An Iceberg I can’t handle: A qualitative inquiry on perceptions towards paediatric rheumatology among healthcare workers in Kenya.

Angela Migowa, Aga Khan University
Sasha Bernatsky, (?)
Anthony Ngugi, Aga Khan University
Helen Foster, (?)
P Muriuki, (?)
A Lusambili, (?)
Stanley Luchters, Aga Khan University



Delay in diagnosis and access to specialist care are huge problems for many children and young people with rheumatic disease in sub-Saharan Africa. Most children with symptoms of rheumatic disease present to non-specialists for care. There is an urgent need to understand and scale-up paediatric rheumatology knowledge and skills amongst non-specialist clinicians, to promote early diagnosis, prompt referral, and management. Purpose We evaluated the knowledge, attitudes and practices towards diagnosis and care of paediatric rheumatology patients among health care workers in Kenya. Methods We conducted 12 focus group discussions with clinical officers (third-tier community health workers) nurses, general practitioners and paediatricians across 6 regions in Kenya. Interviews were conducted on zoom, audio-recorded, transcribed, and analysed using NVIVO software. Results A total of 68 individuals participated; 11 clinical officers, 12 nurses, 10 general practitioners, 27 paediatricians and 7 others. Most (n = 53) were female, and the median age was 36 years (range 31–40 years). Half the participants (34 of 68) worked in public health facilities. Our study revealed gaps in knowledge of paediatric rheumatology amongst healthcare workers, which contributes to late disease diagnosis and poor management. Healthcare workers reported both positive and negative attitudes towards diagnosis and care of paediatric rheumatological diseases. Perceived complexity and lack of knowledge in the diagnosis and management, in addition to unclear health system clinical pathways, made all cadres of healthcare workers feel helpless, frustrated, inadequate and incompetent to manage paediatric rheumatology patients. Positive attitudes arose from a perceived feeling that paediatric rheumatology patients pose unique challenges and learning opportunities. Conclusion There is an urgent need to educate healthcare workers and improve health systems for paediatric rheumatology patients.