The Relationship Between Sickle Cell Support Group Status and Barriers to Care as Perceived by Parents of Children with Sickle Cell Disease

Goldie Okechi Nwaru Nwachuku, Walden University


By examining barriers to care, health professionals can better understand what disparities exist between groups and who may be at greater risk for poor primary care. Researchers have highlighted the need for additional research that focuses on the extent of unmet needs for U.S. children with sickle cell disease (SCD). The purpose of this quantitative study was to compare the differences between parents who are in a SCD support group and those who are not. The theoretical framework of this study is based on the chronic care model and social support theory. A total of 128 parents of children with SCD completed the study survey. The sampling occurred by e-mail, phone, and face-to-face conversations. Selection criteria for potential participants in both groups were based on their children being diagnosed with SCD. Seventy-four participants (57.8%) were members of a SCD support group, and 54 participants (42.4%) were not members of a SCD support group. In this study, the independent variables were parents attending or not a SCD support group. The t test and MANCOVA was used to assessed the association between perceptions of barriers to care and support group status. However, statistical analysis showed no significant results. The null hypothesis was not rejected. Therefore, the positive social change implication is to further explore potential factors that may shape perceptions of barriers to care for those with SCD so that perceived barriers to care can be overcome.