Psychosocial Issues in Children With Thalassemia: From Identification to a Model for Management in a Developing Country

• Published in: Journal of pediatric hematology/oncology Vol. 41; no. 3; p. 218
• Main Authors: Raman, Vijaya, Prakash, Anand, D'Souza, Fulton
• Format: Journal Article
• Language: English
• Published: United States 01.04.2019
• Subjects: beta-Thalassemia - psychology; Case-Control Studies; Child; Child Behavior Disorders - diagnosis; Child Behavior Disorders - therapy; Counseling; Developing Countries; Disease Management; Female; Humans; Male; Mass Screening; Surveys and Questionnaires
• ISSN: 1536-3678
• DOI: 10.1097/MPH.0000000000001370

Children with chronic disorders like β thalassemia major (TM) and their care givers are known to face various psychosocial problems. This study used screening tests to detect these psychosocial issues so that prompt referral for counseling is possible. A semistructured demographic questionnaire, Pediatric Symptom Checklist (PSC-17) and the Strengths and Difficulties Questionnaire (SDQ) were administered to 30 children with TM, on regular treatment at a tertiary care hospital. The same questionnaires were administered to age-matched and sex-matched controls. Parents were administered the General Health Questionnaire (GHQ). Children with TM scored higher on both PSC-17 (9.93 vs. 4.87; P<0.001) and SDQ (14.9 vs. 10.9; P=0.008). The parents of children with TM scored higher on the GHQ (10.3 vs. 8.0; P=0.027). Psychosocial morbidity was higher in children with TM and their care-givers. Screening tools help detect children and care givers in need of formal counseling. The study makes a case for management of these issues by the pediatrician in tandem with mental health professionals. Some strategies that can be used in managing these children and their families are presented. In addition, issues in management with particular focus on a developing country context are highlighted and discussed.