The issue of corruption as it relates to the well-being of the groups was mentioned and discussed throughout all four focus groups. Participants described incidences of resource misallocation, theft, and denial of services across two thematic levels namely at the provider and institutional levels. Under each thematic level, quotations derived from respondents’ perceptions of how corruption manifests in their lives, their interpretation of its impact on overall well-being, and proposed solutions are presented. Table
1 Participants identified a system of service provision, which was fraught with corruption. The discussion further evolved into examples of how the lack of accountability emboldens individuals to either deny services or game the system for personal or collective gain. Focus group participants identify ways in which at the institutional level government agents, international donors, and the research community engage in practices that could be construed as disadvantageous to PLHIV. Finally, participants identify ways in which institutions could provide greater PLHIV protections and ownership of the response system.
Table 1
Emergent thematic levels
What is experienced | – Theft of resources designated for PLHIV – Misdirection of resources from PLHIV to the public – Denying services due to ethnicity and HIV | – Bribing officials to amend/issue legal documents – Misdirection of resources from PLHIV to the public – Difficult to access service system |
How it manifests and affects PLHIV | – Heightens the cost burden of the diagnosis – Longer hospital wait times – Hard to access bank loans | – Lack of support services – Consumers are denied ownership of the response system |
Proposed solutions | – Representation within the response system – Equity | – Legal protections of PLHIV Representation within the response system – Transparency |
Service providers
This section presents narratives discussing experiences with service providers, including health care workers, community workers, and bankers. Given the differences in the roles and functions of facility-based health workers and community-based health workers, data on these two groups are presented separately. In addition, given the Kenyan Government’s integration of economic empowerment interventions as a component of the HIV response system [
3] and the critical role income and assets play in the health and well-being of impacted households, participant discussions that revolve around banking representatives are included in this section.
In discussions revolving around facility-based healthcare providers, participants described situations where workers denied them services. Specifically, female respondents from Group D discussed how the intersection of HIV, stigma, and tribalism in Kiambu County resulted in a delay of health services. In addition to stigmatization by doctors and other hospital workers, these women described an instance where hospital staff were heard to attribute this delay of service to their tribal affiliation. Here, the women speak of arriving at the hospital early only to have other patients seen before them…
Respondent 1: That one was attended to, then the third one was called, and they kept calling others in for treatment, until they got to the tenth person, and I was just sitting there. I started to ask why I am not being called in yet I was there first. I found my file on the table but it had been kept aside. When I asked, they told me that I was bringing a disturbance, step outside come in only after I have called you in.
Respondent 2: I was there that day and she is not the only one who was affected, I too was affected.
Respondent 1: So I went outside and I overheard the social worker and the doctor, I don’t know who else was in the room but it’s just the people who work there, I overheard them say, “That one is a Luo (tribe), she will have to wait”. I was very hurt. I went in and asked them, “doesn’t a Luo deserve treatment?”
It should be noted that upon further probing, respondents from this group did confirm that this denial of service was due to discrimination based on both their HIV status and tribal affiliations: “here in Thika District, sometimes people are discriminated against because of their tribe”. Group D. In instances such as these, hospital staff prioritized care for patients with a similar tribal affiliation by delaying treatment to patients from different ethnic groups. However, this group also acknowledged that the system is improving and the situation is not as dire as it once was.
Further, participants noted service delivery differences across different service delivery settings. In particular, Group D provided examples to illustrate county variations in public HIV care. It should be noted that theoretically county level services should follow comparable administrative, payment, and care procedures. Participants noted how stark differences in costs and services are unfair, and arouse their suspicions about the proper use and disbursement of national resources that hospitals receive to serve them. These regional differences are especially pertinent given well documented instances of
‘tribalism’ and regional disparities in national resource allocations [
19,
20] previously noted:
Respondent: I am part of a support group in Maragwa. When you go to the clinic in Maragwa, the first thing you are given tea because you arrived early, it is assumed that you have had nothing to eat. If lunch time finds you there you are given lunch. When it’s time to go home you are given two hundred shillings for transport… If you go to the hospital there suffering from the flu, you won’t have to buy medicine. You do not even need to buy a card. However, here where we live, we do not see things like those. They do not reach us. We wonder where they go to.
In addition to regional service delivery differences, variations in the way providers treat PLHIV were noted between public and private care facilities “
So I went to the private health center called Mulumba (St. Mulumba) and I am normally treated very well. I was very discouraged at the government run ones” Group D. Although the circumstances surrounding the quality of treatment provided at the public center are unclear, when consumers feel unwelcome, they may not seek needed treatment thereby compromising adherence and retention into care. Participants continued to describe their skepticism about the proper use of resources when they are charged for services that should otherwise be covered by government benefits and therefore offered free of charge to them:
Respondent: Here even to get a card (medical card) you need money.
Respondent: Even if you go there (Thika Hospital) critically ill, you must buy a card before you are attended to.
Respondent: And that’s in a government hospital.
In addition to these auxiliary charges participants were also curious as to why PLHIV are often l turned away by providers when they are ill, “
another thing in this hospital is, when you go on a Saturday or a Sunday and they see your card has CCC1 written on it, they tell you to come back on Monday. Group D. Thus, participants illustrated how the quality, accessibility, and costs of care vary widely despite government efforts to fund and standardize services and also noted variations in the way providers treated PLHIV. Their conversations therefore centered around reasons why PLHIV did not receive comparable treatment across all public centers, and where the resources clearly intended for them were directed.
Community health workers (CHW) are a critical part of the HIV support system in Kenya. Respondents discuss how community workers benefit from concrete supports that are meant for PLHIV, which leads to greater out-of-pockets costs. One participant describes a situation where a CHW stole blankets intended for her children:
Respondent: I want to ask something, these CHW, for example there was a time they asked us to fill forms where I live. The lady asked for a hundred shillings for each child. I gave 300 shillings for my children and returned the form to her. Only one child was issued a blanket, the other two got none, and remember we paid a hundred shillings for each form. As the CHW she said she had people she was caring for and took 3 blankets to take to them. Later she was asked whether she had taken those blankets to the people and it turned out she hadn’t. The blankets were taken from her house by the Headman. She said they would have to wait for her to bring them because she was already using them in her house. You see, they hide these things from the people they are expected to benefit.
Respondent: And that person gets paid to work, they are salaried.
Respondent: They ask us for all this money and they forget we have to work very hard to get it, even go without some things so that they can forward those forms for you. Group B
Participants expressed outrage and disappointment that a paid professional would exploit a patient, especially one who is also experiencing financial struggles. Conversation continued and participants speculated that CHWs might engage in these behaviors because many are not HIV infected and do not relate to the patients they serve. Recruiting and training CHWs from the PLHIV community was proposed as a counter to this exploitation. Participants argued that CHWs who share a diagnosis with their clients might be more inclined to empathize with and therefore provide better services to the community as described by one participant in Group B: “If CHW has HIV it’s okay … they will relate because the person they are helping has HIV too.” Group B.
Economic empowerment is a strategy that has been used in the public and private sectors to address the HIV epidemic. Given the economic burden of a sero-positive diagnosis and the high poverty rates in the region, income-generating activities were discussed by all groups as interventions that strengthen this population both economically and socially. For instance, participants from Group A discussed the merits of their rabbit rearing business which served a threefold purpose: a much needed and affordable protein for group members, a source of income when excess products are sold to local communities, and finally as an activity that keeps the group socially engaged and connected.
Given the preeminence of income in the fight against HIV, financial institutions play a key role in the response system. Participants from groups B, C, and D discussed how proposals written by PLHIV meant to bolster their economic functioning are often un-funded or when funded the resources are directed towards non-affected groups. Participants argue that a sero-positive status, their low-income status, and tribal affiliation is used to discriminate against funding for group projects, “as members we write proposals. But when you write this proposal, you hear that another group benefited but the one that has HIV people questions are asked about how they will repay a loan” Group B. Respondents are indeed committed to securing their economic well-being and do make the necessary efforts to attend the relevant trainings in the hope of receiving financial supports which are not always forthcoming, “we were trained for 6 months and we did not get any support” Group C.
Participants proposed several solutions to the issues they had identified. To reduce discrimination, group members discussed the importance of having a representative voice and equity in the service provision system. Representation is viewed as a way in which agencies can be held accountable during service provision. Specifically, respondents highlight the benefits of including their peers as representatives on these government councils.
Respondent: I would also like us to talk about the government, yes the government is saying that its giving us support but those who have been given the mandate to help us are benefiting themselves.
Respondent: For example the government gives food to those who are HIV positive and those who are supposed to supply the food are selling the food, those who are in charge are not affected like us and the people who are chosen are not HIV positive… In case there is any support that is given we should have representatives…we should know the representatives very well. Group C
The solution of representation was further elaborated when the group members continued their discussion:
Interviewer: There should be a representative?
Respondent: Yes, the money should not be distributed by the government.
Respondent: One of us should be involved in the distribution of that money.
Respondent: We should be the ones who are supposed to be given the money.
Respondent: …we also get people who usually come and tell us to fill forms, give our passport photos, ID and those documents are going to be dumped so we don’t believe anyone.
Respondent: They make money off of us. Group C
Earlier, respondents expressed their belief that providers divert resources away from PLHIV because they do not understand or relate to PLHIV. Thus, respondents assume that by having PLHIV involved in decision making and service provision, providers will be less likely to take or misallocate resources, thereby increasing accountability within the system.
Institutional level
At the institutional level participants perceived a system that is permissive of corrupt government officials, misdirection of national resources intended for PLHIV, and a difficult to access response system. One of the ways this manifests is the collusion of government officials with relatives and non-relatives alike to deny PLHIV of critical economic resources. Again, given the strong association between HIV and economic disenfranchisement, the theft and misappropriation of their meager resources is especially detrimental to their well-being. Participants shared a variety of situations where family members and village elders deliberately colluded with government officials to misdirect resources intended for them. Both genders identified women as being especially vulnerable. For example, one participant from Group B describes how relatives bribe legal officials to deny widows access to land upon the death of a husband by altering official documentation: “It comes in because as I have told you, the brother has money, right? You the widow are left without any money. Because of corruption, the said brother will go and give whatever amount of money and after a few minutes, the documents will be given to him with his name written on them”. A participant from the same group added, “Let me contribute a little, for instance, everywhere in this country there is an assistant chief. The assistant chief knows everyone in their area. They know whose wife you are, they know who has died. If the assistant chief is bribed, your case is closed. It starts with the administration, because the administration in the village is the chief and assistant chief. Whether you go to the chief or to the police station, they all work in the same way, together”. Group B
A male participant from group A described an experience he had where he helped a female acquaintance secure legal documents: “There is a lady I went to assist to get a death certificate at the City Mortuary. She had tried to get one for a whole year and every time she would go they would tell her that they already issued one. When I went there…I found out that they had written two death certificates. I asked why they had issued two death certificates, had this person died twice? How can you note two death certificates for one person?” In this instance the document in question was a death certificate, a document which is critical to the succession process and is used to secure household assets after the death of a family member.
Institutional players were further identified as misdirecting national resources intended for PLHIV. For instance, participants from Group D noted in their discussions instances where food and money donations intended for PLHIV were misdirected away from these intended target groups: “There was a time I heard that there are donors who send food to Kenya for people who are living the virus. Who does this food benefit because we don’t get it”. Again, although participants are not a part of the HIV response system, these group members are aware of how resources ought to be allocated and lack of access or receipt of these resources may raise questions about proper allocation and distribution.
How is this corruption at the institutional level experienced by these participants? Participants discussed situations where accountability mechanisms (in place to prevent skimming and false claims) are circumvented and as a result they do not receive potential services and resources. Group C participants describe an instance where they were asked to cooperate with information gathering efforts by a government group seeking external donations. Presumably, the group needed a count of PLHIV to justify their request for funding:
Interviewer: When you sign somewhere do you usually ask why you are signing?
Respondent: Even if we ask we are going to be cheated.
Respondent: We are usually told that there is funds that are about to be released and the donors want to know how (many) members we have, write your name and sign, since you want to get support then you will just sign, since the donor is not there to know the only proof that he can get is by me writing my name and signing and that’s why we have said, it’s good that you have a recorder so that the donors can listen to us and not you, the donors should not give the funding to those who are not affected because they do not give us the funds. Group C
Although participants seemed aware that their cooperation might not yield any direct benefit to them (and in fact, might only serve others’ personal gains), they complied with the request anyway. Given their tremendous financial needs, many felt as though they could not risk not cooperating. Thus, although PLHIV are aware of the potential use of their exploitation for others’ personal gain, they might also often be unwillingly complicit in corruptive behaviors because of their own dire economic statuses. This engenders a feeling of hopelessness, when PLHIV know that the promised assistance may never materialize.
Feelings of mistrust as a result of exploitation were not only reserved for government officials. Participants also detailed their growing mistrust with the research community. They perceive an imbalance in this relationship with the scales tipped towards the researchers’ favor. To protect their own interests, PLHIV have begun demanding monetary compensation prior to consenting to research activities, “…there are a lot of people who call on us…they then tell us it is possible to be helped. Then you live with that hope…then you live waiting and that is the reason why these days when you ask to interview a person living with HIV they ask you for money. Because people have realized that they are being used” Group D. Another group member offered a poignant statement on the disconnect between the data collected by researchers and the resulting interventions that do not seem to have a direct impact on her life, “now, when you interview groups and go back abroad, we the ones you have interviewed are not the ones who benefit from the research. Doesn’t that hurt?”
To address some of these situations participants first identify individual wealth protection mechanisms that they can undertake to protect their economic resources and to circumvent the collusion of family members with corrupt government officials. Participants from all four groups discussed at great lengths some of the strategies they should apply to protect themselves from economic exploitation. These include using the legal system, the use of both oral or written wills, and divulging the location and quantity of household wealth holding to children early on to stave off disinheritance after their deaths.
Participants also proposed several solutions to address the institutional loop holes identified in the system including consumer accountability and having a representative voice at the table. Such an approach would not only deal with the misdirection of services but also promote the availability of services that are targeted and tailored to this population’s specific needs. In the quote below a participant in Group B posed a question to the group pointing towards the need for accountability in funding streams. “May I ask a question? Is it possible for example when people are writing proposals, there are those who sit down and decide that HIV people need this and this, is it possible two have at least two HIV Positive people in those meetings?” This sentiment is echoed by participants in part of a conversation that was initiated by the interviewer. This discussion points to a level of accountability that PLHIV would inject into the system “if this money was in the custody of people living with AIDS in Kenya, it would get to those who are affected because they know all the difficulties of this disease” Group A.
Participants reported feeling infantilized by the system and want ownership of the research process to ensure that the results address critical problems that they encounter. To do so, respondents noted the importance of community participatory research approaches:
Respondent: when you are doing your research please tell them not to start at the top. When you start at the top it doesn’t reach them (PLHIV), it doesn’t pay
Respondent: It doesn’t reach us. Come to the grass root. Like now you have come to the grass root. If you started at the top you couldn’t know anything
Respondent: Even those projects they (donors) think they can start, they should start from the ground, send their people here, they start from the ground. Group A
Thus by starting “at the top” participants feel as though research studies or other externally initiated projects might not be addressing the critical problems that they encounter and, thus, the results are not likely to benefit them.