title: Pilot study on parental stress and behavioral adjustment to the thalassemia major disease process in children undergoing iron-chelation in western Taiwan.
abstract: Thalassemia was first described by Cooley and Lee in 1952 in several Italian children as a severe anemia with spleen and liver enlargement, skin discoloration, and bony changes. Great strides in management and intervention have not been matched by progress in psychosocial rehabilitation. Because parental stress and adaptation are of concern, this study focuses on parental stress and adjustment in response to the disease process of their afflicted children in western Taiwan. The parents of 18 thalassemia major patients (under 12 years of age) were interviewed (in two sessions) to determine their feelings, sources of stress, and support during their childrens' disease process. The study found that: 1) many parents suffer from stress as a result of the disease process, 2) all parents had similar concerns about iron chelation treatment, and 3) some resilience factors were present in the support system.
authors.affiliation: Department of Development and Behavior Pediatrics, China Medical University Hospital, Taichung, Taiwan.
authors.forename: Huang-Tsung
authors.initials: HT
authors.lastname: Kuo
authors.forename: Ching-Tien
authors.initials: CT
authors.lastname: Peng
authors.forename: Ming-Yu
authors.initials: MY
authors.lastname: Tsai
mesh_terms: D000223:Adaptation, Psychological; D000284:Administration, Oral; D000293:Adolescent; D000328:Adult; D001294:Attitude to Health; D015913:Chelation Therapy / Q000379:methods / Q000523:psychology*; D002648:Child; D003131:Combined Modality Therapy; D000077543:Deferiprone; D003676:Deferoxamine / Q000008:administration & dosage / Q000627:therapeutic use*; D005260:Female; D006801:Humans; D007262:Infusions, Intravenous / Q000523:psychology; D007502:Iron Chelating Agents / Q000627:therapeutic use*; D019190:Iron Overload / Q000188:drug therapy / Q000209:etiology; D008297:Male; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D010342:Patient Acceptance of Health Care; D010361:Patients / Q000523:psychology; D010865:Pilot Projects; D011728:Pyridones / Q000008:administration & dosage / Q000627:therapeutic use*; D011788:Quality of Life; D012959:Socioeconomic Factors; D013315:Stress, Psychological / Q000209:etiology* / Q000523:psychology; D013624:Taiwan; D065227:Transfusion Reaction; D017086:beta-Thalassemia / Q000188:drug therapy / Q000523:psychology*
chemical_list: D007502:Iron Chelating Agents; D011728:Pyridones; D000077543:Deferiprone; D003676:Deferoxamine