Abstract
The current study aims to compare positive and negative measures of psychosocial functioning among children with sickle cell disease (SCD) and their healthy siblings. Participants were 41 African-American children with SCD, 97 healthy siblings, and their primary caregivers. Primary caregivers completed self-report questionnaires assessing child behavioral problems, while children with SCD and siblings completed self-report questionnaires assessing coping, self-efficacy, and perceived social support. No significant differences were noted between children with SCD and their siblings on all measures. Both groups reported self-efficacy and perceived social support within the normative range, and endorsed significantly greater use of Positive/Approach coping. In general, both groups of children do not have clinically significant behavioral problems. However, secondary exploratory analyses identified that a greater percentage of children from both groups scored above the established clinical cutoff on the behavioral summary scores. Number of visits to the emergency room was related to behavioral problems in children with SCD. While previous reports have been mixed in their findings that children with SCD are at greater risk for psychosocial and other behavioral problems, the current report finds that children with SCD and their healthy siblings endorse positive psychosocial functioning and as a group do not have clinically significant behavioral problems. Nonetheless, ongoing psychosocial evaluation for children receiving treatment for SCD is vital.
Similar content being viewed by others
References
Achenbach, T. M. (1991). IIntegrative guide for the 1991 CBCL/4-18. YSR & TRF profiles. Burlington, VT: Department of Psychiatry, University of Vermont.
Achenbach, T. M., & Edelbrock, C. (1983). Manual for the child behavior checklist and revised child behavior profile. Burlington, VT: University Associates in Psychiatry.
Alderfer, M. A., Fiese, B., Gold, J. I., Cutuli, J. J., Holmbeck, G., Goldbeck, L., et al. (2007). Evidence-based assessment in pediatric psychology: Family measures. Journal of Pediatric Psychology, 1–16. doi:10.1093/jpepsy/jsm083.
Anie, K. A. (2005). Psychological complications in sickle cell disease. British Journal of Haematology, 129, 723–729. doi:10.1111/j.1365-2141.2005.05500.x.
Barakat, L. P., Patterson, C. A., Weinberger, B. S., Simon, K., Gonzalez, E. R., & Dampier, C. (2007). A prospective study of the role of coping and family functioning in health outcomes for adolescents with sickle cell disease. Journal of Pediatric Hematology/Oncology: Official Journal of the American Society of Pediatric Hematology/Oncology, 29(11), 752–760.
Barlow, J. H., & Ellard, D. R. (2006). The psychosocial well-being of children with chronic disease, their parents and siblings: An overview of the research evidence base. Child: Care, Health and Development, 32, 19–31. doi:10.1111/j.1365-2214.2006.00591.x.
Brown, R. T., Kaslow, N. J., Doepke, K., Buchanan, I., Eckman, J., Baldwin, K., et al. (1993). Psychosocial and family functioning in children with sickle cell syndrome and their mothers. Journal of the American Academy of Child and Adolescent Psychiatry, 32, 545–553.
Charache, S., & Davies, S. (1991). Teaching both the management and the molecular biology of sickle cell disease. Academic Medicine, 66, 748–749. doi:10.1097/00001888-199112000-00009.
Consensus conference. (1987). Newborn screening for sickle cell disease and other hemoglobinopathies. Journal of the American Medical Association, 258, 1205–1209. doi:10.1001/jama.258.9.1205.
Gil, K. M., Williams, D. A., Thompson, R. J., Jr., & Kinney, T. R. (1991). Sickle cell disease in children and adolescents: The relation of child and parent pain coping strategies to adjustment. Journal of Pediatric Psychology, 16, 643–663. doi:10.1093/jpepsy/16.5.643.
Gold, J. I., Treadwell, M., Weissman, L., & Vichinsky, E. (2008). An expanded transactional stress and coping model for siblings of children with sickle cell disease: Family functioning and sibling coping, self-efficacy, and perceived social support. Child: Care, Health and Development, 25, 409–421.
Gross, D., Fogg, L., Young, M., Ridge, A., Cowell, J. M., Richardson, R., et al. (2006). The equivalence of the child behavior checklist/1 1/2–5 across parent race/ethnicity, income level, and language. Psychological Assessment, 18, 313–323. doi:10.1037/1040-3590.18.3.313.
Harter, S. (1985). Manual for the social support scale for children. Denver, CO: University of Denver.
Hollingshead, A. B. (1975). Four factor index of social status. Unpublished manuscript. New Haven, CT: Yale University.
Kaminsky, L., Robertson, M., & Dewey, D. (2006). Psychological correlates of depression in children with recurrent abdominal pain. Journal of Pediatric Psychology, 31, 956–966. doi:10.1093/jpepsy/jsj103.
Koocher, G., & O’Malley, J. (1981). The Damocles syndrome: Psychological consequences of surviving childhood cancer. New York: McGraw Hill.
Midence, K., McManus, C., Fuggle, P., & Davies, S. (1996). Psychological adjustment and family functioning in a group of British children with sickle cell disease: Preliminary empirical findings and a meta-analysis. The British Journal of Clinical Psychology, 35, 439–450.
Nettles, A. L. (1994). Scholastic performance of children with sickle cell disease. Journal of Health & Social Policy, 5, 123–140. doi:10.1300/J045v05n03_08.
Palermo, T. M., Schwartz, L., Drotar, D., & McGowan, K. (2002). Parental report of health-related quality of life in children with sickle cell disease. Journal of Behavioral Medicine, 25, 269–283. doi:10.1023/A:1015332828213.
Perrin, E. C., Stein, R. E., & Drotar, D. (1991). Cautions in using the child behavior checklist: Observations based on research about children with a chronic illness. Journal of Pediatric Psychology, 16, 411–421. doi:10.1093/jpepsy/16.4.411.
Platt, O. S., Thorington, B. D., Brambilla, D. J., Milner, P. F., Rosse, W. F., Vichinsky, E., et al. (1991). Pain in sickle cell disease: Rates and risk factors. The New England Journal of Medicine, 325, 11–16.
Raadal, M., Milgrom, P., Cauce, A., & Mancl, L. (1994). Behacioral problems in 5- to 11-year-old children from low-income families. Journal of the American Academy of Child and Adolescent Psychiatry, 33, 1017–1025. doi:10.1097/00004583-199409000-00013.
Richard, H. W., & Burlew, A. K. (1997). Academic performance among children with sickle cell disease: Setting minimum standards for comparison groups. Psychological Reports, 81, 27–34.
Sahler, O. J., & Carpenter, P. J. (1989). Evaluation of a camp program for siblings of children with cancer. American Journal of Diseases of Children, 143, 690–696.
Sanberg, D., Mayer-Bahlburg, H., & Yager, T. (1991). The child behavior checklist nonclinical standardization samples: Should they be utilized as norms? Journal of the American Academy of Child and Adolescent Psychiatry, 30, 124–134.
Sickle Cell Disease Guideline Panel. (1993). Sickle cell disease: Comprehensive screening and management in newborns and infants—quick reference guide for clinicians (Vol. 6, AHCPR Publication No. 93–0563). Rockville, MD: Agency for Health Care Policy and Research, Public Health Service, Department of Health and Human Services.
Spirito, A., Stark, L. J., & Tyc, V. L. (1994). Stressors and coping strategies described during hospitalization of chronically ill children. Journal of Clinical Psychology, 23, 314–322.
Spirito, A., Stark, L. J., & Williams, C. (1988). Development of a brief coping checklist for use with pediatric populations. Journal of Pediatric Psychology, 13, 555–574. doi:10.1093/jpepsy/13.4.555.
Thompson, R. J., Gil, K. M., Burbach, D. J., Keith, B. R., & Kinney, T. R. (1993). Psychological adjustment of mothers of children and adolescents with sickle cell disease: The role of stress, coping methods, and family functioning. Journal of Pediatric Psychology, 18, 549–559. doi:10.1093/jpepsy/18.5.549.
Thompson, R. J., Gil, K. M., Keith, B. R., Gustafson, K. E., George, L. K., & Kinney, T. R. (1994). Psychological adjustment of children with sickle cell disease: Stability and change over a 10-month period. Journal of Consulting and Clinical Psychology, 62, 856–866. doi:10.1037/0022-006X.62.4.856.
Thomsen, A. H., Compas, B. E., Colletti, R. B., Stanger, C., Boyer, M. C., & Konik, B. S. (2002). Parent reports of coping and stress responses in children with recurrent abdominal pain. Journal of Pediatric Psychology, 27(3), 215–226. doi:10.1093/jpepsy/27.3.215.
Treadwell, M. J., & Weissman, L. (2001). Improving adherence with deferoxamine regimens for patients receiving chronic transfusion therapy. Seminars in Hematology, 38, 77–84. doi:10.1016/S0037-1963(01)90064-2.
Tritt, S. G., & Esses, L. M. (1988). Psychosocial adaptation of siblings of children with chronic medical illnesses. The American Journal of Orthopsychiatry, 58, 211–220.
Trzepacz, A. M., Vannatta, K., Gerhardt, G., Ramey, C., & Noll, R. B. (2004). Emotional, social, and behavioral functioning of children with sickle cell disease and comparison peers. Journal of Pediatric Hematology/Oncology, 26, 642–648. doi:10.1097/01.mph.0000139456.12036.8d.
Wheeler, V. A., & Ladd, G. W. (1982). Assessment of children’s self-efficacy for social interactions with peers. Developmental Psychology, 18, 795–805. doi:10.1037/0012-1649.18.6.795.
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Gold, J.I., Mahrer, N.E., Treadwell, M. et al. Psychosocial and behavioral outcomes in children with sickle cell disease and their healthy siblings. J Behav Med 31, 506–516 (2008). https://doi.org/10.1007/s10865-008-9175-2
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10865-008-9175-2