Abaah et al. BMC Primary Care           (2023) 24:82 BMC Primary Care
https://doi.org/10.1186/s12875-023-02041-5
R E S E A R C H Open Access
Physical and social wellbeing of family 
caregivers of persons with hepatitis B 
associated chronic liver disease in Ghana: 
a qualitative study
Dora Abaah1, Lillian Akorfa Ohene1* and Charles Ampong Adjei1
Abstract
Background Hepatitis B is one of the most common viral (HBV)infections that affect the liver. Infection with the virus 
may result in varying severity of liver disease which may be acute or chronic. Though most people recover from the 
infection, about 5 − 10% of cases lead to chronic infection. Persons who develop HBV-related debilitating liver disease 
will likely require informal care from family caregivers.
Aim This study sought to explore the physical and social wellbeing of family caregivers of persons with hepatitis 
B-associated chronic liver disease in a tertiary hospital in the Central region of Ghana.
Methods This study adopted an exploratory, descriptive qualitative research design. We used a purposive sampling 
technique and a semi-structured interview guide to interview eighteen participants. The Quality of Life (QoL) model 
applied to family caregivers underpinned the study and guided the formulation of study objectives. Data analysis 
followed Braun and Clarke’s procedure for thematic content analysis. Similar codes were grouped into subthemes, 
and similar subthemes were grouped into major themes. The consolidated criteria for reporting qualitative research 
(coreq) checklist was used as a guide for writing the study.
Results Two major themes emerged from the study: physical wellbeing and social wellbeing. Seven subthemes were 
also identified: physical body changes and physiological body changes (physical wellbeing) and role strain, social 
isolation, financial impact, affection/sexual function, and support social wellbeing). These central themes aligned with 
two domains of the QoL model applied to family caregivers.
Conclusion Family caregivers of persons with HB-associated liver disease suffer ill health due to the burden of 
physical care for their sick relatives and neglect their health due to time constraints. They also experience role strain as 
they cannot attend to other family responsibilities and feel socially isolated since they spend all their time caring for a 
sick family member.
Keywords Hepatitis B, Family caregivers, Wellbeing, Ghana
*Correspondence:
Lillian Akorfa Ohene
lohene@ug.edu.gh
1University of Ghana, Accra, Ghana
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Abaah et al. BMC Primary Care           (2023) 24:82 Page 2 of 11
Background indicated that a lack of support from other family mem-
The Hepatitis B virus (HBV) is one of the most common bers significantly influences the health of family caregiv-
liver infections globally [1]. An estimated 2 billion people ers. Even though family caregivers frequently suffer social 
are infected with HBV, and about 296  million live with isolation and withdrawal, those receiving the most social 
chronic hepatitis B infection in 2019 [2, 3]. Most adults assistance have the lowest depression and caregiver 
infected with the virus recuperate, but 5-10% cannot stress. The high prevalence of hepatitis B infection in the 
clear the virus and become chronically infected. Most Central Region suggests increased chronic cases. Some of 
people with chronic infections have a mild liver disease these chronic cases are likely to progress to chronic liver 
with little or no long-term illness or death [4]. In 2019, diseases. Hence the need for support from family care-
HBV-related liver diseases resulted in an estimated givers. Therefore, this study aimed to explore the physical 
820,000 deaths worldwide [5]. Most of these deaths are and social wellbeing of family caregivers of persons with 
caused by cirrhosis and hepatocellular cancer [6]. hepatitis B- associated chronic liver disease.
Around 4% of the world’s population lives in areas 
where HBV infection is endemic [2]. HBV infection Methods
is highest in the WHO Western Pacific Region and the Study aim and design
WHO African Region, where 116  million and 81  mil- The study aimed to explore the physical and social well-
lion people are chronically infected [2]. In Africa, about being of family caregivers of persons with hepatitis 
8% of the total population has chronic HBV infection, B-associated chronic liver disease. The study adopted an 
which puts them at greater risk for chronic liver disease; exploratory, descriptive qualitative design. This design 
also, 30-50% of cirrhosis deaths result from chronic HBV enabled participants to share experiences about their 
infection [7, 8]. In Ghana, a systematic review by Abesig physical and social wellbeing in caring for a family mem-
et al. [9] revealed a prevalence of HBV, as measured by ber with HBV-related chronic liver disease [17]. The 
HBsAg seropositivity, to be 8.36%. A study by Blankson et theoretical framework of Quality of Life Model Applied 
al. [10] revealed that an estimated 40% of patients report- to the Family Caregivers model was used to explore the 
ing cirrhosis have HBV infection. The Central Region wellbeing of family caregivers of persons with HB-associ-
of Ghana has a hepatitis B prevalence estimate of 11.5% ated chronic liver disease. The model’s constructs helped 
[11]. The fact that some HBV infections progress to HB- explore the physical, social, psychological, and spiritual 
related chronic liver diseases suggests that patients are domains of the wellbeing of the family caregivers.
likely to require some form of informal care from fam-
ily members. A family caregiver is a person who provides Research setting
physical, mental, and financial support to a family mem- Participants were recruited from the Cape Coast Teach-
ber who is unable to care for themselves due to disease, ing Hospital (CCTH) in the Central region of Ghana. It 
accident, or disability [12]. Evidence indicates that illness is a public facility and serves as the main referral hospi-
affects the sick individual and the family [13]. tal in the region. Persons diagnosed with HBV infection 
Sherman [14] has reported that the family caregiver’s attended the hepatitis clinic on special clinic days in the 
needs are often overlooked, with the focus mainly on Outpatient Department. The clinic has an average atten-
the patient. Caregiving for a person with severe chronic dant of twenty patients. Patients who were critically ill 
illness generally entails physically demanding activity from HBV-related chronic liver disease were on admis-
over a long period. Caregivers are more likely to neglect sion to the Male or Female Medical Wards for further 
their health, which can result in musculoskeletal inju- management [18]. Persons who were not on admission 
ries, arthritis aggravation, and other chronic conditions. but looked critically ill were accompanied to the hepa-
As the sick person’s symptom burden increases, so do titis B clinic by their family caregivers. The CCTH Eth-
the caregiver’s physical requirements [15]. Patients’ ics Review Committee approved ethics on 26th October 
health and the health of their family caregivers have been 2020 (Protocol No. CCTHERC/EC/2020/091). The unit 
proven to be tightly linked, implying that supporting the in-charges permitted access to the unit for data collection 
caregiver’s health will benefit the patient’s health and vice to commence.
versa. Throughout sickness, the influence of caregiving 
on the social wellbeing of family caregivers is essential. Participants and recruitment
A family member diagnosed with HB-related chronic The participants in this study were family caregivers 
liver disease will most likely require informal care from who lived in the Cape Coast Metropolis and provided 
family members. The demanding and prolonged nature care for a relative diagnosed with HB-related chronic 
of informal care for a chronic illness may affect the fam- liver disease. The sick persons received treatment at the 
ily’s social structure [16]. Social support is, therefore, Cape Coast Teaching Hospital. Also, participants had to 
necessary to ensure caregiver comfort since studies have be at least 18 years of age. The study excluded employed 
Abaah et al. BMC Primary Care           (2023) 24:82 Page 3 of 11
informal caregivers who were not family related. Family four who did not have patients on admission chose their 
caregivers with difficulty in communication were also homes.
excluded from the study. A total of 18 family caregiv- Interviews lasted between 45 and 60  min. The inter-
ers, determined by data saturation, participated in the viewer used an audio recorder to record the discussions 
study [19, 20]. We used purposive sampling to recruit and took short notes while interviewing participants. The 
participants who met the inclusion criteria by contact- first author recorded participants’ nonverbal communi-
ing caregivers who provided informal care for their rela- cation as she interviewed them. She also noted the man-
tives diagnosed with HB-associated chronic disease and nerisms of the participants and anything of relevance in 
had accompanied the patients to the hospital. Eleven a field diary to help the researcher better understand the 
caregivers were providing care for family members with information gathered. Data reached saturation after the 
HB-related liver cirrhosis, two had patients with hepatic 15th interview[19]. Nonetheless, three more interviews 
encephalopathy, and one had a patient with hepatocellu- were conducted to ensure no new information emerged.
lar carcinoma. The remaining four were newly diagnosed 
and required frequent monitoring and treatment. Four- Research instrument
teen participants had relatives currently on admission to The research team developed a semi-structured inter-
the ward, and four had accompanied their relatives to the view guide to conduct face-to-face interviews with each 
OPD clinic for review. Data collection lasted from Octo- participant for this study. Two primary domains of the 
ber 2020 to February 2021. We visited the Outpatient QoL model applied to family caregivers by Ferrell (2001) 
Department and the Male and Female Medical Wards on informed the central questions in the interview guide. 
clinic days to meet and inform family caregivers about The sub-themes in the model formed the probes for the 
the study. specific questions. The interview guide was piloted with 
The purpose of the study was explained to each partici- two family caregivers caring for their relatives on admis-
pant, after which each signed a consent form to indicate sion for treatment at the CCTH before it was used for the 
their willingness to participate. Interviews then started, main participants [17]. This was done to ensure that the 
and probing was used to gather relevant information. The questions elicited the appropriate responses. However, 
interview venue was outside the Male or Female Medi- the reactions from the pilot test were not included in the 
cal wards and participants’ homes. Depending on their main study. Participants were mainly asked to share their 
convenience, interested participants were contacted experiences on their physical and social wellbeing since 
by phone to arrange a meeting day and venue. The par- they took up caregiving of a relative suffering from HB-
ticipants selected the venues based on convenience. related chronic liver disease. All interviews were con-
Fourteen participants who had patients on admission ducted by the first author.
preferred venues in the hospital, whereas the remaining 
Data analysis
Table 1 Demographic Characteristics of participants Thematic content analysis was done manually follow-
Participant Age Occupation Duration of Relationship ing Braun and Clarke’s procedure for thematic content 
(ID) (Years) caregiving
(Yrs) analysis [21]. The thematic content analysis enabled the 
P1 42 Teacher 2years Spouse researchers to analyze data based on the QoL framework. 
P2 48 Petty Trader 1year Parent After each interview, the researchers listened to the audio 
P3 35 Teacher 6months Spouse recordings and transcribed the interviews verbatim. We 
P4 51 Trader 1year Spouse read through the transcripts multiple times to familiar-
P5 35 Farmer 1 year Sibling ize ourselves with the data. The authors discussed the 
P6 36 Petty trader 2years Parent unique codes and categorized them to generate themes. 
P7 43 Trader 1 year Parent The authors discussed different codes and categories to 
P8 29 Artist 6 months Nephew reach a consensus on the identified themes. Themes and 
P9 63 Farmer 2 years Spouse subthemes were then defined and named.
P10 37 Mason 1 1/2 years Spouse
P11 65 Farmer 4 months Parent Results
P12 33 Cleaner 6 months Parent Demographic characteristics
P13 23 Hairdresser 1 year Parent This study involved 18 participants aged between 19 and 
P14 36 Trader 6months Parent 65 years. Other demographic characteristics are pre-
P15 37 Mechanic 1 year Sibling sented in Table  1. The participants were all Ghanaians 
P16 32 Statistician 6months Sibling living in the Cape Coast Metropolis. All participants 
P17 19 Apprentice 4months Sibling were married with children except for one participant 
P18 55 Businessman 1year Spouse who was single with no child. Among the 18 participants, 
Abaah et al. BMC Primary Care           (2023) 24:82 Page 4 of 11
6 were spouses, 7 were parents, 4 were siblings, and 1 was up and down, I sometimes forget to eat, and some-
a nephew. All participants had rendered care between times too by the time I get home it is late, so I can’t 
4 months to 2 years. Thirteen participants were self- eat. I have reduced in weight “(P5).
employed as businessmen, artisans, farmers, beauticians, 
and petty traders. Two participants were public servants, The participants also raised concerns about their unmet 
two were in private practice, and one was an apprentice. physical needs. For example, many of them felt that the 
health needs of their sick relatives outweigh their need to 
Themes and subthemes attend to their grooming. Therefore, only some caregiv-
Table  2 presented the two major themes and six sub- ers can visit hair salons, barbershops, or beauty spas.
themes identified from this study. The major theme, 
physical wellbeing had its sub-themes identified as, phys- “Ei madam there is nothing like physical wellbeing, 
ical body changes and physiological body changes. Under especially anytime he gets seriously sick. Look at 
the major theme of social wellbeing, subthemes were my hair, I have been wearing this wig cap for a long 
identified as role strain, social isolation, financial impact time. No time to even visit the salon” (P1)
and support and affection/sexual function. “I wish to visit the barber and look at my hair. I spend all my time here at the hospital” (P16).
The physical wellbeing of family caregivers
According to the participants’ narratives, the demands Taking up a caregiver role was a sacrifice and a com-
and burden of caring for adult sick persons are complex promise of meeting personal health needs. Some par-
and physically exhausting. Additionally, the chronicity of ticipants stopped visiting the gym, doing early morning 
hepatitis B-associated liver disease prolongs care, with walks, or jogging to make time to care for the sick. These 
related consequences on the caregivers’ physiological participants reported that they could see noticeable 
functions. The findings under physical wellbeing were con- changes in their bodies due to the lack of exercise.
cerns the caregivers raised about the body changes since 
they assumed the caregiver roles. “I used to visit the gym for training, but now I cannot do so because of a lack of time since I have to be with 
my uncle most of the time. I can see that I am losing 
Physical body changes
The participants reported several physical bodies form; my body shape has changed” (P8).
changes such as weight loss, poor personal grooming, “My inability to go for my usual early morning walk 
and change in their physique. For example, most partici- is making my body posture change” (P18).
pants reported weight loss because of their engagement 
in physical caregiving activities, including carrying and 
lifting the sick and helping the ill achieve primary care Physiological changes
needs such as bathing and feeding. The caregivers also The participants reported physiological changes as a 
became errands persons for the sick, and in that regard, shared experience in caregiving. These changes included 
they ensured that the sick met all hospital and other loss of appetite, nausea, constipation, fatigue, inadequate 
essential care commitments. According to the partici- sleep, and body aches and pains. The loss of appetite was 
pants, meeting the physical needs of ill persons mainly mainly associated with the severity of the patient’s con-
was to the detriment of their wellbeing. dition, increased care demands, and hospitalization. For 
“I support him to go everywhere. For these two example, some participants reported that the environ-
months, I hardly slept for more than 2 hours because ment and smells from the hospital caused them to lose 
of his frequent visits to the toilet. I have lost weight their appetite. According to them, unpleasant sights and 
because of that” (P4). odors in the hospital caused nausea. Some also indicated 
“Taking a car in and out all the time to the hospital that washing dirty linen and cleaning up their sick rela-
is a very tiring task for me. Because of the movement tives gave them vomiting symptoms.
“Madam, as for the appetite, it’s not there. I am 
Table 2 Summary of Themes and Subthemes unable to eat in the hospital environment because of 
THEMES SUBTHEMES the smell of the chemicals they use for cleaning” (P3).
PHYSICAL WELLBEING Physical body changes “I have no appetite for food, especially when he is 
Physiological changes seriously sick” (P14).
SOCIAL WELLBEING Role strain “Yes, I experience nausea most of the time because 
Social isolation of the hospital smell, besides, I must clean her up 
Financial impact and support and empty her vomitus. I also wash her dirty clothes 
Affection/Sexual function
Abaah et al. BMC Primary Care           (2023) 24:82 Page 5 of 11
which are soiled with urine. Madam, I see so many “In the evening, when I visit him and spend the night 
disgusting things in the hospital” (P1). at the hospital, since I am sleeping outside there are 
“The hospital scent makes me feel like vomiting I a lot of mosquitoes so I am unable to sleep but when 
mostly have saliva in my mouth” (P6) I get home I can sleep for a while” (P8).
“I think a lot these days, so I cannot sleep soundly. 
The consequences of not eating well were evident in My wife is not the same anymore; her abdomen is 
their physiological functioning as most of the partici- swollen, she is growing lean, and there is no improve-
pants recounted that constipation was one of their major ment in her condition” (P9).
physiological changes. Almost all the participants who 
reported constipation associated it with inadequate food Bodily aches and pains were also some frequent occur-
intake and lack of decent toilets, which necessitate that rences reported in caregiving roles. They ascribed these 
they practice deliberate bowel control by suppressing the aches and pains which they experienced to the lifting and 
urge to use the toilets. carrying of their sick relatives. Most of the participants 
“I mostly get constipation. My inability to eat and practiced self-medication to manage their aches and 
not to get a good place of convenience makes it dif- pains.
ficult to visit the toilet like I usually do” (P1). “My son is mostly weak, so I assist him with almost 
“Because I cannot eat as I used to, I cannot visit the everything, bathing, washing clothes, and supporting 
toilet as I used to” (PI6). him to walk around, and now, I am sick. Currently, I 
have body pains all over” (P7).
Fatigue was an experience shared by most family care- “I mostly get body pains. She can’t get up by herself, 
givers. Participants recounted getting tired from carry- so I assist her and help her eat by serving her while 
ing out care activities, including feeding, bathing, and she feeds herself. Regarding bathing, I take the water 
grooming, assistance with patient ambulation, communi- to the bathroom and assist her to the bathroom to 
cation, and handwashing of clothing as part of the care- bathe. I also wash her clothes every day” (P17).
giving process. “I mostly have headaches and body pains, so I visit the nearby drugstore to purchase some pain reliev-
“Yes, I am human, and running errands daily makes ers” (P8).
me tired. Sometimes, walking to and from the phar-
macy is very stressful, even in the hospital” (P11).
“It is not easy at all moving up and down the hos-
pital; at the end of the day, I feel so tired with body Social wellbeing of family caregivers
pains all over. Sometimes I even have to carry her on Caregiving poses a challenge to the social wellbeing of 
my back” (P12). family caregivers. The family caregivers reported isola-tion, role conflicts, financial burden, and employment 
challenges. These were identified under four subthemes: 
Participants reported that sleep disturbance was another role strain, social isolation, economic impact and sup-
physiological change that affected their physical wellbe- port, and affection/sexual function.
ing. According to them, keeping vigilant over the sick 
during night hours was one of caregiving’s most challeng- Role strain
ing and daunting tasks. In this study, it was revealed that Most family caregivers admitted that caring for a sick rel-
the participants stayed awake to keep watch over their ative made it difficult to perform other socially assigned 
sick relatives during critical times. roles, including parenting, marriage, and occupation. 
“If I say I’ve slept for 2 hours, it’s a lie because of his Family caregivers who had children could not give their 
frequent visits to the toilet at night. Sometimes he children the needed attention.
would get up, and other times I will have to take him “Everything is a mess; if my husband and eldest 
there” (P4). daughter are away, my children walk about with-
out help or knowing what to do. I used to wash their 
Others reported sleep interruptions due to mosquito clothes, cook, and many more, but now I do not have 
bites when they slept in open places at the hospital. Some time” (P7).
caregivers associated their sleeplessness with excessive “I do my best not to neglect my other son, but when 
thoughts, anxieties, and worries about the poor health my daughter is admitted, and my husband has trav-
status of their family members. eled, I send him to my sister” (P12).
Abaah et al. BMC Primary Care           (2023) 24:82 Page 6 of 11
The caregivers who were married and cared for other sick my sister” (P17).
relatives also reported some strain in their relationship “Sometimes my heart feels so heavy that I wish I 
with their spouses. For example, some of the participants could speak to someone or any of my friends, but the 
spent several days out of their homes during the hospital- thought of what will follow next, the stigma, stops 
ization of their sick relatives. me” (P1).
“My wife is in the North and came down recently for 
a visit, but I couldn’t make time for her, and she was 
not pleased with that. I pleaded with her to give me Financial impact and support
some time to care for my brother. She agreed and Most family caregivers disclosed they had some form 
went back to the North, but I could sense he was not of financial challenges. The reasons for these challenges 
so happy” (P16). included the inability to go to work to make money, the cost of care outweighing their income, and the lack of 
financial support from significant others. Although some 
Some family caregivers had to find alternative arrange- family caregivers admitted receiving support from signif-
ments to delegate their usual responsibilities in their icant others, this support was insufficient to relieve them 
businesses and family matters to others so they could be of the financial burden. Most participants indicated that 
able to give care to their sick family members. they had to stop working for some time to care for their 
“For some time now, I have had to entrust my busi- sick relatives, which increased their financial burden.
ness to someone I can trust to be with my wife to “Being here to care for my wife has affected my work. 
care for her” (P18). I cannot go to work; even when customers call, I have 
“Any time I have to come with him to the hospital, I to direct them to other shops. All the money I had on 
ask permission from my headmaster, or I swap my me is finished, and she is not better” (P10).
teaching period with another teacher” (P3). “I don’t even think about my work because I know 
everything will be fine if my brother gets better. Even 
if we work or not, only God takes care of us” (P5).
Social isolation
Caregiving restricts family caregivers from enjoying their Family caregivers who were employees revealed they had 
everyday social life. Usually, families’ daily social activi- to ask for permission from their employers or swap duties 
ties include visiting families and friends, receiving visi- as ways of alternative work arrangements. Other partici-
tors, and attending social festive events and ceremonies. pants took casual leave from work to care for their sick 
Several participants indicated their inability to see others relatives. They reported that their absence from work had 
or receive visitors because of lack of time. severe financial implications, as some reported pay cuts.
“I do not visit anyone. Someone told me he had “Financially, it has not been easy, the company my 
stopped visiting me because of my sick daughter” brother works with pays all his medical bills, but 
(P13). the issue is that I cannot work and make money for 
myself. I work on a contract basis, but now I cannot 
Family caregivers revealed that they spent most of their go to work. Financially I am hard-pressed” (P16).
time attending to their sick family members, depriving 
them of any leisure time to engage in and enjoy social The cost of medical care for Hepatitis B was expensive, 
activities. and this led to financial difficulties. The caregivers indi-
“Whenever he is sick, there are social programs cated that the national health insurance scheme did not 
like funerals and weddings; I cannot attend since I cover most drugs prescribed. The patients and families 
always must be with him” (P6). bear the cost of treatment alone with no support from the healthcare system.
Some family caregivers reported needing help to keep up “Every month we visit the hospital to purchase 
with social events or even following up on local news in some medications prescribed by the doctor and go 
the media. Some said their fears of becoming lonely even for some laboratory test which includes liver test. 
amid people. Madam, it hasn’t been easy in terms of purchasing the drugs” (P2).
“I feel lonely because I have no one to talk to, and I “It has been stressful in terms of finances. From buy-
am always here alone in the hospital, taking care of ing medication, paying for laboratory investigation, 
Abaah et al. BMC Primary Care           (2023) 24:82 Page 7 of 11
and transport fares “(P3). would be deprived of affection as one spends time in the 
“There is no help from anywhere. I have four sons, all hospital.
depending on me, and now even the little we have to 
use for food has to be saved to buy drugs. It has not “Madam, my appetite for sex has gone on an 
been easy, and currently, there has been an incre- extended holiday (smiles). I want him to conserve his 
ment in the price of the medications. My husband energy, so I don’t worry him about sex like I used to 
has no better support, so I am facing financial dif- do. I only make demands occasionally when I see he 
ficulty” (P2). is better” (P1).
“It has affected our sex life as a couple. Seeing her 
Participants indicated financial support and support with alone makes me sad I want her to get well, so sex is 
the physical care of the care recipients as very necessary. not on my mind now” (P9).
Participants reported receiving financial aid and help 
with physical care from their family and other sources, Some participants who provided care to family mem-
which have been very helpful. A few participants admit- bers other than their spouses reported that their spouses 
ted that support in diverse forms from other people was were equally worried, so they did not burden them with 
essential for their social wellbeing. sexual demands. Others did not have the support of their 
“My mother is helping to put things in order. I have spouses and hence reported a strain in their relationship 
two other children who are also working and earning with their spouses.
something to support my mother, wife, and employed “Madam, when there is happiness, you can have 
children are all helping, so in terms of financing, we time for pleasure as a couple. Currently, the thought 
are a little stable” (P11). of fun is not in our minds because anytime we go to 
“My husband’s family members are all doing their bed, the only thing we do is think about the wellbeing 
best by contributing some money to help us care for of our son” (P7).
him. Now the family’s money is finished. It’s up to me “I spend the night at the hospital, return home in the 
when he needs anything; only God can help me” (P4). morning, and return to the hospital in the afternoon. 
“One of our daughters helps with bathing, feeding, It has affected our sex life, but we understand each 
and other things. It has helped me” (P9) other because of the current situation with my uncle. 
It has not affected us” (P8).
However, most participants reported a lack of support to “Since my daughter was diagnosed with this ill-
provide physical care and inadequate financial support. ness, my husband has changed. I think it is because the girl is not his real daughter. He makes sexual 
“Now I am in a difficult situation with someone demands, not caring whether I am tired. Sometimes 
to help. Because I am caring for her, I cannot go to when my daughter is very ill, and I want to sleep 
work. Her father is far away, but her mother is not beside her at night, he will refuse” (P13).
on good terms with us, so since her daughter got sick, “Sometimes my daughter was seriously sick, and he 
she has never visited her before” (P10). was making sexual advances. I told him I was not in 
“Financially, it has not been easy, we are both the mood because I worried about my daughter. He 
mechanics, and now that he is sick, everything is on got upset with me” (P12).
me. Once in a while, some friends and family mem-
bers bring something small, but it just does not get 
anywhere” (P15). Discussion
This study explored the physical and social wellbeing of 
family caregivers of persons with hepatitis B-associated 
Affection/sexual function chronic liver disease. Our findings have shown that 
Family caregivers asserted they experience challenges family caregivers encounter physical and social chal-
meeting their affection and sexual functioning needs. All lenges while providing care due to the demanding and 
the participants but one was married, and they admitted prolonged nature of the disease. The physical difficul-
that mostly, their sexual needs were unmet. For example, ties included physical and physiological changes, mainly 
family caregivers caring for their spouses reported they due to the demanding nature of caregiving. The nature 
had to suppress their sexual desires since their spouses of caregiving makes family caregivers focus on the care-
were consciously sick. When the caregiver was providing giving task to the detriment of their physical wellbeing. 
care to another family member, the caregiver, and spouse Regarding social challenges, role strain, social isolation, 
financial impact, affection/sexual function, and support 
Abaah et al. BMC Primary Care           (2023) 24:82 Page 8 of 11
were the areas of concern to the participants. Family caregiving responsibilities. Wittenberg et al. [27] report 
caregivers spend a significant amount of their time pro- similar findings that the obstacles influencing family 
viding care. They had little or no time for leisure and caregivers’ physical wellbeing include; aches and pains 
other family roles. They suffered financial challenges from providing physical to patients. Another study also 
since they had little or no time to work. Also, the lack of said that caregivers lacked the requisite knowledge in 
financial support worsened their financial burden. applying body mechanics and lifting techniques while 
Physical and physiological body changes that fam- providing care, which inadvertently resulted in body 
ily caregivers experienced, which affected their physical pains[28]. Family caregivers should be educated on the 
wellbeing, were stated as; weight loss, inadequate per- use of body mechanics and appropriate lifting techniques 
sonal grooming and change in physique. Fatigue, sleep- to help prevent or reduce body pains.
lessness, loss of appetite, aches/pains, and constipation Sleep disturbance was another experience revealed 
were also reported. The physical effect of caregiving can in this study that affects the physical wellbeing of fam-
manifest in symptoms of sleep disturbance, gastrointes- ily caregivers. Family caregivers encountered disrup-
tinal disorders, fatigue, loss of strength, and weight loss tions in sleep in the caregiving trajectory. This finding 
[22]. Northouse et al. similarly said that caregiving has a is consistent with similar results, which reported sleep 
bearing on family caregivers and can adversely affect the disturbance as one of the problems associated with fam-
caregivers’ health outcomes [23]. The stress associated ily caregiving [29]. Being constantly awake made family 
with caregiving is often evident in the decline of the fam- caregivers susceptible to tiredness and other physical 
ily caregiver’s health status. After taking up the caregiver challenges. Also, family caregivers experienced sleep dis-
role, caregivers’ health significantly worsened. turbances as they mostly kept awake worrying about the 
Concerning physical changes, deterioration in physi- state of health of the care recipient. Though providing 
cal health was shown in this study partly due to physical care for a family member meant inadequate time for the 
exertions in caring for the family member, less time avail- caregiver’s upkeep, the lack of a suitable place to sleep 
able for exercise, and preparing healthy meals. Burton compounds the problem of sleeplessness. It is worth stat-
et al. identified that many caregivers reported concerns ing that support from significant others to family caregiv-
about a burden on their time as they must adjust their ers in performing caregiving tasks is vital to improving 
schedules and relinquish valued personal activity. The their sleep quality and physical wellbeing.
family caregiver’s primary focus is the sick family mem- Another finding from this study revealed that family 
ber. Caregivers usually have inadequate time to cater to caregivers experience a loss of appetite in the care trajec-
their unique needs, which invariably causes a decline tory. For example, the hospital environment and its asso-
in physical health [24]. They plan their lives accord- ciated odor caused loss of appetite in some participants, 
ing to the patient’s schedules and conditions and do not which inadvertently resulted in weight loss [22]. The 
have enough time to care for their needs [24]. This sug- physical stress associated with caregiving also resulted in 
gests that family caregivers should be encouraged to be weight loss in most participants. Other participants out 
attentive to changes in their physical wellbeing and seek of worry about their relative’s illness, could not eat. This 
appropriate assistance. This will help caregivers continue mostly led to constipation, as revealed in this study [22]. 
providing care without compromising their health [23]. Support for family caregivers in the form of practical 
Regarding physiological changes, the research find- assistance from both formal and informal sources would 
ing further identified that family caregivers suffered help alleviate the challenges that come with caregiving 
fatigue from assisting the care recipient in performing [22, 30].
various tasks such as feeding, personal hygiene needs, Isolation, role adjustment, financial stress, occupation 
and ambulation. This finding is congruent with Nielsen problems, leisure, and affection/sexual function were all 
et al. [25] that the prolonged nature and extensive tasks highlighted by participants as they discussed their social 
the caregiver performs can cause caregiver fatigue. The wellbeing. These were grouped mainly under; role strain, 
physically demanding care tasks leave the family caregiv- social isolation, financial impact, affection/sexual func-
ers exhausted and affect their quality of life in physical tion, and support. Regarding role strain, the study’s find-
wellbeing [26]. Family caregivers are said to suffer from ings revealed that most family caregivers struggled to 
tiredness, anger, depression, a sense of helplessness, guilt, combine caregiving with other roles and responsibilities. 
isolation, loss of freedom, fear, vulnerability, and neglect Again, caregiving competes with leisure time, usually 
of their health. It is suggested that other family members spent with family members to help sustain healthy fam-
should be encouraged to share caregiving tasks and to ily relations [31]. For example, caregiving made it diffi-
support the family caregiver to help prevent fatigue. cult for family caregivers who were parents to adequately 
It was revealed in this study that family caregivers attend to the needs of their children [32]. Some family 
usually experienced aches/pains with the magnitude of members often felt stuck in the caregiver role, resulting 
Abaah et al. BMC Primary Care           (2023) 24:82 Page 9 of 11
in conflicts with their personal and work lives. The time spouses. On the other hand, a few caregivers indicated 
required for caregiving deprived caregivers of time to improved relations with a sick family member since the 
care for other family members [32]. It is important that caregiving made them spend most of their time together. 
family caregivers make conscious efforts to seek help Family caregivers stated varied reasons for these changes 
from other family members periodically. This would give in affection/sexual function. Bauer [31] confirms that a 
the caregivers time to cater to other responsibilities. longer care duration can result in marital dissatisfaction. 
The study further revealed that family caregivers could Some family caregivers experienced decreased libido 
not enjoy their social life and felt socially isolated. Simi- associated with sadness and anxiety. Other family care-
lar findings have indicated that family caregivers caring givers had a decreased libido due to the physical changes 
for sick relatives and other family members have limited in their spouse resulting from illness and treatment. The 
time and have truncated social networks to be able to impaired relations between spouses and other close ties 
provide care [33]. Family caregivers stand a higher risk of can also be related to fear of infection transmission. For 
experiencing social isolation [34]. Family caregivers had example, family caregivers caring for their spouses hesi-
limited social engagements because they spent most of tated to have intimate sexual relations, as revealed in 
their time on caregiving tasks, negatively impacting their this study [43]. This implies that much more education 
social wellbeing [35]. This suggests that it is essential to is needed especially on the transmission of hepatitis B to 
create social support groups and encourage family care- help reduce fear and stigmatization [11, 44].
givers to join these groups to enable them to have access The findings from this study identified support as an 
to resources aimed at reducing the feeling of isolation essential component in promoting the social wellbeing 
and enhancing their social wellbeing [36]. of family caregivers. The study revealed that most family 
Regarding financial impact, the study also revealed that caregivers desired support in several ways while provid-
almost all family caregivers experienced economic chal- ing care that was lacking. However, some caregivers in 
lenges of varying degrees. Participants indicated that the this study reported receiving financial support from other 
cost of treatment posed a tremendous financial burden. family members, Non-Governmental Organizations, and 
Similar findings have emerged from other studies that friends to help cater to the cost of providing care [45]. In 
financial burden and insufficient resources are the main a related study, family caregivers repeatedly requested a 
factors associated with caregiver burden [37, 38]. Sarris resource they could use without the patient, specifically 
et al. [24] also identified that economic challenges are tailored to their needs as caregivers [46]. However, most 
the worst aspect of family caregivers’ experience. Care- healthcare delivery policies focus mainly on the sick indi-
giving impacts the caregiver’s employment which sub- vidual with little or no support for family caregivers [47]. 
sequently affects their income. As revealed in this study Empirical data suggests that having more formal social 
and some studies elsewhere, most family caregivers had support, such as nursing homes, transportation, support 
to give up or reschedule their work to be able to pro- groups, and financial aid, can help patients and caregiv-
vide care for their sick relatives [39]. Some family care- ers cope with their responsibilities[48]. It was revealed 
givers forfeit employment and their career indefinitely that support from significant others to family caregiv-
to provide care [24, 40]. Most employed family caregiv- ers in providing physical care is necessary to ease the 
ers experienced difficulty managing their paid work and challenges associated with caregiving. Some male par-
caregiving responsibilities. Similarly, Gardiner et al. [41] ticipants who were caring for their spouses sometimes 
reported that the financial costs of caregiving were sub- enjoyed support from other female relatives in the area of 
stantial. This suggests that family caregivers should be physical care. This corroborates with Bertogg & Strauss, 
aware of the direct and indirect costs involved in treat- who identified that husbands are likelier to share caregiv-
ing their sick relatives. This will help them prepare for ing with an informal helper, while wives are potential sole 
the financial challenges ahead [42]. The high cost of care caregivers [49]. This suggests more robust advocacy for 
stated previously reiterates the need for financial support policies that will aim at reducing the cost of treatment 
and adequate insurance coverage. Also, workplace policy and a total insurance cover for the prevention and treat-
reforms on reducing salaries with absence from work ment of hepatitis B infection. Also, the provision of infor-
should exempt employed family caregivers [24]. mal care should be a shared responsibility for all family 
The study further identified that the affection/sexual members to reduce the burden on family caregivers.
function aspect of the family caregiver’s life is affected 
while providing care. Family caregivers who doubled as Strengths and limitations of the study
spouses had conflicts with their spouses due to neglect of This study is among the few on family caregivers of per-
the needs of the spouses. As reported in this study, family sons with HB-associated chronic liver disease in Africa. 
caregivers who cared for their spouses had to consciously A limitation of the study was the lack of opportunities to 
suppress their sexual feelings out of compassion for their provide some basic interventions such as education on 
Abaah et al. BMC Primary Care           (2023) 24:82 Page 10 of 11
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