Nutritional care in advanced cancer, the experiences of patients, families, and health care providers
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Anorexia and cachexia are prevalent problems in palliative cancer patients. To date, however, the majority of research related to these issues has been biomedical in nature. While this line of inquiry has produced important information regarding the pathophysiology and clinical management of cancer malnutrition, little is known about the experience of nutritional care from the perspective of patients, families, and health care providers. The minimal literature that exists on this topic suggests that these key stakeholders may hold divergent views about what constitutes appropriate nutritional care in the face of advanced disease, and that this divergence results in conflict among and between these parties. However, the concepts relevant to this dynamic are poorly understood and conceptually underdeveloped. Therefore, the grounded theory approach to data collection and analysis was used to develop a beginning substantive theory aimed at uncovering the social processes inherent in patient, family and health care provider interaction around the issue of nutritional care. Data were collected, by means of the conversational interview, participant observation, and chart review, from 13 cancer patients receiving in-hospital palliative care, 13 family members, 11 health care providers delivering in-hospital palliative care, and 10 bereaved family members. The basic psychosocial problem uncovered in the data was family members' needs to balance the means and goals of nutritional care while simultaneou ly meeting their own needs and goals related to the provision of this care. The unifying theme of "doing what's best" integrated the major categories into the key analytic model in this study. "Doing what's best" represents a continuum of behaviors and strategies, and includes the sub-processes of "fighting back: it's best to eat"; "pseudo-surrendering: holding on while letting go"; and "letting nature take its course: it's best not to eat." The extent to which family members embrace a particular sub-process and/or might move back and forth among them is a complex process involving many factors related to the patient, family member, health care provider, and the context in which the interaction about nutritional care takes place.