Parental experience of hemophilia diagnosis disclosure in Morocco: a mixed-methods study on communication quality and psychosocial impact

Disclosure of a haemophilia diagnosis in paediatric settings is a critical moment that shapes parental understanding, emotional adjustment, and long-term engagement in care. In Morocco, where healthcare resources are constrained and cultural factors strongly influence family dynamics, little is known about how this diagnosis is communicated to parents. Exploring parental experiences is essential to improve family-centred care and disease management. A cross-sectional mixed-methods study was conducted at the Paediatric Hematology-Oncology Department of IBN SINA University Hospital, Rabat, in September and October 2024. Thirty-six parents of children with haemophilia A or B were enrolled after informed consent. Data were collected using a structured 34-item questionnaire assessing sociodemographic characteristics, diagnostic disclosure quality based on the SPIKES (Setting, Perception, Invitation, Knowledge, Empathy, Summary) protocol, emotional impact, satisfaction, and parental preferences. Quantitative and qualitative analyses were performed using Jamovi software. Diagnosis disclosure occurred in specialized centres in 66.7 % of cases and was associated with longer consultations (median 30 vs. 10 min, p = 0.011), higher parental 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. Higher parental education level was inversely associated with satisfaction, reflecting unmet expectations for detailed information and shared decision-making. Identified barriers included insufficient psychosocial support, unclear explanations, and linguistic discordance. Parents emphasized the importance of empathy, adequate consultation time, follow-up sessions, and gradual disclosure to the child. Significant disparities persist in haemophilia diagnosis disclosure in Morocco. Adapting the SPIKES protocol to the local context, strengthening psychosocial support, and enhancing intercultural communication training may improve parental experience and long-term engagement in care.