Paper
Wednesday, July 21, 2004
Uncertainty in Illness Theory Provides a Framework for Evidence-Based Care of Childhood Cancer Survivors
Sheila Judge Santacroce, PhD, APRN1, Nina Kaddan-Lottick, MD, MSPH2, and Deborah Ellickson-Brown, RN, MS2. (1) School of Nursing, Yale University, New Haven, CT, USA, (2) School of Medicine, Department of Pediatrics, Section of Pediatric Hematology/Oncology, Yale University, New Haven, CT, USA
| Learning Objective #1: Describe Uncertainty in Illness Theory (UIT) (Mishel, 1988; 1990) |
| Learning Objective #2: Explain how UIT can guide the comprehensive nursing care of long-term childhood cancer survivors |
Uncertainty is the greatest source of psychosocial distress in serious illness (Koocher, 1985), pervading the trajectory from diagnosis through survivorship or bereavement (Santacroce, 2003). Uncertainty is a central feature of childhood cancer survivorship due to the unpredictability of late effects; lack of information about the cancer, treatment exposures and risk for late effects; complexity in the health care system; and ambiguity in the meaning of physical, cognitive, and behavioral changes (Koocher et al., 1981; Parry, 2003). To manage uncertainty, survivors need two types of care. The first type is disease-related care including: information about the cancer, its treatment, and the risks for late effects that are inherent in a particular survivor's situation; risk-related laboratory and clinical monitoring; and education that can empower survivors to adopt health behaviors and minimize their risks for late effects. Because monitoring, information and education are insufficient means for achieving risk reduction, survivors also need psychosocial care. Psychosocial care is particularly important for childhood cancer survivors and their parents, populations for whom reminders of cancer and its treatment can trigger anxiety and posttraumatic stress symptoms (PTSS), including avoidance of disease related information, interactions with health care providers and health care utilization. This paper describes the development, implementation and outcomes of Health Education, Research and Outcomes for Survivors of Childhood Cancer (HEROS), a Yale University evidence-based collaborative faculty practice that provides integrated follow-up care for childhood cancer survivors. HEROS is guided by Mishel's (1988, 1990) Uncertainty in Illness Theories and the body of evidence about chronic adverse physical and psychosocial outcomes (late effects) of childhood cancer. Given the increasing cure rates and number of childhood cancer survivors in the world, evidence-based programs of integrative care HEROS are important ways to promote quality of life and minimize disability in childhood cancer survivorship.
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Sigma Theta Tau International
July 21, 2004