Patient care formed the foundation of the job of the volunteer. Each patient presented with similar care needs which determined the daily routines of the volunteer.
4.2.1 Daily Routine
Routine formed the basis of time management with regards to patient visits. Volunteers had to maintain a daily routine in order to fully accommodate all their patients. It emerged from the findings that on average, the volunteers cared for approximately four patients per day and their care duties were vast, ranging from medicating (adherence monitors), feeding and bathing their patients to domestic duties.
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“I can sometimes take four houses a day. However, it depends on the situation that you will find with the individual patient. If you find a situation that you first have to clean the
patient up and wash the bedding because they have messed themselves up, then it sometimes becomes difficult to do four houses a day. Before I start bathing them I would take out their clothes and clean them up, because some of them have messed themselves, bath them, put on body lotion, brush their teeth and then dress them up. After all this I will
feed them” Participant 1
From the above quote it is evident that the routine care duties of the volunteers were very detailed and physically demanding. The volunteers often worked in more than one home at a time and time management was a factor that needed to take priority.
Care work began as early as 8am with volunteers often having to walk a distance of more than 15 minutes between each patient.
“Every morning I wake up, take a bath, get dressed, drink tea and then leave for work at 8 o’ clock. It usually takes me about 15 minutes to get to my patients, but it also depends on how far their home is from mine. I go to as many as four homes a day, so I can’t really say
how many I do a day, it depends on where I’m needed and how much time I have to spend at that particular house.” Participant 4
“We walk all the way up there all the time and when we come back we are extremely tired and exhausted.” Participant 6
42 Caregivers found little time for themselves due to the time spent performing their care duties. They described feeling exhausted when their care work was completed and they returned home. This suggests that their care work was taking its toll physically and perhaps emotionally on the caregivers as they would be unable to play the role of mother, wife and home keeper due to the demands of the care work.
4.2.2 Finding/accessing Patients
The process of finding patients is fraught with difficulties and complications. Once recruited by ‘Uthando Lomama’ volunteers accessed their patients in different ways.
Predominantly, when looking for patients, volunteers visited homes in their communities, introduced themselves to the occupants and explained the type of work that they do and asked if anyone in that home needed their assistance. Alternatively, volunteers relied on different ways of patient recruitment. One volunteer described the process of recruiting her patients as relying on rumors about possible sick people from other community members who were familiar with her work. She described her frustration when explaining that even though she suspected that the prospective patient may be ill, she could only offer her help once the patient or a family member acknowledged his/her illness and disclosed it to the volunteer.
“Sometimes we hear rumors from people that there is a sick person in that house…So when you go there and ask about their wellbeing and health, it has to come from them that they actually do have a sick person in their home. If they don’t tell you that, you can’t say that
you heard a rumor that there was a sick person in their home…It must come from the family member?” Participant 2
43 A lack of community cohesion and trust is evident as the above quote suggests that rumors about the ill circulate amongst the community members. This re-enforces the influence that stigma may have on the patient’s decision to disclose his/her status or accept treatment from the volunteers.
“So when you go to a house you greet them and then they welcome you and then you introduce yourself to them and explain what you do and why you are there. If they need you they will tell you and accept your services but if they don’t then you can force them. That is
how we were trained. You can’t force yourself on a person. Even though I am trained to look after sick people I can’t tell them that ‘I see you are coughing or you are like this and
so you must be sick.’ I have to approach them in a manner that will not insult or offend them, so eventually I will have to get the patient to not only like me, but also to trust me
enough to want me to come back and care for them.” Participant 10
One of the challenges for the caregivers as interpreted from the above quotes is the issue of respecting the autonomy of the patient’s families. Without the permission of the family members, caregivers face the unfortunate scenario of not being able to provide care for the ill. The implication of such a lack of support from the patient’s family members is that the patient may face an undignified death due to a lack of treatment.
Some volunteers described being approached by family members of the patient. These family members appealed to the volunteers for help in the form of materials such as diapers, porridge etc. The volunteers were then able to question the family member as to why they needed those materials. Only once those family members disclosed the fact that
44 there was an ill person living with them, was the volunteer able to provide care for the patient.
4.3 Patient Relationships With Their Families