Graduation Year

2004

Document Type

Ed. Specalist

Degree

Ed.S.

Degree Granting Department

Psychological and Social Foundations

Major Professor

Kathy Bradley-Klug, Ph.D.

Co-Major Professor

Lou Carey, Ph.D.

Committee Member

Kathleen Armstrong, Ph.D.

Keywords

sickle cell disease, children, support group, intervention, evaluation

Abstract

Children with Sickle Cell Disease (SCD) face medical, psychosocial, and cognitive challenges, which may impede their social and academic functioning. These complications can be lessened through the implementation of comprehensive interventions. This study reviews one comprehensive intervention, a support group, for children with SCD and their families, and reviews the challenges faced by the children and family who participate in the support group as well as those who do not participate. The study has a mixed-method design because the families participated in focus groups, and they completed quantitative instruments, including a knowledge survey, a behavior rating scale, and an instrument to measure the degree that SCD affects one's life. Most children rated SCD as affecting their life a little bit and were knowledgeable in SCD. The children who did not participate in the support group reported less symptoms and a smaller impact on their lives than those who did participate. The results from the behavior rating scale did not reveal any significant behavior problems in these children; however, those who did not participate in the support group had higher ratings than those who did. These results imply that individuals with SCD who are less impacted by the disease may be less likely to attend a support group than those who are more impacted. Additionally, a theme analysis from the focus groups revealed key themes, such as keeping SCD a secret, getting made fun of, missing school, missing PE class, hospital visits, and experiences with pain crises. The findings from this study indicate that SCD does impact the life of children with the disease; however, the impact may be unknown to others and may differ among individuals. The results also imply that school personnel and other students in schools must be accurately informed about the manifestations of SCD to best promote healthy physical and psychosocial development in children with SCD. Finally, support groups can help to reduce symptoms and complications related to the disease.

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