The reality of hospitalisation: stories from family members of their hospital experience for adolescents and young adults living with and dying from cancer

Background: Adolescents and Young Adults (AYAs) with cancer are being disadvantaged within the present health care system. Some of the factors identified as leading to this disadvantage include medical issues specific to AYAs with cancer, delay in diagnosis, fragmented services, lack of access to clinical trials and psychosocial life stage issues. Objective: A major study investigated the experience that accompanies the stages of diagnosis, treatment, dying and death of an AYA from the perspective of family members. This paper discusses the major theme of the reality of hospitalisation. Methods: Narrative inquiry was the methodology for this study. The participants were a self-selected purposeful sample of 26 family members. Open-ended interviews were conducted to obtain a story of the experience of having an AYA family member live with and die of cancer. A meta-narrative of the family member’s experience was developed by NVivo8. Results: In amongst the mass of data this study produced, a major theme to emerge was the experience ‘of the reality of hospitalisation’. Within this theme issues regarding: The place of treatment; the hospital experience; not fitting in; and, confronting illness and death were revealed. Conclusion: While on the whole the cancer was treated with state of the art medicine, the experiences of the hospitalisation repeated consistently throughout this narrative reveals a failure to meet the higher order needs specific to adolescents and young adults and their families As a result this cohort were exposed to a landscape which did not facilitate a therapeutic experience, as well as would be expected for children and older adults