The Role & Influence of Spirituality for Young Couples Receiving a Diagnosis of Sickle Cell Disease

“… have an inner sense of divine presence and how does this inner sense of divine presence help them live with having a child with sickle cell disease? ”

Team Members/Contributors

R. Lorraine Brown United Methodist Church Baltimore/Washington Conference - Growing Seeds Cooperative Ministries Contact Me

About this pastoral study project

Sickle Cell Disease (SCD) is a hemoglobinopathy, part of the family of single-gene inherited blood disorders. The implications of receiving a diagnosis of an acute and chronic illness like sickle cell disease means becoming inundated with enormous amounts of information, having to make critical life changing decisions, and assuming responsibility for compliance with medical care requirements. To manage these many components, families may rely heavily on medical providers, community-based organizations and/or the internet. Some families and individuals living with SCD also utilize spirituality as a means of coping effectively with complications of the disease. Although spirituality has been studied in individuals with SCD, significant gaps have been identified for addressing the spiritual concerns of African American parents 18-25 years of age facing their first diagnosis of sickle cell disease in their unborn or newborn child. Further focused time and efforts of this population is required to develop appropriate resources and expend energies efficiently to meet identified needs. This project will develop ethnically appropriate tools and perform a pilot qualitative study examining the relationship between spirituality and coping with a chronic illness such as SCD for young parents who are pregnant or living with a newborn child.