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Adolescents and Young Adults (AYAs) Transition into Palliative Care: A Narrative Analysis of Family Member's Stories of Place of Death

Janet Anne Barling, John Anthony Stevens and Kierrynn Miriam Davis

Adolescent and Young Adult (AYA) cancer patients have been described as being orphaned in the system. A major study, investigated the experiences of family members who had an adolescents or young adult who lived with and eventually died of cancer. The participants were a self-selected purposeful sample of 26 family members. Selected methods of narrative analysis were used to create themes in a meta-narrative of the family member’s experience. One of the themes to emerge from the families meta- narrative was the change in the focus of care. Six of the family member’s stories spoke of the palliative care transition. Specific to this was the experience of the transition to place of death with particular reference to dying at home. The results suggest that the transition into palliative should occur sooner rather than later for appropriate supports to be in place to facilitate this transition.