Background: Adolescents and young adults (AYAs) with cancer have been recognized as being disadvantaged within the present healthcare system. This article is part of a major study that was motivated by the principal researcher's own experience of her 17-year-old son dying of cancer and from current literature that highlights the lack of support and understanding of AYAs and their families.
Objective: This article aimed to uncover from the stories of family members the experience after the treatment of an adolescent or young adult family member (aged 13-23 years) who subsequently died.
Methods: Narrative inquiry was determined to be the appropriate methodology for this study. The participants were a self-selected purposeful sample of 26 family members whose narratives spoke of experience of having an AYA family member live with and die of cancer.
Results: The meta-narrative of the families' stories in the treatment stage resulted in 6 themes. This article provides the insights of experience of the family members within the treatment stage. The family members speak of a health system unable to respond to the AYA and family member's needs and the suffering sacrifice and courage of the AYAs and the family members.
Conclusion: There is evidence that AYAs and family members are lost in the system, with minimum understanding or support for this unique group of people.
Implications for practice: Further research is required to assist the development of evidence-based best practice models of care for AYAs and their families.