Missed opportunities for timely diagnosis of pediatric lupus in South Africa: a qualitative study

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dc.contributor.authorLewandowski, Laura B
dc.contributor.authorWatt, Melissa H
dc.contributor.authorSchanberg, Laura E
dc.contributor.authorThielman, Nathan M
dc.contributor.authorScott, Christiaan
dc.date.accessioned2017-03-16T13:44:29Z
dc.date.available2017-03-16T13:44:29Z
dc.date.issued2017-02-23
dc.date.updated2017-02-23T19:03:08Z
dc.description.abstractBackground: Systemic Lupus Erythematosus (SLE) is a serious multisystem autoimmune disease, which is more aggressive in children and people of African descent. In South Africa, pediatric SLE (pSLE) patients are at high risk for severe disease. Similar to pSLE worldwide, South African children and adolescents with SLE require subspecialized medical care. The aim of this study is to describe the care-seeking experiences of families and examine factors that contribute to delays in the diagnosis of pSLE. Specifically, we sought to identify factors to inform interventions that support the timely referral and diagnosis of pediatric SLE patients in South Africa. Methods: In-depth, semi-structured interviews were conducted with 22 caregivers of pSLE patients recruited from two government hospitals in Cape Town, South Africa in 2014. Interviews were audio-recorded, transcribed, and analyzed for themes related to barriers to diagnosis. Results: Six themes were identified and classified as either caregiver or health system barriers to diagnosis. Caregiver barriers included lack of knowledge regarding SLE, financial difficulties, and the social stigma of SLE. Health system barriers were lack of trained staff, a complex medical system, and misdiagnosis. Conclusion: Caregivers reported missed opportunities for diagnosing pSLE in their children. Raising public awareness may improve caregiver awareness and reduce stigma of pSLE. Improving family education at diagnosis holds potential to increase patient-physician trust and mitigate fear. Education modules for primary care providers at initial point of contact with the health care system may improve recognition of early pSLE and facilitate expedited referral to a specialist.
dc.identifier.apacitationLewandowski, L. B., Watt, M. H., Schanberg, L. E., Thielman, N. M., & Scott, C. (2017). Missed opportunities for timely diagnosis of pediatric lupus in South Africa: a qualitative study. <i>Pediatric Rheumatology</i>, http://hdl.handle.net/11427/24055en_ZA
dc.identifier.chicagocitationLewandowski, Laura B, Melissa H Watt, Laura E Schanberg, Nathan M Thielman, and Christiaan Scott "Missed opportunities for timely diagnosis of pediatric lupus in South Africa: a qualitative study." <i>Pediatric Rheumatology</i> (2017) http://hdl.handle.net/11427/24055en_ZA
dc.identifier.citationLewandowski, L. B., Watt, M. H., Schanberg, L. E., Thielman, N. M., & Scott, C. (2017). Missed opportunities for timely diagnosis of pediatric lupus in South Africa: a qualitative study. Pediatric Rheumatology, 15(1), 14.
dc.identifier.ris TY - Journal Article AU - Lewandowski, Laura B AU - Watt, Melissa H AU - Schanberg, Laura E AU - Thielman, Nathan M AU - Scott, Christiaan AB - Background: Systemic Lupus Erythematosus (SLE) is a serious multisystem autoimmune disease, which is more aggressive in children and people of African descent. In South Africa, pediatric SLE (pSLE) patients are at high risk for severe disease. Similar to pSLE worldwide, South African children and adolescents with SLE require subspecialized medical care. The aim of this study is to describe the care-seeking experiences of families and examine factors that contribute to delays in the diagnosis of pSLE. Specifically, we sought to identify factors to inform interventions that support the timely referral and diagnosis of pediatric SLE patients in South Africa. Methods: In-depth, semi-structured interviews were conducted with 22 caregivers of pSLE patients recruited from two government hospitals in Cape Town, South Africa in 2014. Interviews were audio-recorded, transcribed, and analyzed for themes related to barriers to diagnosis. Results: Six themes were identified and classified as either caregiver or health system barriers to diagnosis. Caregiver barriers included lack of knowledge regarding SLE, financial difficulties, and the social stigma of SLE. Health system barriers were lack of trained staff, a complex medical system, and misdiagnosis. Conclusion: Caregivers reported missed opportunities for diagnosing pSLE in their children. Raising public awareness may improve caregiver awareness and reduce stigma of pSLE. Improving family education at diagnosis holds potential to increase patient-physician trust and mitigate fear. Education modules for primary care providers at initial point of contact with the health care system may improve recognition of early pSLE and facilitate expedited referral to a specialist. DA - 2017-02-23 DB - OpenUCT DO - 10.1186/s12969-017-0144-6 DP - University of Cape Town J1 - Pediatric Rheumatology LK - https://open.uct.ac.za PB - University of Cape Town PY - 2017 T1 - Missed opportunities for timely diagnosis of pediatric lupus in South Africa: a qualitative study TI - Missed opportunities for timely diagnosis of pediatric lupus in South Africa: a qualitative study UR - http://hdl.handle.net/11427/24055 ER - en_ZA
dc.identifier.urihttp://dx.doi.org/10.1186/s12969-017-0144-6
dc.identifier.urihttp://hdl.handle.net/11427/24055
dc.identifier.vancouvercitationLewandowski LB, Watt MH, Schanberg LE, Thielman NM, Scott C. Missed opportunities for timely diagnosis of pediatric lupus in South Africa: a qualitative study. Pediatric Rheumatology. 2017; http://hdl.handle.net/11427/24055.en_ZA
dc.language.isoen
dc.publisherBioMed Central
dc.publisher.departmentMRC/UCT RU for Exercise and Sport Medicineen_ZA
dc.publisher.facultyFaculty of Health Sciencesen_ZA
dc.publisher.institutionUniversity of Cape Town
dc.rightsThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License
dc.rights.holderThe Author(s).
dc.rights.urihttps://creativecommons.org/licenses/by/4.0/
dc.sourcePediatric Rheumatology
dc.source.urihttps://ped-rheum.biomedcentral.com/
dc.subject.otherLupus
dc.subject.otherPediatric SLE
dc.subject.otherAfrica
dc.subject.otherAccess to care
dc.subject.otherChronic illness
dc.subject.otherQualitative
dc.titleMissed opportunities for timely diagnosis of pediatric lupus in South Africa: a qualitative study
dc.typeJournal Article
uct.type.filetypeText
uct.type.filetypeImage
uct.type.publicationResearchen_ZA
uct.type.resourceArticleen_ZA
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