Women's Experiences of Abnormal Cervical Cytology: Illness Representations, Care Processes, and Outcomes

Background: We wanted to explore the conceptual representations of illness and experiences with care among women who have learned of an abnormal Papanicolaou (Pap) smear result.

Methods: The study took place in 2 primary care, family practice clinics serving low-income, multiethnic patients in the Bronx, New York City. We conducted qualitative, semistructured telephone interviews with 17 patients who had recently learned of abnormal findings on a Pap smear. After a preliminary coding phase, the investigators identified 2 important outcomes: distress and dissatisfaction with care, and factors affecting these outcomes. A model was developed on a subset of the data, which was then tested on each transcript with an explicit search for disconfirming cases. A revised coding scheme conforming to the dimensions of the model was used to recode transcripts.

Results: Women reported complex, syncretic models of illness that included both biomedical and folk elements. Many concerns, especially nonbiomedical concerns, were not addressed in interactions with physicians. An important source of both distress and dissatisfaction with care was the women's lack of understanding of the inherent ambiguity of Pap smear results. When perceived care needs, which included emotional support as well as information, were not met, distress and dissatisfaction were greatly increased.

Conclusion: In this study, patients' illness models and expectations of care were not routinely addressed in their conversations with physicians about abnormal Pap smear results. When physicians can take the time to review patients' illness models carefully, distress and dissatisfaction with care can be reduced considerably.