Abstract

Community engagement and education can improve acceptability and participation in clinical trials conducted in Kisenyi, Uganda. In preparation for a randomized controlled trial exploring different methods for cervical cancer screening, we explored optimal engagement strategies from the perspective of community members and health professionals. We conducted key informant interviews followed by serial community forums with purposeful sampling and compared the perspectives of women in Kisenyi (N = 26) to health-care workers (HCW) at the local and tertiary care center levels (N = 61) in a participatory, iterative process. Key themes identified included format, content, language, message delivery, and target population. Women in Kisenyi see demonstration as a key part of an educational intervention and not solely a didactic session, whereas health professionals emphasized the biomedical content and natural history of cervical cancer. Using local language and lay leaders with locally accessible terminology was more of a priority for women in Kisenyi than clinicians. Simple language with a clear message was essential for both groups. Localization of language and reciprocal communication using demonstration between community members and HCW was a key theme. Although perceptions of the format are similar between women and HCW, the content, language, and messaging that should be incorporated in a health education strategy differ markedly. The call for lay leaders to participate in health promotion is a clear step toward transforming this cervical cancer screening project to be a fully participatory process. This is important in scaling up cervical cancer screening programs in Kisenyi and will be central in developing health education interventions for this purpose.

Highlights

  • Cervical cancer remains the most common cancer among women in sub-Saharan Africa, which represents the majority of the global burden of this disease [1]

  • Related to the method of screening being promoted by the ASPIRE project, which includes women collecting their own vaginal swabs for HPV testing, women wanted to have someone physically demonstrate with models how to perform the collection and be able to handle the swabs during the education intervention

  • It is well documented that there is a lack of cervical cancer education, in low- and middle-income countries (LMIC), and that this lack of knowledge can be a barrier to uptake in communities [21]

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Summary

Introduction

Cervical cancer remains the most common cancer among women in sub-Saharan Africa, which represents the majority of the global burden of this disease [1]. Despite the availability in many countries of an effective primary prevention option, the HPV vaccine, and early secondary prevention interventions with screening, Uganda has one of the highest rates of cervical cancer in the world [2, 3]. This is largely due to the competing health priorities and lack of health-care infrastructure to fully implement the national cervical cancer screening strategies. The WHO has strongly endorsed a trial comparing self-collection for HR-HPV and VIA as a crucial step to define optimal cervical cancer screening in LMIC [5, 6]; implementation of large RCTs in LMIC provides significant challenges for researchers

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