Co-Designing Pay-It-Forward Strategies to Improve Retention in Cervical Cancer Care in Kenya: A Formative Participatory Study
Adhiambo, H. F.; Trolard, A.; Mangale, D. I.; Thuo, E.; Makanga, P. K.; Akoo, L.; Katumba, J.; Adagi, P.; Abente, B.; Odeny, B.; Bukusi, E.; Powell, B.; Drake, B.; Onyango, D.; Geng, E.; Tucker, J. D.; Odeny, T.
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Background: Retention is the bridge between diagnosis and survival in low and middle-income countries, including Kenya, where the cost of cervical cancer treatment can amount to several years of an average woman's earnings. Pay-it-forward (PIF), a prosocial approach in which an individual receives a gift and then considers supporting another person, offers a community-driven strategy to reduce barriers and improve engagement and retention in cancer care. This study explored opportunities to integrate PIF strategies into cervical cancer care through a human-centered design (HCD) workshop. Methods: We conducted a two-day HCD workshop in Kenya, informed by the WHO/UNICEF normative guide on co-creation with women with cervical cancer (on treatment or survivors), community representatives, and oncology care providers. Experience diagramming mapped the patient journey and identified barriers to retention. A designer-led team then developed the initial PIF prototypes, which were iteratively co-designed and refined with participants to align with their needs and preferences. Audio recordings and photographs of the co-design activities were transcribed and analyzed using rapid, team-based qualitative synthesis. Results: Among 25 participants, 52% (n=13) were women with cervical cancer and 48% (n=12) were health care providers or community representatives. Participants identified costs, extenuating circumstances, treatment side effects, health system challenges, discrimination, fear, and anxiety as barriers to retention. These barriers informed the co-design of six PIF component strategies: peer navigation, transport voucher fund, integrated service gift, a message board in clinic waiting areas, health insurance support fund, and a basket of kindness at checkout. Three of these (peer navigation, transport voucher fund, and health insurance support) have been effectively implemented in Kenya before for other health services. Participants noted that including both monetary and non-monetary nudges was essential but emphasized the need for transparency and oversight in monetary approaches. Conclusion: The Kenyan context provided rich opportunities for PIF component strategies to explore and enhance retention in cancer care. We hypothesize that PIF may improve retention by activating social capital through reciprocity, empathy, and a sense of belonging. Future work should pilot these PIF strategies to assess feasibility, acceptability, and appropriateness, and determine whether reciprocal giving can be sustained. Keywords: Pay-it-forward, cervical cancer, retention, engagement, and co-design Contributions to Literature We propose a hypothesized mechanism through which pay-it-forward may improve engagement and retention in care by activating social capital through reciprocity, empathy, trust, commitment, and belonging. We provide a menu of monetary and non-monetary pay-it-forward strategies that can be adapted and tested across different health care settings, offering practical options for addressing financial and psychosocial barriers to retention. We extend the pay-it-forward literature beyond one-time, low-cost preventive services by applying the approach to long-term, high-cost cancer care, where sustained engagement presents distinct implementation challenges.
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