“It would be better for those of us who have the disease not to be ashamed”: Insights from people living with chronic hepatitis B virus infection and healthcare workers providing HBV care in Kilifi, Kenya

Chronic hepatitis B infection (CHB) causes over 1 million deaths annually, with a large burden of morbidity and mortality in the WHO-African Region (WHO-AFRO) where <5% of people are diagnosed and 0.2% are on treatment. Studies have shown that understanding of hepatitis B virus (HBV) here is often poor, and people living with HBV (PLWHB) can experience stigma and discrimination. However there has been little documentation on the impact of an HBV diagnosis on the lives of PLWHB in the WHO-AFRO region or community involvement in improving care provision. We undertook two focus group discussions (FGDs) with PLWHB and two with healthcare workers (HCWs) providing HBV care at Kilifi County Referral Hospital (KCRH), Kenya to explore experiences of living with HBV and barriers to accessing care. FGDs were conducted primarily in Kiswahili, transcribed verbatim and translated into English. The data were analysed thematically using NVivo version 14. PLWHB and HCWs at KCRH had a good understanding of HBV which was likely influenced by a concurrent research study on HBV, however they reported low awareness in the general community, and there is no local name for the infection. Many PLWHB were shocked at their initial diagnosis with mixed reactions from friends and family. Costs of transport and concerns about lost employment were the biggest barriers to care. Many people suggested decentralised clinics would reduce loss to follow up, however others would rather be treated far from home to preserve anonymity. Stigma was highlighted as a major issue, leading to feelings of isolation, rejection and discrimination. Community education, wider testing and advocacy by well-respected community members were mentioned as key methods to reduce HBV transmission. Decentralisation of clinics may improve access to care; however, this needs to be developed in careful consultation with PLWHB to ensure they are acceptable and accessible to all.