Title

Family members' retrospective stories of the treatment stage of an adolescent or young adult who subsequently died of cancer

Document Type

Article

Publication details

Barling, JA, Stevens, JA & Davis, K 2013, 'Family members' retrospective stories of the treatment stage of an adolescent or young adult who subsequently died of cancer', Cancer Nursing, vol. 36, no. 5, pp. E39-E48.

Published version available from:

http://doi.org/10.1097/NCC.0b013e31829dec22

Peer Reviewed

Peer-Reviewed

Abstract

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.