African American Adolescents with Sickle Cell Disease: Support Groups and Psychological Well-Being

Abstract

There has been little systematic study of the impact of support groups on the psychological well-being (PWB) of adolescents with sickle cell disease (SCD). Questionnaires, administered by group leaders of 12 SCD support groups, were completed and returned from 79 (80%) of the 99 African American adolescent SCD support group members recruited into this study. Multiple regression analysis revealed that PWB was best predicted by fewer physical symptoms and greater satisfaction with the group. To test a buffering hypothesis of social support, two 2 2 analyses of variance (ANOVAs) were computed to test the interaction of group satisfaction and (a) physical symptoms and (b) pain on PWB. Group satisfaction showed a main effect for each ANOVA. An interaction effect between pain and group satisfaction was detected, supporting a buffering hypothesis. This suggests that adolescents with SCD associate pain, but not physical symptoms, as high stressors. Professionals can enhance their effectiveness as providers of social and mental health services by understanding the role support groups play in the overall well-being of adolescents with SCD.

Get full access to this article

View all access options for this article.

References

Battle, S. (1984). Chronically ill children with sickle cell anemia. In R. Blum (Ed.), Chronic illness and disabilities in childhood and adolescence (pp. 265-276). Orlando, FL: Grum and Spraton.

Black, R. B. , & Weiss, J. O. (1990). Genetic support groups and social workers as partners. Health and Social Work, 15, 91-99.

Borman, L. D. (1992). Introduction: Self-help/mutual aid groups in strategies for health. In A. H. Katz , H. L. Hedrick , D. H. Isenberg , L. M. Thompson , T. Goodrich , & A. H. Krutscher (Eds.), Self-help: Concepts and applications (pp. xix-xxvii). Philadelphia: Charles Press.

Burlew, A. K. , 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.

Butler, D. J. , & Beltran, L. R. (1993). Functions of an adult sickle cell group: Education, task orientation, and support. Health & Social Work, 18, 49-56.

Cohen, S. , & Syme, S. L. (1985). Issues in the study and application of social support. In S. Cohen & S. L. Syme (Eds.), Social support and health (pp. 3-22). Orlando, FL: Academic Press.

Cohen, S. , & Willis, T. A. (1985). Stress, social support, and the buffering hypothesis. Psychological Bulletin, 98, 310-357.

Hedrick, H. L. , Isenberg, D. H. , & Martini, C.J.M. (1992). Self-help groups: Empowerment through policy and partnerships. In A. H. Katz , H. L. Hedrick , D. H. Isenberg , L. M. Thompson , T. Goodrich , & A. H. Krutscher (Eds.), Self-help: Concepts and applications (pp. 3-55). Philadelphia: Charles Press.

House, J. S. , Umberson, D. , & Landis, K. R. (1988). Structures and processes of social support. American Review of Sociology, 14, 298-318.

10.

Hurtig, A. L. (1986). The “invisible” chronic illness in adolescence. In A. L. Hurtig & C. T. Viera (Eds.), Sickle cell disease: Psychological and psychosocial issues (pp. 42-61). Urbana: University of Illinois Press.

11.

Hurtig, A. L. , Koepke, D. , & Park, K. B. (1989). Relation between severity of chronic illness and adjustment in children and adolescents with sickle cell disease. Journal of Pediatric Psychology, 14(1), 117-132.

12.

Katz, A. H. (1992). Professional/self-help group relationship: General issues. In A. H. Katz , H. L. Hedrick , D. H. Isenberg , L. M. Thompson , T. Goodrich , & A. H. Krutscher (Eds.), Self-help: Concepts and applications (pp. 56-60). Philadelphia: Charles Press.

13.

Kellam, S. , Bornstedt, G. W. , & Ensminger, M. (1983). Paths leading to teenage psychiatric symptoms and substance abuse. In S. B. Guze , F. J. Earls , & J. E. Barrett (Eds.), Childhood psychopathology and development (pp. 17-51). New York: Raven.

14.

Kramer, K. D. , & Nash, K. B. (1992). Self-help group models: An ecological conceptualization. In A. H. Katz , H. L. Hedrick , D. H. Isenberg , L. M. Thompson , T. Goodrich , & A. H. Krutscher (Eds.), Self-help: Concepts and applications (pp. 144-148). Philadelphia: Charles Press.

15.

Kramer, K. D. , & Nash, K. B. (1995). The unique social ecology of groups: Findings from groups for African Americans affected with sickle cell disease. Social Work With Groups, 18(1), 55-65.

16.

Kumar, S. , Powers, D. , Allen, J. , & Haywood, L. J. (1976). Anxiety, self-concept, and personal and social adjustment in children with sickle cell anemia. Journal of Pediatrics, 88, 859-863.

17.

Lorey, F. W. , Arnopp, J. , & Cunningham, G. C. (1996). Distribution of hemoglobinopathy variants by ethnicity in a multiethnic state. Genetic Epidemiology, 13, 501-512.

18.

Nash, K. B. (1991a). Impact of self-help groups on adults with sickle cell disease: Sickle Cell Disease Problem Scale. Unpublished scale, Psychosocial Research Division of Duke Comprehensive Sickle Cell Center, School of Social Work, University of North Carolina, Chapel Hill.

19.

Nash, K. B. (1991b). Impact of self-help groups on adults with sickle cell disease: Psychosocial Interferences Scale. Unpublished scale, Psychosocial Research Division of Duke Comprehensive Sickle Cell Center, School of Social Work, University of North Carolina, Chapel Hill.

20.

Rooks, Y. , & Pack, B. (1983). A profile of sickle cell disease. Nursing Clinics of North America, 18(1), 131-138.

21.

Taylor, S. E. (1995). Health psychology. New York: McGraw-Hill.

22.

Vichinsky, E. P. , Hurst, D. , & Lubin, B. (1983). Sickle cell disease: Basic concepts. Hospital Medicine, 12, 128-158.

23.

Weiss, J. O. (1992). Support groups for patients with genetic disorders and their families. Pediatric Clinics of North America, 39(1), 13-23.