Experience of Couples During Vaso-Occlusive Crises in Children with Sickle Cell Disease : A Study Conducted at the Mabanga Center for Mixed Medicine and SS Anemia

Abstract

Introduction : Sickle cell disease is a prominent genetic condition in sub-Saharan Africa,
causing recurrent vaso-occlusive crises that create serious medical, psychological, and social
burdens for affected families. In the Democratic Republic of Congo, care resources
are scarce, threatening family stability and quality of life.
Method : A descriptive, phenomenological qualitative study was conducted at the Mixed
Medicine and SS Anemia Center (CMMASS) in Mabanga, Kinshasa. Twenty-four parents
of children with sickle cell disease were purposively selected and interviewed using semistructured
individual interviews. Thematic manual analysis was used to categorize their
experiences during their children’s crises.
Results : Vaso-occlusive crises led to significant stress, financial hardship, and a negative
impact on marital stability. Parents reported emotional distress, anxiety about their
child’s future, and a sense of guilt regarding the origins of the condition. Cultural beliefs,
religious faith, and medical understanding shaped their perception of the disease. Many
described increased marital conflict, mutual distrust, and even separation. However, a
minority of families strengthened their unity and communication in the face of adversity.
Discussion : This study underscores the essential need for multi-faceted support for families
coping with sickle cell disease. Incorporating psychological and social support into
medical care is crucial. Recommendations include enhanced governmental involvement,
genetic counseling, and broader awareness campaigns to break the cycle of stigma and
better support couples as they navigate the challenges of this chronic illness.