When risk becomes illness: The personal and social consequences of cervical intraepithelial neoplasia medical surveillance

Abstract

BackgroundAfter the early detection of cervical intraepithelial neoplasia (CIN), medical surveillance of the precancerous lesions is carried out to control risk factors to avoid the development of cervical cancer.ObjectiveTo explore the effects of medical surveillance on the personal and social lives of women undergoing CIN follow-up and treatment.MethodologyA generic qualitative study using a poststructuralist perspective of risk management was carried out in a gynecology clinic in a public hospital of the Galician Health Care System (Spain). Participants were selected through purposive sampling. The sample consisted of 21 women with a confirmed diagnosis of CIN. Semistructured interviews were recorded and transcribed, and a thematic analysis was carried out, including researcher triangulation to verify the results of the analysis.FindingsTwo main themes emerged from the participants’ experiences: CIN medical surveillance encounters and risk management strategies are shaped by the biomedical discourse, and the effects of “risk treatment” for patients include (a) profound changes expected of patients, (b) increased patient risk management, and (c) resistance to risk management. While doctors’ surveillance aimed to prevent the development of cervical cancer, women felt they were sick because they had to follow strict recommendations over an unspecified period of time and live with the possibility of a life-threatening disease. Clinical risk management resulted in the medicalization of women’s personal and social lives and produced great uncertainty.ConclusionsThis study is the first to conceptualize CIN medical surveillance as an illness experience for patients. It also problematizes the effects of preventative practices in women’s lives. Patients deal with great uncertainty, as CIN medical surveillance performed by gynecologists simultaneously trivializes the changes expected of patients and underestimates the effects of medical recommendations on patients’ personal wellbeing and social relations.

Asymmetric Power Relations in Gynaecological Consultations for Cervical Cancer Prevention: Biomedical and Gender Issues

“…Our previous publications derived from this study have focused on exploring the experiences of women during medical surveillance for CIN [15,26]. The results showed that women who have a diagnosis of CIN experienced important healthcare informational challenges when accessing primary and specialised care, which had several repercussions on their wellbeing.…”

“…The dearth of information provided and women's limited knowledge about HPV infection and treatment made it difficult for them to understand and participate in decision-making about CIN prevention and treatment [15]. Additionally, we revealed how patients' daily lives were affected by risk management in CIN medical surveillance [26]. Although doctors' surveillance aimed to prevent the development of cervical cancer, women felt they were sick because they had to follow strict recommendations over an unspecified period of time and lived with the possibility of a life-threatening disease.…”

“…Owing to the gender expectations associated with femininity, when a woman is diagnosed with CIN she must assume responsibility for having developed cervical lesions that may evolve to cancer, due to her "assumed" inappropriate sexual behaviour (in the case of CIN, being sexually active, having had multiple sexual partners, not having used condoms). This situation generates a high moral burden and individual guilt [1,26].…”

“…and one in CIN medical management. The interview guide was structured as follows: experience receiving the diagnosis, experience living with CIN and experience summary [26].…”

“…Although doctors' surveillance aimed to prevent the development of cervical cancer, women felt they were sick because they had to follow strict recommendations over an unspecified period of time and lived with the possibility of a life-threatening disease. Women with CIN reacted to the biomedical risk discourse in different ways: (a) complying with medical recommendations, which affected their sexuality and interfered with the possibility of motherhood, (b) increasing their personal risk management strategies beyond what is proposed by gynaecologists (e.g., women wanted to be under constant medical surveillance and requested treatment for their partners, avoided sexual intercourse, looked for other protective factors such as a healthy diet), and (c) resisting proposed risk management strategies (e.g., condom use, vaccination, quitting smoking) by questioning various elements of the prescriptions they received [26]. In this paper, we analyse healthcare users' perceptions of their relationship with healthcare providers (gynaecologists) during CIN care and the cognitive, moral, and emotional responses these relationships created.…”