AIM: In order to master the difficulties due to sickle cell disease, this work aimed at assessing the effects on the families of the presence of a child with sickle cell disease in Togo. POPULATION AND METHODS: From April 1 to November 31, 1998, 103 families with one or many sickle cell patients followed up in the Sickle Cell Care Unit of the pediatric department of the Lome Teaching Hospital were surveyed. Main care takers of patients with sickle cell disease, especially mothers (90.3% of cases), were surveyed. RESULTS: Many parents were disturbed; the most common troubles were: compassion (pity) toward the child, 92.2%; insomnia, 82.5%; frustration, 76.7%; and fear of the death of the child, 73.5%. Less educated parents and those who lived alone (single parents, widows, separated) were more affected. Sickle cell disease caused the separation of seven couples out of 26 (26.9%), while in 11 couples of the 63 who still live together, relationships had deteriorated (17.5%). Most of the parents (83.3%) exaggerated the protection of their child and 65% mentioned financial problems. CONCLUSION: There is no doubt about the unfortunate effects of the presence of children with sickle cell disease in a family in Lome. Many joint actions should be taken toward the sick children and their families in order to reduce their sufferings.
AIM: In order to master the difficulties due to sickle cell disease, this work aimed at assessing the effects on the families of the presence of a child with sickle cell disease in Togo. POPULATION AND METHODS: From April 1 to November 31, 1998, 103 families with one or many sickle cell patients followed up in the Sickle Cell Care Unit of the pediatric department of the Lome Teaching Hospital were surveyed. Main care takers of patients with sickle cell disease, especially mothers (90.3% of cases), were surveyed. RESULTS: Many parents were disturbed; the most common troubles were: compassion (pity) toward the child, 92.2%; insomnia, 82.5%; frustration, 76.7%; and fear of the death of the child, 73.5%. Less educated parents and those who lived alone (single parents, widows, separated) were more affected. Sickle cell disease caused the separation of seven couples out of 26 (26.9%), while in 11 couples of the 63 who still live together, relationships had deteriorated (17.5%). Most of the parents (83.3%) exaggerated the protection of their child and 65% mentioned financial problems. CONCLUSION: There is no doubt about the unfortunate effects of the presence of children with sickle cell disease in a family in Lome. Many joint actions should be taken toward the sick children and their families in order to reduce their sufferings.
Authors: Xu Zhang; Kiarri N Kershaw; Caterina P Minniti; Andrew Campbell; Sohail R Rana; Deepika S Darbari; Lori Luchtman-Jones; Craig Sable; Niti Dham; Gregory Ensing; Manuel Arteta; James G Taylor; Lewis L Hsu; Sergei Nekhai; Victor R Gordeuk Journal: Blood Adv Date: 2020-07-28