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

References

• Albritton, K., & Bleyer, W. (2003). The management of cancer in the older adolescent. European Journal of Cancer, 39(18), 2584–2599.
   Google Scholar
• Australian Institute of Health and Welfare & Australasian Association of Cancer Registries. (2004). Cancer in Australia 2001 (Cancer Series Number 28). Canberra, ACT: Author.
   Google Scholar
• Bender, A., Clune, L., & Guruge, S. (2009). Considering place in community health nursing. The Canadian Journal of Nursing Research, 41(1), 128–143.
   Google Scholar
• Bleyer, A. (2002). Cancer in older adolescents and young adults: Epidemiology, diagnosis, treatment, survival and importance of clinical trials. Medical and Pediatric Oncology, 38, 1–10.
   Google Scholar
• Bleyer, A., & Barr, R. (Eds.). (2007). Cancer in adolescents and young adults: Pediatric oncology.New York, NY: Springer.
   Google Scholar
• Brown, K., & Gallant, D. (2006). Impacting patient outcomes through design: Acuity adaptable care/universal room design. Critical Care Nursing Quarterly, 10(58), 326–340.
   Google Scholar
• Bruner, J. (1987). Life as narrative. Social Research, 54, 11–32.
   Google Scholar
• Burke, M., Albritton, K., & Marina, N. (2007). Challenges in the recruitment of adolescents and young adults to cancer clinical trials. Cancer, 110(11), 2385–2393.
   Google Scholar
• CanTeen. (2005). Submission from CanTeen Australia. In S. C. A. R. Committee (Ed.), Inquiry into services and treatment options for persons with cancer. Canberra, ACT: Australian Government Printing Services.
   Google Scholar
• CanTeen and Cancer Australia. (2009). National service delivery framework for adolescents and young adults with cancer.Retrieved from CanTeen.com.org.au
   Google Scholar
• Cassano, J., Nagel, K., & O’mara, L. (2008). Talking to otters who ‘just know’: Perceptions of adolescents with cancer who participate in a teen group. Journal of Pediatric Oncology Nursing, 25(4), 193–199. doi: 10.1177/10434542908319972
   Google Scholar
• Corey, A., Haase, J., Azzouz, F., & Monahan, P (2008). Social support and symptom distress in adolescents/young adults with cancer. Journal of Pediatric Oncology Nursing, 25(5), 275–283. doi: 10.1177/104345420821117
   Google Scholar
• Elliot, J. (2005). Using narrative in social research: Qualitative and quantitative approaches. London, England: Sage.
   Google Scholar
• Emden, C. (1998a). Theoretical perspectives on narrative inquiry. Collegian, 5(2), 30–35.
   Google Scholar
• Emden, C. (1998b). Conducting a narrative analysis. Collegian, 5(3), 34.
   Google Scholar
• Epstein, I., Orr, P., & Stevens, B. (2004). The experience of suffering in children with cancer — A meta-synthesis. The Suffering Child, 5, 1–8.
   Google Scholar
• Ferrari, A., Thomas, D., Franklin, A., Hayes-Lattin, B., Mascarin, M., Van der Graaf, W., & Albritton, K. (2010). Starting an adolescent and young adult program: Some success stories and some obstacles to overcome. Journal of Clinical Oncology, 28, 4850–4857. doi: 10.1200/JCO.2009.23.8097
   Google Scholar
• Fochtman, D. (2006). The concept of suffering in children and adolescent with cancer. Journal of Pediatric Oncology Nursing, 23(2), 92–102. doi: 10.1177/1043454205285870
   Google Scholar
• Frank, A. (1997). The wounded story teller. Chicago, IL: University of Chicago Press.
   Google Scholar
• Gesler, W. (1992). Therapeutic landscapes: Medical issues in light of the new cultural geography. Social Science & Medicine, 34(7), 735–746.
   Google Scholar
• Grinyer, A. (2002). Cancer in young adults: Through parents’ eyes. Buckingham, England: Open University Press.
   Google Scholar
• Grinyer, A. (2007). Young people living with cancer: Implications for policy andpractice. Buckingham, England: Open University Press.
   Google Scholar
• Herbertson, R., & Hancock, B. (2005). Hodgkin lymphoma in adolescents. Cancer Treatment Reviews, 31(5), 339–340.
   Google Scholar
• Kyngas, H., Mikkonen, R., Nousiainen, E.-M., Rytilahti, M., Seppanen, P., Vaattovaara, R., & Jamsa, T. (2001). Coping with the onset of cancer: Coping strategies and resources of young people with cancer. European Journal of Cancer Care, 10(1), 6–11.
   Google Scholar
• Larouche, S., & Chin-Peuckert, L. (2006). Changes in body image experienced by adolescents with cancer. Journal of Pediatric Oncology Nursing, 23(4), 200–209. doi: 10.1177/10434542062897556
   Google Scholar
• Lieblich, A., Tulval-Mashiach, R., & Zilber, T. (1998). Narrative research: Reading analysis and interpretation. London, England: Sage.
   Google Scholar
• Mathieson, C., & Stam, H. (1995). Renegotiating identity: Cancer narratives. Sociology of Health and Illness, 17(3), 283–306.
   Google Scholar
• McTiernan, A. (2003). Issues surrounding the participation of adolescents with cancer in clinical trials in the UK. European Journal of Cancer Care, 12, 233–239.
   Google Scholar
• Michaud, P., Suris, J., & Viner, R. (2004). The adolescent with a chronic condition. Part II: Healthcare provision. Archives of Disease in Childhood, 89, 943–949. doi: 10.1136/adc.2003.045377
   Google Scholar
• Miedema, B., Hamilton, R., & Easley, J. (2007). From ‘invincibility’ to ‘normalcy’: Coping strategies for young adults during the cancer journey. Palliative & Supportive Care, 5, 41^9. doi: 10.1017/S147895150707006X
   Google Scholar
• Mishler, E. (1986). Research interviewing: Context and narrative. Cambridge, England: Harvard University Press.
   Google Scholar
• Mitchell, W., Clarke, S., & Sloper, P. (2006). Care and support needs of children and young people with cancer and their parents. Psycho-oncology, 15(9), 805–816.
   Google Scholar
• O’Brien, T., Senner, A., Thomas, D., Treadgold, C., & Young, A. (2006). The need for change: Why we need a new model of care for adolescents & young adults with cancer … a document for discussion. Paper presented at the Improving the Management of Cancer Services, Melbourne, VIC.
   Google Scholar
• Palmer, S., Mitchell, A., Thompson, K., & Sexton, M. (2007). Unmet needs among adolescent cancer patients: A pilot study. Palliative and Supportive Care, 5, 127–134. doi: 10.1017/S1478951507070198
   Google Scholar
• Palmer, S., & Thomas, C. (2008). A practice framework for working with 15–25 year old cancer patients treated within the adult health sector. Melbourne, VIC: OnTrac at PeterMac Victorian Adolescent & Young Adult Cancer Service.
   Google Scholar
• Patterson, P., Millar, B., & Desille, N. (2008). The needs of young people who have, or have had cancer: Report on the CanTeen national member survey for patient members. Sydney, NSW: CanTeen.
   Google Scholar
• Phillips, M. (2009). Overview: Adolescent oncology: Orphaned in the system. Cancer Forum, 33(1), 3–4.
   Google Scholar
• Polkinghorne, D. (1988). Narrative knowing and human sciences. Albany, NY: State University of New York Press.
   Google Scholar
• Polkinghorne, D. (1995). Narrative configuration in qualitative analysis. International Journal of Qualitative Studies in Education, 8(1), 5–23.
   Google Scholar
• Redwood, R. (1999). Information point: Narrative and narrative analysis. Journal of Clinical Nursing, 8(6), 674.
   Google Scholar
• Riessman, C. (1993). Narrative analysis. London, England: Sage.
   Google Scholar
• Sarbin, T. (1986). The narrative as a root metaphor for psychology. In T. Sarbin (Ed.), Narrative psychology: The storied nature of human conduct (pp. 3–21). London, England: Praeger.
   Google Scholar
• Taylor, B. (2006a). Qualitative interpretive methodologies. In B. Taylor, S. Kermode, & K. Roberts (Eds.), Research in nursing and health care: Evidence for practice (3rd ed.). Melbourne, VIC: Thomson.
   Google Scholar
• Taylor, B. (2006b). Qualitative data analysis. In B. Taylor, S. Kermode, & K. Roberts (Eds.), Research in nursing and health care: Evidence for practice (3rd ed.). Melbourne, VIC: Thomson.
   Google Scholar
• Thomas, D., Seymour, F., O’Brien, T., Sawyer, S., & Ashley, D. (2006). Adolescent and young adult cancer: A revolution in evolution? Internal Medicine Journal, 36(5), 302–307.
   Google Scholar
• Woodgate, R. (2000). Part 11: A critical review of qualitative research related to children’s experiences with cancer. Journal of Pediatric Oncology Nursing, 17(4), 207–228.
   Google Scholar
• Woodgate, R. (2005). A different way of being. Cancer Nursing, 28(1), 8–15.
   Google Scholar
• Woodgate, R. (2006). The importance of being there: Perspectives of social support by adolescents with cancer. Journal of Pediatric Oncology Nursing, 23(3), 122–134. doi: 10.1177/1043454206287396
   Google Scholar
• Woodgate, R. (2008). Feeling states: A new approach to understanding how children nard adolescents with cancer experience symptoms. Cancer Nursing, 31(3), 229–238.
   Google Scholar
• Zebrack, B. (2008). Information and service needs for young adult cancer patients. Supportive Care in Cancer, 16, 1353–1360. doi: 10.1007/s00520-008-0435-z
   Google Scholar
• Zebrack, B., Bleyer, A., Albritton, K., Medearis, S., & Tang, J. (2006). Assessing the health care needs of adolescent and young adult cancer patients and survivors. Cancer, 107(12), 2915–2923. doi: 10.1002/cncr.22338
   Google Scholar
• Zebrack, B., Chelser, M., & Kaplan, S. (2010). To foster healing among adolescents and young adults with cancer: What helps? What hurts? Support Care in Cancer, 18, 131–135. doi: 10.1007/s005200090719_y
   Google Scholar