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We live in stories, not statistics’ is a quote by Kathleen Gilbert that I am often reminded of. At a personal level, stories have been instrumental throughout my career. In the early 80s when I started work as a nursery nurse, story time with the children was always a highlight of the day. As my career progressed and I became a social worker, there was a shift from telling to listening to other people’s stories and within that helping them to try and make sense of what was occurring in their lives. Later still, the importance of listening to stories became paramount during my PhD. Central to the research was listening to children and young people’s stories and learning directly the impact parental life-limiting illness had on them. Latterly I have completed the story telling cycle by writing a novel to highlight some of the issues children and families experience when a parent has a life-limiting illness.
I am particularly interested in developing opportunities for children to share their stories and experiences of living with a parent who is potentially dying. Importantly within this, I want professionals and policy makers to listen to these stories and to take heed from them. We know from research, including my own, that the period prior to the death is often far more difficult for children than the time following the death. As one young person said to me during my research ‘everything is kind of random [before their mother died] but after at least we knew what was happening.’
The uncertainty of what is going to happen to the parent, along with often not being fully included in information about the situation, has the potential to cause anxiety. I am a great advocate for including children, to the extent that they want, in conversations and information sharing about the illness. There is often a tendency to think that by not talking to children about the illness we are ‘protecting’ them and helping to save them from unnecessary upset and anguish. However, this is often counter-intuitive. Children generally do know what is happening, or at least know that something significant is happening in their family. My worry is that when this happens, they put two and two together but do not make four.
Stories from my research showed how children knew that something was wrong even when not told what was happening. They observed changes in their parent’s behaviour, they watched as their parent’s physical health changed and were concerned to see fluctuations in their mental well-being and emotions. Suddenly the parent stopped going to work or started having many more medical appointments. Relatives and friends started to visit and conversations were held in hushed tones. There was a collusion on pretence that ‘life was normal’ when in reality the children were very aware that whatever their ‘normal’ was had been changed.
The stories I was privileged to hear helped me develop the idea of a Communication Continuum. This continuum helps represent where children are ‘placed’ in relation to the information they are given about the illness and the extent of opportunities to talk openly about what is happening. In my research I noticed a correlation between the amount of involvement children had with regards to their parent’s illness and how they appeared to be managing during the bereavement period. It was apparent that children who had been better informed about the illness and who had had opportunities to explore what was happening, along with their feelings about the family crisis, were generally the ones that had more robust coping skills and who demonstrated greater resilience. For example, Georgina aged 10 had been informed about the illness and had been included throughout. One of her many observations was most salient: ‘I was glad you told me [referring to her mother who was present during the interview], or I would have been more shocked… I wouldn’t like it to be hidden, I knew something was wrong. I would rather have the shock then instead of a big shock at the end.’ Georgina appeared to have found positive strategies in her bereavement and although she reported still being very sad about the death, she was managing her sadness positively and in a safe way.
Georgina would be placed towards the open end of the continuum whereas in contrast Jennifer’s story was very different. She was aware that her mother was ill but had never been told the seriousness of the illness nor the fact that her mother would die at a young age because of it. Jennifer recalled, with great clarity, the day her mother died and the shock when she realised what had happened. Jennifer talked about how she had struggled emotionally and psychologically following her mother’s death, resulting in the necessity to access mental health services. Jennifer’s story is an example of when children would be placed at the closed end of the continuum. The Communication Continuum is not static and children can move along it dependent on their current situation. Therefore, if they are initially placed towards the closed end but then begin to be included in conversations about the illness, they are likely to move more towards the open end. Equally, if they are placed towards the open end but then stop being involved in conversations, they are at risk of moving towards the closed end.
I believe we still live in a society where the two constructs of children and death are not seen as being compatible. There remains the ideology that we need to protect our children from the pain, sadness and ‘untidiness’ of life limiting-illness, dying, and death. I know, from personal experience that parental death during childhood is one of the most difficult life events for any young person. I also know that as adults there is often a protective sense that means children are ‘shielded’ from this reality of life. However, life-limiting illness is a reality of life and if we try to ignore it and keep children away from what is happening, we are doing them a great disservice. It is a sad reality that we cannot cure all life-limiting illnesses and people (parents) are going to continue to die. What we can do though is begin to see that death is, sadly, a normal part of life and once we begin to normalise it for children, they will be more likely better able to cope with what is happening. As professionals we need to have the confidence to know that talking about the subject is not going to harm children and in fact it is likely to free them up and give them permission to talk about something that is clearly uppermost in their thoughts. If stories are central to our lives, being able to help facilitate children to write accurate stories about a parent’s life-limiting illness must be on our professional agenda.
Dr Rachel Fearnley is a qualified and registered social worker. She has worked with children and families for over 30 years.
