Photo: JKP author Rachel FearnleyRachel Fearnley is an independent researcher and consultant, and a teaching fellow within the Department of Social and Policy Sciences (Centre for Death and Society) at the University of Bath, UK. She is a qualified social worker and has over thirty years’ experience working with children and families. Her doctoral research focused on the experiences of children whose parent is at the end of life.

In this interview she talks about her new book, Communicating with Children When a Parent is at the End of Life, which talks about how to provide sensitive and effective support for children faced with the distress and confusion of having a parent who is terminally ill.

How did you become involved in working with children whose parent is at the end of life?

I have worked with children and families for many years and have always been interested in attachment theories and relationships. When I was managing a family support service with Barnardo’s, I became particularly curious about how death in childhood affects people many years later when they become parents. I observed how often the feelings about the death had remained almost dormant until the responsibility of being a parent re-awoke feelings and emotions. I think these observations were the catalyst that really ignited my interest. The real impetus for being involved with children whose parent is at the end of life came about as I began studying dying and death. I became especially interested in their life experiences and how such a huge family crisis might impact on the younger members of the family.

Can you tell us a bit more about your research in this area?

My research ‘passion’ is learning more about the lives of children who are living with a parent who is dying. Within this I feel that it is vitally important that the children’s voice is central to the research and that their views take primacy. I feel strongly that often the focus of research is upon either the patient or their partner and that the children’s needs are secondary. I like to think that my research always has a practical application and that it will help generate healthy debate amongst professionals whilst ensuring that this community of children are placed on the dying and death agenda.

Why do you think communication with children whose parent is dying so important?

The news that a parent has a terminal illness generally presents the family with a huge crisis. Everything about family life is catapulted into a maelstrom, routines change and nothing appears to be predictable anymore. If children are not included in conversations about their parent’s illness and possible imminent death they are going to witness all the changes without having any ‘concrete’ knowledge to use as a marker. They will be aware of the changes and know that something is very different but will not be able to form a consistent narrative. As a result they are in danger of piecing together the information they have gleaned and making erroneous conclusions.

Why do you think children are often left out of conversations or not told enough about their parent’s illness?

I think there are a number of reasons why children are left out of conversations. Parents will often avoid telling their children about the illness because of the fear of upsetting them or the belief that they are too young to know what is happening. However, even very young children will know that something is different within their family. Parents and family members often think that they do not have the language to know what to say to their children, and of course in these situations the professionals working with the family have a significant role to play. Understandably, for parents, the thought of having to tell their children that they are dying is just too painful to contemplate. The parent’s role is to protect and nurture their children and the prospect of telling them that they are dying is the antithesis of this. Likewise, I think that for many parents the prospect of having to hold such conversations forces them into assessing their lives and reinforces the magnitude of what is happening.

I think it is important that the professionals working with the patient understand and respect the magnitude of the task the parents are presented with and support the facilitation of the conversations. However, I also think that we need to recognise that many parents do talk to their children about what is happening and again offer support when and where necessary.

For professionals there are different reasons for not including children in the conversations. I think that there are some brilliant practitioners who have great communication skills and who can engage children and develop those ‘difficult’ conversations. However, I also think that sadly some practitioners do not have the confidence or competence to talk to children about dying and death. I believe that sometimes this is because of their own fears about death and them holding a death denying attitude, which then impacts on them discussing the subject.

For me there is also a fundamental flaw in the training of professionals. Very few curriculums for professional practice include dying and death let alone children’s experiences of death. Therefore, practitioners are not equipped for this when they are exposed to children whose parents are dying.

What affect can this have on a child?

Not being included can have serious consequences for the child. When they are inevitably witnessing the changes within their family’s life and are not in possession of the facts they are more likely to draw their own, often erroneous, conclusions. Also knowing that something is wrong but not knowing what it is can be a very scary place for children to be. They are left feeling excluded and disconnected from the family. This can have serious repercussions later in respect to the trust they have in adults.

When children are not included they are unable to start writing a meaningful narrative about their current experience. These narratives help children to begin to make some meaning from what is happening and helps them to cognitively and emotionally begin to process the changes. However, when they are not included this can also have implications for the longer term and affect negatively how they manage following the death. Not including children in conversations about the illness may weaken their coping strategies and result in detrimental health implications during adulthood.

Not talking about what is happening is also reinforcing the notion that death is something that should not be openly discussed and that it is insidious. Perpetuating this idea for the children means that they are being identified as being different from the norm and this adds further tensions for them.

However, it is important to remember that some children will, for a number of reasons, choose not to be included. Some children will prefer to have a limited outline of the facts and this will be sufficient for them to cope with. I think it is important here to remember that each child is an individual with individual needs and desires – this needs to be respected and worked with.

How can practitioners increase their confidence in talking to children about these difficult issues?

I believe that it is important for practitioners to reflect on their practice and to really think about why it is so important to talk to children about parental terminal illness and death. One of the most effective ways for developing any skill is to practice, reflect and try again. I think talking to trusted colleagues and sharing knowledge is a great way to develop confidence as is shadowing a colleague before undertaking the task yourself.

What are the most important skills to have when communicating with children whose parent is dying?

Perhaps the most important skill is being able to listen to the children and really hear what they are saying. Observing whether their body language is congruent with what they are saying is vital, and can offer many clues to what is happening for the children. Equally it is important not to make you own conclusions about what the children know – gently exploring with them what they actually know about the situation, before telling them what you think they know is essential.

A really important skill is to have the confidence to acknowledge that the conversations that are being shared with children are not easy, and that yes you are talking about very sad things. Giving the children time to explore the conversations and to give them permission to ‘go for a walk’ round the subject, exploring it from different angles and perspectives is a great skill. Equally respecting the children and recognising that they may not want to talk to you about what is happening is important. Having the confidence to use age appropriate, but not ambiguous language is a skill that is important, as is the necessity to be honest with the children. Telling them that everything is going to be okay, when actually the prognosis is poor is harmful and very bad practice. But also feeling comfortable saying ‘I don’t know the answer to that’ is a skill that we often neglect!

What are the key messages that you would like practitioners to take away from the book?

I think a key message is that talking to children about parental terminal illness, whether this is directly with the children or supporting the parents to have the conversations, is absolutely vital and a really important piece of work. It demonstrates such great respect for the children and offers them a vital helping hand / coping mechanism to help them navigate a situation that has been entered unwillingly and without choice.

An important message is the recognition that this is not an easy subject, and it is perhaps one that we would all rather not have to contemplate. However, when we are in the privileged position of working with, supporting and having these conversations with children, we can make such a significant difference to their lives and the lives of their family.

You talk in the book about the importance of a shift in attitudes to encourage more open and honest communication with children – how do you think this can be brought about?

I think first and foremost this community of children need to be recognised, by policy makers and professionals, as being children who are likely to need some support to navigate the very distressing and confusing thing that is parental terminal illness. Children who are living with a parent who is terminally ill are potentially at risk of harm as described in the Children Act 1989. The huge changes and challenges that the family is living through, can in some cases, mean that the children’s needs are marginalised and that they become ‘invisible’ within the family. When this occurs they become at risk of being forgotten and excluded and they will then sometimes assert their presence through behaviour that is deemed unsuitable or inappropriate.

Copyright © Jessica Kingsley Publishers 2012.

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