Barriers and facilitators to medical care retention for pediatric systemic lupus erythematosus in South Africa: a qualitative study
Authors' 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.
Study context
- Population
- Caregivers (parents or family members) of youth (≤ 19 years) with cSLE meeting ≥4 of 11 ACR systemic lupus erythematosus (SLE) classification criteria, recruited through pediatric and adult rheumatology clinics, South Africa
- Participants
- 22 caregivers
- Outcome
- Barriers to and facilitators of ongoing chronic care for cSLE
Methodological detailsindividual in-depth, semi-structured interviews, applied thematic analysis, Interviews conducted between January 2014 and December 2014
- Individual in-depth, semi-structured interviews
- Applied thematic analysis
- Interviews conducted between January 2014 and December 2014
Main finding
As reported in the abstract
Barriers and facilitators to chronic care engagement and retention
- Four barriers: knowledge gap, financial burdens, social stigma of SLE, complexity of the South African medical system
- Three facilitators: patient and caregiver education, robust support system for the caregiver, financial support for the caregiver and patient
Original publication
Barriers and facilitators to medical care retention for pediatric systemic lupus erythematosus in South Africa: a qualitative study. Pediatr Rheumatol Online J. Published 28 May 2024. doi:10.
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