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Background: Systemic lupus erythematosus (SLE) is a life-threatening, chronic, autoimmune disease requiring long term subspecialty care due to its complex and chronic nature. Childhood-onset SLE (cSLE) is more severe than adult-onset, and the cSLE population in South Africa has been reported to have an even higher risk than patients elsewhere. Therefore, it is critical to promptly diagnose, treat, and manage cSLE. In this paper, we aim to describe and evaluate barriers and enablers of appropriate long-term care of cSLE South Africa from the perspective of caregivers (parents or family members). Methods: Caregivers (n = 22) were recruited through pediatric and adult rheumatology clinics. Individuals were eligible if they cared for youth (≤ 19 years) who were diagnosed with cSLE and satisfied at least four of the eleven ACR SLE classification criteria. Individual in-depth, semi-structured interviews were conducted between January 2014 and December 2014, and explored barriers to and facilitators of ongoing chronic care for cSLE. Data were analyzed using applied thematic analysis. Results: Four barriers to chronic care engagement and retention were identified: knowledge gap, financial burdens, social stigma of SLE, and complexity of the South African medical system. Additionally, we found three facilitators: patient and caregiver education, robust support system for the caregiver, and financial support for the caregiver and patient. Conclusion: These findings highlight multiple, intersecting barriers to routine longitudinal care for cSLE in South Africa and suggest there might be a group of diagnosed children who don't receive follow-up care and are subject to loss to follow-up. cSLE requires ongoing treatment and care; thus, the different barriers may interact and compound over time with each follow-up visit. South African cSLE patients are at high risk for poor outcomes. South African care teams should work to overcome these barriers and place attention on the facilitators to improve care retention for these patients and create a model for other less resourced settings. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Primary health care (PHC) outreach teams are part of a policy of PHC re-engineering in South Africa. It attempts to move the deployment of community health workers (CHWs) from vertical programmes into an integrated generalised team-based approach to care for defined populations in municipal wards. There has little evaluation of PHC outreach teams. Managers' insights are anecdotal.Methods: This is descriptive qualitative study with focus group discussions with health district managers of Johannesburg, the largest city in South Africa. This was conducted in a sequence of three meetings with questions around implementation, human resources, and integrated PHC teamwork. There was a thematic content analysis of validated transcripts using the framework method.Results: There were two major themes: leadership-management challenges and human resource challenges. Whilst there was some positive sentiment, leadership-management challenges loomed large: poor leadership and planning with an under-resourced centralised approach, poor communications both within the service and with community, concerns with its impact on current services and resistance to change, and poor integration, both with other streams of PHC re-engineering and current district programmes. Discussion by managers on human resources was mostly on the plight of CHWs and calls for formalisation of CHWs functioning and training and nurse challenges with inappropriate planning and deployment of the team structure, with brief mention of the extended team.Conclusions: Whilst there is positive sentiment towards intent of the PHC outreach team, programme managers in Johannesburg were critical of management of the programme in their health district. Whilst the objective of PHC reform is people-centred health care, its implementation struggles with a centralising tendency amongst managers in the health service in South Africa. Managers in Johannesburg advocated for decentralisation. The implementation of PHC outreach teams is also limited by difficulties with formalisation and training of CHWs and appropriate task shifting to nurses. Change management is required to create true integrate PHC teamwork. Policy review requires addressing these issues. [ABSTRACT FROM AUTHOR]