Background
Methods
Study aim and design
Research setting
Participants and recruitment
Research instrument
Data analysis
Results
Demographic characteristics
Participant (ID) | Age (Years) | Occupation | Duration of caregiving (Yrs) | Relationship |
---|---|---|---|---|
P1 | 42 | Teacher | 2years | Spouse |
P2 | 48 | Petty Trader | 1year | Parent |
P3 | 35 | Teacher | 6months | Spouse |
P4 | 51 | Trader | 1year | Spouse |
P5 | 35 | Farmer | 1 year | Sibling |
P6 | 36 | Petty trader | 2years | Parent |
P7 | 43 | Trader | 1 year | Parent |
P8 | 29 | Artist | 6 months | Nephew |
P9 | 63 | Farmer | 2 years | Spouse |
P10 | 37 | Mason | 1 1/2 years | Spouse |
P11 | 65 | Farmer | 4 months | Parent |
P12 | 33 | Cleaner | 6 months | Parent |
P13 | 23 | Hairdresser | 1 year | Parent |
P14 | 36 | Trader | 6months | Parent |
P15 | 37 | Mechanic | 1 year | Sibling |
P16 | 32 | Statistician | 6months | Sibling |
P17 | 19 | Apprentice | 4months | Sibling |
P18 | 55 | Businessman | 1year | Spouse |
Themes and subthemes
THEMES | SUBTHEMES |
---|---|
PHYSICAL WELLBEING | Physical body changes Physiological changes |
SOCIAL WELLBEING | Role strain Social isolation Financial impact and support Affection/Sexual function |
The physical wellbeing of family caregivers
Physical body changes
“I support him to go everywhere. For these two months, I hardly slept for more than 2 hours because of his frequent visits to the toilet. I have lost weight because of that” (P4).“Taking a car in and out all the time to the hospital is a very tiring task for me. Because of the movement up and down, I sometimes forget to eat, and sometimes too by the time I get home it is late, so I can’t eat. I have reduced in weight “(P5).
“Ei madam there is nothing like physical wellbeing, especially anytime he gets seriously sick. Look at my hair, I have been wearing this wig cap for a long time. No time to even visit the salon” (P1)“I wish to visit the barber and look at my hair. I spend all my time here at the hospital” (P16).
“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 form; my body shape has changed” (P8).“My inability to go for my usual early morning walk is making my body posture change” (P18).
Physiological changes
“Madam, as for the appetite, it’s not there. I am unable to eat in the hospital environment because of the smell of the chemicals they use for cleaning” (P3).“I have no appetite for food, especially when he is seriously sick” (P14).“Yes, I experience nausea most of the time because of the hospital smell, besides, I must clean her up and empty her vomitus. I also wash her dirty clothes which are soiled with urine. Madam, I see so many disgusting things in the hospital” (P1).“The hospital scent makes me feel like vomiting I mostly have saliva in my mouth” (P6)
“I mostly get constipation. My inability to eat and not to get a good place of convenience makes it difficult to visit the toilet like I usually do” (P1).“Because I cannot eat as I used to, I cannot visit the toilet as I used to” (PI6).
“Yes, I am human, and running errands daily makes me tired. Sometimes, walking to and from the pharmacy is very stressful, even in the hospital” (P11).“It is not easy at all moving up and down the hospital; at the end of the day, I feel so tired with body pains all over. Sometimes I even have to carry her on my back” (P12).
“If I say I’ve slept for 2 hours, it’s a lie because of his frequent visits to the toilet at night. Sometimes he would get up, and other times I will have to take him there” (P4).
“In the evening, when I visit him and spend the night at the hospital, since I am sleeping outside there are a lot of mosquitoes so I am unable to sleep but when I get home I can sleep for a while” (P8).“I think a lot these days, so I cannot sleep soundly. My wife is not the same anymore; her abdomen is swollen, she is growing lean, and there is no improvement in her condition” (P9).
“My son is mostly weak, so I assist him with almost everything, bathing, washing clothes, and supporting him to walk around, and now, I am sick. Currently, I have body pains all over” (P7).“I mostly get body pains. She can’t get up by herself, so I assist her and help her eat by serving her while she feeds herself. Regarding bathing, I take the water to the bathroom and assist her to the bathroom to bathe. I also wash her clothes every day” (P17).“I mostly have headaches and body pains, so I visit the nearby drugstore to purchase some pain relievers” (P8).
Social wellbeing of family caregivers
Role strain
“Everything is a mess; if my husband and eldest daughter are away, my children walk about without help or knowing what to do. I used to wash their clothes, cook, and many more, but now I do not have time” (P7).“I do my best not to neglect my other son, but when my daughter is admitted, and my husband has traveled, I send him to my sister” (P12).
“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 some time to care for my brother. She agreed and went back to the North, but I could sense he was not so happy” (P16).
“For some time now, I have had to entrust my business to someone I can trust to be with my wife to care for her” (P18).“Any time I have to come with him to the hospital, I ask permission from my headmaster, or I swap my teaching period with another teacher” (P3).
Social isolation
“I do not visit anyone. Someone told me he had stopped visiting me because of my sick daughter” (P13).
“Whenever he is sick, there are social programs like funerals and weddings; I cannot attend since I always must be with him” (P6).
“I feel lonely because I have no one to talk to, and I am always here alone in the hospital, taking care of my sister” (P17).“Sometimes my heart feels so heavy that I wish I could speak to someone or any of my friends, but the thought of what will follow next, the stigma, stops me” (P1).
Financial impact and support
“Being here to care for my wife has affected my work. I cannot go to work; even when customers call, I have to direct them to other shops. All the money I had on me is finished, and she is not better” (P10).“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).
“Financially, it has not been easy, the company my brother works with pays all his medical bills, but the issue is that I cannot work and make money for myself. I work on a contract basis, but now I cannot go to work. Financially I am hard-pressed” (P16).
“Every month we visit the hospital to purchase some medications prescribed by the doctor and go for some laboratory test which includes liver test. Madam, it hasn’t been easy in terms of purchasing the drugs” (P2).“It has been stressful in terms of finances. From buying medication, paying for laboratory investigation, and transport fares “(P3).“There is no help from anywhere. I have four sons, all depending on me, and now even the little we have to use for food has to be saved to buy drugs. It has not been easy, and currently, there has been an increment in the price of the medications. My husband has no better support, so I am facing financial difficulty” (P2).
“My mother is helping to put things in order. I have two other children who are also working and earning something to support my mother, wife, and employed children are all helping, so in terms of financing, we are a little stable” (P11).“My husband’s family members are all doing their best by contributing some money to help us care for him. Now the family’s money is finished. It’s up to me when he needs anything; only God can help me” (P4).“One of our daughters helps with bathing, feeding, and other things. It has helped me” (P9)
“Now I am in a difficult situation with someone to help. Because I am caring for her, I cannot go to work. Her father is far away, but her mother is not on good terms with us, so since her daughter got sick, she has never visited her before” (P10).“Financially, it has not been easy, we are both mechanics, and now that he is sick, everything is on me. Once in a while, some friends and family members bring something small, but it just does not get anywhere” (P15).
Affection/sexual function
“Madam, my appetite for sex has gone on an extended holiday (smiles). I want him to conserve his energy, so I don’t worry him about sex like I used to do. I only make demands occasionally when I see he is better” (P1).“It has affected our sex life as a couple. Seeing her alone makes me sad I want her to get well, so sex is not on my mind now” (P9).
“Madam, when there is happiness, you can have time for pleasure as a couple. Currently, the thought of fun is not in our minds because anytime we go to bed, the only thing we do is think about the wellbeing of our son” (P7).“I spend the night at the hospital, return home in the morning, and return to the hospital in the afternoon. It has affected our sex life, but we understand each other because of the current situation with my uncle. It has not affected us” (P8).“Since my daughter was diagnosed with this illness, my husband has changed. I think it is because the girl is not his real daughter. He makes sexual demands, not caring whether I am tired. Sometimes when my daughter is very ill, and I want to sleep beside her at night, he will refuse” (P13).“Sometimes my daughter was seriously sick, and he was making sexual advances. I told him I was not in the mood because I worried about my daughter. He got upset with me” (P12).