Background
People with a condition subject to stigmatisation, such as chronic hepatitis B, are often faced with the dilemma of whether or not to disclose their status. This decision is dependent on various factors. People are more likely to disclose when they perceive the overall benefits of disclosure to outweigh the costs [
1‐
3]. According to the disclosure decision-making theory, three processes occur before disclosure ensues, namely information assessment, receiver assessment, and disclosure efficacy [
4,
5]. Information assessment is an evaluation of the risks and rewards disclosing. Receiver assessment weighs the anticipated reaction of the disclosure target. Lastly, disclosure efficacy reflects the discloser’s level of confidence to discuss the condition [
4,
5].
In the case of chronic hepatitis B, disclosure can serve as a primary prevention intervention [
6‐
8]. This is particularly crucial in high endemic countries such as Ghana, where transmission of hepatitis B predominantly occurs within families as a result of exposure from mother to child [
9]. In these regions, disclosure of chronic hepatitis B status can facilitate preventive action and the avoidance of actions that lead to hepatitis B transmission, such as sharing personal items (e.g., razors, toothbrushes) and contact with blood and body fluids (e.g., saliva, menstrual fluid, and vaginal secretions) [
9]. Hepatitis B status disclosure can also lead undiagnosed family members to get tested and linked to care, which reduces the progression of the disease to liver cirrhosis and cancer. Disclosure can also offer PWHB opportunities to receive support [
8], which can lead to better treatment adherence and emotional well-being [
10,
11].
However, disclosure of chronic hepatitis B status can also have potentially negative consequences. It can lead to rejection [
12], shame [
13], embarrassment [
14], avoidance [
15], stigma, and discrimination [
6,
7,
16,
17]. For example, in a study conducted by Wallace et al. [
18] in Australia with PWHB, participants reported divorce and denial of sex as negative consequences of disclosure. Similarly, in Rafique and colleagues’ [
16] study on the experiences of stigma among PWHB in Pakistan, about half of the participants reported avoidance of sexual relations by their spouse, and societal and family discrimination, as negative consequences of disclosure.
There have been a number of studies that have looked at the complexities associated with disclosure of chronic hepatitis B status in countries such as Australia, Vietnam, and China [
7,
18,
19], but our understanding of what motivates or impedes disclosure in the sub-Saharan African context, where hepatitis B prevalence rates are above 8% [
20], is very limited. To our knowledge, there is only one other study, conducted in Zambia, that has investigated disclosure of chronic hepatitis B status in an African context [
6]. We therefore, in this study, set out to explore reasons for and against hepatitis B status disclosure among people with chronic hepatitis B in Ghana.
Hepatitis B testing and care in Ghana
The prevalence rate of hepatitis B in Ghana is 12.3% [
21]. Ghana has a national viral hepatitis control programme. In fact, a national guideline for prevention, care, and treatment of viral hepatitis was developed in 2015, and relaunched in July of 2019. However, the full implementation of the national guideline is yet to be funded by the government. As a result, voluntary testing for hepatitis B currently requires out-of-pocket payment costing between $4 and $6 in public and private health facilities. Additionally, vaccination of new-born children whose mothers have chronic hepatitis B within 24 hours following birth is not universally implemented due to a lack of funding. Further, the costs of hepatitis B clinical monitoring (e.g., viral load monitoring and liver scans) and treatment are not covered by the national health insurance scheme but, rather, carried by affected individuals and/or their families. Only blood donors, pregnant women, and, in some instances, professionals who engage in exposure-prone procedures, such as healthcare providers, are screened for hepatitis B without a fee. In light of these challenges, disclosure of hepatitis B status by PWHB is likely the most feasible avenue for primary (i.e., avoidance of actions that can lead to transmission) and secondary prevention (i.e., screening of close contacts) of hepatitis B in Ghana.
Discussion
This study is one of the first to explore reasons for and against disclosure of chronic hepatitis B status in sub-Saharan Africa, and the first to do this in Ghana. Overall, our findings have shown that PWHB chose not to disclose their hepatitis B status because they 1) fear stigmatisation and 2) have had previous negative experiences with disclosure. Reasons for disclosure were: 1) wanting close contacts to get tested and vaccinated, 2) trusting the disclosure target(s), and 3) needing social and/or financial support.
Fear of stigmatisation was identified as an important reason for not disclosing chronic hepatitis B status. This concern is unsurprising given the plethora of evidence that hepatitis B is associated with stigma [
32‐
34], also in Ghana [
15]. This is primarily related to the perceived infectiousness of hepatitis B [
16,
35]. The majority of participants chose not to disclose their hepatitis B status to avoid being gossiped about. In collectivistic cultures like Ghana, people speak openly about their health challenges with close contacts in order to, for example, receive emotional, spiritual, and physical support. Unfortunately, the proliferation of erroneous information about chronic hepatitis B within the social space, particularly regarding the means of transmission [
11], seems to inhibit the fulfilment of this cultural norm. Our finding that many participants would not share their hepatitis B status with others because they feared gossip exemplifies this, and supports findings from Franklin and colleagues [
6], who in their study of hepatitis B disclosure and screening in Zambia, found that some participants kept their hepatitis B status from others because they feared becoming the subject of discussion. Similar concerns were also established by Sriphanlop et al. [
36] in their study of factors relating to hepatitis B screening among Africans with hepatitis B in New York. They found that participants were uncomfortable having their status known in their community because they feared gossip.
Furthermore, fear of losing employment was identified as an important reason for non- disclosure of chronic hepatitis B status. This was reported by two of our participants working in the food industry. This concern may be linked to incorrect knowledge about hepatitis B transmission routes among these participants, which may have led them to believe that hepatitis B can be transmitted through the sharing of food and utensils [
15]. Alternatively, our participants were responding to the belief that PWHB should not be allowed to work in restaurants [
19].
Our findings further showed that, in addition to fear of stigmatisation in the form of gossip, or job loss, PWHB were deterred from disclosing because they had witnessed the stigmatisation of others. Our participants felt that the reactions towards people living with HIV (PLHIV) are not very different from reactions to PWHB. They therefore felt the need to keep their hepatitis B status to themselves. Others ostensibly mentioned that they had drawn lessons from witnessing the stigma experiences of both PWHB and PLHIV,and that this was their reason for non-disclosure. This is likely the result of hepatitis B often being associated with HIV, which is highly stigmatised in Ghana [
37]. In fact, in Ghana, hepatitis B is often misconstrued to be more dangerous than HIV [
11], and, in light of the already extensive stigmatisation of PLHIV, it is likely that the associations made between hepatitis B and HIV strengthened our participants’ commitment not to disclose their chronic hepatitis B status. The perception that hepatitis B is more dangerous than HIV is driven by a lack of knowledge, often resulting from the provision of inaccurate hepatitis B information by herbal practitioners on various media platforms in Ghana [
38]. One common message used by herbal practitioners to attract customers to purchase their products is that hepatitis B is more dangerous than HIV.
Our findings also established a number of reasons for disclosure. One was wanting to protect families from hepatitis B. Participants outlined that disclosure was necessary so that their family members could get tested and vaccinated. This was because many participants perceived themselves to be a possible source of hepatitis B infection to their family members. This belief has also been observed in other locales, such as the USA [
32], Malaysia [
39], and Iran [
40]. This finding is also particularly encouraging in light of the World Health Organisation’s (WHO) recommendation to increase hepatitis B testing [
41].
Furthermore, our findings showed that, in light of fears of stigmatisation, most participants engaged in selective disclosure as a way of limiting the possible negative consequences of disclosure. In congruence with other studies, immediate family members and sexual partners appeared to be the most frequent disclosure targets [
6,
14,
19]. In Franklin and colleagues [
6] study, spouses and first-degree relatives of PWHB were also the most common disclosure targets. Also, in a study conduct by Huang et al. [
19] in China, the majority of participants disclosed their hepatitis B status more frequently to siblings, spouses, and children than to their friends [
15]. In our view, selective disclosure was preferred either because 1) participants feared negative consequences of hepatitis B disclosure including stigmatisation, rejection, embarrassment, and discrimination [
14,
19,
42] or 2) because participants were aware of the high prevalence of hepatitis B within families, as a result of mother-to-child transmission [
9]..
Another reason for disclosure was needing social and/or financial support. This is in line with a broad literature demonstrating that disclosure is often a prerequisite for support [
1,
43‐
45]. In our study, the type of support PWHB benefited from following disclosure was social support or financial aid. No previous literature on hepatitis B disclosure has demonstrated this. However, Stutterheim et al. [
46] did established that PLHIV who disclosed their status to others benefited from social support, and that this was associated with reduced psychological distress. What was interesting in our study is that the individuals that financed participants’ tests demanded information regarding the outcome of those tests which compelled a couple of our participants to disclose their hepatitis B status. This can be viewed in terms of the disclosure decision-making theory that recognises the role of rewards versus risks as important determinants of disclosure [
4,
5].
Our findings have some important implications. In terms of theory, our study makes an important contribution to a very limited literature on hepatitis B status disclosure in Africa. We contend that more studies in this area are necessary, particularly in light of hepatitis B prevalence rates in the region. In Ghana specifically, we recommend following up on this qualitative study with a quantatitive study, to better establish the frequency of these reasons for disclosure and non-disclosure, and their impact, while also considering important contextual variables such as gender, location, and age. Given the role of stigma in Ghanaian PWHB’s disclosure decisions, we also recommend invetigating perceptions of hepatitis B related stigma among PWHB using a validated hepatitis B stigma scale.
Our study also has important practical implications. The finding that fear of stigmatisation discourages PWHB from disclosing points to the need for stigma reduction interventions. We specifically recommend the development and implementation of theory and evidence-based stigma reduction interventions that are culturally appropriate, and that prioritize the participation of target populations and stakeholders from the outset. Also, given that disclosure contributes to the prevention of hepatitis B transmission within families, we believe that increasing the health literacy of PWHB and their immediate family members could effectively contribute to reducing further transmission of the hepatitis B. Additionally, we recommend the provision of counselling and support services that aid in disclosure decision-making processes of PWHB and that provide PWHB with a safe place to weigh the advantages and disadvantages of disclosing or not disclosing their hepatitis B status.
The findings of this study should be viewed in light of some limitations. The first is a potential selection bias. In our study, substantially more women than men participated. This may have impacted the findings such that the views of women with hepatitis B were better represented than the views of men with hepatitis B. However, we believe that not much variation would have been observed had more men been included. Also, the exclusion of PWHB who were in the terminal stage of the disease could potentially be considered a limitation. Perhaps, their inclusion would have provided a different view to that expressed by our participants because these people are likely to manifest visible signs of hepatitis B. Furthermore, bias may have resulted from our choice to recruit participants from hospital settings. PWHB recruited via hospitals may be more likely than other PWHB to recognise the importance of managing hepatitis B and may also have more resources to seek formal care. As a result, the views expressed by our participants might not be in line with those of PWHB who do not access formal care in hospitals.
Publisher’s Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.