Let Their Voices Be Seen - 12/09/20
Abstract |
Study objective |
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.
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| Supervising editor: Donald M. Yealy, MD. Specific detailed information about possible conflict of interest for individual editors is available at editors. |
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| Authorship: All authors attest to meeting the four ICMJE.org authorship criteria: (1) Substantial contributions to the conception or design of the work; or the acquisition, analysis, or interpretation of data for the work; AND (2) Drafting the work or revising it critically for important intellectual content; AND (3) Final approval of the version to be published; AND (4) Agreement to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. |
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| Fundingandsupport: By Annals policy, all authors are required to disclose any and all commercial, financial, and other relationships in any way related to the subject of this article as per ICMJE conflict of interest guidelines (see www.icmje.org). Publication of this supplement was supported by the Office of Minority Health of the US Department of Health and Human Services. The activities described in this article were performed under contract HHSM500T0005 titled Medicare Quality Innovation Network - Quality Improvement Organization Special Innovation Project for region 6, funded by the Centers for Medicare & Medicaid Services, an agency of the US Department of Health and Human Services. The content of this article does not necessarily reflect the views or policies of the Department of Health and Human Services, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. government. The authors assume full responsibility for the accuracy and completeness of the ideas presented. This article is a direct result of the Quality Improvement Organization Program initiated by the Centers for Medicare & Medicaid Services, which has encouraged identification of quality improvement projects derived from analysis of patterns of care, and therefore required no special funding on the part of this contractor. Feedback to the authors concerning the issues presented is welcomed. |
Vol 76 - N° 3S
P. S73-S77 - septembre 2020 Retour au numéro
Article précédent
- A Survey-Based Needs Assessment of Barriers to Optimal Sickle Cell Disease Care in the Emergency Department
- Elizabeth A. Linton, Dania A. Goodin, Jane S. Hankins, Julie Kanter, Liliana Preiss, Jena Simon, Kimberly Souffront, Paula Tanabe, Robert Gibson, Lewis L. Hsu, Allison King, Lynne D. Richardsona, Jeffrey A. Glassberg, Sickle Cell Disease Implementation Consortium
- A Caregiver’s Perspective: Internist, Active Duty Service Member, and Mother of a Child Living With Sickle Cell Disease
- Stephany McGann
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