Care and commitment as catalysts for independence: the impact of hemophilia society support programs through ripple effect mapping

Background: Patient organizations play a vital role in supporting individuals with chronic disorders by offering a sense of community and shared understanding to improve patient outcomes. However, systematically evaluating the long-term impact of such organizational activities remains a challenge. Ripple effect mapping (REM), a participatory evaluation tool, offers a structured approach to visually map patient organizations' intended and unintended outcomes. Methods: This study aimed to understand the impact of a Patient Organization for Hemophiliacs (POH) on people with hemophilia (PwH), who are registered members of the hemophilia patient organization. Data were collected through facilitated REM sessions, where participants collaboratively identified and mapped the direct and indirect impacts of the organization on their life and well-being. Thematic analysis was applied to categorize the emerging patterns and evaluate the long-term influence on the 30 PwH, collectively reflecting on POH's impact and generating consensus themes and a mind map.