`Having cancer changed my life,and changed my life forever': survival,illness legacy and service provision following cancer in childhood

Abstract

Objectives: To explore how having cancer in childhood influences social and personal wellbeing in young adulthood.

Methods: Questionnaires (55) eliciting lengthy written responses and in-depth interviews (32) were used with male and female survivors of cancer in childhood (aged between 18 and 28 years). Analysis drew on a combination of grounded-theory techniques and narrative analysis.

Results: Three key areas are outlined relating to the characterization of survivorship by participants. These include highlighting survival as not necessarily a simple end to a cancer story, issues relating to post-cancer bodily self-concept and its gendering, and, efforts at managing uncertainties through medical interactions and information gathering.

Discussion: Participant stories in this study illustrate that even in long-term survival, cancer is present as a web of ongoing influences from the original disease and treatment, as well as the social and personal aftershocks that can occur well after malignant cells have been controlled. Findings highlight the necessity for complex redevelopment of healthcare services and social support provisions for this growing population.

Keywords

Adolescence Cancer survival Childhood Healthcare Quality of life

Get full access to this article

View all access options for this article.

References

Hewitt M , Weiner SL , Simone JV , eds. Childhood cancer survivorship: improving quality of life. Washington: National Academic Press, 2003.

Attiyeh EF , London WB , Mosse YP Chromosome 1p and 11q deletions and outcome in neuroblastoma. N Engl J Med 2005; 353: 2243—53.

van Eys J.

Jhe truly cured child?

Pediatrician 1991; 18: 90—5.

Oeffinger KC , Eshelman DA , Tomlinson GE , Buchanan GR Programs for adult survivors of childhood cancer. J Clin Oncol 1998; 16: 2864—7.

Eiser C. Practitioner review: long-term consequences of childhood cancer. J Child Psychol Psychiatry 1998; 39: 621—33.

Kissen G. Late effects of treatment on paediatric oncology. In: Selby P , Bailey C , eds. Cancer and the adolescent. London: BMJ Publishing Group, 1996.

Bloom JR Surviving and thriving. Psycho-Oncology 2002 ; 11: 89—92.

Bury M. Chronic illness as biographical disruption. Sociol Health Illness 1982; 4: 167—82.

Hyden LC Illness as narrative. Sociol Health Illness 1997; 19: 48—69.

10.

Williams GH The genesis of chronic illness: narrative reconstruction . Sociol Health Illness 1984; 6: 175—200.

11.

Williams SJ Chronic illness as biographical disruption or biographical disruption as chronic illness? Reflections on a core concept . Sociol Health Illness 2000; 22: 40—67.

12.

Helman CG Culture, health and illness, 4th edn. Oxford: Butterworth Heinemann, 2000 .

13.

Frank AW The wounded storyteller: body, illness and ethics. Chicago : University of Chicago Press, 1995 .

14.

Frank AW The renewal of generosity: illness, medicine, and how to live. Chicago: University of Chicago Press, 2004.

15.

van Eys J. Is all well with the young man, absolom? Springfield : Charles C., Chomas, 1988.

16.

Drew S. The Delta factor: storying survival and the disjuncture between public narratives and personal stories of life after cancer. Storytelling Self Society 2005; 1: 76—102.

17.

Drew S. , Duncan R. , Walter R. Qualitative epidemiology: moving beyond an oxymoron. Australasian Epidemiologist 2007; 14: 22—5.

18.

Drew S. Self-reconstruction and biographical revisioning: survival following cancer in childhood or adolescence. Health 2003; 7: 181—99.

19.

Drew S. Thinking about fertility: narratives of young adult survivors of cancer in childhood or adolescence. In: Kirkman M , Maher JM, Souter KT, eds. The fertile imagination: narratives of reproduction . Meridian 2002; 18: 83—101.

20.

Drew S. Stranger in the community: life after cancer in childhood. Unpublished doctoral thesis. Melbourne: The University of Melbourne, 2003.

21.

Zebrack BJ , Chesler MA

Health-related worries, self-image and life outlooks of long-term survivors of childhood cancer. Health

Social Work 2001 ; 26: 245—56.

22.

Zebrack BJ , Chesler MA Quality of life in childhood cancer survivors. Psycho-Oncology 2002; 11: 132—41.

23.

Billson A. , Walker D. Assessment of health status in survivors of cancer. Arch Dis Childhood 1994; 70: 200—4.

24.

Eiser C. , Morse R. Can parents rate their child's health related quality of life? Results of a systematic review. Qualitative Life Res 2001; 10: 347—57.

25.

Fochtman D. The concept of suffering in children and adolescents with cancer. J Paediatr Oncol Nurs 2006; 23: 92—102.

26.

Strauss A. , Corbin J. Basics of qualitative research: grounded theory procedures and techniques . London: Sage, 1990.

27.

Strauss A. Qualitative analysis for social scientists. Sydney : Cambridge University Press, 1987 .

28.

Bryman A. , Burgess RG Developments in qualitative data analysis: an introduction. In: Bryman A , Burgess RG , eds. Analyzing qualitative data. New York: Routledge, 1994.

29.

Charmaz K. Grounded theory. In: Smith JA , Harre R , Langenhove LV , eds. Rethinking methods in psychology. London: Sage, 1995.

30.

Mattingly C. , Garro L. Narrative and the cultural construction of illness and healing. Berkeley: University of California Press, 2000.

31.

Gubrium JF , Hostein JA Narrative practice and the coherence of personal stories. Sociological Q 1998; 39: 163.

32.

Somers MR The narrative construction of identity: a relational and network approach . Theory Society 1994; 23: 605—49.

33.

Bruner J. Acts of meaning. Cambridge, MA: Harvard University Press, 1990.

34.

Charmaz K. Qualitative interviewing and grounded theory analysis. In: Gubrium JF , Holstein JA , eds. Handbook of interview research: context and method., London: Sage, 2002.

35.

Harding S. Introduction: is there a feminist method? In: Harding S , ed. Feminism and methodology. Bloomington: Indiana University Press, 1987.

36.

Carr-Gregg M. The adolescent with cancer in the Australian Health Care System. Unpublished doctoral thesis. Sydney: University of New South Wales, 1986.

37.

Prouty D. , Ward-Smith P. , Hutto CJ The lived experience of adult survivors of childhood cancer. J Paediatr Oncol Nurs 2006; 23: 143—51.

38.

Grealy L. Autobiography of a face. New York: Houghton Mifflin Company, 1994.

39.

Grealy L. Mirrors. In: Foster P , ed. Minding the body: women writers on body and soul. New York : Anchor Books, Doubleday, 1994.

40.

Miles S. Topic of cancer. Good Weekend Melbourne 2000 ; 32—4.

41.

LaroucheSS , Chin-Peuckert. Changes in body image experienced by adolescents with cancer . J Paediatr Oncol Nurs 2006; 23: 200—9.

42.

Williams SJ , Bendelow GA Recalcitrant bodies? Children, cancer and the transgression of corporeal boundaries. Health 2000; 4: 51—00.

43.

Alasker FD Pubertal timing, overweight and psychological adjustment. J Early Adolescence 1992; 12: 396—419.

44.

Holsen I. , Kraft P. The relationship between body image and depressed mood in adolescence: a 5-year longitudinal panel study. J Health Psychol 2001; 6: 613—27.

45.

Bearison DJ They never want to tell you: children talk about cancer. Cambridge, MA: Harvard University Press, 1991.

46.

Bluebond-Langer M. The private worlds of dying children. New Jersey: Princetown University Press , 1980.

47.

Good MJD , Good BJ , Schaffer C. , Lind SE

American oncology and the discourse on hope. Culture Medicine

Psychiatry 1990; 14: 59—79.

48.

Gordon DR

Rmbodying illness, embodying cancer. Culture Medicine

Psychiatry 1990; 14: 275—97.

49.

McNamara B. Fragile lives: death, dying and care. Crows Nest NSW: Allen and Unwin, 2001.

50.

Gravelle K. , Bertram JA Getting married and raising a family: teenagers face to face with cancer. New York: Julian Messner , 1986.

51.

Rosen D. Between two worlds: bridging the cultures of child health and adult medicine . J Adolescent Health 1995; 17: 10—16.

52.

Viner R.

Transition from paediatric to adult health care. Bridging the gaps or passing the buck?

Arch Dis Child 1999; 81: 271—5.

53.

Viner R. , Keane M. Youth matters: evidence based best practice for the care of young people in hospital. London: Caring for Children in the Health Services, 1998.

54.

Stiller CA Cancer in adolescence: special problems; special solutions. BMJ 1994; 308: 1382—3.

55.

Parsons SK , Brown AP Evaluation of quality of life in childhood cancer survivors: a methodological conundrum. Med Pediatr Oncol 1998; (Suppl. 1): 46—53.

56.

Blum RW Transition to adult health care: setting the stage. J Adolescent Health 1995; 17: 3—5.

57.

Sawyer S. , Blair S. , Bowes G.

Chronic illness in adolescents: transfer or transition to adult services?

J Paediatr Child Health 1997; 33: 88—90.

58.

Sawyer SM , Aroni R. The sticky issue of adherence. J Paediatr Child Health 2003; 39: 2—5.

59.

Sawyer SM , Aroni R.

Self-management in adolescents with chronic illness. What does it mean and how can it be achieved?

Med J Aust 2005; 183: 405—9.

60.

Marcell AV , Klein JD , Fisher I. , et al. Male adolescent use of health care services: where are the boys? J Adolescent Health 2002; 30: 35—43.

61.

Rosen D. Transition to adult health-care for adolescents and young-adults with cancer . Cancer (Suppl.) 1993; 71: 3411—14.

62.

Sawyer SM , Drew SE , Duncan RE Young people with chronic disease: the double whammy. Aust Fam Physician 2007; 36: 622—7.

63.

Sawyer SM , Drew S. , Yeo MS , Britto MB Adolescents and chronic disease. Lancet 2007 ; 369: 1481—9.

64.

D'Angio G. Foreword. In: Keene N , Hobbie W , Ruccione K , eds. Childhood cancer survivors: a practical guide to your future. Cambridge: O'Reilly, 2000.

65.

Konsler GK , Jones GR Transition issues for survivors of childhood cancer and their healthcare providers . Cancer Pract 1993; 1: 319—24.

66.

Keene N , Hobbie W , Ruccione K , eds. Childhood cancer survivors: a practical guide to your future. Cambridge: O'Reilly, 2000.

67.

Mclean WE , Foley GV , Ruccione K. , Skiar C. Transitions in the care of adolescents and young adult survivors of childhood cancer. Cancer 1996; 78: 1340—4.

68.

Zebrack BJ , Chesler MA Quality of life in childhood cancer survivors. Psycho-Oncology 2001; 11: 132—41.