Let Their Voices Be Seen

Abstract

The mutual distrust, in part caused by misunderstanding and bias, between sickle cell disease (SCD) patients and their emergency department (ED) providers has been widely documented in the SCD literature. This study seeks to illustrate the perceptions and experiences of adult sickle cell patients who have had at least 1 ED experience in the last 2 years. Qsource, a nonprofit health care consultancy based in Tennessee, used photovoice, a qualitative research method, to facilitate the representation of patients' experiences in living with SCD. Photovoice has participants document their experiences through photography and then, as a group, discuss and analyze the emotional state behind the photographs. Eight participants with SCD took 25 photographs during 4 weeks. Then, in a 2-hour critical dialogue, participants identified recurring themes through consensus. Participants identified 6 themes that emerged from their discussion: unpredictability of SCD, fickleness of time, coping with pain, proximity to death, avoidance of the ED, and need for improved communication. They expressed their wish to be active participants in their care, and many described a fear of death, which is exacerbated by a lack of control in the ED setting. Factors such as poor patient experience and misunderstanding may contribute to delays in seeking care for SCD patients. This may, in turn, escalate pain crises and increase the likelihood of hospital admission. We believe that photovoice may be a new means to educate ED providers on SCD patient perceptions, ultimately resulting in better ED care.