Unpacking cervical cancer stigma in healthcare: lessons learnt from Indonesian patients and health professionals

Indonesia has the highest cervical cancer incidence and mortality rates in Southeast Asia, with 36,000 new diagnoses and 21,000 deaths occurring in 2020. This situation stems from delayed introduction of free HPV vaccination, poor uptake of cervical screening, and widespread stigmatisation of cervical cancer. Ethnographic research conducted between 2019 and 2021 documented women's experiences of cervical cancer stigma in healthcare, stigmatising narratives and practices exhibited by health professionals, and non-stigmatising practices demonstrated by health professionals. Four dominant narratives were identified including stigma based on: perceived sexual immorality; marital status; low socio-economic status and/or education; and discourses of pollution associated with vaginal bleeding and female hygiene. Lessons learned provide culturally grounded insights for achieving stigma-free healthcare, such as avoiding: blaming women or their partners; linking cervical cancer with sexual impropriety; mentioning sex work or enquiring about women's or their partners' professions; negative references to female hygiene or vaginal bleeding; and reference to patients' class, education level, marital status or other personal attributes. The representation of HPV as a common infection occurring within marriage was shown to be an effective strategy for avoiding stigma, while institutional change was identified as necessary to remove barriers to reproductive health service access related to marital status.