Reply to: Commentary on Parental experience of haemophilia diagnosis disclosure in Morocco: A mixed-methods study on communication quality and psychosocial impact

Abstract

The disclosure of a haemophilia diagnosis in paediatric settings represents a pivotal moment, encompassing emotional, relational, and organisational challenges that profoundly influence the care trajectory, treatment adherence, and quality of life of affected families. In Morocco—where healthcare resources are limited and cultural dynamics strongly shape family interactions—little is known about how such diagnoses are communicated to parents. Understanding these experiences is crucial for developing family-centred care strategies and improving long-term disease management. This mixed-methods cross-sectional study was conducted at the Paediatric Haematology-Oncology Department of IBN SINA University Hospital, Rabat, between September and October 2024. Thirty-six parents of children with haemophilia A or B were included after providing informed consent. Data were collected using a structured 34-item questionnaire covering sociodemographic characteristics, quality of diagnostic disclosure based on the SPIKES protocol, emotional impact, satisfaction, and parental preferences. Both quantitative and qualitative analyses were performed, using Jamovi software to evaluate associations between socioeconomic, educational, and clinical factors. Disclosure occurred in specialised centres in 66.7% of cases, associated with longer consultations (median 30 vs. 10 minutes, p = 0.011), higher satisfaction (83.3% vs. 16.7%, p < 0.001), and greater perceived empathy (79.2% vs. 16.7%, p < 0.001). Anxiety or depressive symptoms were reported by 83.3% of parents following disclosure. Satisfaction inversely correlated with parental education level; university-educated parents reported lower satisfaction, reflecting unmet expectations for detailed information and active participation in decision-making. Key barriers included insufficient psychosocial support, unclear explanations, and linguistic mismatch. Most parents preferred gradual disclosure to the child and emphasised the importance of empathy, adequate consultation time, and follow-up sessions. Recommendations included structured disclosure across multiple sessions, culturally adapted communication using visual and simple materials, involvement of psychosocial professionals, and improved accessibility for families from remote areas. Substantial disparities exist in the quality of haemophilia diagnosis disclosure in Morocco. Contextualised adaptation of the SPIKES protocol, combined with enhanced psychosocial support and intercultural communication training for healthcare providers, may improve parental understanding, emotional adjustment, and long-term engagement in care. These findings provide essential evidence for developing national policies to promote equitable, human-centred paediatric care.