Surviving Childhood Leukemia in a Latin Culture: An Explorative Study Based on Young Adults’ Written Narratives

REFERENCES

• American Academy of Pediatrics Child Life Council and Committee on Hospital Care. (2006). Child life services. Pediatrics, 118(4), 1757–1763.
   PubMed Web of Science ®Google Scholar
• Andrykowski, M.A., Brady, M.J., & Hunt, L.W. (1993). Positive psychosocial adjustment in potential bone marrow transplant recipients. Psycho-Oncology, 2, 261–76. doi:10.1002/pon.2960020406
   Google Scholar
• Anholt, U.V., Fritz, G., & Keener, M. (1993). Self-concept in survivors of childhood and adolescent cancer. Journal of Psychosocial Oncology, 11(1), 1–13. doi:10.1300/J077V11N01_01
   Google Scholar
• Asch, D.A., Jedrziewski, M.K., & Christakis, N.A. (1997). Response rates to mail surveys published in medical journals. Journal of Clinical Epidemiology, 50(10), 1129–1136. doi:10.1016/S0895-4356(97)00126-1
   PubMed Web of Science ®Google Scholar
• Boman, K., & Bodegard, G. (2000). Long-term coping in childhood cancer survivors: Influence of illness, treatment and demographic background factors. Acta Paediatrica, 89, 105–11. doi:10.1111/j.1651-2227.2000.tb01197.x
   PubMed Web of Science ®Google Scholar
• Brown, C., Pikler, V.I., Lavish, L.A., Keune, K.M., & Hutto, C.J. (2008). Surviving childhood leukemia: Career, family, and future expectations. Qualitative Health Research, 18(1), 19–30. doi:10.1177/1049732307309221
   PubMed Web of Science ®Google Scholar
• Casillas, J., Kahn, K.L., Doose, M., Landier, W., Bhatia, S., Hernandez, J., & Zeltzer, L.K. (2010). Transitioning childhood cancer survivors to adult-centered healthcare: Insights from parents, adolescent, and young adult survivors. Psycho-Oncology, 19, 982–990. doi:10.1002/pon.1650
   PubMed Web of Science ®Google Scholar
• Charon, R. (2006) Narrative medicine. Honouring the stories of illness. New York, NY: Oxford University Press.
   Google Scholar
• Crist, J.V., & Grunfeld, E.A. (2012). Factors reported to influence fear of recurrence in cancer patients: A systematic review. Psycho-Oncology, 22(5), 978986. doi:10.1002/pon.3114
   PubMed Web of Science ®Google Scholar
• Di Gallo, A., Amsler, F., Gwerder, C., & Burgin, D. (2003). The years after: A concept of the psychological integration of childhood cancer. Supportive Care in Cancer, 11, 666–673. doi:10.1007/s00520-003-0494-0
   PubMed Web of Science ®Google Scholar
• Enskär, K., & Berterö, C. (2010). Young adult survivors of childhood cancer; experiences affecteing self-image, relationships, and present life. Cancer Nursing, 33(1), E18–E24. doi:10.1097/NCC.0b013e3181b6365a
   PubMed Web of Science ®Google Scholar
• Entwistle, V., Tritter, J.Q., & Calnan, M. (2002). Researching experiences of cancer: The importance of methodology. European Journal of Cancer Care, 11, 232–237. doi:10.1046/j.1365-2354.2002.00344.x
   PubMed Web of Science ®Google Scholar
• Flach, F.F. (1980). Psychobiologic resilience, psychotherapy, and the creative process. Comprehensive Psychiatry, 21(6), 510–518.
   PubMed Web of Science ®Google Scholar
• Frank, A. (1995). The wounded storyteller. Chicago, IL: University of Chicacgo Press.
   Google Scholar
• Gallo, L.C., Penedo, F.J., Espinosa de los Monteros, K., & Arguelles, W. (2009). Resiliency in the face of disadvantage: Do Hispanic cultural characteristics protect health outcomes? Journal of Personality, 77(6), 1707–1746. doi:10.1111/j.1467-6494.2009.00598.x
   PubMed Web of Science ®Google Scholar
• Glaser, B., & Strauss, A.I. (1967). The discovery of grounded theory: Strategies for qualitative research. Chicago, IL: Aldine.
   Google Scholar
• Hill, C.E., Knox, S., Thompson, B.J., Williams, E.N., Hess, S.A., & Ladany, N. (2005). Consensual qualitative research, an update. Journal of Counseling Psychology, 52(2), 196–205. doi:10.1037/0022-0167.52.2.196
   Web of Science ®Google Scholar
• Hurwitz, B., Greenhalgh, T., & Skultans, V. (Eds.). (2004). Narrative research in health and illness. Oxford, England: Blackwell - BMJ Books.
   Google Scholar
• Jankovic, M. (1994). Telling young children with leukemia their diagnosis: The flower garden as analogy. Pediatric Hematology and Oncology, 11(1), 75–81.
   PubMed Web of Science ®Google Scholar
• Karian, V.E., Jankowski, S.M., & Beal, J.A. (1998). Exploring the lived-experience of childhood cancer survivors. Journal of Pediatric Oncology Nursing, 15(3), 153–162.
   PubMedGoogle Scholar
• Kim, D.H., & Yoo, Y. (2010). Factors associated with resilience of school age children with cancer. Journal of Paediatrics and Child Health, 46, 431–436. doi:10.1111/j.1440-1754.2010.01749.x
   PubMed Web of Science ®Google Scholar
• Lau, U., & van Niekerk, A. (2011). Restoring the self: An exploration of young burn survivors’ narratives of resilience. Qualitative Health Research, 21(9), 1165–1181. doi:10.1177/1049732311405686
   PubMed Web of Science ®Google Scholar
• Lazarus, R. S., Folkman, S. (1984). Stress, appraisal and coping. New York, NY: Springer Publishing Company.
   Google Scholar
• Levin Newby, W., Brown, R.T., Pawletko, T.M., Gold, S.H., & Whitt, J.K. (2000). Social skills and psychological adjustment of child and adolescent cancer survivors. Psycho-Oncology, 9, 113–126.
   PubMed Web of Science ®Google Scholar
• Liveneh, H. (1984). A unified approach to existing models of adaptation to disability: Part 1 - A model adaptation. Journal of Applied Rehabilitation Counseling, 17(1), 5–17.
   Google Scholar
• Maggiolini, A., Grassi, R., Adamoli, L., Corbetta, A., Charmet, G.P., Provantini, K., …, & Masera, G. (2000). Self-image of adolescent survivors of long-term childhood leukemia. Journal of Pediatric Hematology/Oncology, 22(5), 417–421.
   PubMed Web of Science ®Google Scholar
• Masera, G., Beltrame, F., Corbetta, A., Fraschini, D., Adamoli, L., Jankovic, M., & Spinetta, J.J. (2003). Audiotaping communication of the diagnosis of childhood leukemia: Parents’ evaluation. Journal of Pediatric Hematology/Oncology, 25(5), 368–371. doi:10.1097/00043426-200305000-00004
   PubMed Web of Science ®Google Scholar
• Masera, G., Chesler, M., Zebrack, B., & D’Angio, G.J. (2013). Cure is not enough – One slogan, two paradigms for pediatric oncology. Pediatric Blood and Cancer, 60(7), 10691070. doi:10.1002/pbc.24504.
   PubMed Web of Science ®Google Scholar
• Masera, G., & Jankovic, M. (Eds.). (2008). Noi, ragazzi guariti [We, the healed guys]. Milano, Italy: Ancora.
   Google Scholar
• Masera, G., Jankovic, M., Adiamoli, L., Corbetta, A., Fraschini, D., Lia, R., …, & Spinetta, J.J. (1997). The psychosocial program for childhood leukemia in Monza, Italy. Annals of the New York Academy of Sciences, 17(824), 210–220. doi:10.1111/j.1749-6632.1997.tb46224.x
   Web of Science ®Google Scholar
• Murray, M. (2008). Narrative psychology. In J. Smith (Ed.), Qualitative psychology. A practical guide to research methods (pp. 111–132). London, England: Sage.
   Google Scholar
• Nordyke, K., Myléus, A., Ivarsson, A., Carlsson, A., Danielsson, L., Högberg, L., …, & Emmelin, M. (2010). How do children experience participating in a coeliac disease screening? A qualitative study based on children's written narratives. Scandinavian Journal of Public Health, 38, 351–358. doi:10.1177/1403494810368454.
   PubMed Web of Science ®Google Scholar
• Özdemir, Ö. (2012). How to accompany children and parents during the different phases of a severe chronic disease. In Ozdemir, O. (Ed.), Complementary pediatrics (pp. 253–266). Croatia: InTech.
   Google Scholar
• Park, C.L., & Folkman, S. (1997). Meaning in the context of stress and coping. Review of General Psychology, 1(2), 115–144. doi:10.1037/1089-2680.1.2.115.
   Google Scholar
• Parry, C., & Chesler, M.A. (2005). Thematic evidence of psychosocial thriving in childhood cancer survivors. Qualitative Health Research, 15(8), 1055–1073. doi:10.1177/1049732305277860.
   PubMed Web of Science ®Google Scholar
• Reaman, G.H., & Smith, F.O. (Eds.). (2011). Childhood leukemia - A practical handbook. New York, NY: Springer.
   Google Scholar
• Salander, P. (2002). Bad news from the patient perspective: An analysis of the written narratives of newly diagnosed cancer patients. Social Science and Medicine, 55, 721–732.
   PubMed Web of Science ®Google Scholar
• Salick, E.C., & Auerbach, C.F. (2006). From devastation to integration: Adjusting to and growing from medical trauma. Qualitative Health Research, 16(8), 1021–1037. doi:10.1177/1049732306292166
   PubMed Web of Science ®Google Scholar
• Stevens, M.C. G., Caron, H.N., & Biondi, A. (Eds.). (2012). Cancer in children clinical management (6th ed.). Oxford, England: Oxford University Press.
   Google Scholar
• Strauss, A., & Corbin, J. (Eds.). (1990). Basics of qualitative research: Grounded theory procedures and techniques. Thousands Oaks, CA: Sage.
   Google Scholar
• Sumalla, E.C., Ochoa, C., & Blanco, I. (2009). Posttraumatic growth in cancer: Reality or illusion? Clinical Psychology Review, 29, 24–33. doi:10.1016/j.cpr.2008.09.006
   PubMed Web of Science ®Google Scholar
• Tedeschi, R.G., & Calhoun, L.G. (Eds.). (1995). Trauma and transformation; Growing in the aftermath of suffering. Thousand Oaks, CA: Sage.
   Google Scholar
• Tedeschi, R.G., & Calhoun, L.G. (1996). The posttraumatic growth inventory: Measuring the positive legacy of trauma. Journal of Traumatic Stress, 9(3), 455–471.
   PubMed Web of Science ®Google Scholar
• Urbanski, B.L., & Lazenby, M. (2012). Distress among hospitalized pediatric cancer patients modified by pet-therapy intervention to improve quality of life. Journal of Pediatric Oncology Nursing, 29(5), 272–282. doi:10.1177/1043454212455697
   PubMed Web of Science ®Google Scholar
• Weigers, M.E., Chesler M.A., Zebrack, B., & Goldman S., (1998). Self-reported worries among long-term survivors of childhood cancer and their peers. Journal of Psychosocial Oncology, 16(2), 1–23. doi:10.1300/J077V16N02_01
   Web of Science ®Google Scholar
• Wu, E., Rapport, F., Jones, K., & Greenhalgh, T. (2004). Soldiers become causalities: Doctors’ accounts of the SARS epidemic. In B. Hurwitz, T. Greenhalgh, & V. Skultans (Eds.), Narrative research in health and illness (pp. 37–51). Oxford, England: Blackwell - BMJ Books.
   Google Scholar
• Yi, J., & Zebrack, B. (2010). Self-portraits of families with young adult cancer survivors: Using photovoice. Journal of Psychosocial Oncology, 28(3), 219–243. doi:10.1080/07347331003678329.
   PubMed Web of Science ®Google Scholar
• Zebrack, B. (2000). Quality of life of long-term survivors of leukemia and lymphoma. Journal of Psychosocial Oncology, 18(4), 39–59. doi:10.1300/J077v18n04_03
   Web of Science ®Google Scholar
• Zebrack, B. (2009). Developing a new instrument to assess the impact of cancer in young adult survivors of childhood cancer. Journal of Cancer Survivorship, 3, 174–180. doi:10.1007/s11764-009-0087-0
   PubMedGoogle Scholar
• Zebrack, B.J. (2011). Psychological, social and behavioral issues for young adults with cancer. Cancer, 15, 2289–2294. doi:10.1002/cncr.26056
   Web of Science ®Google Scholar
• Zebrack, B.J., Donohue, J.E., Gurney, J.G., Chesler, M.A., Bhatia, S., & Landier, W. (2010). Psychometric evaluation of the Impact of Cancer (IOC-CS) scale for young adult survivors of childhood cancer. Quality of Life Research, 19(2), 207–218. doi:10.1007/s11136-009-9576-x.
   PubMed Web of Science ®Google Scholar
• Zebrack, B.J., Stuber, M.L., Meeske, K.A., Phipps, S., Krull, K.R., Liu, Q., …, & Zeltzer, L.K. (2012). Perceived positive impact of cancer among long-term survivors of childhood cancer: A report from the childhood cancer survivor study. Psycho-Oncology, 21(6), 630–639. doi:10.1002/pon.1959.
   PubMed Web of Science ®Google Scholar