“I’ve Never Not Had it So I Don’t Really Know What it’s Like Not to”: Nondifference and Biographical Disruption Among Children and Young People With Cystic Fibrosis
Restricted accessResearch articleFirst published online October, 2009
“I’ve Never Not Had it So I Don’t Really Know What it’s Like Not to”: Nondifference and Biographical Disruption Among Children and Young People With Cystic Fibrosis
The relevance of biographical disruption and loss of self for children and young people is unclear, particularly in cases of congenital illness such as cystic fibrosis, where no prior period of wellness, stability, or perceived normality might exist. We explored the meaning, importance, and forms of maintenance of ideas of normality among 32 children and young people with cystic fibrosis. We examine the ways in which normalcy is produced, maintained, and threatened, and discuss the implications for the applicability and relevance of these traditional sociological concepts. Analysis of children’s and young people’s accounts resulted in a conceptualization of four forms of normalcy based on personal and social definitions and audiences. Biographical disruption appeared relevant but in a more nuanced form than its usual conceptualization when applied to adult populations. Maintaining normality within the family resulted in continual biographical revision in anticipation of future illness trajectory and life course.
Anderton, J.M., Elfert, H., & Lai, M. ( 1989). Ideology in clinical context: Chronic illness, ethnicity and the discourse on normalisation. Sociology of Health and Illness, 11(3), 253-278.
2.
Angst, D. ( 2001). School-age children. In D. Bluebond-Langer (Ed.), Psychosocial aspects of cystic fibrosis (pp. 125-138). London: Arnold .
3.
Asbring, P. ( 2001). Chronic illness-A disruption in life: Identity-transformation among women with chronic fatigue syndrome and fibromyalgia. Journal of Advanced Nursing, 34(3), 312-319.
4.
Atkin, K., & Ahmad, W.I.U. ( 2001). Living a "normal" life: Young people coping with thalassaemia major or sickle cell disorder. Social Science and Medicine , 53(5), 615-626.
5.
Atkin, K., Ahmad, W.I.U., & Jones, L. ( 2002). Young South Asian deaf people and their families: Negotiating relationships and identities. Sociology of Health and Illness , 24(1), 21-25.
6.
Atkin, K., & Waqar, A. ( 2000). Pumping iron: Compliance with chelation therapy among young people who have thalassaemia. Sociology of Health and Illness, 22(4), 500-524.
7.
Beck, U. ( 1992). Risk society. London: Sage.
8.
Bluebond-Langer, M. ( 1978). The private worlds of dying children. Princeton, NJ: Princeton University Press.
9.
Bluebond-Langer, M. ( 1996). In the shadow of illness: Parents and siblings of the chronically ill child. Princeton, NJ: Princeton University Press.
10.
Bluebond-Langer, M., Lask, B., & Angst, D. B. (Eds.). (2001). Psychosocial aspects of cystic fibrosis. London: Arnold.
Bury, M. ( 1982). Chronic illness as biographical disruption. Sociology of Health and Illness, 4(2), 167-182.
13.
Charmaz, K. ( 1983). Loss of self: A fundamental form of suffering in the chronically ill. Sociology of Health and Illness, 5(2), 168-195.
14.
Clopper, R. ( 1994). Height and children’s stereotypes. In B. Stabler & L. E. Underwood (Eds.), Growth, stature and adaptation. Chapel Hill, NC: University of North Carolina.
15.
Davis, J.M., & Watson, N. ( 2001). Where are the children’s experiences? Analysing social and cultural exclusion in "special" and "mainstream" schools. Disability and Society, 16(5), 671-687.
16.
Deatrick, J., Knafl, K., & Murphy-Moore, C. (1999). Clarifying the concept of normalization. Journal of Nursing Scholarship, 31, 209-214.
17.
DeVault, M.L. ( 1991). Feeding the family: The social organisation of caring as gendered work. Chicago: University of Chicago.
18.
Dodge, J.A., Morison, S., Lewis, P.A., Geddes, D., Russell, G., Littlewood, J.M., et al. (1997). Incidence, population and survival of cystic fibrosis in the UK 1968-95. Archives of Disease in Childhood , 77, 493-496.
19.
Durst, C.L., Horn, M.V., MacLaughlin, E.F., Bowman, C.M., Starnes, V.A., & Woo, M.S. ( 2003). Psychosocial responses of adolescent cystic fibrosis patients to lung transplantation. Pediatric Transplantation , 5(1), 27-31.
20.
Gabe, J., Bury, M., & Ramsay, R. ( 2002). Living with asthma: The experiences of young people at home and at school. Social Science and Medicine, 55(9), 1619-1633.
21.
Giddens, A. ( 1984). The constitution of society. Cambridge, MA: Polity Press.
22.
Giddens, A. ( 1991). Modernity and self identity. Cambridge, MA: Polity Press.
23.
Goffman, E. ( 1963). Stigma: Notes on the management of a spoiled identity . Englewood Cliffs, NJ: Prentice Hall.
24.
Green, A., & Trenda, R. ( 2006). Attention to child development: A key piece of family-centered care for cardiac transplant recipients. Journal for Specialists in Pediatric Nursing, 11(2), 143-148.
25.
Greenhalgh, T., & Hurwitz, B. (Eds.). (1988). Narrative based medicine . London: BMJ.
26.
Gregory, S. ( 2005). Living with chronic illness in the family setting. Sociology of Health and Illness, 27(3), 372-392.
27.
Henley, L.D., & Hill, I.D. ( 1990). Errors, gaps, and misconceptions in the disease-related knowledge of cystic fibrosis patients and their families. Pediatrics, 85(6), 1008-1014.
28.
Kegan, R. ( 1982). The evolving self: Problems and process in human development . Cambridge, MA: Harvard University Press.
29.
Kelleher, D. (1988). Diabetes. London: Routledge.
30.
Kelly, M., & Field, D. ( 1998). Conceptualising chronic illness. In D. Field & S. Taylor (Eds.), Sociological perspectives on health, illness and health care. Oxford, United Kingdom: Blackwell Scientific.
31.
Knafl, K., & Deatrick, J. ( 1986). How families manage chronic conditions: An analysis of the concept of normalization. Research in Nursing and Health , 9, 215-222.
32.
Kroger, J. ( 2004). Identity in adolescence. The balance between self and other (3rd ed.). New York: Routledge.
33.
Kulich, M., Rosenfield, M., Goss, C.H., & Wilmott, R. ( 2003). Improved survival among young patients with cystic fibrosis . Journal of Pediatrics, 142(6), 631-636.
34.
Lowton, K. ( 2004). Only when I cough? Adults’ disclosure of cystic fibrosis. Qualitative Health Research, 14, 167-186.
35.
MacDonald, K. ( 2006). Living in limbo-Patients with cystic fibrosis waiting for transplant. British Journal of Nursing, 15(10), 566-572.
36.
Martel, L.F., & Miller, H.B. ( 1987). Stature and stigma: The biopsychosocial development of short males. Lexington, MA: DC Health.
37.
McCracken, M.J. ( 1984). Cystic fibrosis in adolescence. In R. Blum (Ed.), Chronic illness and disabilities in childhood and adolescence. New York: Grune and Stratton.
38.
McDougal, J. ( 2007). Promoting normalization in families with preschool children with type 1 diabetes. Journal for Specialists in Pediatric Nursing, 7(3), 1113-1120.
39.
Mishel, M. ( 1996). Living with chronic illness: Living with uncertainty . In S. Funk, E. Tornquist, M. Champagne, & R. Wiese (Eds.), Key aspects of caring for the chronically ill, hospital and home. New York: Springer.
40.
Morse, J.M., Wilson, S., & Penrod, J. ( 2000). Mothers and their disabled children: Refining the concept of normalization. Health Care for Women International, 21(8), 659-676.
41.
Nelson, A.M. ( 2002). A metasynthesis: Mothering other-than-normal children . Qualitative Health Research, 12, 515-530.
42.
Peek, D. ( 2001). The adult’s perspective. In M. Bluebond-Langer (Ed.), Psychosocial aspects of cystic fibrosis (pp. 29-36). London: Arnold.
43.
Pounceby, J. ( 1997). The coming of age project: A study of the transition from paediatric to adult care and treatment adherence among young people with cystic fibrosis. London: Department of Health/Cystic Fibrosis Trust.
44.
Pound, P., Gompertz, P., & Ebrahim, S. ( 1998). Illness in the context of older age: The case of stroke . Sociology of Health and Illness, 20(4), 489-506.
45.
Prout, A., Hayes, L., & Gelder, L. ( 1999). Medicines and maintenance of ordinariness in the household management of childhood asthma. Sociology of Health and Illness , 21(2), 137-162.
46.
Rehm, R.S., & Bradley, J.F. ( 2005). Normalization in families raising a child who is medically fragile/technology dependent and developmentally delayed. Qualitative Health Research, 15, 807-820.
47.
Richards, L. ( 1999). Using NVivo in qualitative research. Bundoora, VC, Australia: Qualitative Solutions and Research.
48.
Ritchie, J., & Spencer, L. ( 1994). Qualitative data analysis for applied policy research . In A. Bryman & R. G. Burgess (Eds.), Analysing qualitative data. London: Routledge.
49.
Robinson, C.A. ( 1993). Managing life with a chronic condition: The story of normalization. Qualitative Health Research, 3, 6-28.
50.
Rossi, L., Costa, M., & Dantas, R. ( 2007). Body image, self-esteem and work: Dimensions of quality of life in the perspective of burned patients and their relatives. Burns, 33(1), S90-S90.
51.
Stewart, J.L. ( 2003). "Getting used to it": Children finding the ordinary and routine in the uncertain context of cancer. Qualitative Health Research, 13, 394-407.
52.
Strauss, A.L., & Glaser, B. ( 1975). Chronic illness and the quality of life. St Louis, MO: Mosby.
53.
Velsor-Friedrich, B., Vlasses, F., Moberley, J., & Coover, L. ( 2004). Talking with teens about asthma management. Journal of School Nursing, 20(3), 140-148.
54.
Vitulano, L.A. ( 2003). Psychosocial issues for children and adolescents with chronic illness: Self-esteem, school functioning and sports participation . Child and Adolescent Psychiatric Clinics of North America , 12, 585-592.
55.
Williams, B., Mukhopadhyay, S., Dowell, J., & Coyle, J. ( 2007a). From child to adult: An exploration of shifting family roles and responsibilities in managing physiotherapy for cystic fibrosis. Social Science & Medicine, 65, 2135-2146.
56.
Williams, B., Mukhopadhyay, S., Dowell, J., & Coyle, J. ( 2007b). Problems and solutions: Accounts by parents and children of adhering to chest physiotherapy for cystic fibrosis. Disability & Rehabilitation, 29(14), 1087-1105.
57.
Williams, S. ( 2000). Chronic illness as biographical disruption or biographical disruption as chronic illness? Reflections on a core concept. Sociology of Health and Illness, 22(1), 40-67.
58.
Wilson, S., Bladin, P., & Saling, M. ( 2001). The "burden of normality": Concepts of adjustment after surgery for seizures. Journal of Neurology, Neurosurgery and Psychiatry, 70(May), 649-656.
59.
Wise, B.V. ( 2002). In their own words: The lived experience of pediatric liver transplantation. Qualitative Health Research, 12, 74-90.
60.
Wray, J., Long, T., Radley-Smith, R., & Yacoub, M. ( 2001). Returning to school after heart or heart-lung transplantation: How well do children adjust?Clinical Transplantation, 72(1), 100-106.
