Psychological experiences of mothers of children with severe haemophilia in Iranian culture: A phenomenological study

Abstract Introduction Caregiving for children with haemophilia is a critical role that requires vigilance and significant lifestyle change, impacting on social activities, physical and psychological health and emotional experiences. Aim To explore the lived experience of mothers in Iran as caregivers of boys with severe haemophilia, focusing specifically on their psychological challenges. Methods This phenomenological study forms part of a larger study exploring psychological difficulties and social interactions of mothers of boys with haemophilia (BWH) in Iran. Semi-structured in-depth qualitative interviews were conducted with the biological mothers caring for one son with severe haemophilia A or B. Interview questions focused on challenges related to treatment, medication, prophylaxis and their interactions with HCPs, including the mothers’ feelings and coping mechanisms, and were adjusted to the Iranian cultural context. Participants were recruited from Mofid Comprehensive Care Centre for Children with Haemophilia (MCCCCH) in Tehran. Data analysis was based on van Manen’s six-step framework, using MAX.QDA software (2020), to identify themes. Findings were triangulated with findings from interviews with HCPs at MCCCCH about their perceptions of the challenges the mothers experience. Results Fifteen mothers of BWH were interviewed, most of whom had no or an unknown family history and no previous knowledge of haemophilia. Five themes and 27 subthemes of psychological experiences were identified. Themes included Daily emotional experiences; Challenge of acceptance; Defence mechanisms; Coping strategies (Emotion-focused and Problem-focused); and Positive expectations of the future. The most notable findings related to Daily emotional experiences and Defence mechanisms. Emotional reactions were diverse and included depression, fear and regret. Participants used a variety of defence mechanisms, including rumination and avoidance to try and overcome their situation. Conclusion If informed properly about medical issues and enabled to gain insight into their psychological responses, mothers of children with haemophilia in Iran may be able to better regulate emotional complexities and handle disappointment or unrealistic expectations, thereby enhancing their quality of life. There is a need for psychological services in haemophilia care in Iran that needs to be addressed in order to better support the wellbeing of patients and their families. This psychological supportive care should be informed by culturally appropriate guidelines and could be extended to similar communities in the Middle East.