Study design

An exploratory, descriptive qualitative approach was used to explore the perspectives of burden among FCs of patients living with ESLD and their motivations for care provision. An exploratory design was used, given the lack of previous research investigating the burdens and motivations of FCs of ESLD in SSA, specifically Ghana.

Study setting

The study was conducted at Tamale Teaching Hospital (TTH), the largest hospital in northern Ghana with a bed capacity of 800. It serves a catchment area comprising about 2.5 million people. TTH was established as a medical referral centre to cater for several regions in Ghana. Additionally, it serves neighbouring countries, including Côte d'Ivoire, Burkina Faso and Togo. TTH has a specialised unit for internal medicine (endocrinology) where patients diagnosed with ESLD are managed.

Study population

FCs of patients diagnosed with ESLD in the Northern Region of Ghana were the target population for this study. The study recruited FCs to provide care to patients with ESLD admitted to the ward. The ward in-charge identified eligible FCs and facilitated recruitment. The ward-in-charge informed FCs staying with the patients admitted to the ward about the study. They were given study details, and interested FCs were directed to meet the first author at the ward-in-charge’s office. The first author thoroughly explained the study’s purpose and procedures and the informed consent process before obtaining consent.

Participant eligibility

Sampling method and sample size

A purposive sampling technique was used to recruit participants who met the inclusion criteria.15 This helped to enrol participants who had experienced the phenomenon under study. The first author contacted potential participants face-to-face and explained the purpose of the study to them after study approval from the hospital’s management. Only FCs who voluntarily consented to participate in the study were recruited. The notion of data saturation informed the sample size, enabling the researchers to concentrate on obtaining varied information.

Data collection tool and procedure

Face-to-face in-depth interviews using a semi-structured interview guide (refer to online supplemental appendix S1) were used to collect data.16 Data collection occurred between January and March 2022. The interviews took place in the ward-in-charge’s office, chosen for its convenience and conducive atmosphere for the participants, and mainly in the afternoons when the ward was less busy. All the participants consented to the study by signing (12 participants) or thumb-printing (three participants). In total, 15 in-depth interviews were primarily conducted in English (10) and Twi (5), with each session lasting between 45 and 60 min. During the interview, open-ended questions with probes were used to allow the participants to express themselves fully, and the interviews were audio-recorded. Field notes were taken during and after the interviews. Data saturation was confirmed after the 15th interview (the first author, JDD, with post-graduate research experience, perceived that the interviews’ content was becoming redundant and that no new information was being revealed); two more interviews were conducted to ensure saturation had been reached but were not added to the analysis. The interviews were facilitated by the first author (JDD), who has post-graduate research experience.

Data analysis and management

The first author manually conducted data analysis concurrently with data collection using thematic content analysis. At the end of each interview, the first author manually transcribed the audiotape recording verbatim into written words to facilitate analysis. Five interviews were conducted in a local dialect, Twi, first transcribed in Twi by the fourth author and then translated into English by the fifth author. The remaining ten were conducted in English. The translated versions of the interviews were discussed with the third and fifth authors, who are both fluent in Twi and English, to ensure the accuracy of the transcribed data. The thematic analysis approach by Braun and Clarke17 was used for data analysis as follows:

Rigor

Rigor addressed credibility, transferability, conformability and dependability in the study using Lincoln and Guba’s approach.18 To ensure credibility, member checking was done immediately after the interview, where key points were summarised, and audio recordings were replayed for participants to verify their responses. Transcripts were provided the next day to allow participants to review and confirm that they accurately reflected their views. An accurate and detailed account of the research context and participants’ backgrounds, data collection and study findings was explicitly provided to achieve transferability. The data were coded and categorised into major and subthemes to ensure confirmability. The researchers’ comprehensive account of each stage of the research process and the transparent data analysis process accomplished the study’s dependability.

Findings

This study’s participants were 15 FCs who provided care to their relatives admitted to the TTH with ESLD.

Participant characteristics

The majority of the participants (n=10) were males, were married (n=9) and were working (n=12). Most of the participants reported religious affiliation with Islam (n=9) and were >30 years old (n=9) (see table 1).

Themes of the study

Thematic content analysis yielded two main and seven themes: FCs’ burden and FCs’ motivation. The themes and their sub-themes are shown in table 2.

FCs’ burden

This theme encompasses the physical, financial, psychological and social stress that comes with providing care to a family member who has been diagnosed with ESLD. It highlights the profound challenges faced by caregivers as they navigate the demands of caregiving.

Physical burden

This sub-theme outlines the physical toll of caregiving on FCs, mainly due to the frailty associated with ESLD. Physical burden is imposed by the direct demands placed on FCs by patients’ inability to perform physical activities such as bathing, walking without assistance and grooming. Participants reported assisting patients with these daily activities as integral to their caregiving role.

She cannot do anything by herself, everything depends on me. I carry her to the washrooms and bathe her as well, groom her, clean her mouth, feed her and even assist the nurses in changing her position in bed so it is not easy for me at all. (FC3)

Similarly, FCs indicated they faced fatigue from high-energy caregiving duties, particularly when care recipients were highly dependent. Running errands for medications, wound dressings and food added to their direct caregiving tasks. The non-functional lift in the hospital facilities forced participants to climb numerous stairs and cover long distances, contributing to exhaustion and stress. Additionally, the need to search for prescribed items in different locations increased the physical demands on FCs.

… every morning, I make sure she bathes, changes her clothes, gets her food, and feeds her, if blood samples are taken, I take them to the lab for the investigation and I carry out the activities of daily living. My patient is on the third floor and the elevator isn’t working so I came down for medical supplies using the stairs and that is tiring. (FC4)

… my patient feels very weak and is unable to perform any activity because of the abdominal distention and significant weight loss, I therefore work more than my strength. I feel tired because I am not used to this type of stress…it is just too much for me. (FC11)

FCs frequently reported experiencing health issues associated with their caregiving role. These problems encompassed general body pain, sleep disturbances, fatigue, a gradual decline in physical abilities and increased susceptibility to infections such as malaria. A male caregiver, responsible for his mother’s care, specifically noted contracting malaria due to continuous exposure to mosquitoes in the hospital environment. He narrated his experience as follows.

My physical abilities have declined over time… can you imagine staying in the hospital overnight outside? Because my mother is in the female’s ward anytime the nurse comes to perform procedures on the other patients, they drive me away. I have been sleeping in the open and mosquitoes have been “chewing (biting)” me till daybreak. I am currently battling with malaria and on malaria treatment. (FC4)

Some FCs opted to spend the night in the hospital so that they could offer the required assistance when it was required. However, they found this challenging because the hospital lacked accommodations for caregivers. Other FCs reported that they resorted to sleeping outside the wards, sometimes on the floor or in chairs close to the patient’s bedside, which they indicated affected their overall health.

I do not have a place to sleep because the security always drives us, the caregivers out of the ward at night. So, we sleep outside on the floor of the veranda, and I know I will fall sick because of the exposure to cold weather and mosquitoes. (FC2)

Likewise, FCs stated that the frequent waking up to check on their patients and the constant thinking about the outcome of their patients’ conditions were factors that hindered their ability to sleep well.

I wake up multiple times in the night to check on the patient and at times the nurses come to work on her, which normally awakes me. I have developed a headache, and I think it is a result of my interrupted sleep. I am even afraid that I might get hypertension, but the last time I checked my blood pressure was within the normal limits. (FC4)

On the other hand, participants found it challenging to stay continuously on the hospital premises because they needed to balance their regular jobs with caregiving responsibilities. Early awakening was an equally significant factor reported by caregivers to have affected their sleep patterns. Caregivers who slept at home needed to report to the hospital early enough to perform their roles before the nurses and doctors commenced their work on the patient.

…because the up and down, travelling every dawn from Saboba to Tamale and back is not a small journey… about 100miles. I normally wake up very early so that I can come to the hospital to bathe the patient, change her clothes and feed her before they drive us (caregivers) out of the ward. I feel fatigued most times so my role as a caregiver is affecting my physical health. (FC12)

Another FC intimated that his care receiver’s failure to perform their activities of daily living (ADLs) added to his sleep deprivation. He reported having an intermittent sleep pattern because of addressing the needs of the patients during nighttime.

… the patient cannot do anything by himself, so everything depends on me, I bathe him, brush his teeth and so on even at night I wake up frequently to cater to the patient’s calls. (FC7)

Additionally, the distress of a loved one because of the sickness was cited by participants to affect their sleep patterns.

… I was able to sleep up until 3 a.m. when I woke up at 3 a.m. I could not close my eyes again; my mind was just on her because no one was there to sleep with her. So, I was just there thinking now how is the condition…how is the condition now? (FC3)

According to some participants, their inability to sleep was the cause of specific health challenges they had. Headache and development of hypertension were some conditions attributed to their inability to sleep well. This is contained in the following narratives. A male caregiver feared his inability to find a comfortable place to sleep accounts for the headache he is suffering and could also lead to the development of hypertension.

The hospital environment is not a place you sleep very well I do not have a bed here, so I sit overnight without closing my eyes. At times I just take a nap for 2-3 hours and return. I am developing a headache, and I think it is a result of my inability to sleep well. (FC4)

…since my father was admitted I have not had a comfortable bed to sleep on and anyone who has a problem with sleeping will have an impact on the person’s health. (FC15)

Some FCs stated that the range of activities they undertook as caregivers for the well-being of their patients made them suffer some setbacks in their physical health, including general body pains and pains in the neck regions. A male FC who provided care to his father, diagnosed with ESLD, reported that he experienced pain around his neck due to and fro movement that is associated with his caregiving role.

Even as I speak with you now… I am experiencing some pains in my neck because I am not used to moving like this and from yesterday up till now, I am not just myself. (FC10)

Economic burden

Financial constraints were expressed by nearly all the FCs as a significant burden. FCs reported that they provide financial care to their care recipient from their savings, affecting their finances. Participants stated that their financial difficulty was linked to various treatment expenses, including medicines, diagnostic tests, diapers and non-medical costs, such as transportation to and from the hospital and the referral centres and buying food. This was a significant obstacle, as demonstrated by claims made by some of the respondents, who stated the following:

Financially, it has affected me in the sense that some things I did not budget for end up spending on them, I normally draw my budget at the end of the month thus what I will spend and the amount I will save but as of now I am eroding my savings to provide care to my patient. (FC9)

Participants indicated dissatisfaction with the limited coverage of the National Health Insurance Scheme for diagnosing and treating patients with ESLD. This led to out-of-pocket expenses for patients and FCs, who had to pay for OPD cards, folders, consultations, laboratory tests and medications. FCs often had to bear the full cost or provide top-ups before their patients could receive these essential services. An FC responsible for his mother, diagnosed with ESLD, highlighted these challenges.

In terms of my finances, playing the position of a caretaker has had an impact. Although my mother has active health insurance, I was requested to pay 13.00 cedis for the OPD card and 130.00 for the folder and consultation as soon as we arrived at the records department. Almost all the medications and lab tests have been paid for by me. I am practically paying for all the services provided to my mother. (FC4)

In furtherance, FCs, especially those in the informal sector, reported that their inability to generate income while performing their caregiving duties depleted their savings, compelling them to contract loan facilities to care for the patient. Magdalene, an FC providing care to her patient, reported that

…this caregiving role has affected me very much, my financial situation is nothing to ride home about, I must even take loans and other things to care for him. (F2)

FCs who participated in this research also reported sales of personal effects. Some participants stated that they had to sell their personal belongings to pay for some crucial services at the hospital. A male FC disclosed that he sold some personal belongings to support the treatment of the care recipient’s condition.

Certain times, you pick items from your house and sell them to support in my care recipient treatment. If I sell my property to take care of him and he recovers from the sickness, it is better than the physical wealth. (FC12)

Another factor that FCs cited as adding to their financial constraints is non-treatment costs, such as transportation to the hospital and provision for the upkeep of their respective homes, some of which they used to co-perform with the care recipient. One participant narrated that

… as I am here, I should have been at work to get money to support the family, and you know, women, every morning you have to give something out to keep my family going. (FC6)

Additionally, the progressively deteriorating state of health of patients diagnosed with ESLD makes them unable to perform ADLs, therefore requiring continuous assistance from the FC. The accompanying frailty of the patient’s condition limits the mobility of the FC relative to attend to their business.

I am getting a lot of calls from my customers requesting goods but my inability to travel is affecting my business I cannot leave the patient because he is not able to do anything by himself. (FC15)

Psychological burden

The psychological burden was reported by FCs as a major strain in caregiving. The diagnosis of ESLD brought enormous mental stress for the FCs since death is imminent.

She is so dear to my heart but seeing her in this state pains me. I know we are all going to die…I know she will die but I wanted her to enjoy me more because what I want her to get from me, she has not gotten it yet. The work that I do the money there is not enough, I am still investing in myself by paying fees and so on, so I wanted her to have a comfortable life before going to the next world. (FC10)

Family care providers are confronted with enormous mental strain watching someone they genuinely love go through pain and discomfort as the condition progresses and the clinical manifestations worsen. The progressive deteriorating nature of ESLD smacks of a wide range of psychological distress, including frustration, fear and a sense of hopelessness or despair among FCs of patients with ESLD. Some FCs experienced frustration because of the lack of improvement in the patient’s condition despite their efforts.

… we are putting in many efforts you know paying the bills, in showing that we care at times we stretch ourselves to serve him with whatever he has the appetite for, the food he wants to eat is what we provide just want to make he takes something small… you know doing all these and not seeing any improvement in the condition is quite frustrating. (FC9)

Some FCs reported that the uncooperative behaviours of their care recipients sometimes frustrate them. FCs described their experiences as follows:

… the patient promised that he would give out some information, vital information, which he has not done, and the wife is continuously asking him to communicate it out and he is not ready for that. (FC9)

Participants who did not stay overnight at the health facility with their patients’ expressed concerns about the patients’ care. They noted that nurses, while present, may not always be attentive to all patients, especially during the night shift when multiple patients need attention. This caused uneasiness for FCs considering leaving their patients to go home to sleep. Despite not being qualified to provide certain services like pain relief, FCs highlighted their presence as a constant reminder to the health team about necessary interventions for the care recipient. One male FC mentioned experiencing daily apprehension and disrupted sleep due to fears about potential problems his patient might face:

… last night I woke up at 3 a.m. and did not close my eyes again…my mind was just on her because no one was there to sleep with her. So, I was just thinking of how the condition was. I even wanted to return to the hospital at that time, but I later said no let me exercise patience so that after the 5 o’clock prayer then I would come. (FC10)

FCs of patients diagnosed with ESLD largely intimated that their inability to help their care recipient whom they see as suffering created a feeling of despair and helplessness within them.

… my mother has suffered… before this sickness she had some problem with her waist and we brought her to the hospital several times to see the specialist and even to the extent of going to see a herbalist on it and all that, that is why I am saying that she is suffering. (amidst crying) (FC10)

The seeming lack of improvement in the care recipient’s condition despite the efforts or energy devoted by the caregiver in the caregiving process creates a sense of hopelessness among the caregivers.

… I will say there has been some deterioration in the care recipient’s state of health because since we were at West Hospital the distension of the abdomen was not there but now the abdomen is distended it has come out. So, I think his health is deteriorating. (FC6)

Social burden

These are issues that have an impact on the FC’s social life. It can range from FC relationships with friends to an inability to participate in social activities. FCs reported that caring responsibilities were performed to the detriment of their social lives. FCs revealed that their involvement in caregiving has denied them the opportunity to attend certain social events such as weddings, funerals, baby-naming ceremonies and parties due to the constant care demands of their care recipients and the distance, as some caregivers are far from the homes where these events are organised.

I have missed a lot of wedding ceremonies, naming ceremonies, a lot of funerals because most of them are organized when I am with my mother at the hospital providing care and because we travel far to seek healthcare, I cannot leave her to attend such programs back at home. (FC4)

My social life has changed, I used to hang out with my friends but now I do not go anywhere apart from going out to buy food and medications I am always at the patient’s bedside. Everything has changed I am always here 24 hours. (FC2)

FCs reported reduced interactions with family and friends due to time-consuming care and location constraints. Some careers expressed feelings of insecurity about leaving their spouses to take care of the patient at the hospital, which is situated far from their communities. A male caregiver who provided care to his brother satisfactorily articulated this idea.

Since I assumed this role as a family caregiver to my brother, I have been moving out of my community to this place, my wife is alone at home so the security so far as my marriage is concerned is loose. (FC3)

An FC mentioned that he tries to secure his relationships with friends, especially those whose programmes he is unable to attend, by sending them money through an electronic mobile transfer with a message explaining his inability to attend the function.

I normally send messages to people who have invited me to their social programs to explain the situation in which I find myself to them followed by some financial commitment to them by giving what I would spend in attending the program to them via e-cash. (FC4)

FCs mentioned that their involvement in care delivery prevented them from religious practices. A FC of Islamic faith admitted that although he could say his prayers as required, he was unable to follow strictly certain religious rituals, such as fasting, due to the difficulty in getting food at the hospital at dawn.

I can pray five times a day but for fasting the challenge here at the hospital is about the food because in the morning you need something to eat before you can fast but at the hospital, I cannot get it hence my inability to fast. (FC1)

FC’s motivation

This emerging theme explains the driving force behind participants’ choice to take on the role of FC for individuals with ESLD. Reciprocity, religiosity and socio-cultural obligations were the underpinning sub-themes of this theme.

Socio-cultural obligation

To begin with, the family is required to provide care to its unwell members because Ghanaian society deems it unacceptable to ignore the sick. According to those who participated in this study, the primary factor motivating FCs to accept the caregiving role was the family’s duty to provide for its ailing members. Participants who cohabited with their sick relatives had no option but to bring them to the hospital, leading to their becoming caregivers. This is apparent in the following quote:

I became a family caregiver because my mother gave birth to only two of us but then the other one is working in Accra, Ghana Immigration headquarters yeah, so I am down here and the only person staying with her. (FC10)

Also, FCs in this study reported the parental relationship with the patient as a major motivating factor in their acceptance of the caregiving role. Participants stated that caring for a parent, for instance, was so culturally ingrained that, when the time came, care was provided without question or any other consideration.

I do not have a choice to make…because she is my biological mother, who is sick. I saw how my mother took care of her parents and the rest of the family anytime they were sick so now that she also needs care, I should be there for her. It is part of our tradition for young ones to care for their parents, so I didn’t even think twice about the decision of caring for her. (FC1)

In addition, the spousal relationship among some cultures in northern Ghana mandates that the spouse, in this stance, be the wife to cater to the welfare and health of their husband. Failure to carry out such responsibilities is seen as culturally unacceptable and comes with vilification and curses from the in-laws of the care recipient. A female caregiver (Tribe-Dagaaba) rendering care to her husband said the decision to assume the caregiving role of her husband diagnosed with ESLD was hers but not emanating from any other person since her culture would not forgive her if she reneged that duty.

It was not the family’s decision that I should be the one taking care of the patient but my personal decision. What will my in-laws say about me if I fail to care for their son whom I am married to? Even culturally it is not right for me to abandon my sick husband’s care needs to a different person. I can’t even stand the insults and curses should he die as a result, and I attend the funeral rites. (FC14)

In furtherance, family cohesion was yet another factor. Participants intimated that as a family unit, they supported each other when they were all in good health, and therefore, providing care for a sick relative is part of the support that exists in the family.

…as a family, the health of each member is important to everyone, we supported each other when we were all healthy so now that my brother is feeling unwell, I must assist him the best I can so that he will recover and join the rest of the family. I took up the responsibility of caring for him because he is my own and would have done the same if I were the one who fell sick. (FC12)

Again, the cultural orientation of Ghanaians towards the feminine gender assigns caring for sick relatives to women, specifically mothers, sisters and daughters. As a result, some female participants expressed that it was socially and culturally expected of them to care for sick family members as mothers and older daughters. A mother providing care for her daughter is illustrated in the quote below:

My father asked me to come from Accra and take care of my auntie, so it was my father’s decision for my being a family caregiver now to my auntie. My patient doesn’t have female children so being a female my father called upon me to take charge of her care…as you can see, she’s a female and it will be difficult for her sons to cater for her. (FC11)

On assuming caregiving responsibility, a brother-in-law attributed it to a good relationship as the driving force. He stated that he had a good bond with his sister, who, at the time of the husband’s sickness, was nursing a 1 month-old baby, which he said health-wise was not appropriate to be at the hospital. He recounted that to care for his brother-in-law, he was forced to put up with being apart from his wife and kids. The case below highlights this understanding:

I took up the caregiving role first because my brother-in-law and I have a cordial relationship, so when my sister told me about the situation I had to step in and assist. My sister just delivered, and it is not advisable to bring this child to the hospital at this tender age. It wasn’t an easy decision, but my sister and I are always there for each other, so I am here and ok with the decision. (FC9)

Reciprocity

Reciprocity was a key motivator for many FCs, driven by the sense of fulfilling their familial obligation to provide care. Participants viewed caregiving as an opportunity to repay their loved ones for the sacrifices and support, such as upbringing, payment of school fees and provision of needs, received throughout their lives.

…. father and son are one, I feel that once he brought me to this world and took care of me up to this stage, whether I was prepared for the role or not I think this is the little I can also do to appreciate all he has done for me. (FC10)

Some participants who had a parental relationship with the care recipient cited that they did not know how dependent they were on the care receiver in their growing years. They, therefore, feel obliged to reciprocate all the efforts and resources the care recipient committed to their upbringing. This is shown in the following narratives:

… being a family caregiver for my father is not a problem for me at all because when I was young, I did not know what happened in terms of the care my father provided to me. I feel it is time I also reciprocate what he did for me. So, I am ready to do anything within my capability to help him regain his health. (FC15)

What motivates me to do what I am doing is that he has been taking care of me when I was going to school so without him, I cannot survive, and he too cannot do anything now; that is what made me take care of him. (FC7)

Religious obligation

Under this sub-theme, some participants viewed their caregiving duty as a religious obligation. They drew inspiration from religious scriptures that admonish human beings to care for each other, especially in times of need. Blessings therein scriptures for those who cared for the sick were a driving force for some FCs.

… the Holy Quran admonishes us to care for the sick, and there are blessings therein from Allah. So, I am playing this role, not for any human rewards but doing exactly what our creator requires of us to do for fellow human beings. (FC2)

Another FC of Christian faith stated.

I think the blessings of God upon my life for the services I am providing to my father who is sick is worth my suffering in providing care to him…I can’t give you the exact quotation from the bible, but I know it is stated in the Holy Book thus Mathew 25:36 that God will bless those who care for those in need. (FC15)

Patient consent for publication

Not applicable.

Ethics approval

This study involves human participants. Ethical clearance was obtained from the Ghana Health Service Ethics Review Committee (approval number GHS/RDD/ERC/Admin/App/22034). Participants gave informed consent to participate in the study before taking part.