"Who even talks to her anymore?" Misalignment between cervical cancer care landscape and community awareness in Rwanda.

Abstract

1601 Background: Cervical cancer remains the most common female cancer in Rwanda. Despite the significant advancement in early detection and treatment of cervical cancer in the country, many patients do not seek care or experience significant delays in seeking and getting care. Historically, elements of stigma have contributed to care non-engagement and patient delays. With ongoing growth and expansion of care services over the past decade, we sought to explore the current state of Rwandan patients’ perspectives on and experience with cervical cancer stigma. Methods: We conducted an exploratory qualitative study using semi-structured interviews of a purposeful sample of 25 patients with cervical cancer, including 12 living with HIV, who were treated at a tertiary cancer facility in Northern Rwanda. Interviews were conducted in Kinyarwanda, audio-recorded, transcribed verbatim, and translated into English. Guided by the Health Stigma and Discrimination Framework, the team conducted thematic analysis supported by NVivo (LUMIVERO). Results: Our analysis revealed that cancer stigma remains prevalent in participants’ communities, and this stigma has multifaceted impacts on their cancer care journey. Despite the national expansion in the availability of screening, early detection, and curative cervical cancer care services, patients continue to report limited community awareness of cervical cancer, with prevailing beliefs of fatalism and care scarcity. Knowledge gaps in cervical cancer diagnosis, treatment, and side effects contribute to stigmatizing behaviors by family members and neighbors, including rumors and social isolation. Participants also described perceptions of cancer incurability as contributing factors to social isolation. However, illness acceptance and religious engagement were identified as helpful coping mechanisms to mitigate stigma and promote care-seeking. Finally, participants’ lived experiences with cervical cancer and survivorship motivated them to encourage others in their community to participate in screening and seek medical care. Conclusions: Our findings highlight the influence of community beliefs about cervical cancer on medical care-seeking behavior and community reception of patients. Some beliefs were misaligned with patients’ current lived experiences with recent advances in the national cancer care environment. For Rwanda to achieve its cervical cancer elimination goals, these findings reinforce the need for continued community awareness of cervical cancer symptoms and treatment as well as sensitization to the available community assets for early detection and treatment.