The psychological burden of patients with beta thalassemia major in Syria

Abstract

Background: The objective of this study was to identify the psychosocial burden of thalassemia on children with beta-thalassemia major in Damascus, Syria.

Methods: The sample consisted of thalassemic patients aged 6-18 years old, admitted to the thalassemia center in Damascus, accompanied by their parents. The parents answered a structured questionnaire (developed by Ratip & Modell) on behalf of their children.

Results: The psychosocial burden affected many aspects of life such as education, time off school, sporting capabilities, difference from friends/siblings, social interactions, family adjustment, anxiety, isolation, and stigmatization. Results indicated a significant association between socio-demographic characteristics such as age, gender, school grade, current schooling, work, family income, and the occurrence of complications with the psychosocial burden variables including education, time off school, sporting capabilities, difference from friends, social interactions and stigmatization.

Conclusions: The findings suggest the need for psychological support as well as medical help for thalassemic families. Health professionals need to assess the psychological status of children with thalassemia and that of their families in order to minimize these burdens; thus, nurses must provide psychosocial support for children with thalassemia and encourage other family members to assist in providing support for the affected children.

Implication: The current study triggered the need for new policies and new roles for the community health nurse and social workers as well as the need for counseling and educational programs for children with thalassemia.