Social late effects in pediatric cancer survivors
DOI:
https://doi.org/10.22439/dansoc.v31i2.6343Keywords:
Childhood cancer, late effects, exclusion, grounded theory, qualitativeAbstract
Life changes without warning when a child is diagnosed with cancer: both at
the time of diagnosis and during the initial treatment. The safe, well-known
everyday life is being disturbed, and the patients lose their opportunity to
have a normal youth, either periodically or permanently. Childhood cancer
survivors narrate that their cancer survival is characterized by positive words to rhetorical symbolize that the individual has beaten cancer: a success or a
victory. Surviving cancer are rarely without physical, mental and social late
effects. The survival has an underexposed downside: the risk of a life with severe
late effects that is significant for the survivors and have great consequences
for their ability to be a part of and contribute to society.
This article present sub results from the empirical qualitative Ph.D.-project
Social Consequences of Childhood Cancer including qualitative interviews and
observational studies. The study exposes some of the social consequences of
childhood cancer that occur post-cancer based on the perspective of 23 survivors
(aged 18-39). In addition, Erwing Goffman's and Aaron Antonovskys
theories of stigma and performance, as well as other relevant research literature,
are used to discuss and substantiate the consequences caused by late
effects described by child cancer survivors.
References
Andersen, Klaus, et al. 2017: »Ninth grade school performance in Danish childhood cancer survivors«. British Journal of Cancer, 116: 398-404. https://doi.org/10.1038/bjc.2016.438.
Antonovsky, Aaron 1987: Helbredets mysterium. København: Hans Reitzels Forlag.
Asdahl, Peter, et al. 2017: »Measuring childhood cancer late effects: Evidence of a healthy survivor effect«. European Journal of Epidemiology, 32(12): 1089-1096. https://doi.org/10.1007/s10654-017-0305-4.
Brinkmann, Svend og Tanggaard, Lene 2010: Kvalitative metoder – en grundbog. København: Hans Reitzels Forlag.
Brown, Morven, et al. 2016: »The long-term psychosocial impact of cancer: The views of young adult survivors of childhood cancer«. European Journal of Cancer Care, 25(3): 428-439. https://doi.org/10.1111/ecc.12380.
Bryman, Alan 2012: Social Research Methods. England: Oxford University Press.
Børnecancerfonden 2015: 20 års kamp mod Børnekræft. Valby: Børnecancerfonden.
Børnecancerfonden 2016: Fakta om kræft hos børn. Hentet november 2017, fra https://boernecancerfonden.dk/artikel/fakta-om-kraeft-hos-boern/.
Carlsen, Line 2015: Børnekræftoverleveres senfølger – en rapport om liver med senfølger baseret på børnekræftoverleveres unikke viden. København: Kræftens Bekæmpelse.
Carlsen, Line 2016: At overleve kræft som barn har konsekvenser for resten af livet- også selvom man ikke kan se det. København: Kræftens Bekæmpelse.
De Fine Licht, Sofie 2017: Late effects in survivors of childhood cancer – the Adult Life after Childhood Cancer in Scandinavia (ALiCCS) study (PhD afhandling). København: Kræftens Bekæmpelse.
Dieluweit, Ute, et al. 2010: »Social outcomes of long-term survivors of adolescent cancer «. Psycho-Oncology, 19(12): 1277-1284. https://doi.org/10.1002/pon.1692.
Font-Gonzalez, Anna, et al. 2016: »Social outcomes in adult survivors of childhood cancer compared to the general population: linkage of a cohort with population registers«. Psycho-Oncology, 25: 933-941. https://doi.org/10.1002/pon.4040.
Gatta, Gemma, et al. 2014: »Childhood cancer survival in Europe 1999-2007: Results of EUROCARE-5–a population-based study«. The Lancet.Oncology, 15(1): 35-47. https://doi.org/10.1016/S1470-2045(13)70548-5.
Ghaderi, Sara, et al. 2016: »Educational attainment among long-term survivors of cancer in childhood and adolescence: A norwegian population-based cohort study«. Journal of Cancer Survivorship: Research and Practice, 10(1): 87-95. https://doi.org/10.1007/s11764-015-0453-z.
Glaser, Barney 1992: Basics of grounded theory analysis: Emergence vs forcing. Mill Valley CA: Sociology Press.
Glaser, Barney 2007: Doing formal grounded theory. Mill Valley CA: Sociology Press.
Glaser, Barney and Strauss, Anselm 1967: The discovery of grounded theory: Strategies for qualitative research. New York: Aldine. https://doi.org/10.1097/00006199-196807000-00014.
Goffman, Erving 2005: Interaction Ritual: Essays in Face to Face Behavior. England: Taylor & Francis.
Goffman, Erving 2009: Stigma: om afvigerens sociale identitet. København: Samfundslitteratur.
Gunn, Mirja, et al. 2016: »Quality of life and late‐effects among childhood brain tumor survivors: a mixed method analysis«. Psycho‐Oncology, 25: 677-683. https://doi.org/10.1002/pon.3995.
Halvorsen, Janne, et al. 2018: »Health-related quality of life and psychological distress in young adult survivors of childhood cancer and their assoiaton with treatment, education and demographic factors«. Qual Life Res, 27: 529-537. https://doi.org/10.1007/s11136-017-1716-0.
Johansen, Christoffer (red.) 2013: Kræft – senfølger og rehabilitering. København: Hans Reitzel Forlag.
Kohornen, Liisa, et al. 2019: »Suicides and Deaths Linked to Risky Health Behavior in Childhood Cancer Patients: A Nordic Population-Based Register Study«. Cancer, 125:3631-3638. https://doi.org/10.1002/cncr.32373.
Kristiansen, Søren og Krogstrup, Hanne 2005: Deltagende Observation, Introduktion til en forskningsmetodik. København: Hans Reitzels Forlag.
Kvale, Stein og Brinkmann, Svend 2009: InterView – Introduktion til et håndværk. København: Hans Rietzels Forlag.
Li, William, et al. 2013: »The impact of cancer on the physical, psychological and social well-being of childhood cancer survivors«. European Journal of Oncology Nursing, 17(2):214-219. https://doi.org/10.1016/j.ejon.2012.07.010.
Lie, Hanne, et al. 2015: »Providing information about late effects after childhood cancer: Lymphoma survivors’ preferences for what, how and when«. Patient Education and Counseling, 98(5): 604-611. https://doi.org/10.1016/j.pec.2015.01.016.
Lown, Anne, et al. 2015: »Psychosocial Follow-Up in Survivorship as a Standard of Care in Pediatric Oncology«. Pediatr Blood Cancer, 62: 514-584. https://doi.org/10.1002/pbc.25783.
Lund, Lasse, et al. 2013: »Hospital contact for mental disorders in survivors of childhood cancer and their siblings in Denmark: A population-based cohort study«. The Lancet Oncology, 14(10): 971-980. https://doi.org/10.1016/S1470-2045(13)70351-6.
McLoone, Jordana, et al. 2013: »Childhood cancer survivors’ school (re)entry: Australian parents’ perceptions«. European Journal of Cancer Car, 22(4): 484-492. https://doi.org/10.1111/ecc.12054.
Melin-Johansson, Christina, et al. 2015: »The recovery process when participating in cancer support and rehabilitation programs in Sweden«. Global Qualitative Nursing Research, 2 doi: 10.1177/2333393615595965.
Mellblom, Anneli, et al. 2016: »Sequences of talk about emotional concerns in follow-up consultations with adolescent childhood cancer survivors«. Patient Education and Counseling, 99(1): 77-84. https://doi.org/10.1016/j.pec.2015.07.021.
Olsson, Maria, et al. 2015: »Experiences of teenagers and young adults treated for cancer in Sweden«. European Journal of Oncology Nursing, 19(5): 575-581. https://doi.org/10.1016/j.ejon.2015.03.003.
Sundberg, Kay, et al. 2009: »Positive and negative consequences of childhood cancer influencing the lives of young adults«. European Journal of Oncology Nursing, 13(3): 164-170. 10.1016/j.ejon.2008.05.009 https://doi.org/10.1016/j.ejon.2008.05.009.
Sundhedsstyrelsen 2015: Opfølgningsprogram for kræft hos børn. København: Sundhedsstyrelsen.
Sundler, Annelie, et al. 2013: »Living an everyday life through a child’s cancer trajectory: Families’ lived experiences 7 years after diagnosis«. Journal of Pediatric Oncology Nursing, 30(6): 293-300. https://doi.org/10.1177/1043454213513837.
Tougas, Anne-Marie, et al. 2016: »The potential role of benefit and burden finding in school engagement of young leukaemia survivors: An exploratory study«. Child: Care, Health and Development, 42(1): 68-75. https://doi.org/10.1111/cch.12245.
Wenninger, Kerstin, et al. 2013: »Coping in long-term survivors of childhood cancer: Relations to psychological distress«. Psycho-Oncology, 22(4): 854-861. https://doi.org/10.1002/pon.3073.
Winther, Jeanette, et al. 2015: »Childhood cancer survivor cohorts in Europe«. Acta Oncologica, 54(5): 655-668. https://doi.org/10.3109/0284186X.2015.1008648.
Woodgate, Roberta 2006: »Life is never the same: Childhood cancer narratives«. European Journal of Cancer Care, 15(1), 8-18. https://doi.org/10.1111/j.1365-2354.2005.00614.x.
Zeltzer, L. K., Recklitis, C., Buchbinder, D., Zebrack, B., Casillas, J., Tsao, J. C. et al. 2009: »Psychological status in childhood cancer survivors: A report from the childhood cancer survivor study«. Journal of Clinical Oncology, 27(14), 2396-2404. https://doi.org/10.1200/JCO.2008.21.1433.