Who is a survivor? Perceptions from individuals who experienced pediatric cancer and their primary support persons
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The purpose of this research was to examine the lived experiences of individuals who had cancer as children, as well as lived experiences of their current primary support persons.
Based on van Manen’s “new” interpretive phenomenology, interviews were conducted with ten pediatric cancer survivors and nine of their support persons to gain a more holistic understanding of the pediatric cancer experiences of children and their families.
Four themes emerged from the data; however, only the topic of the use of the term “survivor” and identification with the term will be discussed. All participants in the study described their personal definition of the term survivor and what it meant to be a survivor. Additionally, all individuals in the study discussed the concept of being a survivor and if they would consider themselves, or their loved ones, to be “survivors.”
The results of this study provide health care professionals, family members, and individuals fundraising or advocating for cancer causes with insights on how the term survivor may be interpreted. This study may provide insight to individuals who had cancer as children, in showing that their personal perspective shapes their identity; although “survivor” is common cancer vernacular, individuals can choose not to identify with their illness experiences.
KeywordsPediatric cancer Pediatric cancer survivor Pediatric cancer survivorship Perceptions of pediatric cancer survivorship Primary support persons
This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.
Compliance with ethical standards
Conflict of interest
M. Molinaro declares that she has no conflict of interest. P. Fletcher declares that she has no conflict of interest.
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
Informed consent was obtained from all individual participants included in the study.
- 3.Buka I (2009) Children and cancer: children’s health and the environment. World Health Organization. http://www.who.int/ceh/capacity/cancer.pdf. Accessed 11 Sept 2017
- 4.Bray J (2009) Meeting report: paediatric/adolescent/young adult cancer: a Pan-Canadian Initiative. Canadian Institutes of Health Research, CIHR Institute of Cancer ResearchGoogle Scholar
- 6.American Society of Clinical Oncology (2017) Childhood cancer: treatment options. In: American Society of Clinical Oncology. http://www.cancer.net/cancer-types/childhood-cancer/treatment-options. Accessed 6 Feb 2017
- 7.Canadian Cancer Society/National Cancer Institute of Canada: Canadian cancer statistics 2008, Toronto, 2008Google Scholar
- 8.Canadian Cancer Society childhood cancer statistics. In: The Canadian Cancer Society. 2016. http://www.cancer.ca/en/cancer-information/cancer-type/childhoodcancerinformation/statistics/?region=on. Accessed 6 Feb 2017
- 10.Canadian Institutes of Health Research (2014) The late effects of childhood cancer treatments initiative. Retrieved September 11 2017, from: http://www.cihrirsc. gc.ca/e/45844.html
- 11.National Cancer Institute Cancer in children and adolescents (2015) http://www.cancer.gov/cancertopics/factsheet/sites-types/childhood
- 12.Public Health Agency of Canada. The cancer in young people in Canada program 2013. http://www.phac-aspc.gc.ca/cdmc/cancer/childhood_cancer-cancer_enfants-eng.php
- 13.American Cancer Society. Treating children with cancer. In: Am Cancer Soc 2016. https://www.cancer.org/cancer/cancer-in-children/how-are-childhood-cancers-treated.html. Accessed 6 Feb 2017
- 14.Baggot CR, Patterson Kelly K, Fochtman D, Foley GV. Chemotherapy. In: Baggot CR, Patterson Kelly K, Fochtman D, Foley GV, eds. Nursing Care of Children and Adolescents with Cancer. 3rd ed. W.B Saunders Company, PhiladelphiaGoogle Scholar
- 15.Janes-Hodder H & Keene N (2002) Childhood Cancer: A Parent's Guide to Solid Tumor Cancers. 2nd ed.O'Reilly Media, Inc., SebastopolGoogle Scholar
- 16.Wilson K Supportive Care Kline NE (Ed) (2004) Essentials of pediatric oncology nursing: a core curriculum. 2nd Ed Association of Pediatric Oncology NursesGoogle Scholar
- 17.Miller RE (2012) Side effects of chemo and radiation. In: The Nemours Foundation. http://kidshealth.org/parent/medical/cancer/side_effects.html#/
- 18.Armenian SH, Meadows AT, Bhatia S (2011) Late effects of childhood cancer and its treatment. Principles and practice of pediatric oncology, 6th edn. Philadelphia, Lippincott, Williams, & WilkinsGoogle Scholar
- 19.Tipton MT (2007) Side effects of cancer chemotherapy. In: Skeel RT (ed) Handbook of cancer chemotherapy, 7th edn. Lippincott Williams & Wilkins, PhiladelphiaGoogle Scholar
- 20.NCCS Charter (1986) National Coalition for Cancer SurvivorshipGoogle Scholar
- 23.Stephenson WH, Fletcher PC, Schneider MA (2014) Women with breast cancer: embracing and distancing themselves from the term cancer survivor. Clin Nurs Stud 2(1):64–79Google Scholar
- 26.Creswell JW (2013) Qualitative inquiry & research design: choosing among the five approaches. Sage Publications, CaliforniaGoogle Scholar
- 27.van Manen M (1984) Practicing phenomenological writing. Phenomenol Pedagog 2(1):36–69Google Scholar
- 30.Patton MQ (2002) Qualitative research and evaluation methods. Sage Publications, CaliforniaGoogle Scholar
- 31.Lincoln Y, Guba EG (1985) Naturalistic inquiry. Sage, Newbury ParkGoogle Scholar
- 32.van Manen M (1990) Researching lived experience: human science for an action sensitive pedagogy. Althouse Press, LondonGoogle Scholar
- 33.Rowland J et al (2004) Cancer survivorship—United States, 1971-2001. Morb Mortal Wkly Rep 53(24):527–529Google Scholar