Yet, not only is the need to tease the social and behavioural dimensions of chronic health conditions most urgent in this region, there also exists a growing pile of research underlining the policy and other implications of such knowledge. It leads to death, hospitalisation, and loss of income and productivity among patients and their caregivers. Our particular interest is in the meanings of their medication practices, views regarding ART, and why and how they comply and fail to comply with medications.
Scholars such as Rogers et al. To the extent that the interaction between self and social reality is a continuing process, it is dynamic and performative, involving negotiation and legitimation through and with discursive fields and narratives. The two communities are characterised by overcrowding, insecurity, poor housing and sanitary conditions, and lack of basic social amenities and infrastructure UN Habitat High prevalence of risky sexual behaviours and poor sexual and reproductive health outcomes also characterise the settlements.
Morbidity and mortality among residents of these settlements are also particularly high. But when this was not possible, we arranged to hold them elsewhere.
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We conducted observations in health care facilities, care organisations, and support groups serving PLWHA in the two slum communities. An ethnographic inductive approach, involving thematic coding and iterative querying of the narratives, has been adopted to analyse the data. Responding men and women ranged in age from 20 to 64 years, averaging roughly 40 years. The bulk of them were aged 36 and above.
Mean years of completed formal schooling for the respondents stood roughly at six. The bulk of participating men and women were parents. Unemployed persons constituted 11 per cent of the sample. Other ethnicities in the sample were Kisii, Somali, Gare and Kuria.
Global information and education on HIV and AIDS
Both Christians and Muslims were in the sample. Several people known to them, including friends, workmates, religious leaders, church members, schoolmates, teachers, partners and even children, had died from the disease or were currently infected. AIDS was also frequently reported as a major killer in the community. Others even explained their infections in the light of witchcraft. Our data suggested that participants who were in union, especially men, tended to keep their status secret from their partners. Many of them said they did not know how their partners would take the news and preferred that their partners find out by themselves.
Such participants usually preferred to be interviewed outside their homes, away from the listening ears of family members and neighbours. Yet, he met her three years after he knew his HIV status and they have been having unprotected sex. Moses claims that he would love to tell Anna about his status. However, he doubts that she will take it kindly.
My husband kept swallowing some drugs but I never understood what they were for. Whenever he wanted to swallow them he would hide and swallow them in a flash. Key informants including counsellors and service providers regularly confirmed the above situation. They noted that despite the counselling they offer PLWHA, disclosure and admission to sexual partners remained very poor. In the counselling sessions and meetings in which we participated, counsellors usually stressed the importance of status disclosure at least to significant others.
Several HIV patients in Kenya have been known to continue to have unprotected sex with their partners even after testing positive Ogieny According to Masanjala , AIDS weakens livelihoods, elevates vulnerability to future disintegration of livelihoods, increases the sensitivity of households to shocks such as drought, inflation, and disasters, and causes sharp declines into poverty, reducing possibilities for recovery. Many responding PLWHA acknowledged losing their jobs, selling off assets, and experiencing falls in standards of living and quality of life due to HIV.
They generally also observed that HIV disrupted their social relationships and networks. Mwangi exemplifies this situation: he admitted he was almost dying before he began receiving ART. He was sick for many months, during which time he could not go to work and was abandoned by friends and family who suspected his status.
Huria also suffered a similar fate. Due to his illness, he did not work for a long period of time. He resorted to borrowing money from friends and relatives in order to survive. When he could not pay back his debts, one of his creditors took Huria's door off its hinges and sold it to recover his money. Respondents were gossiped about, discriminated against, openly avoided, and were sometimes targets of violence. One man identified incessant stigma as the key issue which confronts him as a person living with HIV.
She will die and no one will attend her burial.
Further, since learning that Alice was infected, some of her church members have steadily avoided her: they would not eat or sit with her in meetings and would not allow her to participate in cooking assignments in church. I used to have a neighbour …who knew my status. Take it back! From that day on I decided not to give anything to her children. Or to buy from and sell to them on grounds that they could infect others in the process.
Participants reported that when friends, partners, and family members learned of their HIV positive status, they began to avoid them, chased them away, or refused further association with them. Some respondents also reported that they were sacked when their employers learnt they were HIV positive. Others confirmed experiences of abuse and mistreatment, including partner abandonment. When Athieno tested positive, her husband ran away, leaving her with three children.
She has not seen or heard from him since. The neighbours of another respondent do not hang their clothes on the same line with him, do not buy groceries from his kiosk, and do not allow their children to play with his. Many of the PLWHA we studied often spoke about how, for a long time, they dealt with recurring poor health as a result of undiagnosed HIV and how access to ART brought important changes in their lives. When he ultimately began using ART, Mwangi, who was bedridden, regained his mobility. He said he was much happier and healthier and sometimes felt he was completely healed. This also applies to Huria whom we introduced earlier ; aided by the church where he sought refuge, he received medical attention, learned about his status, and enrolled to receive ART, which radically improved his health, allowing him, as he himself emphasised, to resume work.
One participating woman experienced little trouble in accessing ART. After her diagnosis, she was counselled and referred to a clinic, where she was pleasantly received, underwent some tests, and was placed on antibiotics. A few months later, doctors told her that her body was now ready for ART. However, there were respondents who were rejected at particular treatment centres, tossed between facilities, mistreated by providers, had to wait a long time before they were enrolled, or were asked to pay large sums of money before receiving ART.
Others claimed that the drugs they received made them sicker, were not effective, or complicated their health situation, including causing poor eyesight, hearing disorders, and sexual dysfunction. ART is simply a temporary solution … I think it is like war, the warrior kills many people, but some escape and regroup to fight again.
Birth of a retrovirus
The tendency for shifts to occur in notions of the self following medicalisation is a common refrain in the literature Cataldo In the current study, some PLWHA reported being able to do things that they hitherto could not do due to their illness and some said they became more confident in themselves. Perfection for them was only possible if a permanent cure is found. The drugs I use now are good but you know that they do not make you completely well.
Responding PLWHA generally agreed that doctors and nurses had good reason to ask them to take their medication in a particular way, noting that they were trained to understand the human body and heal sicknesses. To them however, compliance with medical instructions did not necessarily mean that patients were using their medication the best way. Compliance was also not viewed as a guarantee for treatment efficacy.
Doctors and nurses do not live in the bodies of every patient, and are often unable to tell how each person reacts to medication and diseases. As a general rule, they might tell patients to take medications in a particular way. However, as many participants observed, only individual patients can tell the true effects of the medication. A nurse may say do this or that, but it is my body that will ultimately take in the medication.
Strict compliance with medical instructions can even be dangerous, many respondents claimed. Medications reportedly have different effects on patients and what appears good for one patient might be bad for another. The characteristics and unique physical makeup of individual patients were reported as more important in determining the effect of medication than compliance. In Proulx et al. It depends on your body and how you are created.
If I miss my morning dose, I may die. But the evening ones do not make so much difference for me. Although this respondent acknowledged he was not complying with the instructions he received, he said he felt he was using the medications well as he did not feel any less healthy. Thus, while some people reported suffering complications as well knowing others who had suffered complications or even died for not taking their medications as required, there were also those who noted that they had remained healthy despite not taking their medications for months.
Another respondent said she developed resistance to the drugs and suffered TB, because she did not take her drugs regularly. Like the people studied by Watt et al. Saratu takes her pills at 6am and 6pm; the hours she wakes up to prepare the food she sells for a living and the time she closes her food kiosk.
Some PLWHA also belonged to support groups which send out phone messages daily to remind members to take their medications. There were those who had bought alarm clocks, watches, and other devices that alert them to take their drugs. She explained to her daughter that she suffers a terminal condition and needs to take her drugs daily as required.
Her daughter reminds her daily to take her medications. Yet another respondent had an HIV sticker stuck to his slippers; the first thing he wore in the morning and last thing he took off before sleeping. Mahmud, a Muslim, linked his medications with the calls for prayers that blared daily from the mosque near his house, reminding him to take his drugs. Supportive religious leaders, friends, associates, and service providers also reportedly used phones to send reminders to PLWHA to take their drugs.
The major reason adherent PLWHA gave for taking the medications as prescribed was that it helped them forestall the negative consequences of being known to be HIV positive by employers or community members, which often potentially included loss of livelihoods and employability as well as rejection and stigmatisation. They maintained that adherence made them stay and look healthy; enabling them to remain employed, and to sustain relationships with friends, families and network.
Frequent illness not only prevented them from working regularly, many of them had also lost their jobs, clients, and incomes due to HIV.
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