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. Data analysis was performed, and the data were entered into XMIND© mapping software and reviewed via group transcription and field notes.

RESULTS

Thematic analysis identified five themes, including knowledge and awareness, support systems, care and management, community empowerment, and gratitude. The results of this study support the idea that POH has been a catalyst for transformative change among PwH.

CONCLUSIONS

POH actively promoted autonomy, resilience, and meaningful community relationships. Using REM has been proven to show patient organisations' deeper, often subtle, consequences, emphasizing benefits that typical evaluation methods may overlook.