The Importance of Stories: Children, Dying and Death

It is my pleasure to host an essay by Dr Rachel Fearnley who is a research consultant specialising in children’s lives when a parent has a life-limiting physical illness.   In my book I introduce the concept of anticipatory grief as the process of grieving before a person has died and the impact of witnessing terminal or degenerative illnesses.  I have also written an earlier blogpost about the language used when referring to cancer.  Dr Fearnley’s work dovetails into my research and has very kindly accepted my invitation to provide an insight into her research and expertise into how children’s lives are impacted as a result of a parent’s life limiting physical illness.

The Importance of Stories: Children, Dying and Death

‘We live in stories, not statistics’ (Gilbert 2002). Anyone who has heard me speak will be familiar with this quote, how it is representative of my career and how the sentiment held within it is core to my values. Stories have always been central to my career starting in the early 80s when I was employed as a nursery nurse. For me story-time at the end of each session was a magical, special time to be treasured. I always enjoyed telling the young children stories which captured their imaginations and took them off on wonderful adventures and to different places and situations. Later as I changed career the emphasis shifted from telling stories to listening to other’s stories and helping them to try and begin to make some sense from what was happening in their lives. Through this role in family support I became increasingly interested in social and emotional aspects of dying and death.

This curiosity led me back to university where I undertook a PhD which explored children’s experiences when a parent is at the end of life. My research was  qualitative, and at its core was the emphasis on listening to children’s stories about their experiences. Within the research process I encountered gatekeepers who wanted to protect children from being exposed to the research. I was told that it would ‘upset’ the children if they started talking about what was happening in their lives and that it was therefore inappropriate to begin to explore with them their thoughts, feelings and stories. However, when I did find people who were willing to engage in and support the research I was overwhelmed with the openness and honesty from the children and young people I met. Yes some were upset talking about what was happening after all it was an emotional and very personal topic. But our meetings were contained in a safe place and were managed by a person who genuinely wanted to listen and take time to try and understand. The participants were engaging and shared their stories willingly and moreover all said how it had been helpful talking to someone who was really interested in their stories and who was prepared to listen without passing judgement.

Their stories often shared a similar theme; they wanted to be involved in conversations about their parent’s illness. However, for many this was not always the situation. There was a sense that adults tried to protect them from the realities of what was happening. There was a view that children were ‘too young’ to be told or that they didn’t need to know because the information would be too distressing. However, the children and young people I met generally held a very different perspective. They all had a ‘knowing’ that something serious was happening in their family, even when this had not been articulated to them. In these situations there was a tendency for them to put two and two together but not make four. They spoke about picking up cues from observations (of their parent’s behaviour and changes in their health) and from overheard conversations. For some young people there was a sense of frustration that they were being ignored and that indirectly they were being given the message that they were not important in what was happening within their family. This, I think, is a sad reflection of how in society there continues to be a need to exclude children from dying and death.

Tony Walter (1996) has written about dying and death from a sociological perspective. Within his work he suggests that an important element following a death is for individuals to be able to talk to others about the deceased person and through this to develop a ‘durable biography’. This durable biography, according to Walter, not only allows them to learn more about the deceased person but also about themselves. He suggests that the process by which this is achieved is through conversations and discussions with others who knew the deceased person. The maintaining of the relationship, Walter argues, is substantially achieved by talking about the deceased person with others who had known them, sharing stories and memories, adding previously unknown information and also challenging previously held assumptions about them. I have built on Walter’s work to suggest that during parental illness, children are ‘writing’ a penultimate chapter (Fearnley 2015) about the illness. This is a prospective chapter and the quality of its content is dependent on the extent to which children are included in conversations and information sharing about the illness. The ‘writing’ of the ‘penultimate chapter’ is important in helping children make meaning from their current lived experience and helps prepare them in the writing of their final chapter about their parent. However, when children are not included in conversations they are then not able to ‘write’ a meaningful penultimate chapter about their lives with their ill parent.

I wonder whether as adults we are afraid to listen to children, are we concerned about what we might hear? Certainly in my research there was a sense that sometimes professionals (mainly from within health care) were concerned that they would be ‘opening a can of worms’ if they started talking to children about the illness. Other worries were that such conversations would take too much time or that they were not qualified to work with children. As one nurse said to me ‘I work with adults not children’.  These findings are congruent with recent research that again highlighted that health care professionals often felt that the children of patients were not their concern (Franklin et al. 2019). I wonder if there needs to be a shift so that professionals who work with adults also feel confident at least talking to children.

Recently my relationship with stories has taken a new and totally unexpected direction. After some years of trying to raise awareness about the importance of supporting children and families during parental life-limiting illness with the feeling of little success, I was encouraged to write a novel as a way of exploring some of the typical issues families and children experience during the illness. Our Family and IT is the story of an ‘ordinary’ family faced with extra-ordinary changes and challenges following the mother’s diagnosis of ‘IT’ an unnamed illness. I did not want to focus on one illness but rather on the social and emotional impact any life-limiting illness has on family life. I carefully considered the ages of the three children for maximum impact within the story; each family member narrates the story of their lives following the diagnosis. I have tried, based on my research findings, to tackle some of the important issues that families typically face during this health crisis. These include communication, identity, emotions, parenting and support. Within the book different dilemmas and challenges are explored, for example do the parents tell their children what is happening, how school and friends manage the situation and what happens to teenage boys when they are not listened to. And so with the publication of the book, I feel my relationship with stories has come full circle.  However, my opinion remains that as a society we still have some way to go before children are included, to the extent they want to be, in stories of dying and death.

For more information on Dr Fearnley please see here:  http://www.rachelfearnley.co.uk/

To buy Dr Fearnley’s book please see here: http://www.rachelfearnley.co.uk/http-www-rachelfearnley-co-uk/

Twitter: @RachelFearnley1

 

References

Fearnley, R. (2015) Writing the ‘penultimate chapter’: How children begin to make sense of parental terminal illness, Mortality20(2): 163 – 177.

Franklin, P., Arber, A., Reed. L., and Ream, E. (2019) Health and Social Care Professionals’ Experiences of Supporting Parents and their Dependent Children During and Following, the Death of a Parent: A Qualitative Review and Thematic Synthesis, Palliative Medicine 33: 49 – 65.

Gilbert, K. R. (2002) Taking a Narrative Approach to Grief Research: Finding Meaning in Stories, Death Studies, 26: 223-239.

Walter, T. (1996) A New Model of Grief: Bereavement and Biography, Mortality, 1(1): 7-25.

 

Adolescent Babyloss Experiences

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Its been several months since I originally published this post and the response has been incredible. I’m very grateful to each and every one of the women that has participated so far.  For anyone looking for more information please read the following:

My PhD research is exploring the experiences of adolescents who experienced a gestnatal death whilst in secondary school.  Originally we were using the word “perinatal” but due to the fact that it is defined differently in various countries and organisations, I’m unable to use it for research purposes.  Instead we are using the word “gestnatal”, defined as: “The death of a human life from conception to 28 days’ post-birth inclusive.”

Gestational and neonatal deaths can be divided into two groups: biological (miscarriage, stillbirth, neonatal death etc.) and non-biological (abortion, therapeutic termination etc.).  My research is encompassing all gestnatal deaths because we are exploring the grief, social, and educational impact of the event.  My research design is split into two parts; firstly, there is a questionnaire to gather as much broad data as possible and I’d like to extend my deepest thanks to the women to who took the time to complete this questionnaire.

Secondly, interviews are currently being undertaken by me to dig deeper into the data summarised following the collection of the questionnaires.

The purpose of this study is to provide information on these experiences so that we can inform policy makers, teachers, medical professionals, school guidance counsellors etc. so that they can better understand and support these teenagers and subsequent women.

If you experienced a gestnatal death whilst in secondary school and are willing to be interviewed, or if you would like more information on this research, please email me at:  lloydca@tcd.ie

Once again, thank you to all the participants who have completed the questionnaires so far, and to everyone who has volunteered to be interviewed.