If I go to the emergency room, they think I'm there looking for drugs: Emergency care experiences of persons with Sickle Cell Disease

Sickle cell disease (SCD) is a chronic, lifelong illness affecting the lives of millions from birth through adulthood. Individuals with SCD require care and vigilance from specialized medical professionals to ensure the possibility of full and productive lives. However, in times of crisis, persons with SCD often face systemic issues in emergency care services from personnel unfamiliar with their illness. Its appears that little effort is made to understand this disease management experience and how it impacts the individuals' decision to seek care. The purpose of this phenomenological study was to explore individual experiences with care, both among personal health care providers as well as personnel in a hospital or clinic setting. Focus groups were conducted with 29 persons nationwide and their transcripts analyzed for themes. Participants' results highlight a perceived lack of understanding and awareness among emergency care personnel toward the symptoms, needs and care needed for persons in crisis. This lack of knowledge led to distrust and skepticism on the part of the medical provider, who, focus group participants felt, caused them to be treated or regarded as drug addicts. This, in turn, created weariness and distrust towards hospital and clinic personnel, necessitating a few to forgo professional care during a SCD crisis. To be discussed are recommendations from the focus group participants that include the use of patient advocates, and implications for training and practice of hospital staff .