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Unique Considerations when Treating Adolescents with Chronic Illness

Adolescence is marked by significant developmental changes in virtually all aspects of life, encompassing major transformations as individuals move from childhood to adulthood. Changes associated with this era include significant internal processes (ego and identity development, changing self and body image, onset of and continued pubertal changes) and psychosocial influences (peer and family relationships, new romantic/sexual relationships). These salient developmental issues, as well as the overarching challenges represented by strivings for independence and future-oriented goals, can be made more complicated and stressful by the presence of a chronic illness – although this is not always the case.

Keywords

  • Chronic Illness
  • Medical Regimen
  • Identity Development
  • Illness Experience
  • Attachment Status

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Notes

  1. 1.

    Dr. Hauser passed away during the final stages of our writing this chapter. He was significantly involved in the conceptualization and writing processes, and even after his death, his influence continued to shape the chapter’s final form. The concepts explored in this chapter had been central foci in the relationship of its authors.

References

  • Aalto, A.-M. (1999). Diabetes cognitions and social support in the management of diabetes: A cross-sectional study on social psychological determinants of health-related quality of life and self-care among adults with type I diabetes. Jyväskylä, Finland: Gummerus Printing.

    Google Scholar 

  • Aalto, A.-M., Uutela, A., & Aro, A. R. (1997). Health related quality of life among insulin-dependent diabetics: Disease-related and psychosocial correlates. Patient Education and Counseling, 30, 215–225.

    PubMed  CrossRef  Google Scholar 

  • Allen, J. P., & Land, D. (1999). Attachment in adolescence. In J. Cassidy & P. R. Shaver (Eds.), Handbook of attachment: Theory, research, and clinical applications (pp. 319–335). New York: Guilford Press.

    Google Scholar 

  • Bandura, A. (2001). Social cognitive theory: An agentic perspective. Annual Review of Psychology, 52, 1–26.

    PubMed  CrossRef  Google Scholar 

  • Baumrind, D. (1987). A developmental perspective on adolescent risk taking in contemporary America. New Directions for Child Development, 37, 93–125.

    PubMed  CrossRef  Google Scholar 

  • Beresford, B. A., & Sloper, P. (2003). Chronically ill adolescents’ experiences of communicating with doctors: A qualitative study. Journal of Adolescent Health, 33(3), 172–179.

    PubMed  CrossRef  Google Scholar 

  • Berge, J. M., Patterson, J. M., Goetz, D., & Milla, C. (2007). Gender differences in young adults’ perceptions of living with cystic fibrosis during the transition to adulthood: A qualitative investigation. Families, Systems, & Health, 25(2), 190–203.

    CrossRef  Google Scholar 

  • Beyers, W., & Çok, F. (2008). Adolescent self and identity development in context (editorial). Journal of Adolescence, 31, 147–150.

    PubMed  CrossRef  Google Scholar 

  • Blum, R. W. (1992). Chronic illness and disability in adolescence. Journal of Adolescent Health, 13, 364–368.

    PubMed  CrossRef  Google Scholar 

  • Boice, M. M. (1998). Chronic illness in adolescence. Adolescence, 33(132), 927–939.

    PubMed  Google Scholar 

  • Boss, P., & Couden, B. A. (2002). Ambiguous loss from chronic physical illness: Clinical interventions with individuals, couples, and families. Psychotherapy in Practice, 58(11), 1351–1360.

    Google Scholar 

  • Botello-Harbaum, M., Nansel, T., Haynie, D. L., Iannotti, R. J., & Simons-Morton, B. (2008). Responsive parenting is associated with improved type 1 diabetes-related quality of life. Child: Care, Health, and Development, 34(5), 675–681.

    CrossRef  Google Scholar 

  • Bradley, C. (1994). Handbook of psychology and diabetes. Amsterdam: Harwood Academic Publishers GmbH.

    Google Scholar 

  • Brooks-Gunn, J., Petersen, A. C., & Eichorn, D. (1985). Time of maturation and psychosocial functioning in adolescence. Journal of Youth and Adolescence, 14, 149–264.

    CrossRef  Google Scholar 

  • Cassidy, J., & Shaver, P. R. (1999). Handbook of attachment: Theory, research, and clinical applications. New York: Guilford Press.

    Google Scholar 

  • Christian, B. J., & D’Auria, J. P. (2006). Building life skills for children with cystic fibrosis: Effectiveness of an intervention. Nursing Research, 55(5), 300–307.

    PubMed  CrossRef  Google Scholar 

  • Cicchetti, D. (2002). Against all odds: Pathways to resilient adaptation in maltreated children. Presentation given at the dedication of the Donald J. Cohen Auditorium, Yale University, Yale Child Study Center, June 19, 2002.

    Google Scholar 

  • Ciechanowski, P. S., Katon, W. J., Russo, J. E., & Walker, E. A. (2001). The patient-provider relationship: Attachment theory and adherence to treatment in diabetes. The American Journal of Psychiatry, 158(1), 29–35.

    PubMed  CrossRef  Google Scholar 

  • Clay, D. L. (2000). Commentary: Rethinking our interventions in pediatric chronic pain and treatment research. Journal of Pediatric Psychology, 25, 52–55.

    CrossRef  Google Scholar 

  • Clay, D. L., & Hopps, J. A. (2003). Treatment adherence in rehabilitation: The role of treatment accommodation. Rehabilitation Psychology, 48(3), 215–219.

    CrossRef  Google Scholar 

  • Cohler, B. J. (1991). The life story and the study of resilience and response to adversity. Journal of Narrative and Life History, 1(2&3), 169–200.

    Google Scholar 

  • Cystic Fibrosis Foundation. (2006). New statistics show CF patients living longer. Retrieved September 1, 2008, from http://www.cff.org/aboutCFFoundation/NewsEvents/2006NewsArchive/index.cfm?ID=2711&TYPE=1132.

  • Dorn, L. D., Dahl, R. E., Woodward, H. R., & Biro, F. (2006). Defining the boundaries of early adolescence: A user’s guide to assessing pubertal status and pubertal timing in research with adolescents. Applied Developmental Science, 10(1), 30–56.

    CrossRef  Google Scholar 

  • East, P. L., Hess, L. E., & Lerner, R. M. (1987). Peer social support and adjustment of early adolescent peer groups. Journal of Early Adolescence, 7(2), 153–163.

    CrossRef  Google Scholar 

  • Eccles, J. S., Buchanan, C. M., Flanagan, C., Fuligni, A., Midgley, C., & Yee, D. (1991). Control versus autonomy during early adolescence. Journal of Social Issues, 47(4), 53–68.

    CrossRef  Google Scholar 

  • Eiser, C. (1993). Growing up with a chronic disease: The impact on children and their families. London: Kingsley.

    Google Scholar 

  • Elkind, D. (1998). All grown up and no place to go: Teenagers in crisis. Cambridge, MA: Perseus Books.

    Google Scholar 

  • Erikson, E. H. (1968). Identity: Youth and crisis. New York: W.W. Norton & Company.

    Google Scholar 

  • Floyd, F. J., & Gallagher, E. M. (1997). Parental stress, care demands, and use of support services for school-age children with disabilities and behavior problems. Family Relations, 46, 359–371.

    CrossRef  Google Scholar 

  • Freud, A. (1958). Adolescence. The Psychoanalytic Study of the Child, 13, 255–278.

    PubMed  Google Scholar 

  • Freud, S. (1920). A general introduction to psychoanalysis. New York: Horace Liveright.

    CrossRef  Google Scholar 

  • Gore, S., & Eckenrode, J. (1996). Context and process in research on risk and resilience. In R. J. Haggerty, L. R. Sherrod, N. Garmezy, & M. Rutter (Eds.), Stress, Risk, and Resilience in Children and Adolescents: Processes, Mechanisms, and Interventions (pp. 19–63). New York, NY; Cambridge University Press.

    PubMed  CrossRef  Google Scholar 

  • Grey, M., Lipman, T., Cameron, M. E., & Thurber, F. W. (1997). Coping behaviors at diagnosis and in adjustment one year later in children with diabetes. Nursing Research, 46(6), 312–317.

    PubMed  CrossRef  Google Scholar 

  • Grotevant, H. D., & Cooper, C. R. (1986). Individuation in family relationships: A perspective on individual differences in the development of identity and role-taking skill in adolescence. Human Development, 29(2), 82–100.

    CrossRef  Google Scholar 

  • Hall, G. S. (1904). Adolescence: Its psychology and its relations to physiology, anthropology, sociology, sex, crime, religion, and education. New York: D. Appleton & Company.

    CrossRef  Google Scholar 

  • Hanson, C. L., De Guire, M. J., Schinkel, A. M., Henggeler, S. W., & Burghen, G. A. (1992). Comparing social learning and family systems correlates of adaptation in youths with IDDM. Journal of Pediatric Psychology, 17(5), 555–572.

    PubMed  CrossRef  Google Scholar 

  • Hauser, S. T. (1976). Loevinger’s model and measure of ego development: A critical review. Psychological Bulletin, 83(5), 928–955.

    CrossRef  Google Scholar 

  • Hauser, S. T. (1991). Adolescents and their families: Paths of ego development. New York, NY: Free Press.

    PubMed  Google Scholar 

  • Hauser, S. T., Borman, E. H., Powers, S. I., Jacobson, A. M., & Noam, G. G. (1990). Paths of adolescent ego development: Links with family life and individual adjustment. Psychiatric Clinics of North America, 13(3), 489–510.

    PubMed  Google Scholar 

  • Hauser, S. T., DiPlacido, J., Jacobson, A. M., Paul, E., Bliss, R., Milley, J., et al. (1993). The family and the onset of its youngster’s insulin-dependent diabetes: Ways of coping. In R. E. Cole & D. Reiss (Eds.), How do families cope with chronic illness? (pp. 25–55). Hillsdale, NJ: Lawrence Erlbaum Associates.

    Google Scholar 

  • Hauser, S. T., DiPlacido, J., Jacobson, A. M., Willett, J., & Cole, C. (1993). Family coping with an adolescent’s chronic illness: An approach and three studies. Journal of Adolescence, 16, 305–329.

    PubMed  CrossRef  Google Scholar 

  • Hauser, S. T., Powers, S. I., Noam, G. G., Jacobson, A. M., Weiss, B., & Folansbee, D. J. (1984). Familial contexts of adolescent ego development. Child Development, 55, 195–213.

    PubMed  CrossRef  Google Scholar 

  • Hunter, J. J., & Maunder, R. G. (2001). Using attachment theory to understand illness behavior. General Hospital Psychiatry, 23, 177–182.

    PubMed  CrossRef  Google Scholar 

  • Jacobson, A. M., Hauser, S. T., Lavori, P., Willett, J. B., Cole, C. F., Wolfsdorf, J. I., et al.(1994). Family environment and glycemic control: A four-year prospective study of children and adolescents with IDDM. Psychosomatic Medicine, 56, 401–409.

    PubMed  Google Scholar 

  • Jolly, K., Weiss, J. A., & Liehr, P. (2007). Understanding adolescent voice as a guide for nursing practice and research. Issues in Comprehensive Pediatric Nursing, 30, 3–13.

    PubMed  CrossRef  Google Scholar 

  • Kager, V. A., & Holden, E. W. (1992). Preliminary investigation of the direct and moderating effects of family and individual variables on the adjustment of children and adolescents with diabetes. Journal of Pediatric Psychology, 17(4), 491–502.

    PubMed  CrossRef  Google Scholar 

  • Kamen, L. P., & Seligman, M. E. (1987). Explanatory style and health. Current Psychological Research & Reviews, 6(3), 207–218.

    CrossRef  Google Scholar 

  • Krementz, J. (1989). How it feels to fight for your life. Boston: Little, Brown.

    Google Scholar 

  • Kyngas, H., & Barlow, J. (1995). Diabetes: An adolescent’s perspective. Journal of Advanced Nursing, 22, 941–947.

    PubMed  CrossRef  Google Scholar 

  • Kyngas, H., & Hentinen, M. (1995). Meaning attached to compliance with self-care, and conditions for compliance among young diabetics. Journal of Advanced Nursing, 21, 729–736.

    PubMed  CrossRef  Google Scholar 

  • La Greca, A. M., Auslander, W. F., Greco, P., Spetter, D., Fisher, Jr., E. B., & Santiago, J. V. (1995). I get by with a little help from my friends: Adolescents’ support for diabetes care. Journal of Pediatric Psychology, 20(4), 449–476.

    PubMed  CrossRef  Google Scholar 

  • Loevinger, J. (1976). Ego development: Conceptions and theories. San Francisco: Jossey-Bass Publishers.

    Google Scholar 

  • Maier, S. F., Peterson, C., & Schwartz, B. (2000). From helplessness to hope: The seminal career of Martin Seligman. In J. E. Gillham (Ed.), The science of optimism and hope: Research essays in honor of Martin E.P. Seligman. Laws of life symposia series (pp. 11–37). Philadelphia: Templeton Foundation Press.

    Google Scholar 

  • Marcia, J. E. (1993). The relational roots of identity. In J. Kroger (Ed.), Discussions on ego identity (pp. 101–120). Hillsdale, NJ: Lawrence Erlbaum Associates, Inc.

    Google Scholar 

  • Modi, A. C., Marciel, K. K., Slater, S. K., Drotar, D., & Quittner, A. L. (2008). The influence of parental supervision on medical adherence in adolescents with cystic fibrosis: Developmental shifts from pre to late adolescence. Children’s Health Care, 37(1), 78–82.

    CrossRef  Google Scholar 

  • Newacheck, P. W., McManus, M. A., & Fox, H. B. (1991). Prevalence and impact of chronic illness among adolescents. American Journal of Diseases of Children, 145, 1367–1373.

    PubMed  Google Scholar 

  • Orukibich, J., Nassaw, K., & Mori, K. (2005). Comments on defining adolescence. Psychological Reports, 97(3), 737–738.

    PubMed  CrossRef  Google Scholar 

  • Pless, I. B., & Pinkerton, P. (1975). Chronic childhood disorder: Promoting patterns of adjustment. London: Kimpton Publishers.

    Google Scholar 

  • Powers, S. I., Hauser, S. T., & Kilner, L. A. (1989). Adolescent mental health. American Psychologist, 44(2), 200–208.

    PubMed  CrossRef  Google Scholar 

  • Reivich, K., & Gillham, J. (2003). Learned optimism: The measurement of explanatory style. In S. J. Lopez & C. R. Snyder (Eds.), Positive psychological assessment: A handbook of models and measures (pp. 57–74). Washington, DC: American Psychological Association.

    CrossRef  Google Scholar 

  • Rolland, J. S. (1994). Families, illness, and disability: An integrative treatment model. New York: Basic Books.

    Google Scholar 

  • Ryan, R. M., Deci, E. L., & Grolnick, W. S. (1995). Autonomy, relatedness, and the self: Their relation to development and psychopathology. In D. Cicchetti & D. J. Cohen (Eds.), Developmental psychopathology, volume II: Theory and methods (pp. 618–655). New Jersey: John Wiley & Sons.

    Google Scholar 

  • Safyer, A. W., Hauser, S. T., Jacobson, A. M., Bliss, R., Herskowitz, R. D., Wolfsdorf, J. I. et al. (1993). The impact of the family on diabetes adjustment: A developmental perspective. Child and Adolescent Social Work Journal, 10(2), 123–140.

    CrossRef  Google Scholar 

  • Salonius-Pasternak, D. E. (2004). Developmental precursors of resilient outcomes in young adults with insulin-dependent diabetes mellitus. (Doctoral dissertation, Tufts University, 2004). Dissertation Abstracts International, 65(3-B), 1581.

    Google Scholar 

  • Scheier, M. F., & Carver, C. S. (1987). Dispositional optimism and physical well-being: The influence of generalized outcome expectancies on health. Journal of Personality, 55(2), 169–210.

    PubMed  CrossRef  Google Scholar 

  • Schur, H. V., Gamsu, D. S., & Barley, V. M. (1999). The young person’s perspective on living and coping with diabetes. Journal of Health Psychology, 4(2), 223–236.

    CrossRef  Google Scholar 

  • Schwartz, S. J., & Montgomery, M. J. (2002). Similarities or differences in identity development? The impact of acculturation and gender on identity process and outcome. Journal of Youth and Adolescence, 31(5), 359–372.

    CrossRef  Google Scholar 

  • Seiffge-Krenke, I. (1995). Ways of coping with everyday problems and minor events. In I. Seiffge-Krenke (Ed.), Stress, coping, and relationships in adolescence (pp. 94–129). New Jersey: Lawrence Erlbaum Associates, Inc.

    Google Scholar 

  • Seligman, M., & Darling, R. B. (1993). Ordinary families, special children. New York: Guilford Press.

    Google Scholar 

  • Seligman, M. E. P., & Maier, S. (1967). Failure to escape traumatic shock. Journal of Experimental Psychology, 74, 1–9.

    PubMed  CrossRef  Google Scholar 

  • Skinner, T. C., & Hampson, S. E. (1998). Social support and personal models of diabetes in relation to self-care and well-being in adolescents with type I diabetes mellitus. Journal of Adolescence, 21(6), 703–715.

    PubMed  CrossRef  Google Scholar 

  • Smetana, J. G. (1988). Adolescents’ and parents’ conceptions of parental authority. Child Development, 59, 321–335.

    PubMed  CrossRef  Google Scholar 

  • Spear, H. J., & Kulbok, P. (2004). Autonomy and adolescence: A concept analysis. Public Health Nursing, 21(2), 144–152.

    PubMed  CrossRef  Google Scholar 

  • Spilkin, A., & Ballantyne, A. (2007). Behavior in children with a chronic illness: A descriptive study of child characteristics, family adjustment, and school issues in children with cystinosis. Families, Systems, & Health, 25(1), 68–84.

    CrossRef  Google Scholar 

  • Sullivan, B.-J. (1979). Adjustment in diabetic adolescent girls: I. Development of the diabetic adjustment scale. Psychosomatic Medicine, 42(2), 119–125.

    Google Scholar 

  • Thompson, R. J., & Gustafson, K. E. (1996). Adaptation to chronic childhood illness. Washington, DC: American Psychological Association.

    CrossRef  Google Scholar 

  • Thorne, S. E., Nyhlin, K. T., & Paterson, B. L. (2000). Attitudes toward patient expertise in chronic illness. International Journal of Nursing Studies, 37, 303–311.

    PubMed  CrossRef  Google Scholar 

  • van der Lee, J. H., Mokkink, L. B., Grootenhuis, M. A., Heymans, H. S., & Offringa, M. (2007). Definitions and measurements of chronic health conditions in childhood. Journal of the American Medical Association, 297(24), 2741–2751.

    PubMed  CrossRef  Google Scholar 

  • Varni, J. W., Babani, L., Wallander, J. L., Roe, T. F., & Frasier, S. D. (1989). Social support and self-esteem effects on psychological adjustment in children and adolescents with insulin-dependent diabetes mellitus. Child and Family Behavior Therapy, 11(1), 1–16.

    CrossRef  Google Scholar 

  • Varni, J. W., La Greca, A. M., & Spirito, A. (2000). Cognitive-behavioral interventions for children with chronic health conditions. In P. C. Kendall (Ed.), Child and adolescent therapy: Cognitive behavioral procedures (2nd ed., pp. 291–333). New York: Guilford Press.

    Google Scholar 

  • Wallander, J. L., & Varni, J. W. (1995). Appraisal, coping, and adjustment in adolescents with a physical disability. In J. L. Wallander & L. J. Siegel (Eds.), Adolescent health problems (pp. 209–231). New York: Guilford Press.

    Google Scholar 

  • Warner, D. E., & Hauser, S. T. (April, 2005). Developmental precursors of resilient outcomes in young adults with insulin-dependent diabetes mellitus. Poster session presented at the biennial meeting of the Society for Research in Child Development, Atlanta, Georgia, USA.

    Google Scholar 

  • Welch, G., Dunn, S. M., & Beeney, L. J. (1994). The ATT39: A measure of psychological adjustment to diabetes. In C. Bradley (Ed.), Handbook of psychology and diabetes: A guide to psychological measurement in diabetes research and practice (pp. 223–245). Amsterdam: Harwood Academic Publishers GmbH.

    Google Scholar 

  • Williams, P. G., Holmbeck, G. N., & Greenley, R. N. (2002). Adolescent health psychology. Journal of Consulting and Clinical Psychology, 70(3), 828–842.

    PubMed  CrossRef  Google Scholar 

  • World Health Organization. (2008). Adolescent health. Retrieved September 1, 2008, from http://www.who.int/topics/adolescent_health/en

  • Wysocki, T. (1993). Associations among teen-parent relationships, metabolic control, and adjustment to diabetes in adolescents. Journal of Pediatric Psychology, 18(4), 441–452.

    PubMed  CrossRef  Google Scholar 

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Acknowledgments

The authors wish to thank Judith Crowell, MD, Luisa Ribeiro, Ph.D., and Ann Rifkin, Ph.D., for their assistance in reviewing the chapter at various stages in the process.

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Correspondence to Dorothy E. Warner .

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Warner, D.E., Hauser, S.T. (2009). Unique Considerations when Treating Adolescents with Chronic Illness. In: O'Donohue, W. (eds) Behavioral Approaches to Chronic Disease in Adolescence. Springer, New York, NY. https://doi.org/10.1007/978-0-387-87687-0_3

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