Acceptable, hopeful, and useful: development and mixed-method evaluation of an educational tool about reproductive options for people with sickle cell disease or trait.

PURPOSE: People with sickle cell disease (SCD) or trait have many reproductive options, some of which decrease the chance of passing SCD to children, including in vitro fertilization with preimplantation genetic testing (IVF + PGT). Few are aware of these options, and educational materials are needed. This study aimed to develop an accessible, non-directive patient education material about reproductive options for those with SCD or trait via a process that incorporated stakeholders from the SCD community. METHODS: Multidisciplinary stakeholders guided development and revision of a novel pamphlet. Researchers applied health literacy scales to measure pamphlet understandability. We interviewed nine patients with SCD and six multidisciplinary clinicians to evaluate the pamphlet. Interviews were recorded, transcribed, and coded by a five-member team who developed a codebook and proposed themes that were revised by all research team members. Feedback was incorporated into a revised pamphlet. RESULTS: A two-page pamphlet describing reproductive options for people with SCD including IVF + PGT was acceptable to key stakeholders, including people with SCD. Material about this complex topic met health literacy standards, including being written at a 5th grade level. Patients reported feeling hopeful after reviewing the pamphlet, and participants considered the pamphlet useful, clear, and appropriate for distribution in clinics and online. CONCLUSIONS: Though awareness of reproductive options for those with SCD or trait is low, patients and providers find a novel pamphlet about this topic acceptable and useful. Educational materials about complex topics including IVF + PGT can be written at a level understandable to the average American.

The National Village Health Guide Scheme in India: lessons four decades later for community health worker programs today and tomorrow.

BACKGROUND: Based in part on the success of India's early community health worker (CHW) programs, the Government of India launched in 1977 a national CHW scheme-the Village Health Guides (VHGs)-to provide preventive, promotive, and basic curative care to rural populations. Although this program had promising origins in smaller demonstration projects, it failed to deliver the hoped-for impact at scale and was abandoned. Based on extensive evidence and experience, the World Health Organization and the World Health Assembly have strongly endorsed the value of national CHW programs and their integration into national health systems. Surprisingly, given the scale and importance of the VHG program and its pioneering nature as a national CHW program, little has been published describing this experience. This article is the second in a series that focuses on critical issues that face the effectiveness of large-scale CHW programs. CASE PRESENTATION: Several systemic factors emerge as main contributors to the failure of the VHG Scheme, namely, a lack of support from the formal health sector, an overly hasty implementation of the scheme, and poor communication between the government and health centers about the role of the VHGs. The remuneration structure and the VHG selection process were at the root of the program's shortcomings at the implementation level. CONCLUSION: National CHW schemes are an increasingly important tool for achieving universal health coverage and ending maternal and child deaths by 2030. Although the VHG Scheme was initiated over 40 years ago, the lessons described in this case highlight important considerations to help both current and future large-scale CHW programs avoid the same pitfalls.