The Lived Experiences of Caregivers of Children with Sickle Cell Disease: A Phenomenological Study

Abstract

Sickle Cell Disease (SCD) affects 100,000 Americans and one out of every 365 Black births. With a focused genogram and phenomenology, the intergenerational transmission of caregiving behaviors experienced with SCD was evaluated. Six African American primary caregivers discussed their experiences when caring for a child with SCD. Themes emerged: daily primary caregiver tasks; primary caregiver challenges: cognitive coping strategies and emotional coping strategies, knowledge and family history of SCT/SCD; experiences with the health care system; societal perceptions of SCD; and initial reaction to the diagnosis of SCD. Clinical implications and future research recommendations are provided.

Keywords:

• Sickle cell disease
• marriage and family therapy
• Intergenerational Family Therapy
• caregivers