and education professionals about how children are also affected by parental illness adds to the fear of talking about it.
What do you think are the benefits of encouraging discussion around parental life-limiting illness?
An important benefit of encouraging discussions about parental life-limiting illness is that as a society we would become more comfortable engaging in such conversations which would then help to normalise it. If we start to recognise and acknowledge that children do live with parents who have a life-limiting illness, we might be able to put in place support to help children and families to find positive, practical ways to manage the situation. We will never totally prevent illness but I do believe we have a moral duty to at least recognise that children are also affected by their parent's illness.
What do you hope people will take away from your event?
My hope is that following the event people are left feeling challenged and inspired by what they have heard. From this I hope they begin to have conversations with family, friends and colleagues and through this help initiate a greater understanding about children and parental life-limiting illness.
Flick Jackson
