Understanding Hepatitis B in Kilifi: Voices and Challenges

Around 256 million people around the world have a chronic Hepatitis B infection. In Africa, there’s a significant number of cases, but unfortunately, hepatitis B often gets overlooked in healthcare discussions. Many folks living with this virus don't even know they have it, and the Community's understanding of hepatitis B is quite limited.

In Kilifi, Kenya, we decided to talk to people living with hepatitis B to learn more about their experiences. Our goal? To gather information that could help improve CARE for them and maybe expand our study to include more voices in the future.

#What We Did

We conducted focus group discussions (FGDs) to hear from people who have hepatitis B. We wanted to learn about how they understand the virus, how their lives have changed since finding out they have it, and what challenges they face in getting care.

The study took place at Kilifi County Referral Hospital over about a year. We enrolled 102 Participants, which is a small but mighty group. The hospital serves a large area and sees hundreds of thousands of patients every year. Before our study, not many people with hepatitis B were getting care there. They often had to pay for testing and treatment, which wasn’t very accessible.

As part of our study, we helped set up peer support sessions every three months. These were designed to get everyone talking, sharing information, and answering questions. After one of the support sessions, we invited some participants to join our FGDs for more in-depth discussions.

#How We Collected Information

In our discussions, we had mixed groups of men and women. We asked them questions in Kiswahili, a local language, and recorded the conversations. Participants were compensated for their time, and refreshments were provided. We later translated and analyzed what was said.

#Knowledge About Hepatitis B

When we first asked participants about hepatitis B, most knew it was a virus that affects the liver. They talked about how it can spread through sexual contact or blood. Some believed that sexual transmission was the primary way to get it, while others thought it could also be passed on from mother to child or through sharing personal items like razors or toothbrushes.

Interestingly, several participants worried about getting involved in accidents and unknowingly spreading the virus through blood. They all knew there were medications available for hepatitis B, but there was some confusion. Some thought that after taking medication for six months, they would be cured, while others knew that wasn’t the case.

When talking about hepatitis B in their local language, many participants said it was often seen as an unknown disease. Some only referred to it as liver disease, while others called it “pregnancy” or “cancer.” A few had heard of it from others in their village, but the general feeling was that it was a death sentence.

#Confusion with HIV

There was a lot of talk about how people often confused hepatitis B with HIV, especially since both are treated at the same clinic. Some participants mentioned feeling they had to "prove" they didn't have HIV because of the Stigma attached to both infections. Comments like "You have gone and you have been tested" captured the frustration some felt about having to clarify their condition to friends and family.

#Symptoms and Diagnosis Reactions

Participants shared various symptoms they had experienced, such as fatigue, stomach pains, and nausea. Many felt better after starting treatment, which motivated them to continue taking their medication.

Reaction to being diagnosed with hepatitis B varied. Many were shocked and anxious at first, but counseling and support helped ease their worries. Some had been tested before travel, but the diagnosis was often not explained well, leading to further distress.

#Changes in Daily Life

Once diagnosed, people found that their lives changed in various ways. Some positive changes included cutting down on alcohol due to liver health concerns. One participant noted, "I can be sober, I’m grateful," reflecting a newfound sense of responsibility towards their health.

However, many participants also noted that they felt restricted in their social lives because of their treatment schedules. Some had to be home at specific times to take their medication, while others felt they couldn’t go out with friends.

#Barriers to Getting Care

During our discussions, it was clear that financial burdens were a significant barrier to receiving hepatitis B care. The cost of getting to the clinic was frequently mentioned as a challenge. Some participants felt that medications should be available at local health centers to reduce travel costs and time.

Many expressed difficulties with taking time off work to attend appointments, facing potential loss of pay or even job security. Surprisingly, nobody mentioned childcare as a barrier, which could be due to different family dynamics in the region.

#Stigma and Discrimination

Participants talked about facing stigma and discrimination related to living with hepatitis B. Some felt uncomfortable eating with others or were worried about how people would react if they found out about their diagnosis.

While some believed that separating hepatitis B and HIV services would reduce stigma, others felt it might create more barriers. They all agreed that community support was crucial and that people with hepatitis B and HIV shared more similarities than differences.

#Reducing Transmission

When asked how to reduce the spread of hepatitis B, participants mentioned common-sense approaches like practicing safe sex and avoiding sharing personal items. There was also a strong belief in the importance of community awareness. Many thought that if people understood what hepatitis B was and that there are treatment options available, fewer people would feel isolated.

Ideas were shared about how to spread knowledge in the community, such as using religious leaders to promote testing and awareness. Participants suggested that everyone should be tested for hepatitis B during routine hospital visits, like they often are for HIV.

#Dealing with Stigma

Reducing stigma around hepatitis B was emphasized as crucial for encouraging those living with the virus to speak out and share information. They believed that with more community education, people would feel more comfortable discussing their diagnosis and encouraging others to seek testing.

#Conclusion

Throughout our discussions, we learned a lot about the challenges and experiences of people living with hepatitis B in Kilifi. Cost was the biggest barrier, with many feeling that improving community education and making testing more accessible would help. While some people felt restricted by their diagnosis, those who received support and information often found ways to adapt.

Our study gave a voice to those living with hepatitis B, and it highlighted the need for better resources and education to reduce stigma and improve access to care. Living with hepatitis B doesn’t have to be a lonely journey, and with a community-focused approach, we can open doors for more understanding and support.

In the end, we may not have solved all the problems, but we gathered valuable insights that could contribute to making life a little easier for those dealing with this virus. After all, a little knowledge can go a long way in turning fear and confusion into understanding and hope.