مورد إلكتروني
Patient and Caregiver Perspectives on Care-Seeking During a Vaso-Occlusive Crisis in Sickle Cell Disease: Results from Qualitative Interviews in Canada
| العنوان: | Patient and Caregiver Perspectives on Care-Seeking During a Vaso-Occlusive Crisis in Sickle Cell Disease: Results from Qualitative Interviews in Canada |
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| المؤلفون: | Durgam,Neha, Brion,Triza, Lewis,Hannah B, Tinga,Biba, Sanon,Wilson, Lundie,Mark, Cadieux,Chantal |
| بيانات النشر: | Dove Press 2023-01-05 |
| نوع الوثيقة: | Electronic Resource |
| مستخلص: | Neha Durgam,1 Triza Brion,1 Hannah B Lewis,1 Biba Tinga,2 Wilson Sanon,3 Mark Lundie,4 Chantal Cadieux4 1ICON Plc, Raleigh, NC, USA; 2Sickle Cell Disease Association of Canada (SCDAC), Toronto, ON, Canada; 3Association dâAnémie Falciforme du Québec, Montreal, Quebec, Canada; 4Pfizer Canada ULC, Kirkland, Quebec, CanadaCorrespondence: Neha Durgam, 4130 Parklake Ave, Suite 400, Raleigh, NC, 27612, USA, Tel +1 267 827 7447, Email Neha.Durgam@iconplc.com; nehadurgam@gmail.comPurpose: There is little research on care-seeking preferences during active pain crises for sickle cell disease (SCD) patients and their caregivers. The objective of this study was to identify relevant, patient or caregiver narratives of the pain crisis experience, to understand the factors that contribute to care-seeking during a pain crisis, and to identify preferences when making care-seeking decisions during a pain crisis.Patients and Methods: Qualitative semi-structured interviews were conducted with Canadian residents with a self-reported SCD diagnosis, who were either ⥠18 years of age or an adolescent between the ages of 12â 18. Interviews were hosted virtually, audio-recorded, and transcribed verbatim.Results: A total of 23 individuals participated (74% female; 26% male), including six adolescents with parent dyads and 11 adults. Almost all (N = 21, 91.3%) participants were Black/African American. Participants mentioned many factors that influenced care-seeking decisions, mainly the symptom and pain experience; institutional factors (waiting time, the presence of and adherence to treatment guidelines, and the empathy or racial bias felt from medical staff); and subject-level factors (age and a flexibility in daily responsibilities).Conclusion: This study identified important institutional and subject-level considerations involved in care-seeking decisions. Most importantly, this study highlights the racial stigma faced by many patients when care-seeking in the ER and the lack of car |
| مصطلحات الفهرس: | Patient Preference and Adherence, Original Research, info:eu-repo/semantics/article |
| URL: | info:eu-repo/semantics/altIdentifier/doi/10.2147/PPA.S377924 |
| الإتاحة: | Open access content. Open access content info:eu-repo/semantics/openAccess |
| ملاحظة: | text/html English |
| أرقام أخرى: | NZDMP oai:dovepress.com/80800 1370362537 |
| المصدر المساهم: | DOVE MEDL PRESS LTD From OAIster®, provided by the OCLC Cooperative. |
| رقم الأكسشن: | edsoai.on1370362537 |
| قاعدة البيانات: | OAIster |
| الوصف غير متاح. |