Let Their Voices Be Seen.

Area of Science:

• Qualitative Health Research
• Patient Experience Studies
• Sickle Cell Disease Management

Background:

• Mutual distrust between sickle cell disease (SCD) patients and emergency department (ED) providers is well-documented.
• Misunderstanding and bias contribute to negative patient-provider interactions in the ED setting.

Purpose of the Study:

• To illustrate the perceptions and experiences of adult SCD patients with recent ED visits.
• To identify key themes influencing patient-provider dynamics in the ED.

Main Methods:

• Photovoice, a qualitative research method, was employed.
• Eight SCD participants created photographs and engaged in group discussions over 4 weeks.
• Recurring themes were identified through consensus during a critical dialogue session.

Main Results:

• Six major themes emerged: unpredictability of SCD, time's fickleness, pain management, proximity to death, ED avoidance, and communication needs.
• Patients desired active participation in their care.
• Fear of death was heightened by a perceived lack of control in the ED.

Conclusions:

• Poor patient experiences and misunderstandings can delay care, leading to escalated pain crises and hospital admissions.
• Photovoice offers a novel approach to educate ED providers on SCD patient perspectives.
• Enhanced provider understanding can lead to improved emergency care for SCD patients.