Abstract
This study explores the psychosocial problems experienced by families with children aged 6 to 14 years suffering from β-thalassemia major (N=188). The psychosocial problems and the family's adjustment to the effects of the illness were compared across a number of cultures where the disease is prevalent, namely Cyprus, Greece, and Italy. A small number of migrant children.in the United Kingdom was also included in the study. Semi-structured interviews were conducted with parents who also completed the Rutter Parental Questionnaire and the Goldberg General Health Questionnaire. Teachers were asked to complete a Children's Behaviour Questionnaire designed by Rutter. In all countries the disease seemed to have a binding effect on the family, thus mobilizing adaptive mechanisms. Father's low education level and the presence of major medical complications were predictors of poor family adjustment. Differences between and within countries may well reflect differences in health policies, existing level of socio-economic development, and in the cultural patterns in coping with a chronic illness.
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References
Angastiniotis M, Kyriakidou S, Hadjiminas M (1986) How thalassemia was controlled in Cyprus. World Health Forum 7:291–296
Anastasopoulos D, Tsiantis J (1991) A description of mental and psychosocial disorders displayed by HIV positive haemophiliac or thalassaemic children and their families. WHO Regional Office for Europe (unpublished document Eur./ICP/ 6.RA042b). Quoted in Gobal Programme on AIDS, Mental Health Division
Anionwu E, Beattie A (1981) Learning to cope with sickle cell disease — a parent's experience. Nursing Times 7:1214–1219
Burlew AK, Evans R, Oler C (1989) The impact of a child with sickle cell disease on family dynamics. Annals of the New York Academy of Sciences 565:161–171
Eiser C (1985) The Psychology of Childhood Illness. Springer-Verlag, New York
Eiser C (1990) Psychological effects of chronic disease. Journal of Child Psychology and Psychiatry 31:85–98
Evatt BL, Ramsey RB (1988) AIDS in the haemophiliac child: the need for a multidisciplinary approach to prevention of AIDS in children, adolescents and heterosexual adults. In: Schirari RF, Nahmian AJ (eds) An Interdisciplinary Approach to Prevention (pp. 245- 251) Elsevier, New York
Gabutti V (1990) Current therapy for thalassemia in Italy. Annals of the New York Academy of Sciences 612:268–274
Georganda E (1988) Thalassemia and the adolescent: An investigation of chronic illness, individuals and systems. Family Systems Medicine 6:150–161
Georganda E (1990) The impact of thalassemia on body image; self-image and self-esteem. Annals of the New York Academy of Sciences 612:466–472
Giardina PJ, Grady RW Ehlers KH, Burstein S, Graziano JH, Markenson AL, Hilgartner MW (1990) Current ther apy of Cooley's anemia: A decade of experience with subcutaneous desferrioxamine. Annals of the New York Academy of Sciences 612:275–285
Goldberg D (1978) Manual of the General Health Questionnaire. NFER-Nelson Publishing Company, London
Goldberg D, Williams P (1988) A scaled version of the General Health Questionnaire. Psychological Medicine 9:139–145
Ierodiakonou C, Sklavounou-Tsourotsoglou S, Katriou-Nikolaki D, Nanas C, Athanasiadou-Piperopoulou F (1976) Psychological and medico-social problems of children with Cooley's disease and their families. Proceedings of the 2nd Panhellenic Congress 702 (in Greek)
Jensen PS, Traylor J, Xenaki SN, Davis H (1988) Child psychopathology rating scales and interrater agreement. Parents' gender and psychiatric symptoms. Journal of the American Academy of Child and Adolescent Psychiatry 27:449–450
Lefrere JJ, Girot R (1989) Risk of HIV infection in polytransfused thalasseamia patients. Lancet 2:813
Logothetis J, Haritos-Fatouros M, Constantoulakis K, Economidou J, Augoustaki O, Loewenson R (1971) Intelligence and behavioral patterns in patients with Cooley's anemia (homozygous beta-thalassemia). Pediatrics 48:740–744
Lucarelli G, Galimberf M, Polchi P, Angelucci E, Baronciani D, Giardini C, Politi P, Durazzi SM, Muretto P, Albertini F (1990) Bone marrow transplantation in patients with thalassemia. New England Journal of Medicine 322:417–421
Madianos M (1989) Society and Mental Health. Kastaniotis, Athens (in Greek)
Massaglia P, Carpignano M (1987) Psychology of the thalassemic patient and his family. In: Sirchia G, Zanella A (eds). Thalassemia Today: The MediterraneanExperience(pp. 69–79). C.T.O.M.P, Milano
Motti-Stefanidi F, Tsiamis J, Richardson SC (1993) Epidemiology of behavioural and emotional problems of primary schoolchildren in Greece. European Child and Adolescent Psychiatry 2:111–118
Nelson L, Album M (1987) AIDS: Children with the infections and their families. Journal of Dentistry for Children, Sept–Oct, 353–358
Orvaschel H, Weissman MM, Padian N, Lowe TL (1981) Assessing psychopathology in children of psychiatrically disturbed parents: A pilot study. Journal of the American Academy of Child Psychiatry 20:112–122
Rutter M (1967) A children's behaviour questionnaire for completion by teachers: Preliminary findings. Journal of Child Psychology and Psychiatry 8:1–11
Rutter M, Cox A, Tupling C, Berger M, Yule W (1975) Attainment and adjustment in two geographical areas. I The prevalence of psychiatric disorder. British Journal of Psychiatry 126:493–509
Rutter M, Tizard J, Whitmore K (1981) Education, Health and Behavior. Krieger, Huntington, New York
Sabbeth B, Leventhal J (1984) Marital adjustment to chronic childhood illness: A critique of the literature. Pediatrics 73:762–768
Sherman M, Koch D, Giardina P, Hymowitz P, Siegel R, Shapiro T (1985) Thalassaemic children's understanding of illness: a study of cognitive and emotional factors. Annals of the New York Academy of Sciences 445:327–336
Spinetta J (1981) Adjustment and adaptation in children with cancer. In: Living with Childhood Cancer. Spinetta J, Deasy-Spinetta P (eds) C. V Mosby, St. Louis
Tsiantis J (1986) Psychological support for thalasemics. Paper presented at the 1st International Conference on Thalassemic Parents and Thalassernics, 20–29 November, Nicosia, Cyprus
Tsiantis J (1990) Family reactions and relationships in thalassemia. Annals of the New York Academy of Sciences 612:451–461
Tsiantis J, Xypolita-Tsantili D, Papadakou-Lagoyanni S (1982) Family reactions and their management in a parents group with beta-thalassemia. Archives of Disease in Childhood 57:860–863
Tsiantis J, Anastasopoulos D, Meyer M, Panitz D, Ladis V, Platokouki N, Aroni S, Kattamis C (1990) A multi-level in tervention approach for the care of the HIV positive haemophiliac and thalassaemic patients and their families. AIDS Care 2:253–266
Weissman MM, Leckman JF, Merikangas KA, Gammon GD, Prussoff BA (1984) Depression and anxiety disorders in parents and children. Results from the Yale family study. Archives of General Psychiatry 41:845–852
35.WHO (1989) The psychosocial aspects of patients and their families with β-Thalasaemia and sickle-cell disease: Summary report. 2nd WHO Sponsored meeting. Division of Maternal and Child Health, Milan
Whitten CF, Nishiur EW (1985) Sicklecell anaemia. In: Issues in Care of Children with Chronic Illness. Hobbs N, Perrin JM (eds) Jossey-Bass, San Francisco
Woo R, Giardina PJ, Hilgartner MW (1985) A psychosical needs assessment of patients with homozygous beta-thalassemia. Annals of the New York Academy of Sciences 445:316–323
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Tsiantis, J., Dragonas, T., Richardson, C. et al. Psychosocial problems and adjustment of children with β-thalassemia and their families. European Child & Adolescent Psychiatry 5, 193–203 (1996). https://doi.org/10.1007/BF00538846
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DOI: https://doi.org/10.1007/BF00538846