Understanding the role of embarrassment in gynaecological screening: a qualitative study from the ASPIRE cervical cancer screening project in Uganda

Abstract

ObjectiveTo define embarrassment and develop an understanding of the role of embarrassment in relation to cervical cancer screening and self-collected human papillomavirus (HPV) DNA testing in Uganda.DesignCross-sectional, qualitative study using semistructured one-to-one interviews and focus groups.Participants6 key-informant health workers and 16 local women, purposively sampled. Key informant inclusion criteria: Ugandan members of the project team. Focus group inclusion criteria: woman age 30–69 years, Luganda or Swahili speaking, living or working in the target Ugandan community. Exclusion criteria: unwillingness to sign informed consent.SettingPrimary and tertiary low-resource setting in Kampala, Uganda.ResultsIn Luganda, embarrassment relating to cervical cancer is described in two forms. ‘Community embarrassment’ describes discomfort based on how a person may be perceived by others. ‘Personal embarrassment’ relates to shyness or discomfort with her own genitalia. Community embarrassment was described in themes relating to place of study recruitment, amount of privacy in dwellings, personal relationship with health workers, handling of the vaginal swab and misunderstanding of HPV self-collection as HIV testing. Themes of personal embarrassment related to lack of knowledge, age and novelty of the self-collection swab. Overall, embarrassment was a barrier to screening at the outset and diminished over time through education and knowledge. Fatalism regarding cervical cancer diagnosis, worry about results and stigma associated with a cervical cancer diagnosis were other psychosocial barriers described. Overcoming psychosocial barriers to screening can include peer-to-peer education, drama and media campaigns.ConclusionsEmbarrassment and other psychosocial barriers may play a large role at the onset of a screening programme, but over time as education and knowledge increase, and the social norms around screening evolve, its role diminishes. The role of peer-to-peer education and community authorities on healthcare cannot be overlooked and can have a major impact in overcoming psychosocial and social barriers to screening.

Uptake of community‐based, self‐collected HPV testing vs. visual inspection with acetic acid for cervical cancer screening in Kampala, Uganda: preliminary results of a randomised controlled trial

“…It is worth noting that lower prevalence of self‐identified chronic disease does not necessarily reflect true disease status in these women, as some women may be undiagnosed as a result of lack of access to health services or avoid health care for other reasons. Although the demographic/behavioural risk factors captured in this study do not appear to explain this, other studies from ASPIRE have identified lack of perceived risk, knowledge of health issues, embarrassment and competing priorities as factors that contribute to engagement with cervical cancer screening .…”

Lung Cancer Screening Participation: Developing a Conceptual Model to Guide Research

“…Moderate levels of cancer worry have predicted breast cancer screening in high-risk women (Diefenbach, Miller, & Daly, 1999; Zhang et al, 2012). Cancer worry about the results of cervical cancer screening was also identified as an important psychosocial barrier to the screening process in an international qualitative study (Teng et al, 2014). Lung cancer worry may be an important psychological variable in the decision to screen or not in lung cancer.…”

Breast and gynecological cancer patients' risk factors associated with biopsychosocial problem‐related distress

“…Breasts are also strongly related to maternal caring via breast‐feeding of infants. At the same time, female genitals (especially the vagina and internal organs) are still seen as “unclean” (associated with excretory functions) and a taboo topic for social settings . Patients may experience higher rates of distress after being diagnosed with a cancer that is associated with sexually transmitted diseases (cervical and vulvar).…”

“…(associated with excretory functions) and a taboo topic for social settings. 15,16 Patients may experience higher rates of distress after being diagnosed with a cancer that is associated with sexually transmitted diseases (cervical and vulvar). In addition, GYN patients deal with sexual dysfunction and loss of reproductive ability.…”