Body, Mind, and Spirit: Ministering to Those Diagnosed with Sickle Cell Disease (SCD)

Rev. Dr. R. Lorraine Brown (Cross) DMin, CHM (Certified Health Minister), CPHP (Certificate in Public Health Practice), and RN has had a career that might be described as a nurturing journey. Prior to a life of ministry, her career was focused in the areas of early childhood health education and sickle cell disease, working for the federal government as the Director of the Hemoglobinopathy Programs and Project Director for two Sickle Cell Disease programs. These programs required utilization of a wide range of public health concepts and health care delivery methods which gave relevance to her Certificate in Public Health Practice.

She received her certificate as a Kellogg Executive Scholar in Nonprofit Management and graduated with her Doctor of Ministry degree (Strategic Leadership for Black Congregation) in 2020 from Garrett Evangelical Theological Seminary.

Her nursing experience became enhanced when she answered her call to ministry, allowing her to focus on the body, mind and spirit. Unique to her professional nursing career is the application and attention given to the value of spirituality to healing and to achieving total well-being. Instrumental towards those effort has been her leadership efforts for a multi-leveled research funded projects, begun in 2015, focusing on the influence of spirituality for young African American adults, 18-28 years of age, who are seeking, exploring, and questioning their spiritual development. The varied projects, in collaboration with an adept team, have been instrumental in assessing spiritual health and identifying interventions and resources that would be instrumental to individuals coping with Sickle Cell Disease (SCD).

Sickle cell disease (SCD) is an often-over-looked public health issue, most commonly affecting those whose ancestry is from Africa, but also descendants of other ethnic groups from Mediterranean countries such as Greece, Turkey, the Netherlands, the Middle East, Italy, the Arabian Peninsula, India, Spanish-speaking regions in South and Central America, and parts of the Caribbean.”[1] SCD, an autosomal recessive inherited disorder of the red blood cells, affects about 100,000 individuals in the United States. According to the Centers for Disease Control and Prevention (CDC), 1 of every 365 African American births[2] results in a child born with SCD. With SCD, red blood cells containing abnormal hemoglobin causes the normally round, pliable cells to become crescent shaped, stiff, and sticky. The sickle cells block blood flow to limbs and organs, causing decreased oxygen supply, acute and chronic pain, organ damage, and increased susceptibility to infection. SCD affects individuals of all ages differently with various symptoms including chronic fatigue, anemia, pain, fever, strokes (even as young as six years of age), and infection. Painful episodes are often very severe and frequent, requiring hospitalization. Add to this the unique concerns and needs of individuals 18-28 years of age.

Previous phases of PSSC have focused on identifying and developing strategies for meeting the needs of this population. In one activity, focus group participants shared their attitudes, beliefs and the barriers that exist for them seeking, understanding, and practicing a spiritual life. One participant commented, “… I think when people are getting treated [for SCD], you need that spiritual support; then it doesn’t feel like you’re so absent from God or far from God when you’re in the hospital or when you’re at the doctor… I know I felt that way so much. When I’m in the hospital is when I feel farthest from God, and when I feel like, what is going on here and why is He doing this. And if I could just talk that out with someone or even pray with someone and just know He’s still here, that would be great.”

The doctoral work completed at Garrett-Evangelical realized the completion of Phase III of this important work, a pilot clinic-based pastoral support and care intervention, “How are African Americans, age 18-28, who receive care for sickle cell disease are impacted by intentional sharing of clinic-based spiritual counseling?” Through this intervention, a curriculum tailored specially for these participants was administered by a chaplain during one-on-one sessions. One participant commented “The sessions provided me a space to share my beliefs…to reflect on my life, as well as understanding God is still there in my hurt and spiritual distress…” Perspectives captured during the pilot intervention provided rich insight into the spiritual beliefs, behaviors, attitudes, and struggles of this population.

Since graduating from the DMin program, she has been guided and supported by a newly formed diverse board of directors, in the founding of a community-based organization, Project SPIRIT Sickle Cell (PSSC), to carry out the mission to continue to meet the needs of this unique population. PSSC has evolved to become a grass-roots community-based spiritual resource for these young adults who find themselves traversing life transitions. These transitions include among many, the passage from adolescence to adulthood, the many facets associated with moving from pediatric to adult health care and discovering their own sense of spirituality.

The objective of PSSC is to bring together the connection between health, spirituality, sickle cell disease, and coping, as these individuals navigate life challenges during their formative years. Systems and mechanisms are being developed to help them find meaning, comfort, hope, goodness, and community alongside their challenging health condition. Collaborations are being established with various sickle cell health clinics and community resources to accept referrals for individuals to meet with a chaplain to assist them in understanding their over-all spiritual life and well-being. A structured pastoral support and care curriculum is provided to nurture & enhance spiritual health, through individual and group sessions. However, the reality is there are challenges when trying to reach young adults who often find themselves in circumstances that produce feelings of hopelessness. Participants are assisted to work through the realities of life, death, and hope as they face, racial injustices, health disparities, and societal biases – especially as these factors affect the many complex manifestations of their disease.

The aim of Project SPIRIT Sickle Cell is to 1) explore strategies and improve self-management of personal issues which may be a source of physical and/or emotional pain or trigger sickle cell painful episodes; 2) increase awareness of the importance of spiritual ownership; and 3) be a source for individual transformation through ‘new life’ and new awakenings. The overall goal, to support those not only surviving but thriving in the face of so many uncertainties.

Rev. Dr. Brown is excited about advocating for these young adults, who feel most disenfranchised by society, religion, and church. By combining gifts of nursing, public health, and ministry, she feels poised to continue facilitating healing and wholeness for individuals, families and communities as she actively works to introduce for some and enhancing for others, how spirituality may bring peace as they daily meet the many aspects of life transitions. The ability to hear and discern one’s spirituality during upset and distractions is often more fully discovered through the sharing of divine grace.