Evaluation of support program extended to people with hemophilia: A multicentric mixed qualitative study

Hemophilia is an X-linked bleeding disorder, caused by an inherited deficiency of clotting factor VIII (hemophilia A) or factor IX (hemophilia B) which leads to spontaneous and posttraumatic bleeds. At present Indian hemophilia (Bleeding disorder) registry has close to 20,000 hemophilia patients all over the country, though we expect the number to swell near 85,000–1,00,000. People with hemophilia (PwH) and their families have diverse requirements and are best served by a multidisciplinary team of healthcare experts delivering coordinated, comprehensive care. Patient support programs are designed and implemented to provide personalized assistance and tailored interventions to improve patient health outcomes.

 The purpose of the study is to:

·       Exploring the lived experiences of a PwH

·       Assessing the impact of the hemophilia society in the day-to-day life of a PwH

·       To assess the positive impact made by the hemophilia society in a PwH

·       Exploring the nature of participation of stakeholders in the facilitation of the activities of the hemophilia society

 Methods: A multi method qualitative approach using in-depth interviews, focus group discussion and appreciative inquiry ,photo voice method(Photovoice is a qualitative, participatory, action-oriented data collection method whereby study participants use cameras to record their real-life experiences) will be conducted. The  interview will be audio recorded with prior consent from the participant.