4.2 RESEARCH FINDINGS ACCORDING TO CATEGORIES, THEMES AND SUB-
4.2.1 CATEGORY 1: CONCEPTUALIZATION OF THE CORE TERMS: CARING
4.2.1.2 THEME 2: CONCEPTUALIZING TERMINAL ILLNESS
67 “Caring for terminally ill with AIDS, yeah it is demanding, because we
have to deal will them {patients}, deal with ourselves and our
relatives who are chronically ill and bedridden at homes, what we do for them {patients} we have to carry on with our own, knowing that there is no cure,” (Participant 7).
The second theme stems from the way in which nurses perceive the concept of terminal illness and this is discussed below with its four sub-themes.
68 pain and inability to express themselves. In order to meet the physical needs of the terminally ill patients, prolonged and time-consuming nursing care such as feeding through nasogastric tube feeding and total care of the unconscious patient is required. Thus participants referred to patients that have a terminal illness due to AIDS as those requiring long-term care, particularly if they are sustained on continuous treatment such as antiretroviral drugs which may enable them to live longer than when they are not taking the treatment. The excerpts below reflect this further.
“All the patients with terminal diseases have incurable diseases, e.g.
DM {Diabetes Mellitus}, HPT {Hypertension}, CVA {Cerebro-Vascular Accident}, HIV/AIDS patients. All such patients need special care, and can be taken care of at home or in hospital. At times they are independent enough for self-care in their own communities e.g. IDDM {Insulin Dependent Diabetes Mellitus} patients,” (Participant 6).
“Terminal patients are sick, and may have a disease that has no cure to carry for the rest of their lives. It does not mean that they are dying.
They may live for a long time. Okay, only those who are taking Anti- retroviral Drugs, you find that they live longer,” (Participant 7).
Some patients are admitted with opportunistic infections due to AIDs, such as meningitis and they cannot verbalize pain, or may be
unconscious requiring nasogastric feeding and total nursing care, ending up spending a lot of time with one patient, (Participant 2).
“I like to give my patients love: physically by bathing or feeding them etc, socially, by maintaining communication with the patient freely, so that patients are not afraid to approach you, psychologically, respect them as human beings and give on-going counseling on their ART treatment regimens to keep them motivated to comply always, even at homes, (Participant 4).
Sub-theme 2.2: Terminal illness requires care to ensure patients have a peaceful and dignified death
Although palliative care was affirmed by the participants in the previous sub-theme as improving patients’ quality of life; their statements also reflected that they maintained a realistic stance towards death and perceived terminal patients as
69 having reached a stage where death was inevitable. They were of the opinion that
“nothing could be done for terminal patients” as they would not respond to curative treatment. They believed that the dying process needed to be regarded as an acceptable normal process and that it was their role to care for dying patients and help them to die peacefully and with dignity. This sentiment is illustrated in the statements below:
“Terminal patient is a dying patient, someone who is about to die, they are very ill and dependent for all their needs. They are at the stage where they are about to die,” (Participant 8).
“The patient who is terminally ill; it is hard for them to recover.
Nothing much can be done really. Therefore, it means that I should help them to die with dignity and give them the treatment that is due for pain control, so as to die peacefully,” (Participant 2).
“Nothing much can be done for terminal patients, the only thing is to assist in pain control,” (Participant 10).
Sub-theme 2.3: Terminal illness is an opportunity for new learning
The participants acknowledged that their behaviors have been modified or changed through the knowledge and skills gained while caring for suffering, dying patients who have AIDS. In addition, the participants were able to transfer the knowledge gained while nursing these patients with AIDS to their own family members who presented similar symptoms to the patients they nursed. The quotes below illustrate this sentiment:
“Actually, there are also opportunities that HIV/AIDS has provided;
we had chances to attend bereavement courses. It was very helpful, because we also have deaths at home as well. This helps us to counter act the feeling of sadness we feel each time we send a patient to the mortuary, or bury someone. We are well equipped now.
Every department is also provided with a counselor, all you need is to make an appointment and get the help to share your feelings. Earlier on in nursing, we did not have such opportunities,” (Participant 1).
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“I have learnt a lot about AIDS patients. It has many opportunistic infections, which makes me refer back to my own family, to my family members who once had unusual illness and perhaps died, I am able to relate and associate patients’ illness with some conditions in my family. This helps with diagnosis of my own family,” (Participant 7).
Sub-theme 2.4: Terminal illness raises consciousness on HIV/AIDS
Responding to the reality of death faced by terminal patients with AIDS, participants were awakened to the reality of their own mortality. With the HIV/AIDS epidemic reaching such proportions and dealing with suffering and death on a daily basis made participants realize that they, too, might suffer in such a way one day and would appreciate kindness and care. This motivated them to be more thoughtful about their actions and render quality care, that is conscientious and loving that will preserve the dignity of their dying patients. This is expressed in the following utterances by the participants:
“Caring for terminal patient helps me, because it gives me the awareness that, one day, I will be in their state as well, so this awareness, helps me to care for others more, knowing that I will be there one day,” (Participant 1).
“If you put yourself in their (terminal patients) shoes you will know that someday, it could be you, or anyone who is very close to you. It’s things like these you need to remember when you are still alive so as to care for patients with dignity,” (Participant 7).
“At times I think about death, I ask myself, if it were me, what would I do? Each time, in the evening, I reflect on this question. Sometimes, I think, I will be able to do 1,2,3,4 but, “huh”, you don’t know in reality. I do what I would like done to me.
So I care for my patients so they can feel cared for and loved. Eye for an eye, if I do good, some body, will do good for me one day,”
(Participant 6).
The second category discusses the experiences of caring in the context of a palliative care setting.
71 4.2.2 CATEGORY 2: EXPERIENCES OF CARING IN THE CONTEXT OF