This research forms part of an on-going study which was granted ethical approval from the Medical Research Council of Zimbabwe (A/681) and Imperial College London (ICREC_9_3_13). Informed and written consent was gathered from all research participants with the agreement that their identities would not be revealed. Pseudonyms have therefore been used throughout.
Study population and sampling
The study was conducted in three rural communities in Manicaland province of eastern Zimbabwe. The province is characterised by high levels of poverty and HIV. The three rural communities involved in this study are all served by rural hospitals or health clinics that distribute ART. This paper draws on the perspectives of 25 nurses and eight elderly guardians of children enrolled onto an ART programme. Although 30 guardians of children with HIV participated in the larger study, these eight guardians (the only guardians over the age of 50 participating in our study) all referred to their old age as a major physical and economic constraint to children's ART adherence and therefore qualify for inclusion in this paper. All guardians of HIV-infected children were recruited through a mix of purposeful, snowball (using village community health workers) and opportunistic (self-selected informants) sampling, and in so doing actively sought to identify and recruit some elderly guardians. The age of the elderly guardians (all female) ranged from 52 to 79, with a mean age of 61.
The 25 nurses participating in this study were recruited from three health clinics on the basis of their willingness to participate. The nurses had a variety of experiences and came with different backgrounds, right from primary care and outreach programmes to HIV testing, ART distribution and palliative care. The nurses tend to live within the compounds of the hospital and have received training on the administration of paediatric ART. The mean age of the 25 nurses (11 female, 14 male) participating in the study was 40.
Data collection and analysis
The data for this study were collected in October and November 2009. Four experienced fieldworkers conducted 26 in-depth interviews (18 with nurses and eight with elderly guardians) and one focus group discussion with seven nurses in the local Shona language. The semi-structured topic guides used for the elderly guardians covered informants’ personal background, their experiences of AIDS, stigma and being a treatment partners as well as problems and facilitators of children's ART access and adherence. Individual and group nurse interviews used the same topic guide. The topic guide asked the nurses about their experiences in providing HIV treatment for children, including barriers and facilitators, as well as their interaction with treatment partners. With permission, the interviews were digitally recorded, transcribed and translated into English by the field-workers. To ensure the accuracy of transcription and translation, 20% of all transcripts were randomly selected to undergo a quality check, including back-translation. No inaccuracies were identified. Individual and group interview transcripts of both nurses and elderly guardians were imported into the qualitative software package Atlas.Ti for thematic content analysis (Flick, 2002
). Data collected by the two study methods and populations were pooled and analysed collectively to provide a holistic and comprehensive understanding of patterns (core themes) within the data corpus (Braun & Clarke, 2006
). Using a social constructionist perspective, we sought to map out features of the collectively constructed representational field which shaped both nurses’ and carers’ understandings and actions, rather than seeking to document attitudes conceived of as properties of individuals (Gaskell, 2001
). Following the steps of Attride-Stirling's (2001)
thematic network analysis, text segments were first coded with an interpretative title, which were clustered into higher order, or primary themes. The outcome of this thematic network analysis is presented in , which highlights the three primary themes that address the research question of this paper and make up the structure of our presentation of findings.
Thematic network: challenges (lessened by children's agency, see dotted boxes) faced by elderly guardians in sustaining the ART adherence of HIV-infected children.
To contextualise our findings within the lived realities of the elderly guardians acting as treatment partners, gives detail to the household composition of each of the eight guardians participating in this study. What encapsulates is the impact of AIDS on families and the fostering role of older people. Several guardians had lost their husbands and children and were now the foster parents of their grandchildren, young nieces or nephews. As such, the table also highlights that elderly people were not necessarily alone in creating a supportive context for children on ART; there were often other children in the household who could help out. The HIV-positive children on ART in the eight households described in were all on first-line treatment (combination of Stavudine, Lamivudine and Nevirapine), which was administered on a weight-based system in tablets. Although syrups, which are more easily administered to younger children, are available, these are hard to access in Zimbabwe.
Household characteristics of elderly guardians providing HIV care for children.
Overall, great progress has been made in achieving children's access and adherence to ART in this context, however, as we will now illustrate, HIV-infected children who live with their elderly guardians may face some barriers to optimal ARV adherence that are unique to their care arrangements.
Poverty and struggles
Households made up of elderly guardians and orphaned or AIDS-affected children are particularly vulnerable to poverty and related struggles. One such example includes the struggles faced by Joanna who is too old to work and has difficulties paying for the schooling and clothing of her foster children.
The problems I am facing are monetary including schooling and clothing. All these are solely my responsibility at the same time I am too old to work and this has been a major problem. (Joanna (52), elderly guardian)
Such struggles often result in children having to carry the responsibility of contributing to household sustenance, and on occasion HIV-infected and ill children are forced to engage in work. As one nurse commented:
There are those who want to take advantage of these children. Maybe the child will be the only grandchild but he sends him to the grinding mill, to fetch water, to water the garden some being used that you feel pity. There was a case of a sick child, the grandmother was saying a-aah she works she even goes to fetch firewood. That child died. (Peter (35), nurse)
In response to the poverty and struggles faced by ARV users in this context, a number of nongovernmental organisations were reported to provide them with food aid, minimising pressures on sick children to engage in income and food generating work as well as providing them with a nutritious diet to support their treatment.
Some of these children are being cared for by elderly guardians so they lack food but now that problem has been met because a lot of organizations are distributing food in the area. (Jackie (36), nurse)
We have already alluded to the fact that some elderly guardians are unable to generate food and income. But in what other ways can their immobility compromise children's adherence to ART? ARV users in this context need to go for check-ups and pick up their drugs at a designated health facility on a monthly basis. Each visit costs US$1, covering the administrative costs of the check-up, which, coupled with potential transport costs, can be a challenge for elderly people to pay. But the immobility of some elderly guardians can also prevent them from accompanying their children to their monthly review dates. This is particularly the case with young children who need to be carried.
Like me at my age, to think of going there on foot or even to carry the child on my back, it's impossible and for me to get someone to help me take the child to hospital can be impossible. I can't even think of carrying a child on my back at my age, if I fail to get anyone who is kind enough to help me then there is little I can do. (Cellestine (54), elderly guardian)
Other times the sheer distance can present as a barrier for guardians who had difficulties walking. They were also more likely to get sick and be periodically immobile, preventing the child from attending its review date and pick up ARV supplies.
The health of some of the children who stay with their elderly guardians is not good and sometimes elderly people are not strong enough to come with the children to the clinic the distance might be near but the elderly guardian can't walk the child will end up defaulting. (James (36), nurse)
Elderly women, they would be coming from far away. For her to send the child by herself is not possible, for her to send someone with the child is difficult because of the issue of stigma, so they will remain at home and miss the appointment. If there was a mobile facility that would have helped. (Roselyn (57), nurse)
However, carers repeatedly stated the strength of their commitment to ensure that children attended their monthly hospital review on the appropriate date.
The only thing that can stop me would be if I fall ill myself, and I fail to find anyone to escort my child to the hospital, As for my chores at home, I will always leave them behind and take the child to hospital first. (Nokutenda (79), elderly guardian)
Poor memory and comprehension
For some elderly guardians, remembering the review dates was a bigger challenge than immobility. Several informants spoke of difficulties faced by elderly guardians in remembering drug review dates, often only returning to the hospital when drugs had run out, resulting in a delay in the child's treatment.
Sometimes these children will be staying with their grandmothers and these grandmothers are old, so they may sometimes forget the review dates, when they are and how many weeks they should wait before going back, so they end up forgetting everything, hence they delay to go and get the children's pills. (Marjorie (53), elderly guardian)
Forgetfulness can also mean that children are not reminded to take their drugs at a regular interval, with elderly guardians forgetting when the last drug was taken. This, coupled with a relative complicated administration of drugs, may compromise the child's treatment.
Some of them stay with grandparents who are too old, and who confuse the time or the drugs the child has to take. (Evelyn (29), nurse)
However, occasionally other household members, and children in particular, play an active role in helping their elderly guardians remember when drugs need to be taken.
The other children are the ones who are reminding me, they remind him to take the tablets and they also tell me that he has taken the tablets and is now leaving for school. (Nokutenda (79), elderly guardian)
No I do not forget to give the child the drugs. Even if I was to forget this kid himself would remind me. You hear him saying: “Granny its six o'clock, time for my medication”. (Violet (67), elderly guardian)
A number of nurses spoke of problems in communicating with elderly guardians. They said the guardians often failed to understand the complexity of the child's treatment regimen. Nurses go to great lengths to ensure that treatment partners – who play a primary role in facilitating the treatment regimen of ARV users – have the tools and knowledge to facilitate child adherence, but these are often inadequate for elderly people who are unable to read and write. This is particularly a problem if the child in their care is still young and cannot assist in keeping notes for their treatment schedule.
Most of the children we have who are on ART are cared for by people who are very old. We give people adherence calendars that they should fill in, but what if she can't write, if she is 80 something years? The child may be around four or six years, so for her to write down and to properly administer the drugs may be challenging. She doesn't even know the name of the drug she is giving the child. You would have told her the name but she won't remember it, she just knows that the child is on medication, that's very tricky. Some of them they do not have middle aged people close to them to help them with taking care of the child, so its really a challenge. (Collin (27), nurse)
As Miriam, a nurse, explains, many of the elderly guardians are aware of their limitations and actively remind the child to be alert to the advice they receive from the nurses.
It's a challenge when you have to explain to an elderly person, especially the issue of food, I would be emphasizing what the child needs to eat, I will explain it to the child and I will do it thoroughly so that the child will remind the grandmother. The grandmother will actually call the child to be alert to what we will be saying, you realize that the child is now taking responsibility for all this yet it should be the other way round. When it comes to food, you will hear that the child has eaten only once, yet s/he should be eating more often than this for the drugs, so it's a challenge, there is a problem with elderly caregivers. (Judith (34), nurse)