Unravelling the knowledge, beliefs, behaviours and concerns of Persons with Haemophilia and their carriers in Senegal

Introduction In many sub‐Saharan countries, haemophilia exists in an environment of poor knowledge and poor access to treatment. To improve the quality of life of Persons with Haemophilia (PWH), understanding their unmet needs and the socio‐cultural realities is essential. Aim This study aims to explore disease knowledge, beliefs, behaviours and concerns of PWH and carriers as a way to find adapted solutions to address the unmet needs. Methods Based on an interview guide, we performed a qualitative study with in‐depth interviews of 26 PWH and 14 carriers. Results Eighty per cent of adult PWH were able to name the severity of haemophilia, but only 32% could describe with accuracy the mode of transmission of haemophilia. Only 23% of carriers were able to inform the severity of the disease. All carriers and adult PWH acknowledged at least one visit to a traditional healer. Acceptance of the disease through religion is the dominant coping strategy observed. High costs of treatment, fear of social rejection, difficulty of management of pain and bleeding at home were the main concerns. Conclusions Results demonstrate important gaps in knowledge, especially within the carrier population, mothers in Africa playing particularly an important role in the survival and empowerment of PWH. Findings also indicate the important weight of cultural determinants in disease management and behaviours of PWH and thus their important role in the development of educational materials taking into account these determinants.