Community-based health literacy focused intervention for cervical cancer control among Black women living with human immunodeficiency virus: A randomized pilot trial.

BACKGROUND: Health literacy plays an essential role in how individuals process health information to make decisions about health behaviours including cancer screening. Research is scarce to address health literacy as a strategy to improve cancer screening participation among women living with human immunodeficiency virus (HIV), particularly Black women who, despite the heavy burden of cervical cancer, report consistently low screening rates. AIM: To assess the feasibility, acceptability and preliminary efficacy of a health literacy-focused intervention called CHECC-uP-Community-based, HEalth literacy focused intervention for Cervical Cancer control-among women living with HIV. METHODS: We conducted a community-based, single-blinded randomized pilot trial. A total of 123 eligible women were enrolled and randomized to one of two conditions, control (i.e., cervical cancer brochure) or intervention (cervical cancer brochure plus 30-60 min health literacy-focused education followed by monthly phone counselling and navigation assistance for 6 months). Study assessments were done at baseline, 3 and 6 months. The final analysis sample included 58 women who completed all data points and whose Papanicolaou (Pap) test status was confirmed by medical records. RESULTS: All intervention participants who completed the programme would recommend the CHECC-uP to other women living with HIV. However, adherence in the experimental conditions was low (49.6% attrition rate including 20 women who dropped out before the intervention began) due, in large part, to phone disconnection. Those who had received the intervention had a significantly higher Pap test rate compared to women in the control group at 6 months (50% vs. 21.9%, p = .025). Participation in the intervention programme was associated with improved health literacy and other psychosocial outcomes at 3 months but the trend was attenuated at 6 months. CONCLUSIONS: The CHECC-uP was highly acceptable and led to improved Pap testing rates among Black women living with HIV. Future research should consider addressing social determinants of health such as phone connectivity as part of designing a retention plan targeting low-income Black women living with HIV. IMPLICATIONS: The findings should be incorporated into a future intervention framework to fulfil the unmet needs of Black women living with HIV to facilitate their decision-making about Pap test screening. PATIENT OR PUBLIC CONTRIBUTION: Nineteen community members including women living with HIV along with HIV advocates and care providers participated in four focus groups to develop cervical cancer screening decision-relevant information and the health literacy intervention. Additionally, a community advisory board was involved to provide guidance in the general design and conduct of the study.

Exploring community engaged research experiences and preferences: a multi-level qualitative investigation.

BACKGROUND: Community engagement may make research more relevant, translatable, and sustainable, hence improving the possibility of reducing health disparities. The purpose of this study was to explore strategies for community engagement adopted by research teams and identify areas for enhancing engagement in future community engaged research. METHODS: The Community Engagement Program of the Johns Hopkins Institute for Clinical and Translational Research hosted a forum to engage researchers and community partners in group discussion to reflect on their diverse past and current experiences in planning, implementing, and evaluating community engagement in health research. A total of 50 researchers, research staff, and community partners participated in five concurrent semi-structured group interviews and a whole group wrap-up session. Group interviews were audiotaped, transcribed verbatim, and analyzed using content analysis. RESULTS: Four themes with eight subthemes were identified. Main themes included: Community engagement is an ongoing and iterative process; Community partner roles must be well-defined and clearly communicated; Mutual trust and transparency are central to community engagement; and Measuring community outcomes is an evolving area. Relevant subthemes were: engaging community partners in various stages of research; mission-driven vs. "checking the box"; breadth and depth of engagement; roles of community partner; recruitment and selection of community partners; building trust; clear communication for transparency; and conflict in community engaged research. CONCLUSION: The findings highlight the benefits and challenges of community engaged research. Enhanced capacity building for community engagement, including training and communication tools for both community and researcher partners, are needed.