Psychosocial problems of Pakistani parents of Thalassemic children: a cross sectional study done in Bahawalpur, Pakistan

BACKGROUND Thalassemia is a blood disorder passed down through families (inherited) in which the body makes an abnormal form of hemoglobin. This disorder results in excessive destruction of red blood cells, and there is no effective treatment. Patients require lifelong blood transfusion, usually started within 6 to 12 months of birth of patient, which on other hand has its own complications. It is a chronic disease that manifests so early in life that it leads to psychological and social problems for parents . We focused on parents to assess the impact of their child's disease. OBJECTIVE To determine the psychosocial problems of parents of thalassemic children. METHODS This cross sectional study was conducted among the parents of thalassemic children attending THALASSEMIA CENTRE, BAHAVAL VICTORIA HOSPITAL (BVH), BAHAWALPUR, PAKISTAN during the year 2011. A self designed questionnaire was used that contained questions regarding psychological and social aspects. Patient Health Questionnaire-9 (PHQ-9) was used to assess the depression of parents of thalassemic children. RESULTS Of the 100 parents interviewed, the majority were mothers (71%) , with a mean age of 32 ± 8.07 years for both sexes. 29 percent of the parents had moderate to severe depression, 16 percent had sleep disturbances. 56 percent were downgraded by relatives. There was a significant relationship between respondent education and depression (p < 0.05). CONCLUSION A substantial number of parents have psychosocial problems due to the disease of their child. Parent counseling is needed on regular basis.