Uncertainty in Adolescents and Young Adults With Cancer

Carol L. Decker

Joan E. Haase

Cynthia J. Bell

uncertainty, young adult cancer
ONF 2007, 34(3), 681-688. DOI: 10.1188/07.ONF.681-688

Purpose/Objectives: To describe uncertainty in three groups of adolescents and young adults with cancer at specific times in their cancer experience: newly diagnosed, diagnosed one to four years, and diagnosed five or more years.

Design: Descriptive, cross-sectional, comparative.

Setting: Six pediatric oncology centers in North America.

Sample: 193 adolescents and young adult cancer survivors aged 11-22 years, able to read English, with no central nervous system disease.

Methods: A booklet of questionnaires was completed during a clinic visit or hospitalization. Uncertainty was measured using Mishel's Uncertainty in Illness Scale.

Main Research Variables: Uncertainty and time since diagnosis.

Findings: No significant differences were found in the overall level of uncertainty among the three time-since-diagnosis groups; however, analysis of variance on individual items detected significant group differences for 8 of the 33 items. Newly diagnosed survivors had significantly higher uncertainty for future pain, the unpredictable illness course, staff responsibilities, and concerns about when they would be able to care for themselves. Survivors five or more years from diagnosis had significantly higher uncertainty related to knowing what was wrong, and they had more unanswered questions and higher uncertainty compared to the two other groups about the probability of successful treatment. All of the survivors had high uncertainty about the multiple meanings of communication from doctors.

Conclusions: The overall level of uncertainty remained unchanged across the survivorship continuum, but differences existed in specific concerns.

Implications for Nursing: Uncertainty is important to consider far beyond the treatment period, particularly assessment of information needs and acknowledgment of inherent uncertainty throughout cancer survivorship.

Jump to a section


    Atkinson, P. (1995). Medical talk and medical work. London: Sage.
    Barron, C.R. (2000). Stress, uncertainty, and health. In V.H. Rice (Ed.), Handbook of stress, coping, and health: Implications for nursing research, theory, and practice (pp. 517-539). Thousand Oaks, CA: Sage.
    Bearison, D.J., & Pacifici, C. (1984). Psychological studies of children who have cancer. Journal of Applied Developmental Psychology, 5, 263-280.
    Centers for Disease Control and Prevention. (2004). A national action plan for cancer survivorship: Advancing public health policy. Retrieved July 9, 2004, from
    Cohen, M.H. (1993). The unknown and the unknowable: Managing sustained uncertainty. Western Journal of Nursing Research, 16(1), 77-96.
    Edwards, B., & Clarke, V. (2004). The psychological impact of a cancer diagnosis on families: The influence of family functioning and patients' illness characteristics on depression and anxiety. Psycho-Oncology, 13, 562-576.
    Friedman, D.L., Freyer, D.R., & Levitt, G.A. (2006). Models of care for survivors of childhood cancer. Pediatric Blood and Cancer, 46, 159-168.
    Gaberson, K.B. (1995). The effect of humorous and musical distraction on preoperative anxiety. AORN Journal, 62, 784-788, 790-791.
    George, R., & Hutton, S. (2003). Palliative care in adolescents. European Journal of Cancer, 39, 2662-2668.
    Ginsberg, J.P., Hobbie, W.L., Carlson, C.A., & Meadows, A.T. (2006). Delivering long-term follow-up care to pediatric cancer survivors: Transitional care issues. Pediatric Blood and Cancer, 46, 169-173.
    Greving, D.M., & Santacroce, S.J. (2005). Cardiovascular late effects. Journal of Pediatric Oncology Nursing, 22, 38-47.
    Haase, J.E. (2004). The Adolescent Resilience Model as a guide to interventions. Journal of Pediatric Oncology Nursing, 21, 289-299.
    Haase, J.E., Heiney, S.P., Ruccione, K., & Stutzer, C. (1999). Research triangulation to derive meaning-based quality-of-life theory: Adolescent resilience model and instrument development. International Journal of Cancer, 12, 125-131.
    Haase, J.E., & Rostad, M. (1994). Experiences of completing cancer therapy: Children's perspectives. Oncology Nursing Forum, 21, 1483-1492.
    Higginson, I.J., & Costantini, M. (2002). Communication in end-of-life cancer care: A comparison of team assessments in three European countries. Journal of Clinical Oncology, 20, 3674-3682.
    Hinds, P. (1988). The relationship of caring behaviors of nurses with hopefulness and health care outcomes of adolescents. Archives of Psychiatric Nursing, 2, 21-29.
    Hinds, P., Martin, J., & Vogel, R. (1987). Nursing strategies to influence adolescent hopefulness during cancer. Journal of Pediatric Oncology Nursing, 4, 14-22.
    Hinds, P., Schum, L., & Srivastava, D.K. (2002). Is clinical relevance sometimes lost in summative scores? Western Journal of Nursing Research, 24, 345-353.
    Hinds, P.S., Quargnenti, A.G., Fairclough, D.L., Bush, A.J., Betcher, D., Rissmiller, G., et al. (1999). Hopefulness and its characteristics in adolescents with cancer. Western Journal of Nursing Research, 21, 600-620.
    Institute of Medicine. (2003). Childhood cancer survivorship: Improving care and quality of life. Retrieved September 2, 2003, from
    Lazarus, R.S., & Folkman, S. (1984). Stress, appraisal, and coping. New York: Springer.
    Lee, Y.L. (2006). The relationships between uncertainty and post-traumatic stress in survivors of childhood cancer. Journal of Nursing Research, 14, 133-141.
    Lepore, S.J., & Helgeson, V.S. (1998). Social constraints, intrusive thoughts, and mental health after prostate cancer. Journal of Social and Clinical Psychology, 17, 89-106.
    Mack, J.W., & Grier, H.E. (2004). The day one talk. Journal of Clinical Oncology, 22, 563-566.
    Masera, G., Beltrame, F., Corbetta, A., Fraschini, D., Adamoli, L., Jankovic, M., et al. (2003). Audio taping communication of the diagnosis of childhood leukemia: Parents' evaluation. Journal of Pediatric Hematology/Oncology, 25, 368-371.
    McCormick, K.M. (2002). A concept analysis of uncertainty in illness. Journal of Nursing Scholarship, 34, 127-131.
    McKenzie, H., & Crouch, M. (2004). Discordant feelings in the lifeworld of cancer survivors. Health, 8, 139-157.
    Mishel, M. (1981). The measurement of uncertainty in illness. Nursing Research, 30, 258-263.
    Mishel, M. (1984). Perceived uncertainty and stress in illness. Research in Nursing and Health, 7, 163-171.
    Mishel, M. (1990). Reconceptualization of the Uncertainty in Illness Theory. Image—Journal of Nursing Scholarship, 22, 256-262.
    Mishel, M., & Braden, C.J. (1988). Finding meaning: Antecedents of uncertainty in illness. Nursing Research, 37, 98-103, 127.
    Mishel, M., Germino, B.B., Gil, K.M., Belyea, M., Laney, I.C., Stewart, J.L., et al. (2005). Benefits from an uncertainty management intervention for African American and Caucasian older long-term breast cancer survivors. Psycho-Oncology, 14, 962-978.
    Mullan, F. (1985). Seasons of survival: Reflections of a physician with cancer. New England Journal of Medicine, 313, 270-273.
    Mullins, L.L., Chaney, J.M., Pace, T.M., & Hartman, V.L. (1997). Illness uncertainty, attributional style, and psychological adjustments in older adolescents and young adults with asthma. Journal of Pediatric Psychology, 22, 871-880.
    National Cancer Policy Board. (2003). Childhood cancer survivorship: Improving care and quality of life. Washington, DC: National Academies Press.
    Neville, K. (1998). The relationships among uncertainty, social support, and psychological distress in adolescents recently diagnosed with cancer. Journal of Pediatric Oncology Nursing, 15, 37-46.
    Novakovic, B., Fears, T., Wexler, L., McClure, L., Wilson, D., McCalla, J., et al. (1996). Experiences of cancer in children and adolescents. Cancer Nursing, 19, 54-59.
    Pagano-Therrien, J., & Santacroce, S.J. (2005). Bone mineral density decrements and children diagnosed with cancer. Journal of Pediatric Oncology Nursing, 22, 328-338.
    Parry, C. (2003). Embracing uncertainty: An exploration of the experiences of childhood cancer survivors. Qualitative Health Research, 2, 227-246.
    Prouty, D., Ward-Smith, P., & Hutto, C.J. (2006). The lived experience of adult survivors of childhood cancer. Journal of Pediatric Oncology Nursing, 23, 143-151.
    Ptacek, J.T., & Ptacek, J.J. (2001). Patients' perceptions of receiving bad news about cancer. Journal of Clinical Oncology, 19, 4160-4164.
    Rolland, J.S. (2005). Cancer and the family: An integrative model. Cancer, 104(11, Suppl.), 2584-2595.
    Santacroce, S.J., & Lee, Y.L. (2006). Uncertainty, post-traumatic stress, and health behavior in young adult childhood cancer survivors. Nursing Research, 55, 259-266.
    Weekes, D.P., & Kagan, S. (1994). Adolescents completing cancer therapy: Meaning, perception, and coping. Oncology Nursing Forum, 21, 663-670.
    Wineman, N.M., Schwetz, K.M., Zeller, R., & Cyphert, J. (2003). Longitudinal analysis of illness uncertainty, coping, hopefulness, and mood during participation in a clinical drug trial. Journal of Neuroscience Nursing, 35, 100-106.
    Yarcheski, A. (1988). Uncertainty in illness and the future. Western Journal of Nursing Research, 10, 401-413.
    Young, B., Dixon-Woods, M., Windridge, K.C., & Heney, D. (2003). Managing communication with young people who have a potentially life threatening chronic illness: Qualitative study of patients and parents. BMJ, 326, 305.