A total of 37 professional nurses from five local municipalities voluntarily participated in this study. Both genders were represented although the majority of the participants were females see Table 1 for more details.
Table 1: Demographic information of outreach team leaders
Variable
|
Category
|
Number
|
Gender
|
Male
|
4
|
Female
|
33
|
Age in years
|
30-39
|
2
|
40-49
|
5
|
50-59
|
12
|
60-69
|
18
|
|
|
Nurses participating in the study per local municipality
|
A
B
C
D
E
|
6
5
5
5
6
|
|
Total
|
37
|
A total of five semi-structured focus group discussions consisting of five to seven participants were conducted face-to-face see Table 2 for more details regarding the findings of the study. Three main and eleven (10) subthemes were identified in the study.
Table 2: Findings of the study
Main themes
|
Sub-themes
|
- Conduction of home visits to the caregivers of HIV/AIDS orphans.
|
- Promotion of medication adherence among children orphaned by HIV/AIDS.
- Adoption of a Child Strategy.
- Performance of routine blood and growth monitoring of children orphaned by HIV/AIDS.
- Provision of physical support to the caregivers of children orphaned by HIV/AIDS during disclosure.
|
- Coordination of multidisciplinary team support.
|
- Referral to psychologists
- Referral to social workers
- Referral to the Dieticians/Nutritionist for nutritional support.
- Referral to the law enforcement officers for security support.
|
- Facilitation of support groups for both caregivers and children orphaned by HIV/AIDS.
|
- Adherence clubs.
- Provision of adolescent-friendly services.
|
Three (3) main themes and ten (10) subthemes were identified in the study. To the researchers' knowledge, this study appeared to be a new contribution to the body of knowledge. The WBPHCOT leaders highlighted different types of support that they provide to caregivers of HIV/AIDS orphans. The support provided by outreach team leaders included conducting home visits to the caregivers of HIV/AIDS orphans, coordinating multidisciplinary teams for support, and facilitating support groups for both caregivers and HIV/AIDS orphans. Each support provided by outreach team leaders was broken into subthemes and is discussed below.
Theme 1.1: Conduct home visits at homes of the caregivers of HIV/AIDS orphans
The first theme identified was conducting home visits at the homes of caregivers of HIV/AIDS orphans. Four (4) sub-themes emerged from this theme, namely, promotion of medication adherence among HIV/AIDS orphans, adoption of a child strategy, performance of routine blood and growth monitoring of HIV/AIDS orphans, and provision of physical support to the caregivers of HIV/AIDS orphans.
1.1 Sub-theme 1.1: Promotion of medication adherence among HIV/AIDS orphans
The promotion of medication adherence emerged as the first sub-theme. Participants used viral load suppression as a tool to determine whether caregivers give HIV/AIDS orphans medication accordingly. For example, if they encounter such cases, they visit them at their homes to conduct assessments to exclude the underlying causes of the viral load. During home visits, the outreach team leaders conduct their assessment to confirm if the caregiver gives the HIV/AIDS orphan medication accordingly. This was expressed as follows:
If there is no viral suppression, it is important to check the root cause of why the child's viral load is not giving in to suppression. This case does not require anything special; what we need to do as outreach team leaders is to visit them at home regularly to intensify health education on adherence to ARVs. During the home visit, you check if she is taking treatment on time and swallowing the pills; those critical points will guide you. (Participant 3B)
One of the participants reported that they used health education as a weapon to prevent viral suppression and said:
We always put more emphasis on health education to avoid reaching the point of poor viral suppression. If there is no viral suppression, we allocate CHWs to start them on the DOT strategy. (Participant 3A)
Community health workers (CHWs) are involved in the cases of medication non-adherence to initiate the Directly Observed Therapy (DOT) strategy. The following was echoed.
‘If there is no improvement in medication adherence, we request the CHWs to take over from caregivers by implementing the DOT strategy. The CHWs will be expected to visit the caregivers’ homes every time to ensure that the child takes treatment as s/he should. This strategy helped us a lot to improve adherence among orphaned children. Also this strategy equipped caregivers with more skills because the CHWs involved them during the DOT process.’ (Participant 1D)
1.2 Sub-theme 1.1.2: Adopt a child strategy.
Adopt a child strategy was identified as a second subtheme in which outreach team leaders CHWs allowed participants to adopt one HIV/AIDS orphan to monitor whether the caregiver gave the child medication accordingly and to ensure that other aspects of caring were adhered to. The participants expressed the following:
‘There is another strategy introduced by District Health called the Adopt-a-child strategy. About this strategy, the outreach team leaders and CHWs are expected to adopt a child each. We follow them up at home, and this strategy motivates the caregivers to better take care of the HIV/AIDS orphans. When we visit them, we check if the caregiver gives the orphan the correct medication, dose, time, and route.’ (Participant 1C)
Another participant added,
The adopt-a-child strategy is part of physical support because we assess if the child is growing well, gaining weight, and improving on physical appearance. Adherence has improved; …before the implementation of the Adopt a Child strategy, caregivers did not know how to give medication, and they did not report to us. Currently, caregivers are doing the right thing, and we are following up regularly to ensure they don’t deviate.’ (Participant 2B)
Another participant outlined the significance of the strategy. She said:
‘In general, this adopt-a-child strategy capacitates the caregivers of HIV/AIDS orphans with skills because after we adopt a child, we start taking care of them; we even do follow-ups at their respective places to see if they are well and getting treatment correctly. After some time, we handed the child over to CHWs for follow-ups at home to see if the caregivers were doing precisely what we did. The feedback we receive from CHWs is positive that caregivers are doing well in giving medication, there is a positive relationship between orphans and caregivers, and caregiving skills are enhanced.’ (Participant 3E)
1.3 Sub-theme 1.1.3: Performance of routine blood and growth monitoring of HIV/AIDS orphans
Monitoring of growth and routine blood checks was identified as a third sub-theme. The outreach team leaders are expected to perform routine blood tests at the respective homes of the caregivers of HIV/AIDS orphans. The following was expressed by one of the participants:
‘After adopting a child, the CHWs will be expected to borrow a weighing scale at the nearest clinic to weigh the child at home. As outreach team leaders, we take routine blood checks at home and attach the child to mentors who are CHWs to ensure that the child regularly gets food and do pill counts to measure adherence.’ (Participant 3C)
Another participant expressed the following:
‘If the child does not show any progress, we visit the family every day for at least three months to identify the root cause of the problem. After that, we take routine blood checks to see if there is viral suppression.’ (Participant 1A)
Another participant added:
‘We are closely working with CHWs. They have been capacitated with knowledge and skills related to caring. If we come across underweight children during our home visits, we refer them to CHWs to analyze their immunization cards to see whether the child is not malnourished.’ (Participant 2D)
1.4 Sub-theme 1.1.4 Provision of support to caregivers of HIV/AIDS orphans during disclosure
Supporting caregivers of HIV/AIDS orphans during disclosure was identified as the fourth subtheme. The participants reported that it was the responsibility of the caregivers to disclose their status to HIV/AIDS orphans. As participants, they avail themselves of support when caregivers disclose their status to HIV/AIDS orphans. The following was verbalized:
‘Nurses do not disclose HIV status, and caregivers are the ones who should do that. As nurses, we avail ourselves just for support. The orphan was already a teenager because she was 15 years old. Luckily, we managed to engage the grandmother because our concern was that the orphan was not receiving treatment. We advised the grandmother to disclose her status to her and to motivate her to start treatment by taking her chronic treatment in her presence so that the child can see that she is not the only one taking treatment alone.’ (Participant 2B)
Another participant shared the sentiment of providing support during disclosure. She said:
‘We avail ourselves for support when they disclose HIV status to the orphans. The orphans should not hear about it from people in the village they are not related to. If the child can hear about that from other people, the matter will not sit well with them, and that will cause them to be angry at the person who was supposed to have disclosed the status.’ (Participant 1B)
Another participant verbalized:
If I educate the caregivers of HIV/AIDS orphans about the disease of the child, it is her responsibility to disclose HIV status to the child in my presence. In principle, it is not the responsibility of nurses to disclose their HIV status to the children. The people who are allowed to disclose their HIV status to children should either be caregivers or parents. (Participant 3B)
Theme 2.1: Coordination of multidisciplinary team for support
Five (5) sub-themes emerged from this theme. These include liaison with counselors for HIV testing, counseling, and disclosure, referral to the social worker for support, referral to the dieticians/nutritionist for nutritional support, and referral to the law enforcement officers for security support.
2.1 Sub-theme 1.2.1: Referral to psychologists
The challenges faced by caregivers of HIV/AIDS orphans affect their strengths in executing caring responsibilities. The participants reported that if they come across such cases, they refer the caregivers of HIV/AIDS orphans to psychologists. One of the participants echoed the following:
‘‘All these overwhelming circumstances faced by caregivers affect their psychological well-being e.g., if you do not have food at home, and on the other hand you must give children treatment this automatically affects the psychological well-being therefore we will be forced to bring the service of psychologist for counselling.’’ (Participant 1A)
The same sentiment was shared by one of the participants who said:
‘‘In the cases whereby caregivers are unable to cope, we rope in the psychologist because some of these people need intensified counselling from the specialist who can take them through the whole process of counselling. I don’t think social work and psychologist duties are the same, but I would say psychologist can intervene better in this matter.’’ (Participant 3A)
The participants also refer caregivers of HIV/AIDS orphans who are not willing to disclose their HIV status to the children. The following was echoed:
‘‘To add to what my colleague has just presented, disclosure is done by caregivers or parents but if she is reluctant to disclose, they involve us. There are psychologists in clinics. They do have schedules for visiting clinics. We refer both caregiver and a child to the psychologist to empower him/her with relevant knowledge and skills on how to disclose the status to the child.’’ (Participant 2E)
2.2 Sub-theme 1.2.2 Referral to the social workers for support
Referral to the social workers for support emerged as the second subtheme. Participants reported that they worked closely with social workers to refer cases where caregivers of HIV/AIDS orphans were not registered for social grants and when the grants were not utilized appropriately. One of the participants expressed herself as follows:
‘Some caregivers are misusing the grants. You will find that when we conduct home visits, children are not well taken care of, and the child has lost weight and is wearing old clothes just because the caregivers buy or use the grants to buy liquor. If we come across such cases, we involve social workers to intervene so that the grants can be given to the relevant people who are taking care of the HIV/AIDS orphan full time.’ (Participant 2C)
Another participant echoed the following:
‘I think I have mentioned the social worker role where we, as nurses, cannot win the challenging situation; we seek their input and services. If some do not have grants, some don’t have birth certificates and road to health charts, and these are the documents needed to apply for grants. When all these documents are gathered, it will be easy for the social worker to recommend them for grants.’ Participant 1D
One of the participants supported the sentiment as follows:
‘Usually, we compile a list for maybe three months to provide food parcels to, for example, Family A, B, and C, and in the next cycle, we give to Family D, E, and F. Social workers have profiles of all families. In this case, they will be able to know whether families that are provided with food parcels deserve that privilege.’ (Participant 3C)
2.3 Subtheme 1.2.3: Referral to the Dieticians/Nutritionist for nutritional support
Referral to the Dieticians/Nutritionist for nutritional support was identified as the fourth subtheme. Participants reported that caregivers unable to buy food are referred to dieticians for food parcels. One of the participants expressed the following:
‘The dieticians came in when we assessed the families and found out they were not eating well. We then invite the dietician to come and conduct further assessment and recommend food parcels if need be. In cases where a child is not growing well, the child will be placed on a special diet for maybe a month to see if s/he cannot pick up weight.’ (Participant 1E)
Orphaned children who are malnourished are also referred for supplements. The participants echoed the following:
‘We also have a team of nutritionists and dieticians assisting us here in the sub-district. When we have a child of poor nutritional status since caregivers experience many challenges, we then involve them to intervene. They assess them first and offer some food parcels to help improve the child's weight.’ (Participant 3A)
Another participant added:
‘Regarding HIV/AIDS orphans who are not thriving well, we always involve nutritionists as members of a multidisciplinary health team to intervene by putting them on the correct diet and food parcels that will improve body weight so that it can be interpreted in line with age.’ (Participant 2C)
2.4 Subtheme 1.2.4: Referral to the law enforcement officers for security support.
Referral to law enforcement officers for security support emerged as a subtheme where participants reported that when they come across cases whereby HIV/AIDS orphans are being abused, they refer such cases to the police for further investigation and management. The following was echoed:
‘If the orphan is abused, it is the prerogative of the social workers to involve the South African Police Services to establish the root cause of abuse and further management.’ (Participant 2F)
One of the participants stated that they also involve the police when the needs of the children are neglected and said:
‘One of the common cases is child neglect. Orphans are cared for by relatives when their parents pass away. So, if their stay with relatives is unstable, for example, they move from one family to another for two months with a cousin and two months with an uncle and aunt. It is challenging to decide who is entitled to a foster care grant. For example, the uncle took the foster care grant during the child’s stay at his home and used the funds to buy his own needs and ignored to buy clothes and other essentials for the orphan. Therefore, we involved the police and social workers to intervene.’ (Participant 3D)
One of the participants emphasized the importance of law enforcement and said:
‘There are recreational places adolescents and adults like visiting. In those places, some of them are killed, some raped, and some stay there for quite some time without coming back home. All these problems require people who can do follow-up, and in this case, police officers are the most relevant agents to do that.’ (Participant 3A)
Another participant reported:
‘You will find that some caregivers do not report cases of abuse of HIV/AIDS orphans. When we encounter such cases, we do a thorough assessment before involving social workers. She will have to confirm her assessment as well. After assessments, there will be a need to involve law enforcement officers.’ (Participant 3D)
Theme 1.3: Facilitation of support groups for both caregivers and children orphaned by HIV/AIDS
Two (2) subthemes emerged from this theme, including adherence clubs and adolescent youth-friendly services.
3.1 Sub-theme 1.3.1: Adherence clubs
Adherence clubs were identified as the first subtheme in this study. The adherence clubs are reserved for all patients who are on chronic treatment. The initiative aimed to reduce overcrowding at the facilities by scheduling the exact dates for treatment collection for both parties. Adherence clubs assisted caregivers in readily disclosing their status to orphans without postponing. One of the participants indicated:
‘The Department of Health has introduced a project called Adherence Clubs. In the cases of both caregivers and the orphan taking treatment, for example, chronic treatment and ART, we schedule the same follow-up dates for both. The caregivers benefit from this project of adherence clubs because they do not struggle to disclose their HIV status to the orphans. If the HIV/AIDS orphan asks questions, the caregiver just responds shortly by saying, ‘I am also taking treatment’. Most of the time, we encourage caregivers to take their medication at the same time as the orphans. There has been huge progress regarding disclosure since this initiative was implemented.’ (Participant 3B)
One of the participants elaborated more on the terms of reference of adherence clubs. They also address the needs of patients who are on other treatments. She said:
‘We have initiated adherence clubs that are yielding positive results in the villages. These adherence clubs are not only for people who are HIV positive. They are for all chronic patients. They end up seeing each other at the clubs. We pack treatment according to a patient’s needs so no one can judge another regarding their treatment. As a result, it makes things easier for us. We don’t write about the disease that one suffers from nor the treatment that individual takes. During visits to adherence clubs, we give health education on specific topics. It is effective and impacts caregivers, and they become free from stigma and discrimination.’ (Participant 1C)
The club has played a fundamental role in improving adherence to treatment and the attitude of the community towards caregivers of HIV/AIDS orphans. The following was echoed:
‘The club has improved adherence to treatment because it facilitates the process of patients accepting themselves. As caregivers of orphaned children, adherence clubs have helped to reduce the stigma and discrimination. The club has made all categories of people collecting treatment to relax after noticing that they are not alone in taking chronic treatment.’ (Participant 2F)
3.2 Subtheme 1.3.2 Adolescent Youth Friendly Services (AYFS)
The AYFS emerged as the subtheme in this study. The participants indicated they started a support group for adolescents at the facilities. The support group also discusses activities such as health education and other issues affecting adolescents' health. One of the participants mentioned:
‘Yeah, the other point we did not mention is that we also have teenager clubs. We invite them, and they can come along with caregivers to the clinic. We set a date and time, and when they arrive, we carry out activities with them, including how to get treatment and the importance of adhering to treatment. The adolescents are bound to come along with caregivers, and I think the initiative is productive.’ (Participant 1D)
The main aim of initiating adolescents’ clubs was to create a platform where matters that are related to HIV and affect the health of adolescents are ventilated. One of the participants echoed the following:
‘The main purpose of this teen club is to make sure that these teenagers accept their status and that they can teach those who are not HIV positive about the disease and to accept the status if the outcomes of HIV counselling and testing are positive. Again, teenagers’ understanding of the disease makes the lives of caregivers very easy because caregivers sometimes struggle to convince teenagers to accept their status; therefore, teen clubs play a major role in motivating both teenagers and caregivers. There will be a good working relationship at home, and confidentiality will not become an issue when the child is affiliated with teen clubs.’ (Participant 1C)
The teenagers are also advised to attend with caregivers of HIV/AIDS orphans, and the sessions that are conducted regularly boost their confidence. One of the participants echoed the following:
‘At the AYFS, we capacitate adolescents with knowledge and skills regarding different conditions like HIV, STIs, and other chronic conditions. The sessions empower them with knowledge that guides them on how to conduct themselves when they have tested HIV positive. It also assists caregivers in disclosing their HIV status to children on time. If there is a delay in disclosure, children will start asking the caregiver many questions like ‘What is the medication that I am taking? Why am I taking the medication?’ This will embarrass the caregivers, but this will ultimately compel the caregivers to disclose their HIV status to the child.’ (Participant 3E)