Autologous bone marrow transplantation: the patient's perspective of information needs

Phenomenologic inquiry was used to explore patients' experiences with autologous bone marrow transplantation (ABMT). Interviews were conducted before and after implementation of a clinical pathway that included a teaching protocol for ABMT. Texts were analyzed individually, compared for pre- and postpathway patients to determine if different themes emerged from these two groups, and then combined. Themes common to both groups included (a) a range of needs for information, (b) everybody's different: a fine balance (the challenge of finding a balance when giving information to patients who vary in the amount of information they desire), (c) someone who has been there (the value of talking to someone who has survived an ABMT), (d) and the burden of ABMT patients teaching family. One theme that reflected different experiences of pre- and postpathway patients was that of the need to know detailed information about the ABMT and the fear of knowing too much. Whereas postpathway patients reflected more on the burden of knowing too much, prepathway patients expressed more dissatisfaction about not being told enough about procedures and symptoms to be expected. Suggestions for teaching patients about ABMT include being generally realistic while focusing on the positive, and viewing patient education as a process individualized according to each patient's needs.