Abstract
One in every 400–500 African American babies carries a diagnosis of sickle cell disease (SCD). SCD, a congenital, hereditary hematologic disorder places youth at risk for developing potentially serious and life threatening disease related medical problems. Many SCD youth manifest neurocognitive impairments and learning problems, externalizing and internalizing behavior problems, difficulties in interpersonal relationships, low self-esteem, and problematic disease coping. Compared to control families, families with an SCD child have more conflict and lower levels of family organization. In contrast to the burgeoning research on medical advances, few researchers have examined the psychological sequelae of SCD or effective psychosocial interventions. With America's changing health care climate, the need for psychologists to work with medically ill individuals in primary care settings is increasing. In response to this need and to the 1995 American Psychological Association's guidelines for treatment efficacy studies, a manualized family-oriented treatment program for pediatric SCD patients was developed. This paper discusses the strengths and challenges associated with implementing a culturally and developmentally sensitive manual-based family intervention for a low SES African American chronically ill population. Possible solutions to the challenges of conducting family-oriented intervention efficacy studies with pediatric populations are presented.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
REFERENCES
Alexander, J. F., Holtzworth-Munroe, A., and Jameson, P. B. (1994). The process and outcome of marital and family therapy: Research review and evaluation. In A. Bergin and S. L. Garfield (Eds.), Handbook of Psychotherapy and Behavior Change (fourth edition), Wiley, New York, pp. 595–630.
Bagley, S. P., Angel, R., Dilworth-Anderson, P., Liu, W., and Schinke, S. (1995). Panel V.: Adaptive health behaviors among ethnic minorities. Health Psychol. 14: 632–640.
Barbarin, O. A., Whitten, C. F., and Bonds, S. M. (1994). Estimating rates of psychosocial problems in urban and poor children with sickle cell anemia. Health Social Work 19: 112–119.
Bergin, A., and Garfield, S. (1994). Handbook of Psychotherapy and Behavior Change, Wiley, New York.
Beutler, L. E., and Clarkin, J. F. (1990). Systematic Treatment Selection: Toward Targeted Interventions, Brunner/Mazel, New York.
Boyd-Franklin, N. (1989). Black Families in Therapy: A Multisystems Approach. Guilford Press, New York.
Brown, R. T., Doepke, K. J., and Kaslow, N. J. (1993). Risk-resistance-adaptation model for pediatric chronic illness: Sickle cell syndrome as an example. Clin. Psychol. Rev. 13: 119–132.
Burlew, A. K., Evans, R., and Oler, C. (1989). The impact of a child with sickle cell disease on family dynamics. Ann. New York Acad. Sci. 565: 161–171.
Campbell, T. L., and Patterson, J. M. (1995). The effectiveness of family interventions in the treatment of physical illness. J. Marit. Fam. Ther. 21: 545–583.
Chambless, D., Sanderson, W., Shoham, V., Johnson, S., Pope, K., Crits-Cristoph, P., Baker, M., Johnson, B., Woody, S., Sue, S., Beutler, L., Williams, D., and McCurry, S., (1996). An update on empirically-validated therapies. Clin. Psychologist 49: 5–18.
Consensus Conference (1987). Newborn screening for sickle cell disease and other hemoglobinopathies. J. Am. Med. Assoc. 258: 1205–1209.
Diamond, G. S., Serrano, A. C., Dickey, M., and Sonis, W. A. (1996). Current status of family-based outcome and process research. J. Am. Acad. Child Adol. Psychiatry 35: 6–16.
Dilworth-Anderson, P. (1994). The importance of grandparents in extended-kin caregiving to Black children with sickle cell disease. J. Health Social Pol. 5: 185–202.
Farber, M. D., Koshy, M., and Kinney, T. R., and the Cooperative Study of Sickle Cell Disease (1985). Cooperative study of sickle cell disease: Demographic and socioeconomic characteristics of patients and families with sickle cell disease. J. Chron. Dis. 38: 495–505.
Fischhoff, J., and Jenkins, D. S. (1987). Sickle cell anemia. In Noshpitz, J. D. (ed.), Basic Hand. Child Psychiatry Basic Books, New York, pp. 97–102.
Gaston, L., and Gagnon, R. (1996). The role of process research in manual development. Clin. Psychol. Sci. Pract. 3: 13–24.
Hurtig, A. L. (1994). Relationships in families of children and adolescents with sickle cell disease. In Nash, K. (ed.), Psychosocial Aspects of Sickle Cell Disease, Haworth Press, New York, pp. 161–183.
Kaslow, N. J., Collins, M. H., Loundy, M. R., Brown, F., Hollins, L. D., and Eckman, J. (1997). Empirically-validated family interventions for pediatric psychology: Sickle cell disease as an exemplar [Special issue]. J. Pediatr. Psychol. 22: 213–227.
Kaslow, N. J., and Brown, F. (1995). Culturally sensitive family interventions for chronically ill youth: Sickle cell disease as an example. Fam. Syst. Med. 13: 201–213.
Kazak, A. E., and Nachman, G. S. (1991). Family research on childhood chronic illness: Pediatric oncology as an example. J. Fam. Psychol. 4: 462–483.
Kazak, A., E., Segal-Andrews, A. M., and Johnson, K. (1995). Pediatric psychology research and practice: A family/systems approach. In Roberts, M. C. (ed.), Handbook of Pediatric Psychology (second edition) Guilford Press, New York, pp. 84–104.
LaGreca, A. N., and Varni, J. W. (1993). Interventions in pediatric psychology [Special issue].J. Pediatr. Psychol. 18(6).
Lemanek, K. L., Buckloh, L. M., Woods, G., and Butler, R. (1995). Diseases of the circulatory system: Sickle cell disease and hemophilia. In Roberts, M. (ed.), Handbook of Pediatric Psychology, Guilford Press, New York, pp. 286–309.
Levant, R. F. (1996). Outcomes measurement and empirically validated treatments: What's all the fuss about. Psychotherapy Bull. 30: 20–22.
Luborsky, L., and DeRubeis, R. (1984). The use of psychotherapy treatment manuals: A small revolution in psychotherapy research style. Clin. Psychol. Rev. 4: 5–14.
McAdoo, H. P. (ed.) (1988). Black Families (second edition). Sage, Newbury Park, CA.
McDaniel, S. H., Hepworth, J., and Doherty, W. J. (1992). Medical Family Therapy: A Biopsychosocial Approach to Families with Health Problems, Basic Books, New York.
Midence, K., Davis, S. C., and Fuggle, P. (1992). Sickle cell disease: Courage in the face of crisis. Nurs. Times 88: 46–48.
Midence, K., and Shand, P. (1992). Family and social issues in sickle cell disease. Health Visit. 65: 441–443.
Moras, K. (1993). The use of treatment manuals to train psychotherapists: Observations and recommendations. Psychotherapy 30: 581–586.
Nevergold, B. S. (1987). Therapy with families of children with sickle cell disease, Fam. Ther. Collect. 22: 67–79.
Parham, T. A., and Helms, J. E. (1981). The influence of Black students' racial identity attitudes on preferences for counselor's race. J. Counsel. Psychol. 28: 250–257.
Ramsey, C. N., Jr. (ed.) (1989). Family Systems in Medicine, Guilford Press, New York.
Roberts, M. C. (1993a). Introduction to pediatric psychology: An historical perspective. In Roberts, M. C., Koocher, G. P., Routh, D. K., and Willis, D. (eds.), Readings in Pediatric Psychology. New York, Plenum. pp. 1–21.
Roberts, M. C. (1993b). Early development of pediatric psychology. In Roberts, M. C., Koocher, G. P., Routh, D. K., and Willis, D. (eds.), Readings in Pediatric Psychology, Plenum, New York, pp. 23–26.
Roberts, M. C., and Wallander, J. L. (1992). Family Issues in Pediatric Psychology, Lawrence Erlbaum Associates, Hillsdale, NJ.
Rolland, J. S. (1994). Families, Illness, and Disability: An Integrative Treatment Model, Basic Books, New York.
Seligman, M. E. P. (1995). The effectiveness of psychotherapy: The Consumer Reports Study. Am. Psychologist 50: 965–974.
Talley, P. F., Strupp, H. H., and Butler, S. F. (eds.) (1994). Psychotherapy Research and Practice: Bridging the Gap. Basic Books, New York.
Task Force on Promotion and Dissemination of Psychological Procedures, Division of Clinical Psychology, American Psychological Association. (1995). Training in and dissemination of empirically-validated psychological treatments: Report and recommendations. Clin. Psychologist 8: 3–24.
Treadwell, M. J., and Gil, K. M. (1994). Psychosocial aspects. In Embury, S. H., Hebbel, R. P., Mohandas, N., and Steinberg, M. H. (eds.), Sickle Cell Disease: Basic Principles and Clinical Practice, Raven Press, New York, pp. 517–529.
Walker, C. E. (1988). The future of pediatric psychology. J. Pediatr. Psychol. 13: 465–478.
Walls, G. B., and Scholom, A. H. (1996). APA practice guidelines template jeopardizes clinical autonomy of practitioners. Psychologist Psychoanalyst 17–21.
Waltz, J., Addis, M. E., Koerner, K., and Jacobson, N. S. (1993). Testing the integrity of a psychotherapy protocol: Assessment of adherence and competence. J. Consult. Clin. Psychol. 69: 620–630.
Wilson, M. N., and Tolson, T. F. J. (1990). Family support in the Black community. J. Clin. Child Psychol. 19: 347–355.
Wood, B. L. (1994). One articulation of the structural family therapy model: A biobehavioral model of chronic illness in children. J. Fam. Ther. 16: 53–72.
Wood, B. L. (1995a). A developmental biopsychosocial approach to the treatment of chronic illness in children and adolescents. In Mikesell, R. H., Lusterman, D. D., and McDaniel, S. H. (eds.), Integrating Family Therapy: Handbook of Family Psychology and Systems Theory, American Psychological Association, Washington DC. pp. 437–454.
Wood, B. L. (ed.) (1995b). Special issue on child and adolescent illness and treatment [special issue], Fam. Syst. Med. 13(2).
Wright, L. (1967). The pediatric psychologist: A role model. Am. Psychologist 22: 323–325.
Author information
Authors and Affiliations
Rights and permissions
About this article
Cite this article
Collins, M.H., Loundy, M.R., Brown, F.L. et al. Applicability of Criteria for Empirically Validated Treatments to Family Interventions for Pediatric Sickle Cell Disease. Journal of Developmental and Physical Disabilities 9, 293–309 (1997). https://doi.org/10.1023/A:1024973811042
Issue Date:
DOI: https://doi.org/10.1023/A:1024973811042