Subtheme 1: Support with activities of daily living.

Family caregivers provided support to their loved ones with Activities of Daily living (ADLs), for example, bathing, dressing, washing patients’ clothes, and feeding them; a full-time responsibility. This is mainly because majority of the patients were weak and unable to perform ADLs due to the severity of advanced cancer, which made them dependent on their FCGs. FCGs also provided a clean, comfortable, relaxed, and calm environment for patients.

“I wake up, if he wants to eat, I get him breakfast, then I see what he wants to eat for lunch. Sometimes I prepare juice. I wash, I bathe him when he is weak, when he is unable to move, and we use a bucket.” (Participant 3)

“Early in the morning, when Mzei [my father] has woken up, …I clean him in the mouth and then the body, and because he cannot move out, I dress him from here, so I have to remove the pumpers and change him into clean ones. Now when he is clean, I lay the bed …silence… after that, I then start to look for what to feed him, …. I feed him. Sometimes I massage him to make him feel relaxed. After I give him his medication then I wash his clothes.” (Participant 9)

Subtheme 2: Coordination of care.

Family caregivers were involved in coordinating all aspects of patient care. Starting from the time the patient experienced their first symptom, FCGs; especially those who were parents were involved in seeking health care services, coordinating the family, health care providers, religious leaders, and the patient by carrying out patients’ tasks, and ensuring execution of all needed patient tasks. FCGs interacted with health care providers through the following ways: communicating patient’s conditions to the health care providers, waiting for patients’ results from the laboratory or radiology department, taking samples to the laboratory, and executing the doctors’ prescriptions such as making sure patients do exercises, take their medications, among others. In addition, if the patient’s condition deteriorated, they would call the health care providers for emergency care provision as demonstrated in the following quotations.

“My day is organized depending on doctors’ ward round schedule because very early in the morning they ask me how he is and how he slept, and I tell them what has happened and they note it.” (Participant 1)

“One of the major activities I do are: to move Mzei around, if he is supposed to go to another ward, or at the OPD, I have to take him on a wheel chair and I move him around. When it is time for waiting for results, I have to make sure that I keep around to get the results. When we have been told to buy drugs, which are not inside here [UCI], it’s me who moves out to buy the drugs for him.” (Participant (9)

Subtheme 3: Decision making.

Family caregivers were also pivotal in making critical health decisions that related to the care of their loved ones especially for elderly patients and children. Such decisions included: decision to seek medical care when symptoms first presented, decision to seek advanced/ specialized care when symptoms persisted or worsened, decision to seek for a second opinion when not contented with the diagnosis, requesting for referral to other facilities to get better health care for the patients, requesting for discharge due to various reasons such as failure to afford care or services, among others.

“…. I made a decision after 2 months in the clinic with no change… I said … let me look for another way forward. Then I went to the hospital and found a senior doctor, he examined the swelling and then used an Ultrasound scan. He later told me that I needed to come to national referral hospital for further management and I decided to bring my child to this hospital.” (Participant 5)

“When we went back home, he was no longer swallowing food, even swallowing water or juice became too difficult, so we decided to organize and we brought mzei back to this hospital and we met a Doctor who told us that since mzei could no longer feed through the mouth, they needed to put a tube for him to feed” (Participant 9)

“…about 6months ago, I went to visit her and in our conversation, she told me that she was bleeding from her private parts. So I thought that we needed to take her to the hospital for investigation. So we went to the hospital near home and they asked us to do a scan and then later we were advised to do a biopsy.” (Participant 12)

Subtheme 1: Financial drain.

A cancer diagnosis often presents financial difficulties for patients and their families particularly when the person diagnosed with cancer was the breadwinner and when the caregiver has to leave gainful employment to take on the care giving role [32]. Due to limited cancer services in rural areas where majority of the cancer patients live, patients had to obtain cancer care from UCI which involved long distance travels and high transport costs. In addition, despite the fact that most health services were free at the UCI, FCGs were faced with high costs of food, buying the unavailable medicines, and paying for some patients’ investigations that were not available at UCI. Caregivers who had cared for their patients for a longer duration (one year or longer) expressed more financial burden of care giving as demonstrated in the following quotations.

“Feeding is very expensive especially for us who come from very far with no other source of income, no place to work; the hospital can’t provide all your needs.” (Participant 5)

“The transport is difficult because we use public transport; we use a taxi from the village to this side [UCI]. Transport fee is too much and the taxi passes on a bad road.” (Participant 10)

“The cost of these investigations is far beyond what the local people can afford. It is like the hospital is for a certain class of people…. for me I thought that services have to be provided to the local person but when you come here…. it is your cost. If you are to get any service, they first assess your affordability and sometimes if you can’t, they send you to some other place but not where you expected to be.” (Participant 7)

In order to provide the best care for their loved ones amidst financial constraints, some caregivers reported to use up all their personal savings while others sold their property such as land, domestic animals and other personal belongings.

“I had a financial package which I was given as my contract was ending… so right now, I have used all of it and I had some good harvest of maize as of last year’s second season, so that’s what am now selling. I also sold my cow to able to take care of my father.” (Participant 9)

“Mum had a plot of land, we sold it; it is what has been keeping us here all this time”. (Participant 4)

Subtheme 2: Physical problems.

Family caregivers often focus on the patient’s needs and ignore their own health needs resulting in their ill-health. Many FGCs reported a variety of health problems that resulted from long-term care giving roles. Physical problems mentioned mostly fatigue, sleep disturbances, headaches and body pain. These physical problems were mostly reported by FCGs who had cared for their loved ones for a two years’ duration, they said,

“It is tiresome but I am not taken up because I know why am doing all this. I get physically exhausted but I do not get disgusted with the whole care giving experience. Sometimes the journey the pharmacy outside the hospital is long… that can be tiring.” (Participant 3)

“At times if the patient is badly off, you can’t sleep. Throughout the night, you may rest for only 2 hours.” (Participant 2)

Subtheme 3: Psychological distress.

Caring for a patient with advanced cancer may lead to psychological distress among FCGs. Besides, lack of preparation for a demanding role of a caregiver coupled with fear of death of a loved one creates a state of shock and sadness among FCGs. Many FCGs reported constant sadness, worry, stress, and feeling of helplessness especially when the patient’s condition worsened or deteriorated. Participants expressed these feelings in the following quotations.

“It reaches a time when I feel unwell. When I see the situation that my mother passes through, when she cannot walk, there is a time when she cannot feed herself, so it has affected me so much because I feel sad. …especially, when I see my mother, who produced me and took care of me, in this very bad situation. I really feel stressed and worried. (Participant10)

The distress manifested with somatic symptoms such as headache and chest pain in some of the FCGs.

“I don’t feel all that good because she is unwell. I feel chest pain and sometimes when I think a lot, like when you are seated and start thinking, what if my aunt dies, you are always worried. I even get headache. (Participant 2)

Subtheme 4: Social challenges.

The care giving role was described as lengthy and time-consuming requiring full participation of FCGs. Participants reported lack of time to attend social events, visiting friends and relatives.

“I don’t have time with my friends, now like this time am with her, comforting her.” (Participant 2)

Unfortunately, FCGs also cited misunderstandings with family and other social support members such as friends brought about by the caring role. Disagreements were reported among spouses, siblings, friends, and children especially due to failure to share collective responsibility to take care of their patient. This care giving responsibility led to many family disagreements to the extent of causing patient neglect as seen in the following quotation.

“If someone [relative] sends money, they think that they have assisted with care giving… fine, it helps, but it is not similar to you who is there all the time. They [relatives] were thinking that care giving is a walkover, so I also got annoyed as a normal person, and I said, fine, our father is there; you also help him. I left everything to them. I told them, from today, don’t even call me because I have left him for you. Get your own car, I have suspended my car because they had reached at the level of thinking that the car is for daddy. So, I left him to them. Last Friday they had given up and said that they don’t have money.” (Participant 8)

Subtheme 5: Spiritual challenges.

A few participants reported having no time to express their spirituality or engaging with God through going to church, fasting, and having more prayers; a situation that made them distressed and sad as elaborated by this caregiver.

“I am not praying now as I was before, but I usually do when I am going to eat or sleep. I cannot move away from home to go to church because I cannot leave the patient, and I go for prayers. I really feel bad because I was used to going to church.” (Participant 10)

“Yes it (care giving) has affected me because I no longer get time to go to church on Sunday.” (Participant 11)

Subtheme 5: Cultural challenges.

Family caregivers struggled with communities’ cultural beliefs which negatively influenced their patients. For instance, some communities had strongly held cultural beliefs which birthed misconceptions that cancer was a mysterious disease caused by witchcraft, hence the use of alternative medicine such as local herbs to alleviate symptoms of advanced cancer. This delayed the cancer diagnosis, proper treatment, and increased patient suffering.

“They started telling mummy that she might be bewitched, you can go to witch doctors or you can use herbs. And many people were giving her herbal medicine to take but the situation did not change. So, it worsened and reached the extent of needing blood transfusion.” (Participant 10)

Many caregivers described bathing a parent or an elder as immoral, and traditionally unacceptable and this was especially taboo if the parent was of opposite sex. However, being the only alternative to helping the patient, they did it despite the difficulty.

“Bathing my mother bothers me, but she is my mother. My culture does not allow bathing a parent, it is even worse if it is an opposite sex but for a girl it is somehow acceptable. In our case even if I were a boy, I would still do it.” (Participant 4)

“Most challenging is cleaning and dressing the mzei. In our tradition, being a father, there are areas on the body that you shouldn’t see, but now because of the sickness, I have to keep the Mzei clean, you really have to do it but at the back of your mind, you feel oh no! traditionally am going beyond…” (Participant 9)

Subtheme 1: Failure in employment and educational roles.

Employers, supervisors, academic institutions, and lectures/teachers fail to understand the caregivers’ situation and expect them to execute their usual roles/responsibilities. This presents a role dilemma where FCGs have to choose between their pre-existing roles/responsibilities and taking care of their loved ones. Most FCGs chose caring for the patients, losing their jobs and dropping out of school for student FCGs.

“I have to go to work, but when the patients’ condition worsens. It is painful for me to leave him alone. I have to go and work; you know the bosses[employers] don’t mind or care about anything. They want me also to work. They don’t mind about my child. Sometimes I feel like I should leave work because of my child, but if I leave, we cannot survive here [at the hospital].” (Participant 6)

Family caregivers who were also employers failed to supervise their businesses resulting in losses.

“I have failed to monitor my salon, people working there tell me that customers are not there but my friends tell me those people are making more money but the money they give me at the end of the day is too little.” (Participant 1)

Subtheme 2: Inability to balance caring roles and family responsibilities.

Family caregivers mentioned failure to fulfill their family responsibilities. Care giving roles take away family heads and leads to family neglect. Receiving care in a hospital far away from their homes made it hard for them to perform their family roles, thus leaving young children unsupervised and having no primary providers. Family caregivers reported losing family property, feeling despised for inability to take care of their families, and failure to take their children back to school. Role conflict between care giving for other family members and the patient is an additional challenge.

“Since am a peasant farmer, I stopped cultivating land; I lost my garden and animals. When you are not around, no one can take care of your property like you. So, when I went back home, they told me that my cows were stolen.” (Participant 5)

“…as the head of the family, when you see what you are supposed to do being done by someone else, you become irritated and sometimes that person does certain things without telling you, you feel despised.” (Participant 7)

Subtheme 1: Long waiting time.

Family caregivers demonstrated delay in making a cancer diagnosis and described the admission process at the tertiary facility as complicated and prolonged. They expressed concern with long waiting time between the time of referral and the doctor’s appointment at the referral facility. Some reported being worried that the patient’s condition could have worsened before being attended to. Caregivers would become desperate during this period and would consider alternatives such as seeking care from the neighboring countries, use of alternative forms of treatment, and trying spiritual interventions.

“At booking, the waiting period is too long for the sick person, you find someone is so sick but they are giving him a long period of time to come in order to make a treatment plan. If you go up for booking to see a senior health professional, it can take you like three months before you see them.” (Participant 8)

“When we were given an appointment date in September, we got many thoughts, we were afraid that by the time the date reaches, the disease will have escalated. We thought that the immediate solution was to go to another country so that we can get the first treatment. Until when my father decided to wait, we were planning to go to Kenya for an urgent solution.” (Participant 8)

“…it’s not straight forward, because when we came, first we had to go through the process, to make a file, they gave us a bed, it took two weeks time to see the senior doctor and yet she wasn’t feeling well, so we couldn’t go back home in two weeks.” (Participant 12)

Subtheme 2: Overcrowded, unsecure, non-sanitary hospital facilities.

Family caregivers described the in-patient wards as being overcrowded, lacking privacy as both male and female patients with their FCGs shared the same wards. Due to lack of enough hospital beds, some patients were left lying on the floor, which increased the risk of hospital acquired infections for these vulnerable caregivers. Some beds had very old mackintosh covers that were not water proof and were often reused by various patients; further allowing body fluids from patients to seep through.

“We experience body pain because we sleep on the floor. The body becomes weak and tired. Because of this, one can even fall sick yet they are ideally the caretakers”. (Participant 4)

“…. some other mattresses there have now become old and if a patient using the bed urinates, it will pass through the mattress. The mattress then absorbs the urine. Then another person will use the same mattress when the other patient is discharged or dead.” (Participant 5)

“… it is about the beds, that is where patients get difficulties, you come and find when beds are over and they tell you lay down. It is very easy to get infections because some people pass by you when they are from the bath room; they step on the beddings so it’s easy to get an infection.” (Participant 10)

The lack of sleeping facilities for FCGs was also reported, as many slept on the hospital floor, verandas, and some shared a bed with their patients. This could have resulted in the increased fatigue and body pain reported by FCGs. One caregiver reported being worried that something dangerous could bite her while sleeping in the grass (outside).

“We don’t sleep well, some of us sleep outside, when rain comes, it’s too cold. We sleep on boxes. We experience body pain yet we have to take care of patients.” (Participant 4)

“Because we sleep outside, something dangerous can come, I fear snakes so when am outside I fear… because somebody can even use a stone to hit me.” (Participant 11)

Furthermore, the toilet/bathroom facilities were reported as dirty and lacking privacy since they were being shared by patients and FCGs of different gender. Caregivers were afraid of acquiring infections from such facilities.

“…. about the cleanliness of the bathrooms, the bathrooms we have inside the ward are dirty which is easy to come when you’re not infected and you get sick, or if you have an infection and end up getting another infection.” (Participant 10)

Finally, caregivers reported occasions of insecurity within the health facility which often lead to theft and loss property such as money, patients’ hospital records and other personal belongings.

“When we were at the hospital, we were robbed. A bag with our money, phones, and medical cards was stolen.” (Participant 3)

“… unfortunately, on the 15^th when the CT scan was supposed to be done at the emergency department, early in the morning, my bag which had my property and the personal file which contained the appointment letter to do the CT scan and to meet the doctor was stolen, so meaning that I had to start tracing the file, which meant scheduling another appointment.” (Participant 9)

Subtheme 3: Experience with health professionals.

Some FCGs were appreciative of health workers’ efforts while treating their loved ones. They described them as being kind, friendly and responding promptly when called to help the patient or FCGs. Health workers were also appreciated for providing information and explaining the patient’s condition to caregivers, making them confident in uncertain situations.

“Many times, most especially the senior doctors, whenever they are going to do anything, we go through the discussions on what to expect out of whatever they are doing at any time.… you know that anything can happen so when they let me know, I am also confident.” (Participant 7)

“The doctors have not treated us badly, they have treated us well. They have given mummy all the blood she needed. they have given her medicine and even the way they talkto us, they have not been difficult for us. You go and consult him or her and they reply to you very well.” (Participant 10)

On the contrary, other FCGs reported that health workers were few to attend to the many patients on the ward and some were rude and unapproachable, and had no time to listen to patients and caregivers’ concerns.

“One time a caretaker called a nurse because patient was badly off. They unnecessarily shouted at her. Eventually that patient even died.” (Participant 3)

“You find that the doctors are too busy to listen to some patient’s and caregivers’ concerns. They don’t have time. It is only (yes or no), and that is so negative. The patients and caregivers are left in the blue.” (Participant 7)

In addition, participants mentioned being ignored by health workers and the health system which focus on only patients, yet FCGs also require their attention.

“…but more so now on the side of doctors and health workers, they only put their attention on the sick person, not knowing that the caregiver may be going through a hard situation, which is not good.” (Participant 8)

Subtheme 1: Sources of support and motivation.

Caregivers reported obtaining mainly financial and emotional support from their relatives, friends and church members who often visited and prayed for them while in the hospital. The health system also had a waiver system that supported FCGs to pay for unaffordable investigations.

“… I have family members, church members and friends who are helping me. Church members have come home, like three or four times. They come as a group, and they sit with us, whatever they have, they give it to us. Also, our friends who are sending us money… those with money come at home and give us what they have.” (Participant 9)

“After finishing the first dose, I was supposed to repeat the same investigations for the child. That day, I went to the executive director’s office, which helped me and I paid only 150,000shs. That money actually came from my friends.” (Participant 5)

Sources of motivation and hope to continue caring amidst challenges included; the love that FCGs had for their patients as they wanted to see them improve, observing their patient and other patients with a similar illness improve, the feeling they had to give back to their loved ones who took care of them before the illness, support from other caregivers, and the hope to be rewarded by God.

“What always motivates me to give in totally for the patient is the positive response to treatment. It is really encouraging. It overshadows all other problems that you are going through, when you see your patient responding in comparison to how you began.” (Participant 7)

“I have no problem with taking care of him because this man has really been there for me. Personally, my husband died when I was still young. He has been the one taking care of my children and me...Even giving them school fees. I don’t see any other way I can repay him.” (Participant 3)

Subtheme 2: Support needs.

Financial support was the major form of support needed by participants in this study. Others included support in carrying out day-to-day activities such as bathing, lifting/turning patients, and patient ambulation.

“Where I have reached now, I need financial support because we are remaining with about 2 cycles of treatment but it involves a lot of money which we have to struggle to get…. especially now we are in the sixth cycle and we have to do other investigations, you find that the investigation costs are always high yet they will not only need one, they will need several of them.” (Participant 7)

“I need support carrying my sick mom. Maybe if we were two people, carrying her would be easier.” (Participant 4)