Aim Parents of children with life-limiting illnesses (LLI) are often required to make decisions regarding what type of life-sustaining treatment, if any, is to be provided and where care is to be delivered at the end of their child’s life. This study aimed to explore the experiences of parents in making and revising end-of-life care decisions for their child with a LLI.
Methods Semi-structured interviews were conducted with three bereaved parents of children with LLI between April and July 2014. Data were analysed using Interpretative Phenomenological Analysis. Eligible families were invited to participate by the child’s main consultant. Approval for the study was granted from the National Research Ethics Service and written informed consent was obtained prior to the interview.
Results Two parents in the study had received their child’s diagnosis at least a year prior to their child’s death, whereas the other parent had only received the diagnosis in the final weeks of the child’s life. This parent, prior to receiving the diagnosis, had made decisions to treat her child aggressively on the presumption that the illness was curable. Upon receiving the diagnosis, she decided in conjunction with professionals to transition towards palliative care and ensuring comfort for her child. The other parents had been aware of their child’s diagnoses for longer and deemed from the start that aggressive treatment would not be appropriate or in their child’s best interests.
Conclusion The majority of the literature on the topic of decision making in children’s palliative care includes children with both life-limiting and life-threatening illnesses (LTI). Although there may be some overlap in the decision making processes, this study although limited by its sample, has shown that decisions may differ for children with LLI as compared to children with LTI, suggesting that perhaps these populations should be researched separately. More research is needed in order to determine the differences in the decision making processes and whether specific support with decision making is needed between the two groups.
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