Living with hepatitis B virus infection;media messaging matters

Abstract

Hepatitis B Virus (HBV) infection is of public health importance due to its high prevalence and infectivity. A positive test for HBV has psychological, emotional, and socio-economic implications that may affect the quality of life of the clients. The media is a major source of information and awareness creation on many health related issues including HBV. This study explored how media messaging on HBV influenced coping among persons infected with HBV. Twelve in-depth interviews were conducted among clients who reported at the STI clinic for routine care at the Cape Coast Teaching Hospital, Ghana. Descriptive content analysis involving deductive and inductive approaches were applied. The findings show that radio was the main source of HBV related information. Misinformation on the transmission, chronicity and prognoses of HBV infection was mostly conveyed by traditional medicine practitioners on the media. These resulted in adverse emotional, social, and physical reactions such as fear and panic, isolation and loneliness, sleeplessness and unsafe health seeking behaviours. However, access to scientific information from health professionals resulted in empowerment and positive coping. More need to be done to regulate the content of HBV-related messages aired so as to avoid misinformation and its consequent negative impact on coping.

Keywords

Hepatitis B virus coping media messages Ghana

Introduction

Coping with chronic illnesses is challenging, especially when the illness is perceived as infectious and is associated with potential mortality such as Hepatitis B virus (HBV). HBV infection and the associated diseases poses a public health concern globally.¹ HBV is estimated to be about 50-100 times more infectious than other communicable viral diseases.² The World Health Organization (WHO) estimates that about two billion people have been infected with HBV and are thus at an increased risk of morbidity and mortality in their lifetime³ due to complications such as liver cirrhosis or cancer.^3,4 The WHO African region has the second highest prevalence globally, recording an estimated 5%–8% among the adult population.^4,5 Ghana is among the highly endemic countries in Sub-Saharan Africa with a prevalence of 5–12.5% among the adult population.^6–9

Living a healthy life in spite of the chronicity of any illness requires that the affected person adapts and copes with the psychological, emotional, socio-economic and medical implications of the disease.^10,11 Knowledge is essential in dealing with these challenges. Therefore, gaining access to accurate information about the chronic illness and its implications on the life of persons affected by the disease is an important resource for coping.^12,13

With the explosion of health information in both mainstream and social media,¹⁴ inaccurate information, misconceptions and myths about HBV and other related health conditions abound. These include information about transmission and treatment with orthodox, herbal, and other complementary and alternative treatments services that are purported to ‘cure’ HBV. Affected persons are vulnerable to these unfounded claims and misinformation¹⁵ as such information, whether accurate or otherwise, influences their health-seeking behaviour and coping.

Although, the media continues to be a major source of information and awareness creation for various diseases of public health importance such as HBV,¹⁶ over-sensationalism and misinformation of news reports on HBV transmission and mortality could negatively affect the coping decisions of persons living with the infection by fuelling anxiety, stigmatization and non-disclosure.¹⁷ However, in Ghana the influence of media reports of HBV on coping of affected persons has not been empirically documented. The aim of the study therefore was to explore the influence of media information on the coping of patients diagnosed with HBV.

Methods

Study design and population

This study employed a qualitative exploratory-descriptive research design. The population was persons diagnosed with HBV and seeking treatment at the Cape Coast Teaching Hospital (CCTH), Sexually Transmitted Infections (STIs) Clinic. A two-step approach was utilized in recruiting participants. Firstly, nurses and doctors in the clinic generated a list of eligible participants by reviewing patients’ clinic records and laboratory results. A client was eligible based on the doctor’s diagnosis of chronic HBV infection documented in the folder, was 18years and older and had accessed care for more than one year. The two independent interviewers engaged by the research team then distributed information sheets to the eligible participants to explain the purpose of the study and responded to any questions for further clarification where necessary. Those who were ready to participate signed the consent form. Purposive sampling was then applied in recruiting participants. Recruitment and data collection were conducted between October – December, 2019.

Data collection

Interviews were conducted using a semi-structured interview guide in an office in the STI clinic. This was to ensure that participants could receive their clinical care and participate in the study during one visit. A few participants were interviewed in their homes at their preference. Interviews were conducted by two independent interviewers engaged by the researchers. Each interview lasted between 30–45 minutes. Three interviews were conducted in Fante while nine were conducted in English as preferred by the participants and audio-recorded after consent had been sought from the participants. The interviews conducted in Fante were directly transcribed in English and later back-translated into Fante to ensure that the content was not lost during transcription. Three pilot interviews were initially conducted and used to improve the interview guide. The three clients who were used for this pilot were excluded from the final interviews. Eighteen eligible participants were approached for the study. Twelve participants consented to be included and were interviewed. Three eligible persons declined due to prior engagements. Data saturation was achieved by the tenth interview but an additional two persons were interviewed to confirm saturation.

The interview guide explored the media sources from which clients access information on HBV infection, identify HBV-related topics that are frequently reported on by the media, and explored the client’s perception of the impact of media information on their coping strategies.

Data management and analysis

As typical of qualitative studies, data collection and analysis were done concurrently.¹⁸ This gave the researchers the opportunity to go back and forth with participants to clarify any uncertain information. Each interview was listened to several times and transcribed verbatim first by the two interviewers, and any disparities were addressed.

Data analysis was conducted manually using descriptive content analysis method to identify patterns or repeated ideas and categories them. Both deductive and inductive analysis were conducted following the recommendations of Elo and Kyngäs¹⁹ on deductive, and Hsieh and Shannon²⁰ on inductive content analysis. Each team member independently read participants’ responses in the verbatim transcripts line-by-line to identify patterns. Thereafter, the key concepts in the study objectives were used deductively as a lens to categorise the data. Text corresponding to each of the categories were highlighted, copied and placed under the categories. Next, the text in each category were read and coded inductively to identify sub-themes. We then developed a codebook comprised of categories and sub-categories. The codebook was then applied to the text to code all transcripts by the principal investigator and reviewed by the team members. The findings were then organised by themes and sub-themes derived from the deductive and inductive analysis having in mind the research objectives. Subsequently, the team met to confirm the common themes and sub-themes.

To ensure rigor,¹⁸ credibility was ensured through member checking by participants. Five transcripts including one that was translated from Fante were returned to the participants to confirm whether the data accurately represented the experiences they shared. An audit trail was ensured to achieve confirmability and dependability. While transferability was ensured by describing in detail the context of the study as well as participant’s behaviour and experiences to make it meaningful to readers.

Ethical statement

Ethical approval for this study (CCTHERC/EC/2019/087) was obtained from the Cape Coast Teaching Hospital, Ethics Review Committee (CCTHERC), Cape Coast, Ghana. Participants also signed consent forms before data collection began. To ensure anonymity and confidentiality pseudonyms were used throughout the study.

Results

Socio-demographic characteristics and clinical history

Most of the participants were females (n = 7/12) and married (n = 8/12). Majority (n = 7/12) were 40 years or younger and most had completed tertiary education (n = 8/12). The participants had an aggregated 64 years of experience since their diagnosis with HBV, while the person with the longest experience had lived with HBV infection for 11 years (Table 1).

Table 1.

Sociodemographic characteristics and clinical history of participants.

Participant ID	Age (in years)	Sex	Educational level	HBV diagnosis (yrs)
1	28	Female	Tertiary	5
2	34	Female	Tertiary	6
3	58	Female	Secondary	1
4	34	Female	Tertiary	9
5	36	Male	Secondary	4
6	56	Female	Secondary	10
7	50	Female	Primary	11
8	23	Male	Tertiary	1
9	39	Male	Tertiary	2
10	31	Male	Tertiary	1
11	45	Male	Tertiary	4
12	48	Female	Tertiary	10

Emergent themes and sub-themes

Three themes with sub-themes emerged from the analysis of the narratives. The themes covered media reportage on HBV infection, effects of media reportage on clients following diagnosis and clients suggestions for media reportage on HBV. A summary of the emergent themes is presented in Table 2.

Table 2.

Summary of Content analysis.

Theme	Participants
Theme	1	2	3	4	5	6	7	8	9	10	11	12
1. Media reportage on HBV infection
A. Reaction prior to positive diagnosis
• Never heard/paid attention	√		√	√	√	√	√	√			√	√
• Anxiety/Fear									√	√	√
• Stigmatize		√
B. Type of media providing information on HBV
• Radio	√		√	√	√	√	√		√	√	√	√
• Television	√		√		√
• Internet	√			√	√			√	√			√
C. Main speakers on media
• Traditional medicine practitioners	√	√			√	√	√
• Radio presenters		√
• Medical practitioners					√						√	√
• Not sure			√	√				√	√	√
• Infected persons									√
D. HBV related topics broadcasted by media
• Mode of transmission	√	√	√		√				√	√	√	√
• Signs and symptoms				√
• Chronicity			√	√			√		√	√	√
• Herbal cure/treatment	√	√	√		√	√	√	√		√	√	√
• Allopathic medicine				√					√
• Lifestyle changes					√						√
• Dietary management	√	√				√		√				√
• Complications	√		√					√	√	√	√
• Other peoples’ experiences managing HBV				√		√	√
2. Effects of media reportage on HBV infection
A. Psychological instability
• Fear of death						√	√			√	√
• Fear of stigmatization	√			√
• Fear of infecting others	√								√
• Anxiety			√				√			√	√	√
• Guilt/feeling bad	√	√						√		√
B. Emotional disturbance
• Denial	√	√				√			√
• Sadness	√	√			√			√			√
• Emotional dependence	√	√										√
C. Social loneliness
• Self-isolation/loneliness	√					√		√		√
• Extra alert to media reportage	√		√			√		√
• Non-disclosure		√							√			√
D. Physical wellbeing
• Sleeplessness	√		√							√
• Loss of appetite			√		√						√
3. Impact of reportage on coping mechanism
A. Non-disclosure									√
B. Seeking clarity
• Increased zeal to research further	√			√			√		√	√	√	√
• Seek clarity from health professionals		√			√	√			√	√	√
• Avoid media							√
C. Disease management
• Dietary modification		√	√	√	√	√	√	√	√	√	√	√
• Lifestyle modification					√
• Use of herbal treatment	√
• Spiritual care			√			√
4. Clients wishes for media reportage on HBV
A. Who should provide health education on HBV on media?
• Health professional	√	√	√	√	√	√	√	√	√	√	√	√
• Clients with experience			√							√
B. What should be the focus of media reportage on HBV
• Sensitization	√	√	√	√	√	√	√	√	√	√	√	√
• Signs and symptoms
• Management					√				√		√

Media reportage on HBV infection

Reaction to HBV reportage prior to diagnosis

Several of the participants (n = 9) reported that they had never heard HBV-related reportage in the media prior to their diagnosis. But for those participants who had listened to any such reportage prior to their diagnosis, their initial reaction was nonchalance that was exhibited by not paying much attention to the details of the reportage. The nonchalance was attributed to the fact that the participants felt the information was not really useful to them at the time. One participant said:

I did not really pay attention to the explanations that they give. (P3)

However, for those (n = 3) who had heard and paid attention to the content of media reportage on HBV, fear was the most expressed reaction even before they were diagnosed with the condition. These participants indicated that their fear was as a result of how the media portrayed HBV infection as a death warrant. A participant reported that:

It was scary when I heard it [from the radio] because they said it [HBV] cannot be cured and you will die (P9).

Media sources for HBV-related information since diagnosis

From the participants’ narratives, the radio (n = 8) was the main source of access to HBV-related information in the media while others had surfed the internet (n = 6) and watched the television (n = 3).

I hear them talk about it [HBV] on the …radio (P3)

I go to the internet to read on how to prevent or reduce it (HBV) (P4)

For those participants who had heard a media reportage on HBV, herbal medicine practitioners (n = 5) were the main sources of information while a few (n = 3) had heard allopathic medical practitioners teach about the condition in the media. In relation to herbal medicine practitioners, a participant shared this:

The system [media] have been dominated by those “road side doctors” [herbal medical practitioners]. If someone is able to make two herbs then he calls himself a doctor … for the others they will say God gave them a dream that this medication [herbal medicine] is good. … (P2)

Another participant also said this in connection with allopathic medical practitioners:

I listened to one doctor on a television station who gave education on the treatment so I paid attention to it. (P5)

The media programs that reported on HBV-related information were mainly aired on programme sponsored by the herbal medicine practitioners for propagating the services of their institutions while in a few instances, participants reported listening to HBV-related information shared on scheduled health programs that allopathic medical practitioners were invited to educate the public about various health topics including HBV.

HBV-related topics discussed in the media

Most of the participants, reported learning about the mode of transmission (n = 7), chronicity (n = 6), and complications (n = 6) of HBV-related topics through discussions in the media. A participant reported that:

I know that it is through body fluids, body contact and sharing of sharps and other body items…and through sex if the other party is infected. Children born to Hep B parents can acquire it through that if the child is not immunized. (P1)

All the participants (n = 12) had heard about the management of HBV. Of these, most (n = 10) had heard about herbal treatment, while only a few (n = 2) had heard about allopathic treatment. Some participants also reported instances where during media reportage on HBV management, the herbal medicine practitioners, in an effort to sell their medication which they purported to cure HBV infection, discredited the allopathic medicine used in managing HBV infection. A participant expressed this observation as follows:

…for the [radio] stations, yes, they have been selling medicine … but they said the hospital don’t have any medicine for it [HBV]. (P2)

In some instances, some participants reported learning about life style (n = 2) and dietary changes (n = 5) that was necessary in managing HBV.

Effects of media reportage on clients following diagnosis

Psychological instability

Most of the participants (n = 8) had experienced some form of fear when they received a positive HBV test result because of the information they previously heard in the media. According to several of these participants, the fear they experienced could be attributed to media messaging that propagated complications and early death of HBV-infected persons because there was no cure for the infection. An excerpt of a participant’s narrative depicts this:

…yes, they [the media] make it looks like a death sentence and the pictures they show on how the liver will look like is scary. (P4)

Several participants (n = 8) stated that when reportage stressed on the high infectivity of HBV, it bred fear that results in stigmatisation and discrimination from the general public.

… More especially when they talk about my condition [HBV] in that way when people are in the house, they don’t want to associate with you … That alone can kill the person because people may not associate with the person. (P1)

Emotional disturbances

Denial was the initial reaction expressed by some participants (n = 4) when they tested positive to HBV

… it was difficult to admit that I was also infected with the diseases… (P9)

According to the participant, the denial was based on the media reportage of risk factors of getting infected with HBV, the participant felt there was no reason to explain the positive diagnosis . Fortunately, for the participant, this experience was transient and acceptance of the diagnosis was soon achieved following education at the clinic.

Sadness and continuous grieving were experienced by some participants (n = 5) resulting from the media reports of the hopelessness associated with HBV diagnosis. For several participants, the sadness was expressed through continuous and uncontrollable shedding of tears.

I felt bad, I was sad hmmm, I was, I don’t want to hear it, talk of me having it, I was very sad, there was nothing I could do. … … I thought they [the presenters] know, they have fact. You know when they are speaking, they speak with vim [confidence] (P2)

I feel so bad because of the way they [presenters] say it … I use to l cry the whole day (P1)

From the narrations, it was obvious that the media reportage on the efficacy of herbal medication’s ability to cure HBV resulted in some participants (n = 3) developing emotional dependence on the herbal medicine practitioners’ messages of hope, cure and prolonged life that fuelled their continuous use of the herbal medicine.

Social loneliness

The fear of infecting others informed some participants (n = 4) decision to socially isolate from family and friends. This however, resulted in the feeling of loneliness. One participant said:

Sometimes because of the way they [presenters] talked … I use to lock myself in the room …I did not interact with my family members. I did not want to get close to them, thinking I may infect them … I became scared and lonely … (P1).

The social isolation, although instigated by the participants, led several participants (n = 4) to use the media as a source of companionship. Reportedly, this exposed the participants to more information on HBV-related information creating a vicious cycle of fear, withdrawal and loneliness.

In some instances, however, some participants (n = 3) indicated that, although they chose to maintain social relations with their family and friends, they chose non-disclosure of their HBV-status as a means of preventing abandonment by family and friends. These participants however reported having missed the opportunity to receive social support with managing the condition.

Physical wellbeing

Following their diagnosis, the media reports on chronicity and early death adversely affected the physical wellbeing of some participants. These participants reported sleeplessness, panic and even loss of appetite.

The media information … affected me VERY badly, because initially I was not even able to sleep. I was thinking about it every day. (P10)

Honestly, I panicked because of what I heard about the diseases. I thought of it for almost a whole week I couldn’t eat. (P11)

Health-seeking behaviour

The continuous media reports on the curative abilities of herbal treatment impacted the health-seeking behaviour of participants. A number resorted to traditional medicines and other complementary and alternative medicines options, seeking the promised cure.

I also used traditional medicine a lot, when I don’t get results then I stop. I have been to more than three places. (P1).

Because most of the participants were educated, there was an increased desire to research further on the condition and to gain clarity on some media messages on HBV. This exposed some to the experiences of people who were living meaningful lives with the virus for a long time and helped debunked the assertions of imminent death. A participant reported that:

I was mostly on the internet … on the internet, I had people’s testimonies and how they are handling the whole situation for about ten years. That petite information was what I was counting on … (P4).

Further to this, some participants reported becoming empowered to engage health practitioners on the healthcare they received as well as verified information they gathered on HBV from the media.

On the internet, … I saw some recommended medicine so I took a picture and came to show to A [a lab technician]. He said they [the doctors] will review me and when there is the need to put me on medication they will do so. (P5)

Clients’ suggestions for media reportage on HBV

Who should educate on HBV in the media?

All the participants recommended that health care professionals should take over media reporting on HBV. This they felt was necessary as it will propagate the right information on the infection. Some participants also felt that clients who had personal experience with managing HBV should be given the opportunity to educate the public about the condition. Some of the participants expressed this in the following narratives:

I think health workers should be allowed to give information on the media because they are not in for money. These herbalists can confuse them [listeners]. (P9).

I think it shouldn’t be only health workers. I think everybody who has some knowledge about this condition, especially those who have suffered the disease. (P10)

Content of educational messages

The need to sensitize the public about HBV was expressed by some of the participants. This was because majority of the participants had not known about HBV prior to their diagnosis. They reported that such awareness creations should also focus on the need to test to know one’s status.

I think education should be on awareness for people to check and know their status because having known my status am very careful on what to do and what not to do especially my diet so assuming I didn’t know I will still be doing anything to worsen my situation (P9).

Discussion

The participants in this study were adults, many of whom had been diagnosed with HBV as young adults. This corresponds with a systematic review of the prevalence of HBV in Ghana²¹ that indicated relatively high prevalence of HBV among adolescents and adults. It is important to note that since HBV testing is voluntarily initiated, it is likely some persons were infected in their earlier years, but diagnosed much later in adulthood. Hence, while the participants’ years since diagnosis isn't very long, they likely have been living with HBV for most of their lives.

The participants in this study shared various experiences with their encounter with the media before and after diagnosis with HBV. Findings from this study indicated that although HBV-related messages were being published in the media, it was not catching the attention of the general population who were undiagnosed and perceived to be negative. This is corroborated by a report by WHO, that shared the experience of an HBV-infected Ghanaian.²² There is therefore the need to re-structure the content of the media report to inform the larger population that is untested.

The radio was the most accessed source of HBV information prior to the participants’ diagnosis. This is similar to other studies conducted in other parts of Ghana.^23,24 The radio therefore presents a great opportunity for HBV awareness creation as it has a wider coverage of listenership including rural areas where there are limited access to other media sources.²⁵ In this study, most of the HBV-related programs were sponsored by the herbal medicine practitioners on paid-for programs, while in a few instances allopathic medical practitioners were invited to share knowledge about HBV.

Following diagnosis however, the internet was found to be a useful source of HBV information that augmented the knowledge that the literate participants needed to cope. Similar studies in Iran support this finding.²⁶ The media therefore can contribute positively to the coping of clients’ diagnosed with HBV as the right information provided can assist affected people to find ways of adjusting to their diagnosis.²⁷

The study also found that shared experiences of others who had lived successfully with HBV was an important source of hope that enhanced coping. This concept of shared experiences has been explored in the management of other chronic illnesses such as HIV²⁸ and reported to successfully enhance the health-seeking behaviour of persons living with chronic illness. However, the persistent attention of the media message on the high infectivity, the chronicity of the HBV infection and early death of HBV infected persons in this study, bred hopelessness and fear in the participants which negatively impacted their wellbeing and coping.²² This finding is supported by other studies in Ghana that found reports of HBV being highly infectious and with a poor prognosis resulted in social isolation, excessive cautiousness and in some instances stigmatization even in health care settings.^9,29

Another recurring media message was advertisement on herbal medicine that were purported to cure HBV. It is a common practice in the Ghanaian media that advertisements on various herbal and traditional medicines that are purported to cure various diseases are aired.³⁰ Hence, this finding was not surprising. Similarly in Australia, persons of African descent diagnosed with HBV resorted to the use of both allopathic and herbal medicines in the management of their condition.^31,32 However, it was of concern to note that the information participants accessed in the media especially on the curative abilities of the herbal treatments led to disappointment. Policy frameworks exist in Ghana to regulate the advertisement and use of herbal medicines. For example, the government recognises the public’s use of traditional medicine, thus, Act 575; Traditional Medicine Act, was enacted to regulate its practice.³³ Also, the Food and Drugs Authority is mandated by the state to regulate the content of adverts in the media.³⁴ However, in the light of these findings, it is not clear whether the functions of these institutions in the regulation of traditional medicines are effectively done. This finding suggests that more needs to be done to regulate media reportage on HBV information and treatments to avoid misinformation.

It was however heartening to find that most participants having understood the scientific basis of HBV recommended that health care professionals must take over the reportage on HBV in the media. This they felt was necessary as it will propagate the right information on the infection.

Study limitations

Being a facility-based study, the findings cannot be extrapolated to the general population. Nevertheless, the participants visited the facility on an out-patient basis, thus, there is the likelihood that their views on coping can be similar to others visiting other clinics. The findings could also be limited by recall bias, however, clarifying and member checking were utilised to crosscheck narratives before publishing the findings.

Conclusions and recommendations

The study found that the media, particularly radio, was an important source of information on HBV in Ghana and can contribute to both negative and positive coping among affected persons. There is therefore the need to regulate the content of HBV-related messages aired so as to avoid misinformation and its consequent negative impact on coping. Regulating media reports on HBV should include vetting of the content of the message to ensure that it conforms with evidence-based knowledge.

Footnotes

Acknowledgment

We are thankful to the participants and staff of the HBV clinic at CCTH where the study was conducted particularly nurses Portia Diaba and Livingstone Yao Dablu. For helping with participants recruitment. We acknowledge the role of Sarah Nsowah and Benjamin Agyekum Attuah; for helping with conducting the interviews.

Authors’ contributions

SAA, SOA, DOY, and AAD: contributed to the conception of the research idea, designing the study, data analysis, and the drafting of the manuscript. EA and EAA: contributed to the data collection, analysis and provided a critical revision of the manuscript. All authors contributed to the final revision of the manuscript.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iDs

Susanna Aba Abraham

Sampson Opoku Agyemang

Dorcas Obiri-Yeboah

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