Adults with Sickle‐Cell Disease: Implications of Increasing Longevity

Hagar, Ward; Morris, Claudia R.

doi:10.1002/9781119971603.ch7

Cited by 1 publication

(5 citation statements)

References 87 publications

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“…Consistent with the literature, [1][2][3][4] our participants perceived themselves to be stigmatized as "drug seekers" or "frequent flyers" when they presented to the ED, which caused them to delay seeking care. Several explained that because they have been dealing with SCD for a lifetime, they know what works, but believe that communicating this information to ED clinicians is often seen as drugseeking behavior.…”

Section: Discussionsupporting

confidence: 81%

“…Studies have shown that they are less likely to report that clinicians listen carefully to them and that clinicians show respect for what they have to say, and more likely to report that the clinician did not spend enough time with them. 1,4,15 One participant showed a photograph of herself in front of a painting of a face looking to the sky. She described her frustration with assessment of pain severity because she has been taught to distract herself from the pain.…”

Section: Resultsmentioning

confidence: 99%

“…Mutual mistrust and misunderstanding between clinicians and adult sickle cell disease (SCD) patients may cause barriers to timely SCD care. [1][2][3][4] Delays in seeking care occur frequently among SCD adults and can lead to adverse outcomes, including increased hospital admissions. This phenomenon is of concern in emergency departments (EDs) because SCD patients frequently present to the ED in severe pain that can escalate rapidly and result in organ damage.…”

Section: Introductionmentioning

confidence: 99%

“…However, SCD patients report delaying ED visits because of perceiving themselves as misunderstood and being accused of being drug addicts. [1][2][3][4] A textbook on challenging conditions in an ED setting covers 15 acute conditions that require complex decisionmaking and an effort to understand a patient's medical history. 5 Only the chapters on SCD 4 and family violence 6 discuss clinicians' biases and misperceptions.…”

Section: Introductionmentioning

confidence: 99%

“…[1][2][3][4] A textbook on challenging conditions in an ED setting covers 15 acute conditions that require complex decisionmaking and an effort to understand a patient's medical history. 5 Only the chapters on SCD 4 and family violence 6 discuss clinicians' biases and misperceptions.…”

Section: Introductionmentioning

confidence: 99%

See 4 more Smart Citations

Let Their Voices Be Seen

Young

Richardson²,

Fitzgerald³

et al. 2020

Annals of Emergency Medicine

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The mutual distrust, in part caused by misunderstanding and bias, between sickle cell disease (SCD) patients and emergency department (ED) clinicians 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.Methods: 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.Results: 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. Conclusion: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 clinicians on SCD patient perceptions, ultimately resulting in better ED care. [Ann Emerg Med.

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Section: Discussionsupporting

confidence: 81%

Section: Resultsmentioning

confidence: 99%