Patients' Expression of Treatment Outcome Uncertainty and Risk Before, During and After Stem Cell Transplantation

Background Patients who are offered the treatment option of stem cell transplantation (SCT) are in an extremely vulnerable position due to the risks related to their disease and its treatment (Serna et al., 2003). The treatment related risks (infection, GVHD, organ toxicity) could be life threatening or have high morbidity. Patient understanding of the risks and uncertain outcomes before the treatment begins is not confirmed by the limited research or evidence available. Distressingly little is known about the experience of patients from ethnically diverse backgrounds who undergo SCT. Purpose The purpose of this pilot study is to describe the experience of African-American, Latino and Caucasian SCT patient before, during and after stem cell transplantation in order to examine their expression of uncertainty and risk acknowledgment. Theoretical Framework Uncertainty, a mid-range nursing theory and framework for this study, is defined as the inability to determine the meaning of illness-related events, occurring when the decision maker is unable to assign definite value to objects or events, or is unable to predict outcomes accurately (Mishel, 1988). The nature of the disease of cancer and SCT treatment with unpredictable outcomes makes this concept especially relevant. Methods/Analysis Nine (three from each ethnic group) patients’ previously conducted interviews were analyzed using hermeneutic phenomenological design to discover the informants’ expression of their experiences. Uncertainty and risk perception at 5 time points (pre-treatment to day 100) during SCT treatment was examined. The purpose of hermeneutics is to clarify the meaning of unfamiliar experiences and to explain human phenomena. Hermeneutic methodology suggests meaning and significance have individual interpretation based on personal variables and cultural influence. The goal of this analytical process will be the development of a rich description of the participant’s experience before, during, and after the treatment with SCT. Findings The findings will present data in a manner that reflects the meaning of the texts, the cultural context, and describes the essence of the participants’ experiences thereby assisting healthcare providers understand this treatment from the patient’s perspective. This understanding influences the development of patient education material and supportive measures to assist future SCT patients.