Informational needs and the experiences of women with abnormal Papanicolaou smears

Abstract

To describe the experience of women with abnormal Papanicolaou (Pap) smears with a particular focus on their informational needs. The small purposive sample consisted of 10 demographically diverse women with a history of at least one abnormal Pap smear, who attended one Women's Health outpatient clinic that typically serves a multiethnic, low-income population. Individual 30- to 60-min tape-recorded interviews were conducted, transcribed verbatim, and analyzed according to Colaizzi's eidetic method of phenomenological analysis. A manual categorizing strategy and a computer software (Qualrus, version 2.0) strategy were used for data management and coding. Six major themes emerged from the data: initial response to the diagnosis; dealing with stigma; seeking information and support; enduring diagnostic and treatment procedures; formulating a concept of disease; and normalizing. The essential structure of the experience of having an abnormal Pap smear in terms of informational needs involved initial anxiety at disclosure, followed by an urgent need for information. Stigma associated with a sexually transmitted disease (STD) and a dearth of information available for male partners were problematic and influenced decisions about disclosure of human papillomavirus (HPV) infection to current or future partners. Misinformation or misunderstanding of available information was common. Information obtained from the Internet was experienced as private and allowed adequate time, but Web sites that grouped HPV with general STD information were confusing and further stigmatizing. Information obtained from healthcare providers was experienced as supportive if facts were accompanied by reassurance and familiar analogies were used. Information from providers was experienced as nonsupportive if too much medical jargon was used, if not enough time was spent to explain the information, if facts were not accompanied by interpersonal concern, or if a patient-provider relationship was not established. Patient education regarding abnormal Pap smears and HPV should address the concerns of those affected and should use message framing that informs but decreases stigmatization. Women should be offered the option of individualized informative and supportive counseling resources after initial disclosure of an abnormal Pap smear to adequately address concerns such as information for partners, the nature of HPV, an appropriate concept of cancer risk, and reassurance regarding potential effects on sexuality and fertility. Public information forums should address issues specific to high-risk HPV rather than generalization as an STD.