The interview text was sorted into five content areas: disconnection with life, never ending burden, a fool being tossed around, obligation to care and promoting a closer relationship.
Experiences with caregiving were elicited by asking: can you tell me how it is taking care of your sick relative? Other questions such as, How has it been looking after your loved one with ESRD were asked to elicit responses from participants. Interview scripts were read line by line several times to understand the whole interview. The text about caregiving experiences were extracted and align together into a text, which constituted the unit of analysis. The text was further divided into meaning unit and condensed. The condensed meaning units were abstracted and labelled with a code. The various codes were compared based on differences and similarities and sorted into categories and sub-categories, which constitute the manifest content. The tentative categories were discussed by two researchers and revised. The underlying meaning was formulated into categories (Graneheim and Lundman, 2004).
Data was analyzed using manifest content analysis to explore caregiving experiences. The following categories and sub-categories were identified: Data was analyzed using manifest content analysis to explore caregiving experiences. It is suitable for analysing complex and significant nursing phenomenon through reporting and describing categories (Vaismoradi, Turunen and Bondas, 2013). Interview transcripts were read line by line several times to achieve data immersion (Elo and Kyngäs, 2008). While reflecting on the data analysis, the researcher validated findings with participants and checked with the research supervisor on the categories and sub-categories that emerged from individual interviews. Similar words were classified into the groups they belong to (Graneheim and Lundman, 2004).
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Categories Sub-categories Quotations
Life passing by Whereas my classmates are in the university learning and studying for the forth-coming major exams, I am in the hospital giving care to my sister, if I don’t write this exam it’s going to affect me. I mean...I may repeat this session. Family caregiver 07
Separated from community
"I feel left out of the happenings in the church and among my friends. I was in the hospital providing care when my niece got married. When my friend’s daughter graduated from the university I was taking care of my husband in the hospital. There is no other thing I am doing now than to provide care. I was supposed to lead the women meeting at the church; I could not do it because I was taking care of my husband. This task has left me out of everything...separated me from my grandchildren, friends and church members” Family caregiver 08
Relentless care I have been doing this for forty-eight months now. The question I asked myself is when am I going to stop doing the same thing over and over again? When is this caregiving going to stop? I don't like doing this anymore! Initially it was hypertension, then later diabetes and now kidney disease. I expect him to be cured of one disease before another showed up but it is not like that. I have been managing these diseases over a long period and I am fed up with this experience". Family caregiver 06
Vigilance I don’t stay with my father [the patient] in the same house. So I always keep my cell phone active throughout the night in case he has urgent needs that must be met before the day breaks. I hardly
sleep…deeply since I know there might be one issue or another…during the night.
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I always feel tired and weak in the morning Family caregiver 10 Imminent loss of a
loved one
I always cry throughout the night. As I stay in the hospital providing care I see patients die from similar diagnosis as my husband. I cry because I know that it is just a matter of time… it will soon by my turn…to mourn the death of my
husband…I cry because life will be difficult for me and my children in the event of his death. Family caregiver 11 Lack of knowledge
about disease process
I have no idea of what the disease is all about. I felt embarrassed when I don’t know what I need to know. I am concerned that nurses are not telling me anything…since they are the ones knowledgeable in health matters". I don't like it when I do not know the reason behind my actions. I am sad to see myself as a fool being tossed around. Family caregiver 05
I just sit here like a robot. Nurses asked me to buy items that my mother needed. They never told me why she needed them. They order me to pay for dialysis and laboratory investigations and other things. Family caregiver 03
After paying for dialysis, nurses started the procedure and then the machine developed some faults which made them stop the procedure … but on the following day when she [relative with ESRD] was taken there to complete the process that started yesterday, nurses demanded another full payment from me. They took me for granted … am I a fool that will pay for a service that was not completed?
Family caregiver 14
Used as a splint Nurses asked me to hold her hand…the one that is used for infusion. I held it for
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several hours…I can’t imagine myself being treated this way Family caregiver 01
Obligation to care Reciprocity I saw him [my father] provide care to my grandfather, when I was growing up. He took care of him for a prolonged period of time. I just said to myself I need to do this because I want my children to also take care of me when I am sick or old. To me, it is good to reciprocate good virtues so that it can be sustained". Family caregiver 10 Contravening
cultural values
In my culture, children are forbidden from seeing the nakedness of their parents. I am sad when I see her exposed body every day. I always remember that it is unacceptable in our culture to see a parent’s nakedness. But if I do not provide care for her, who else will? I am afraid for my life because of the repercussions of the taboo on my Family caregiver 02.
Closer relationship The time I spend taking care of my mother provided opportunity for us to share concerns, cry over our shoulders and laugh about successes. I relate easily with many of her success stories and learn from the shortcomings of her life. It's indeed a time of recounting events, learning and making adjustments. She appreciates the care I provided for her and that made her to share sensitive information with me. Family caregiver 15
Intimacy I know almost everything I need to know about my siblings since our mother's illness started. We talk regularly on phone, they share vital information about their financial life as well as other aspects of life with me. We discussed intimately on all issues of life, especially as it affects our mother. I wonder if I could ever know so much about them if not for our mother’s sickness". Family caregiver 03.
Fulfilment in marriage
I feel fulfilled that I am able to provide care to my husband … of 30 years … He is a
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good, loving, caring, and reliable companion. He smiles all the time because he is happy. The type of care I provide for him makes him happy and it has strengthened our love for each other Family caregiver 15
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