A lonely place to be: Children's experiences of living with a parent who is dying

The following research has explored children's experiences when living with a parent who is dying. The findings provide substantial evidence that these children frequently
experience a conspiracy of silence which is orchestrated and managed by the adults in their lives. The findings have evidenced that children are not typically included in information exchanges about their parents' illnesses. This creates feelings of powerlessness and a barrier to `making meaning' of their current experiences. Exclusion from appropriate and meaningful discourses results in them being unable to develop narratives that are consistent with the peripheral information they are receiving, and which cause them to question their identity and the construct of their family. However, the research has also shown that when children are included in conversations about their parents'
illnesses, they generally have a more sophisticated understanding of what is happening and are cognitively and emotionally better able to cope. The quality and quantity of information that is shared with children of terminally ill
parents affects their ability to assimilate what is happening which in turn impacts on their management of, or in many examples, their failure to manage the situation. This
thesis explores strategies employed by children in their attempt to begin to make meaning from what is happening and to manage the situation. The research highlights that these children experience a number of transitions, changes and challenges. Changes in family routines and the shift from the known patterns of family life to a chaotic and unsafe world often present these children with unprecedented challenges that can severely affect how they manage the experience
and how they begin to make meaning from what is happening. Within the thesis I argue that children experience a form of `social death' where previously known social activities and contacts are curtailed because of parents' illnesses. The concept of `social death' reflects their increasing isolation from a `normal' social world which intensifies feelings of difference and causes further questions about identity. The thesis builds on the work of Walter (1996) suggesting that not only is there a `last chapter' to be written following the death, but that children with terminally ill parents
are also critically involved in writing a `penultimate chapter' during the latter phases of their parents' illnesses. This `chapter' forms the narratives that accompany this challenging and rapidly changing time in the children's lives. The `writing' of the chapter provides, in part, a framework for the children to construct their biography
and consequently develop an understanding of what is happening. However, when they are not included in conversations about the illness the `writing' of the chapter can be severely compromised thus causing them to write an inaccurate account and create incongruent narratives.