Patients and nurses had different perceptions and experiences of the NCAP. While patients reflected mainly on the positive experiences of receiving care through NCAP, nurses described both the positive and challenging aspects of the programme. The main themes that emerged were logistical benefits to patients, barriers to sustained self-care, closer relationships between patients and care providers, and operational challenges faced by nurses when delivering care.
Fourteen female and four male patients were interviewed (see Table 1). The age of support group members interviewed ranged from 28 to 61. Additionally, one female and three male nurses, with one to three years’ experience running NCAP, participated in the interviews.
Table 1: Characteristics of stable patients interviewed
Participant ID
|
Age
|
Gender
|
Geographical location
|
P1
|
56
|
Female
|
Semi-urban
|
P2
|
40
|
Female
|
Semi-urban
|
P3
|
37
|
Female
|
Semi-urban
|
P4
|
35
|
Female
|
Semi-urban
|
P5
|
61
|
Male
|
Semi-urban
|
P6
|
49
|
Female
|
Semi-urban
|
P7
|
40
|
Female
|
Semi-urban
|
P8
|
54
|
Female
|
Semi-urban
|
P9
|
45
|
Female
|
Semi-urban
|
P10
|
40
|
Female
|
Rural area
|
P11
|
38
|
Male
|
Rural area
|
P12
|
45
|
Male
|
Rural area
|
P13
|
56
|
Female
|
Rural area
|
P14
|
45
|
Male
|
Rural area
|
P15
|
40
|
Female
|
Rural area
|
P16
|
35
|
Female
|
Rural area
|
P17
|
42
|
Female
|
Rural area
|
P18
|
28
|
Female
|
Rural area
|
Patient and nurse perceptions
Nurses and patients reported that the NCAP helped patients save time and money. Participants also felt positive about the personal interaction between patients and nurses; with patients feeling comfortable and well treated, and nurses able to play greater role in caring for patients. However, despite the money saved on transport, reduced commuting and clinical waiting times, and ‘comfortable’ environment for receiving care, patients continued to face financial limitations and stigma in their communities.
Money saved on transport: Most of the patients reported saving the money they would have spent on public transport and using it for other purposes. This was also echoed by nurses:
It is better to be getting the drugs in the community because we do not spend money on [public] transport, money is saved as the drugs are brought to us, which to me is a good thing. (P4, woman, 35 years)
I was very happy especially considering transport. I considered it to be very important, nothing can beat bringing the drugs to the community. (P13, male, 56 years)
It costs [the patients] K1000 [1.40 USD] just for [public] transport, excluding other expenses. When [the patients] are home they can use that K1000 to buy relish [food] and prepare food which can be helpful for their health. (Nurse 3)
Reduced commuting and clinic waiting times: NCAP participants described a significant reduction in the time it took them to get to a clinic and be seen by a healthcare provider.
We used to wait a long time at the clinic. There were a lot of people. Here in the community we collect the drugs once the nurse arrives and I am done for the day. […] I don’t lose anything like transport money or time. (P2, woman, 40 years)
Patients reported that the time they saved allowed them to work, care for their families, or get more involved in community activities.
It gives me more time to go and order things for my business. I will continue selling when I am done here. So, my business is not suffering. (P1, woman, 56 years)
It helps me to look after the children. I can take care of them. (P3, woman, 45 years)
The activities in their community that required their presence made it difficult for them to report to the clinic, but through this programme [NCAP] they know that they can come to us and we will assist them, and they then can participate in community activities, such as funerals. (Nurse 1)
‘Comfortable’ environment: Nurses and patients described the community-based locations to be comfortable because they were less crowded than the fixed clinics.
I can see that it goes well, and I will be leaving in good time. There is nothing like struggling and waiting in a queue at the clinic. (P7, woman, 40 years)
The most important thing I observe is that people are comfortable. Some people tend to be uncomfortable once they see the clinical setting. (Nurse 2)
Patients were less stressed when planning a clinic visit through the NCAP, because they didn’t have to make additional arrangements for a longer time away from home and work. With NCAP, patients didn’t have to drastically change their routine – they started their day at a normal hour and were able to access care in a more relaxed way.
I was impressed with the outline [of the programme] because I used to be worried when my appointment date approached. (P6, woman, 46 years)
We were worried at the time that we were getting [ARVs] from Lighthouse. We had to think that “tomorrow I will have to go to the clinic to get the drugs”. (P8, woman, 54 years)
Lack of money to buy food: Even though some participants used the money they saved to buy food, both nurses and patients mentioned that lack of food remains a significant challenge for patients.
Sometimes I come here while hungry, I do not eat because of lack of food (P16, female, 40 years)
Something that is not available [at the NCAP] is food. (P17, woman, 42 years)
There are a lot of things that those who are HIV positive face. It is not only drug related. There are problems regarding nutrition. For one to be healthy, it is not only ART that is needed but also nutrition. People need money to find food. (Nurse 3)
Perceived stigma: Some patients discussed about their friends who were afraid of being stigmatised by the community if they received care in their community (near their homes), and still preferred to go to clinics that were away from their homes, so they wouldn’t be recognized as a person infected with HIV by their neighbours and friends.
My friends who are ashamed to come here, I told them that you are ashamed but that does not help you. They don’t want to show themselves to other people with fear that they might be laughed at. (P18, male, 28 years)
A lot of people still go to the clinic saying they can’t get the drugs on an open place like this one. We accepted that we have HIV. This is our life and even if we hide, who will we be hiding from? (P10, woman, 40 years)
However, one nurse reflected that the NCAP had the potential to combat community stigma by demonstrating that HIV care is not something to hide and can be successfully treated outside of a fixed clinic setting.
Closer relationship between patients and care providers
Participants noted improved interaction between the nurses and patients because there are fewer patients than in the fixed clinics, and nurses can therefore dedicate more ‘quality’ time to every consultation.
As well as ARV refill, we also provide drugs for other health-related problems that patients report. We refer them to the clinic if there are problems that need to be seen by a doctor. (Nurse 2)
They took care of us just as they would at Lighthouse. They are respectful and have humour. They also give a person a chance to say what they want. They document in a proper manner unlike at the clinic where they might be fast and give you back your health passport before you even finish explaining. (P 13, male, 56 years).
Compared to clinic-based visits where care providers see hundreds of patients daily, those receiving care from NCAP had more time during consultations to report other illnesses they might be suffering from. Nurses continued to document the outcomes of consultations in the patients’ health card.
Some nurses felt that although the increased time with patients led to closer relationships, it was more difficult for them to establish boundaries and keep interactions professional.
We are in one-to-one contact, [patients] tend not to be serious because there is interpersonal relationship, unlike at the clinic they meet different [health care providers]. They would not approach them the way they do in the community. (Nurse 4)
Operational challenges
Unlike patients, nurses described several operational challenges when running the NCAP.
Transport: The four nurses interviewed all experienced issues and delays with transportation which had made them late to their assigned location. Some faced similar delays when returning from the field location to the facility.
The problem that we have is that in some cases we have challenges with transport to take us to the community because we do not have specific vehicles for the programme; this makes us late to our appointments in the community. (Nurse 1)
Latecomers: Nurses reported that patients are not always on time for their appointments which adds delays to their schedule.
Sometimes what happens is that people get used to the fact that we will go to the community. They come whenever they wish; people were coming around 1PM, the time we actually leave, and we can’t send them back. (Nurse 2)
Capturing field data in a central database: Nurses reported issues with the way data is captured and uploaded onto the central database, with delays in data entry by other facility-based staff causing confusion and inaccuracy around the follow-up status of patients.
We write on paper during consultations and sometimes there is a delay by those who enter the information [on the system…]and this makes some of the patients to be treated as lost to follow-up. This affects us because some people lose their trust in us. (Nurse 1)
Nurses proposed that this problem could be solved if they enter the data directly during the point-of-care, with mobile devices like tablets.
Discussing private issues: One nurse reported female patients were not always comfortable discussing personal, intimate issues with them. This was observed in sites where care is delivered in buildings with no private rooms.
The patients are not comfortable to talk about certain things because of the structure [of the room]; the building is in an open space. Only in areas where they have separate rooms, patients are comfortable to report about certain things [such as sexual transmitted diseases]. That’s what I have observed and this needs to be addressed. (Nurse, 2)
In these situations, the nurse said she would ask patients to wait for her and they would talk later behind the building.
Covering multiple roles in the field: Nurses shared differing views regarding the workload, but all acknowledged that their capacity was stretched when providing care in the community. The community-based nurses cover tasks usually managed by multiple facility-based staff; they take on multiple roles – receptionists, pharmacists, lab technicians, health educators, and data staff. While some nurses felt that this increased their workload, others believed it was just part of their job.
The way we are conducting the clinic, the workload is more. As a nurse, you prepare for the clinic, you dispense the ARVs and sometimes you have to draw blood for viral load monitoring, which is a lot of tasks at once. You have to work as a pharmacist, lab technician, and you also have to go to the community to find people whom you can recruit to the programme. (Nurse 4)
Through [NCAP] all the tasks are done by one person, yet the same service is provided by five people at the clinic. (Nurse 1)