A qualitative study on the experiences of mothers caring for their children with thalassemia in Athens, Greece.
This qualitative study investigated the caregiving experiences of mothers of children with thalassemia. Using a semistructured questionnaire, the researchers interviewed a convenient sample of 19 mothers who have children with thalassemia. A considerable failure to provide information regarding carrier testing prior to marriage or genetic screening for thalassemia during early pregnancy at the time of the participants' pregnancies was noted. Emotional distress, fear of death, and difficulties in dealing with feelings were some of the mothers' concerns. Although they reported that support was provided, approximately half of the subjects wished that support be offered on a more regular basis. Furthermore, most of the mothers stressed that, owing to the tremendous shortage of nursing staff, support services provided by nurses are difficult to obtain.