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End-of-life care discussions: but not in front of the children?
  1. Gillian Chowns
  1. Gillian Chowns is Visiting Fellow, Social Work Studies Division, Faculty of Social Science, University of Southampton. Email: gpatgc{at}aol.com

Abstract

Background: Most research into the impact of terminal illness on families is adult-focused. There is a paucity of research highlighting the voice and experience of children with parents receiving palliative care. Aims: This study aimed to capture the experience of children who had a parent with a terminal illness and to give a voice to the children (rather than to seek corroboration of adult beliefs and assumptions about the child’s experience). Methods: An action research method of inquiry was chosen. The process of action research involves practitioners/researchers working directly with the research participants. The specific method that was deemed appropriate to research the children’s experience collaboratively was the making of a film. It was a participatory video in which the children themselves identified themes to be discussed and examined. Results: The research challenges some of the taken-for-granted assumptions about children. The themes that the children identified were: the importance of telling children the truth about their parents’ condition; allowing them to talk in their own way and with whom they choose about how they are feeling; and giving them space to come to terms with their feelings and the reality of the situation. Conclusion: Children should be recognised as able rather than vulnerable. They should be acknowledged as supportive members of the family unit. They are capable of coping with and understanding difficult concepts. What children want from adults are respect, honesty and understanding. Conflicts of interest: none

  • Children
  • Communication
  • Dying
  • Palliative care
  • Serious parental illness

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