Cognitive and emotional illness representation of people with chronic hepatitis B in Ghana: A qualitative inquiry

Abstract

Hepatitis B remains a public health concern in Ghana, with an estimated prevalence of 8.4% in adults and 14.3% in adolescents. This study explored the cognitive and emotional illness representations of persons with chronic hepatitis B who sought care at a tertiary hospital’s liver clinic in Ghana. A qualitative exploratory descriptive design was adopted, and 15 participants were purposefully chosen for in-person interviews. The data was analyzed using the content analysis procedure. The findings revealed that participants’ cognitive representations of hepatitis B infection varied. Some believed they got the infection through unsafe sexual practices, while others thought it was from their mother or spiritual sources. Participants’ predominant emotional representations included shock, confusion, and fear. Education about the causes and management of hepatitis B should be addressed as part of patient care.

Keywords

Chronic hepatitis B illness representation cognitive emotional Ghana

Background

Hepatitis B virus (HBV) has affected an estimated 2 billion people worldwide.¹ While the global prevalence of viral hepatitis is gradually declining, it remains a major public health concern, particularly in low- and middle-income countries.² In 2015, 60 million people in the Africa Region had chronic hepatitis B, and over 200 000 died as a result of viral hepatitis B-related liver disease complications such as cirrhosis and liver cancer.³

Individuals suffering from CHB face physical and psychological stress as a result of discrimination and stigma.^4–7 For example, a study exploring the social implications of living with chronic hepatitis B in a South Sudanese community in Australia reported feelings of uncertainty, anxiety, and emotional distress. In Beijing and rural China, people who were not infected with hepatitis B expressed discomfort when in close contact with or sharing meals with people who had hepatitis B (PWHB).⁵ Taylor and colleagues,⁸ noted that such attitude negatively impacted the mental health of PWHB, causing despair, hopelessness, apprehension, guiltiness, and avoidance behavior.

Although hepatitis B is common in Ghana’s adult (8.36%) and adolescent (14.30%) populations,⁹ little is known about the cognitive and emotional representations that persons with CHB develop,¹⁰ as well as the coping techniques they adopt. As a result, we sought to document these challenges in order to assist in the design of programs and policies that target affected persons in Ghana.

Methods

Study design and population

The qualitative explorative descriptive design was used. Only individuals diagnosed of chronic hepatitis B and accessing specialist care at the Korle Bu Teaching Hospital’s (KBTH) Gastroenterology Clinic were sampled.

Data collection

Purposive sampling was used to find participants. Participants were eligible if they were atleast 18 years and had tested positive for hepatitis B surface antigen (HBsAg) for at least six months prior to recruitment (i.e., an indication of chronic infection according to WHO criteria). PWHB who were critically ill and had insufficient energy to participate in an interview were excluded. Recruitment and data collection took place between February and March 2021. All the participants were recruited by the nurses at the clinic. Interviews were conducted using a semi-structured interview guide in an office in the Gastroenterology clinic. This was to ensure that participants could receive their clinical care and participate in the study at the same time. A few participants were interviewed in their homes. The first author with expertise in interviewing facilitated all the interviews. Each interview lasted between 45 min and 1 h. Overall, 18 participants agreed to participate in the study. However, three opted out owing to their unavailability and time constraints. By the 13th interview, data saturation had been achieved, but two further individuals were interviewed to confirm saturation.

Data management and analysis

The data was manually analyzed using the content analysis procedure. Both deductive and inductive content analysis were carried out. To find patterns, each team member examined the verbatim transcripts of participants line by line. Following that, the important concepts in the study objectives were deductively used as a lens to categorize the data. Following that, the text in each category was read and inductively coded to identify sub-themes. The team then gathered to confirm the common themes and sub-themes.

To guarantee rigor, credibility was ensured through member checking by participants. An audit trail was ensured to achieve confirmability and dependability. Transferability was ensured by describing in detail the context of the study.

Ethical statement

Ethical clearance was issued by the KBTH-Ethical Review Committee (No. 000159/2020). Permission was granted by the unit department head and participants provided a written consent.

Results

Socio-demographic characteristics of participants

The majority of participants (n = 11/15) were female and unmarried (n = 9/15). More than half (n = 8/15) were under the age of 30 years and had completed their tertiary education (n = 10/15). The longest duration participants had lived with hepatitis B was 16 years.

Emergent themes and sub-themes

Two themes with sub-themes emerged from the analysis of the narratives. The themes covered cognitive illness representation of chronic Hepatitis B and emotional illness representation of chronic Hepatitis B. A summary of the emergent themes is presented in Tables 1 and 2.

Table 1.

Demographic characteristics of the study participants.

ID	Gender	Age	Marital status	Level of education	Duration of diagnosis
PWHB 1	F	29	Single	Diploma	2 years
PWHB 2	F	36	Married	Tertiary	10 years
PWHB 3	F	24	Married	Tertiary	3 years
PWHB 4	F	31	Single	Tertiary	4 years
PWHB 5	F	25	Not married	Tertiary	5 years
PWHB 6	M	45	Married	Tertiary	1 year
PWHB 7	F	33	Married	Tertiary	11 yeaear
PWHB 8	M	39	Not married	SHS	15 years
PWHB 9	M	23	Not married	SHS	4 years
PWHB 10	F	28	Single	SHS	1 year
PWHB 11	M	26	Not married	SHS	5 years
PWHB 12	F	29	Single	Tertiary	6 years
PWHB 13	F	37	Divorced	Masters	16 years
PWHB 14	F	41	Married	SHS	9 years
PWHB 15	F	29	Single	Tertiary	13 years

Table 2.

Themes and sub-themes.

Themes	Sub-themes
Cognitive illness representation of hepatitis B	i. Identity
	ii. Causes
	iii. Consequences
	iv. Controllability
	v. Timelines of illness progression
Emotional illness representations	i. Fear
	ii. Distress
	iii. Negative Mood/Depression

Cognitive illness representation of hepatitis B

This theme discusses the cognitive representations regarding the identity, causes, consequences, controllability, and timelines of illness progression.

Identity

All the participants (n = 15) stated that there is no specific word for Hepatitis B in their local language. It is known mainly by its medical term; Hepatitis B. Different individuals use different descriptive terms when asked about how Hepatitis B is known in their language. These include jaundice, liver disease, which affects the liver, silent killer, dangerous disease. All participants could name at least one symptom of Hepatitis B. Most of them could identify the disease with symptoms.

Causes

This explains an individual’s perception of the condition’s cause, which may not be entirely biomedical. Some of these representations are based on personal experience, while others are based on opinions and discourses from loved ones, health professionals, and media sources. The majority (n = 8) had no idea how they got infected, and there were others (2) who did blamed it on sexual activity or contact with infected family members.

“I don’t know where actually I had it, may be through sex with my previous boyfriend because my husband is negative.” (PWHB 2)

Other participants (n = 5) stated that they suspected a spiritual cause of their infection. This belief was more prevalent where participants were unable to identify other plausible sources of their illness.

“When I first got to know about it, I thought I was cursed with it. I did my test at school, and I was like, how come everybody tested negative and I’m testing positive? Why? Is it that somebody hates me that’s why the person has cursed me with it or something? I thought it was a spiritual disease.” (PWHB 11)

Consequences

This explains the individual beliefs about the consequences of the condition and how this will impact them physically and socially. Most participants (n = 13) reported that they did not have any physical symptoms and felt healthy without showing that they had hepatitis B. However, their knowledge of the possible complications got them worried and were optimistic that they would seek the proper care to prevent liver damage.

“I’m fine, I don’t have any symptoms. I go to the hospital every six months because I don’t want my liver to damage. I read about the possible consequences. I have never experienced anything, and I hope I won’t.” (PWHB 13)

However, a few participants (n = 2) reported that they had some physical symptoms, which prompted them to seek medical attention, and eventually led to the diagnosis of their infection. They expressed fear over the possible outcome of their symptoms.

“I was not feeling well but I thought it was normal malaria we have because I had lost my appetite, fever and my eyes were yellowish. I went to test for malaria, and it was negative. I decided to go for a thorough full medical check-up at a Polyclinic and that was when I was diagnosed with Hepatitis B. I don’t know if that will damage my liver in the near future.” (PWHB 9)

The social consequences may be classified as stigma from others and self-stigma, both of which harmed their interactions with others. Some individuals (n = 7) reported stigma from others who knew about their disease, the majority of whom were family members and healthcare personnel. Similarly, those who had not yet married reported a breakdown in their relationship when their partners discovered their condition.

“I was married once and I told my then-husband about it. And he could use it to insult me. Later, he divorced saying he cannot live with a sick person. Okay, so since then, I decided not to tell anybody in my relationship.” (PWHB 13)

“A guy that I broke up with last year, went to tell someone that I’m having too many medical conditions (stigma from others). We broke up but I didn’t know that was his main reason.” (PWHB 15)

Furthermore, some participants (n = 7) reported that their condition led to financial consequences, which involved financial hardship in treating their disease and loss of job.

“They said because of the disease I was infectious. The woman in the house where I was working as security bought some medications for me and sent me back to the village not knowing she had sacked me from their house (loss of job). When I got to the village, she called me and told me to never return.” (PWHB 11)

Controllability

This sub-theme explains the beliefs about whether the condition can be cured or kept under control and the degree to which the individual plays a part in achieving this. Most participants (n = 11) stated that they understood the chronic nature of hepatitis B and had little control over it apart from taking their medication. Some participants stated that thinking about the fact that their condition is not curable made them despair. However, others reported that they had accepted their fate and learned to cope with it as they could not do anything about it.

“Something chronic is not like anything where it will be going anytime so it’s going to be with me forever. It will change so many things about me so I cried. All those I have gotten in contact with tell me this is chronic and nothing can be done about it.” (PWHB 13)

“I know it’s not curable and I don’t foresee going anytime soon until there’s a cure is found. I just have to follow what the doctor says and take my drugs.” (PWHB 5)

However, few participants (n = 4) kept hope alive that a cure for Hepatitis B would be found soon during their lifetime, and they may benefit from it. Similarly, another participant said amidst smiles that he is hoping for miraculous healing.

“I’ve been praying hard that maybe one day a cure will come.” (PWHB 6)

Timelines

This predictive belief about how long the condition might last. Some participants who were diagnosed over 5 years ago reported that they did not believe the disease will go anytime soon. A participant mentioned that, she used to have emotional distress whenever she thinks about the condition. However, with time, she gradually developed acceptance for the condition. She got more management information and realized that the condition was not a death sentence.

“For the first time or the first year, as I said, I was afraid. I was always nervous. After 5 years I accepted that the infection is chronic and it won’t go. But then I also thought about it. And I said, if I’m going to die, then I should rather be out and enjoy life... if I die, I die.” (PWHB 2)

“……..Yeah, I know it is not something going now, I think I’m okay with it. And I know if I manage yourself and you know, I eat well, I do everything right, I’ll be able to live longer with the virus in me” (PWHB 8)

Emotional illness representations of chronic hepatitis B

This theme explains how the beliefs and perceptions about hepatitis B by the participants generate an emotional response. The most prevalent immediate experience among participants after being informed that they were positive for hepatitis B was fear, distress, and negative mood.

Fear

Many participants (n = 10) reported being afraid when they were first informed about their condition, though they did not know much about hepatitis B. Others however, mentioned that the level of fear increased as they learned about the disease and realized how serious it could be and its effects on their health, relationships, and finances.

“Yes, initially the fear was there that I’m going to die, I’m going to die very young. I was so scared. I didn’t even know what will happen and everybody thinks you might die.” (PWHB 15)

Other participants had differing opinions, stating that while they had anxieties at first, the education they obtained from various platforms after learning of their diagnosis helped them deal with the anxiety because they now have a better understanding of the disease.

“I’m okay now because I’ve received a lot of education, like I said earlier, from social media on WhatsApp and Facebook. So I know it’s a normal thing, the only thing you have to do is to check your diet (lifestyle changes).” (PWHB 1)

Negative Mood

Several participants (n = 12) reported that they had a negative mood when they think about being positive for hepatitis B. Especially when they think about the chronic nature of the condition and the changes it has brought to their lives, and the fact that they had to live with it for the rest of their lives.

“I have bad ideation to end it because I do not have money, but I have this disease. Sometimes the idea of ending it comes to mind, but it is the fear of God that keeps me away from doing that (suicidal ideation).” (PWHB 10)

Shock

From the interpretation of their narration, some participants (n = 8) expressed shock when they first got to know their status with several questions running through their minds. Predominant among the questions was how they might have contracted the disease:

“I was surprised. I asked myself several questions. How did I get this disease? Like how?” (PWHB 8)

Another participant indicated how she felt terrible and could not leave the workplace to the house when she was first informed about her status. She continued that she had to call her partner, who came to accompany her home.

“It was hectic. I couldn’t just imagine myself being told I’m Hep B positive. Even getting out from the hospital to the house was a hell. I had to call my boyfriend for him to come and pick me from the hospital to the house.” (PWHB 3)

However, one participant stated that he refused to eat till the next day and called his boss to request time off from work because he felt he was going to die:

“…. it was like the world has come to an end. Even to eat the whole day I couldn't eat as if the following day, I was going to die, so there was no need to do anything I just called my boss and told him that this is what they have told me, so I am staying away from work for some time.” (PWHB 5)

Discussion

This study aimed to document the cognitive and emotional illness representation of people with chronic hepatitis B in Ghana. The cognitive representations of hepatitis B etiology among participants differed. It was observed that generally, the majority of respondents had moderate knowledge regarding HBV infection. Knowledge regarding the mode of transmission among participants is unsatisfactory.

In line with other studies conducted in Ghana,¹¹ and as reflected in our participants' beliefs, there are some misconceptions about the etiology of Hepatitis B. Our study found that, some PWHB suspected that their infection was spiritual in cause. This notion was more prevalent among those who were unable to identify other reasonable explanations for their condition. In a similar study with pregnant women in peri-urban Ghana, curses were perceived to be a possible cause of Hepatitis B in Ghana.¹² These findings are not surprising because, in most Ghanaian societies, diseases with unusual presentations are attributed to evil influences.

With regards to illness timelines, the majority of participants reported that they eventually accepted their condition over time. Those who had the disease for a longer period of time had learned to accept it. They gained additional knowledge about the illness and discovered it was not terminal. Patients become increasingly skilled at coping with illness as time passes. Other research has demonstrated that carriers gradually come to terms with their illness,¹³ which corroborates our findings.

The examination of participants’ emotional illness representations indicated a range of emotional experiences upon learning of their diagnosis, as well as variations in their feelings throughout time as they lived with the condition. After being diagnosed with Hepatitis B, participants experienced shock, confusion, and fear. This finding is supported by Valizadeh et al.¹⁴ study that discovered psychological responses in CHB patients, including fear of deprivation, a sense of blame and criticism, a sense of guilt, an expectation of premature death, and prognostic ambivalence. Many participants expressed feelings of depression while reflecting on their condition, particularly when contemplating its chronic nature, the changes it has wrought in their lives, and the reality that they will have to live with it for the rest of their lives.

People with chronic diseases have little control over the condition except through medication, and they did not anticipate a complete cure very soon. Others stated that they had accepted their fate and learned to live with the disease because they were helpless to change it. However, only a few people expressed hope for a treatment for Hepatitis B in their lifetime. Few of the participants, particularly religious adherents, said they pray for a miracle of complete cure. This finding corroborated other studies that reported that patient’s perception of the disease cause determines the treatment option they would explore.¹¹ Praying to God for a cure in particular has been reported by a study conducted in Ghana and Cameroon.^12,15

In terms of implications, this study makes an important contribution to a very limited literature on cognitive and emotional illness representation of Hepatitis B infection in Africa. We recommend following up on this qualitative study with a quantitative study, to better establish the frequency of these representations, and their impact.

Study limitations

The small sample size limits the findings generalizability. The findings could also be limited by recall bias, however, clarifying and member checking were utilized to confirm the narratives.

Conclusion and Recommendations

PWHB experience a range of cognitive and emotional representations of hepatitis B in Ghana. It is critical that the care provided to patients with hepatitis B includes psychological and emotional assessment in order to determine the level of support and care required.

Footnotes

Acknowledgements

We are thankful to the participants and staff of the Gastroenterology clinic at KBTH where the study was conducted particularly nurses Wonder Amevor and Beatrice Ashifi. For helping with participant’s recruitment.

Author contributions

AYA and CAA conceptualize the study. AYA collected the data.

Analyses of data was done by AYA, CAA, and GD.

All authors contributed to the writing and 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.

Availability of data and materials

All data generated or analyzed during this study are included in this article and its supplementary information files.

ORCID iD

Charles Ampong Adjei

References

World Health Organisation . Fact Sheet. Available at: https://www.euro.who.int/__data/assets/pdf_file/0009/283356/fact-sheet-en-hep-b-edited-2.pdf (accessed 10 June 2021).

World Health Organisation . Global Health Sector Strategy on Viral Hepatitis 2016-2021. Available at: https://www.who.int/hepatitis/strategy2016-2021/en/(2016 (accessed 20 July 2021).

World Health Organisation Africa . Hepatitis Scorecard for the WHO Africa Region Implementing the Hepatitis Elimination Strategy | WHO | Regional Office for Africa. Available at: https://www.afro.who.int/publications/hepatitis-scorecard-who-africa-region-implementing-hepatitis-elimination-strategy (accessed 20 June 2021).

Zheng

Zhu

Patrick

et al. Work-health-personal life conflicts in naive patients with chronic hepatitis B receiving initial treatment in China: a qualitative study. BMJ Open 2020; 10: e035688.

Huang

Guan

Balch

et al. Survey of hepatitis B knowledge and stigma among chronically infected patients and uninfected persons in Beijing, China. Liver Int 2016; 36(11): 1595–1603. DOI: 10.1111/liv.13168.

Block

Wang

et al. The lived experience of chronic hepatitis B: a broader view of its impacts and why we need a cure. Viruses 2020; 12(5): 1–20. DOI: 10.3390/v12050515 .

Mude

Fisher

Richmond

et al. Social impacts of living with chronic hepatitis B in South Sudanese community in Australia. Ethn Health 2022; 27(3): 529–541. DOI: 10.1080/13557858.2020.1782849 .

Taylor