Paying to Normalize Life: Monetary and Psychosocial Costs of Realizing a Normal Life in the Context of Free Antiretroviral Therapy Services in Uganda

What Is Life?

Life (obulamu), as used among the Baganda of central Uganda, is a broad and encompassing concept. It depicts both the state of the body and social experience. A person who is critically ill, on a deathbed, or frail is described as talina bulamu (literally lifeless) or obulamu butono (little life). In addition, obulamu may also be used to refer to the state of being alive, dead, sick, or healthy. The derivative word, mulamu, means alive or free from an infection or disease as opposed to being sick/infected or dead. In this regard, HIV-positive people are commonly identified and sometimes identify themselves as balwadde (sick people) or mulwadde (singular). Their uninfected children or spouses are referred to as mulamu, which in this context means not infected. These expressions underline the intimacy between health and life in the local moral worlds of the Baganda. Good health is conceived as an integral component of life, ⁹ and in some cases (eg, in the story at the beginning of the article), the term obulamu refers to good health. However, in practice, obulamu incorporates broader dimensions of social experience. ¹⁰ It also describes feelings. Kulya bulamu means having fun, while mpulila obulamu denotes feeling well/relief especially following a difficult situation. Obulamu is also used to capture an individual or people’s lived experience. Baganda and other Bantu tribes in Uganda often inquire about the others’ lived experience (obulamu buli butya? How is life?) after exchanging greetings. The inquiry may be narrowed down to a specific aspect of one’s life experience such as work (obulamu kumulimu—life at work).

For the lay person in Uganda, life principally revolves around keeping alive, attaining and sustaining good health, work/livelihood, economic security, social relationships, marriage, bearing children, personal image, feelings of self-worth, satisfaction and control, affirming status and power, pursuing aspirations, and fulfilling life tasks (instituted social roles and obligations). ^9,11,12 Such values define a “normal” and full life in this setting. Thus, by normal life, we mean the realization of broader values and goals that characterize “normal living” in the sociocultural context of Uganda.

The costs attendant to realizing a “normal life” while on ART have had limited focus in most HIV/AIDS studies, despite the notable interest of several scholars of sub-Saharan Africa in the lives of PLHIV on medicine. Existing studies mainly show how HIV medicines have enabled HIV-positive patients to regain health and return to the normal struggles, concerns, and aspirations that characterize living in their sociocultural contexts (normalization of life), but provide no rigorous accounts of the economic and other burdens involved. ^11,13 The article seeks to contribute to an understanding of the economic and psychosocial costs of normalizing life among PLHIV on free ART in a resource-limited setting. It further seeks to highlight the underlying structural constraints that render it difficult for PLHIV on ART in a resource-poor setting to realize key life goals without investing money or enduring distress. Therefore, 2 main research questions are addressed: what economic and psychosocial costs do PLHIV on ART bear to live a normal and full life? and what structural constraints render it difficult for PLHIV on ART in a resource-limited setting to normalize life without bearing economic and psychosocial costs? The article explores how ART in a context of scarcity and stigma necessitates PLHIV on treatment to incur interminable economic (money and time) and psychosocial costs to achieve and sustain values that pertain to a normal and full life, particularly marriage and intimacy, privacy, and good health. By psychosocial costs, we mean distress and trade-offs associated with an interplay of patients’ emotional or mental states and their response to social situations. We argue that normalization of life for PLHIV requires more than providing access to free HIV medicines. It necessitates a holistic approach that purposely and substantially integrates medical, economic, and psychosocial interventions.

Study Design, Setting, and Population

This article draws on data from an ethnographic study that sought to examine how PLHIV on medicine in Uganda mobilize resources for managing HIV. The ethnographic approach enabled generation of a rich and nuanced understanding of the lived experiences of PLHIV within their contexts. ¹⁴

The study population included adult males and females aged 18 years and above enrolled on the ART programs of Naggalama Hospital and Mukono Health Centre IV (HCIV). Both facilities are situated in Mukono district, a central peri-urban area. Naggalama Hospital is a mission/private not-for-profit health facility located in the rural part of Mukono, while Mukono HCIV is a public health facility in the heart of Mukono Town. Respondents were selected from the 2 health facilities on the premise that the differences with regard to the location (rural versus urban) and management (mission versus public) would provide deeper insights into the varied experiences of clients. For instance, mission establishments, unlike public facilities, usually charge user fees, a practice that has different resource implications on the respective clients.

Naggalama Hospital and Mukono HCIV are the largest health facilities in Mukono district. Both facilities attract patients from the neighboring districts, including Kampala City, which is situated about 20 km from Mukono district headquarters. ¹⁵ In September 2015, records of the 2 facilities indicated that Naggalama Hospital had 2862 active clients, 66.4% of whom were female, while Mukono HCIV had an estimated 3500 clients, of whom 68.1% were female. The most recent National Population and Housing Census estimates the population of Mukono district at 596 804 people. ¹⁶ Available reports show that 7% of the district’s population is infected with HIV. ¹⁵

Sampling

The study was conducted in 2 phases: the initial phase covered 50 respondents (25 from either health facility) who were purposively selected to capture variations among PLHIV on ART. The participants were selected on the basis of gender, marital status, age, and length of period on ART. In addition, the study considered whether a respondent was only on prophylaxis or on prophylaxis and ARV medicines, disclosure status, and presence of any illness. The selection criteria allowed a mix of both demographic and treatment-related aspects, to provide insight into the diverse experiences of PLHIV on ART. Eligible participants were identified from the register on clinic days and approached for interviews by the researcher between September and October 2015. After identification and sampling from the register, heath workers were helpful in getting us in contact with the participants by locating them among the many clients at the clinics. The potential participants were approached after receiving HIV care. The researcher explained the purpose of the study to the selected participants. They were informed that there were no immediate benefits (monetary and otherwise) from their participation, but the information obtained would provide insights into the experiences of PLHIV on ART as they mobilize treatment resources, that could be used by policy makers to address any issues of concern. They were further informed of their right to nonparticipation and how refusal to participate in the study would not in any way affect their access to services from the health facility. The selected participants were required to accept or decline to participate on the spot. A total of 67 PLHIV were approached for interviews before the target sample of 50 was generated. The 17 who declined to participate gave various reasons including having no time due to busy work schedules, feeling worn-out after waiting for long at the clinic, being noninterested, and having urgent matters to attend to at home. During the second phase, 15 of the 50 participants were selected for continuous follow-up to get deeper insights into their day-to-day illness experiences. The article draws on both the experiences of the 50 respondents and others encountered during participant observation at the 2 facilities.

Data Collection

The 50 respondents were involved in in-depth interviews with the aid of a guide consisting of open-ended questions. Initial contact with participants was at the health facility. Each interview lasted approximately one and a half hours and explored participants’ illness history, conceptions of the resources that are necessary for the management of HIV and how they mobilize them, and constraints and opportunities that they encounter in mobilizing resources. Participant observation was conducted at the 2 facilities for 6 months between September 2015 and February 2016. One of the authors attended and participated in the activities of 2 out of the 3 clinic days offered by each of the 2 health facilities where participants were contacted. At the health facilities, the author attended counseling sessions and health education talks, after consent of both patients and health workers, and sometimes assisted in counting medicines. It is common practice for ART providers in Uganda to request patients and other people (such as community volunteers) for support in counting medicines, given the human resource shortages in most of the facilities. The author also often interacted with and participated in clients’ conversations. Through participant observation, we were able to capture actions as they occurred in a natural setting. ¹⁷ Participant observation further facilitated continuous engagement and interaction with health workers to understand the organization, procedures, requirements, and context of HIV treatment and care. The mix of methods enabled triangulation of data. The interviews were audio recorded, while observations were documented in field diaries on a daily basis.

Data Management and Analysis

The audio-recorded interviews were transferred to a lockable computer for storage, to minimize access by unauthorized individuals. The interviews were transcribed verbatim and translated into English with the assistance of language experts. Three of the authors participated in transcribing and translating some of the interviews. The audio interviews were destroyed after transcription. The field notes were word-processed by the authors. Both interview transcripts and processed field notes were stored on computers with passwords to limit access to only the authors.

The processed interviews and field notes were imported into NVIvo.10 qualitative data analysis software package for further management. The analysis process involved reading and rereading the data as sentences, and paragraphs and whole sections were coded according to the identified themes and categories. In generating themes for the development of this article, both deductive and inductive thematic analysis were conducted. ¹⁸ We started off with a broad theme “paying for life,” which was derived from the data as indicated in the vignette at the beginning of the article. This theme was defined as any monetary or other costs incurred by patients in their quest to attain/maintain good physical health. Categories under this theme included costs associated with ART adherence and other treatment-related costs. Data coded under the former category included costs associated with regular travel to the health facility for refill such as transport, expenditure on treatment of OIs, and patients’ complaints about the burden of taking the daily pill.

Further scrutiny of data revealed that PLHIV valued and worked to attain more than good health. They also sought privacy and getting and keeping good intimate partners, among other things. An interrogation of the concept life as used in the local Ugandan context revealed that seeking for privacy and intimacy are part of peoples’ day-to-day social experiences and thus can be seen as integral components of PLHIV’s life in its broad sense. We identified the concept “normal life” from mainly anthropological literature on the treatment experiences of PLHIV on ART and interrogated it in light of how life was defined in the local Ugandan context. Our aim was to identify values and goals that constituted what was considered a normal and fulfilling life in this setting. We found that good health, privacy, and intimacy were some of the goals that people aspired to attain.

These revelations informed the revision of the main theme “paying for life” to “paying for a normal life”. The meaning of the theme was broadened to include sacrifices and economic, social, and psychological costs that PLHIV on ART endure to achieve the states and goals that define normal living in the sociocultural context of Uganda. Categories under the original theme were collapsed into a subtheme “paying for good health.” Two other subthemes “paying for privacy and anonymity” and “costs in sustaining intimate relationships” were created. Data under each subtheme were further reread and categorized into the nature of costs involved. Drawing on our knowledge of various costs, we categorized data into economic, social, and psychological costs. Data under social and psychological costs were eventually collapsed into a broader category psychosocial costs. In the process of reading and coding the data, cases of PLHIV who failed to adhere and maintain privacy or intimate relationships due to lack of financial capacity or unwillingness to make sacrifices were identified. These were coded under the category “failure to meet life goals” to ease data retrieval for comparison. The themes and subthemes on which the article is based are summarized in Figure 1.

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Figure 1.

A summary of themes and subthemes.

Ethical Approval and Informed Consent

The study was granted ethical clearance by Mengo Hospital Research Ethics Committee (679/4-15) and Uganda National Council for Science and Technology (SS 3939). Written informed consent was obtained from the 50 participants selected for the study. Respondents who could not write used a thumbprint. Verbal consent was obtained from all the 15 clients selected for follow up. Their acceptance to participate in the second phase of the study was recorded on the original consent form they had signed. The information shared and observations made were kept confidential. At the health facility, the clients were informed that the author was a researcher. For purposes of observing confidentiality, only pseudonyms are used in the article.

Characteristics of Study Participants

Thirty-one of the 50 PLHIV were female. Ten of the participants were on only co-trimoxazole or its substitute, dapsone prophylaxis, because their CD4 counts were still above the threshold for initiation on ARV medicines at the time. Their period on ART ranged from being newly initiated to 9 years. However, we found no significant variations in the experiences of participants by medication and treatment duration.

In terms of age, the majority (41) were in the reproductive age-group of between 18 and 49 years. The majority (33) of the participants were married or cohabiting. Eleven of the married respondents had not disclosed to their spouses. In terms of occupation, the majority (26) mainly depended on farming for a livelihood (see Table 1).

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Table 1.

Characteristics of Study Participants.

Characteristic	Frequency (N = 50)	Percentage (%)
Medication
ARV medicines and prophylaxis	40	80.0
Only prophylaxis	10	20.0
Gender
Male	19	38.0
Female	31	62.0
Marital status
Single	5	10.0
Married/cohabiting	33	66.0
Divorced/separated	8	16.0
Widowed	4	8.0
Main source of livelihood
Farming	26	52.0
Salaried employment	5	10.0
Petty trade	4	8.0
Casual labor	3	6.0
Bodaboda (motorcycle taxi) riding	3	6.0
Artisanary/mechanics	2	4.0
Nothing	7	14.0
Age, years
Below 20	2	4.0
20-29	13	26.0
30-39	15	30.0
40-49	11	22.0
50-59	6	12.0
60+	3	6.0
Treatment duration, years
Below 1 year	5	10.0
1-4	27	54.0
5-9	18	36.0

Abbreviation: ARV, antiretrovirals.

In the following sections, we present data on the psychosocial and economic costs and underlying structural constraints to realizing the values of good health, privacy, and marriage among PLHIV enrolled on treatment. These data are presented under 3 themes: the cost of attaining and sustaining good health, paying for privacy and anonymity, and secrecy and guilt in intimate relationships.

The Cost of Attaining and Sustaining Good Health

During participant observation at the 2 facilities, we often heard health workers informing PLHIV that initiating ART would control HIV disease progression and improve or sustain their health. However, they always emphasized that optimizing the health benefits of treatment was contingent on adhering to HIV medicines, eating a balanced diet, visiting treatment centers regularly (on a quarterly basis for our respondents) for refill and clinical review, avoiding worries and strenuous activities, and managing comorbidities promptly.

“Eat well, avoid worries and strenuous activities, [and] take your medicines daily; you will be well,” were catchwords in HIV counseling sessions orientating clients commencing ARV medicines. We found that for several of our interlocutors, complying with the “rules” of ART involved a number of psychosocial and economic costs including those related to transport, food, and medicines as described below.

Paying for Privacy and Anonymity

Privacy is one of the valued ends that HIV care in Uganda seeks to uphold by promoting the principle of confidentiality. However, the setting and arrangement of ART clinics often makes it difficult to uphold the privacy and anonymity of clients, at least concerning their HIV diagnosis.

We found that HIV treatment at the 2 facilities was provided by isolated units known as ART clinics. The clinics operated on designated days and attended to only HIV-positive patients. Clients typically waited in an open space where a desk for conducting triage (registration, measurement of weight, blood pressure, temperature, nutrition status, and height) was placed. The clients’ names were called out one at a time for triage, before they queued to see a clinician. While the arrangement facilitated the management of large numbers of patients, the open setting made it difficult for them to keep their status secret. Sperito told of how he discovered the HIV status of a village-mate, who preferred to remain anonymous from the ART clinic.

…There is a man from my Village I found here at the health facility. When I asked him why he was here, he claimed that he had a patient admitted in the wards. The annoying thing is that later his name was called at the triage while I was seated in the waiting area, then I realized that he had lied to me…

To avoid such exposure, some patients paid for private services. Naggalama Hospital had a well-instituted arrangement for clients seeking privacy and/or a quick service. Private clients did not attend the general clinic, but walked straight to a secluded room where a designated doctor and nurse received and attended to them. The nurse took all the necessary measurements and picked the clients’ medicines from the pharmacy. However, these clients paid 5 times more – UGX 10 000 (US$2.7) in comparison to a nominal fee of UGX 2000 (US$0.5) that the general clients were charged. Mukono HCIV had no instituted arrangements for providing private services. Being a public facility, clients were not charged any money to access HIV treatment. However, patients seeking privacy and anonymity usually avoided visiting the treatment center and paid health workers informal fees ranging from UGX 3000 to UGX 5000 (US$0.8-1.4) to pick their medicines for them. By not visiting the ART clinic, these clients forfeited clinical review and monitoring tests, which are an integral part of HIV treatment. Thus, in attaining privacy and anonymity, they not only spent money that was not required to access HIV care but also sacrificed important components of the treatment, thereby putting their health at risk.

Secrecy and Guilt in Intimate Relationships

Intimacy and marriage (note 2) in particular are key values that most people in Uganda and other parts of sub-Saharan Africa aspire to achieve. However, due to the fear of HIV-related stigma, several of our interlocutors realized intimacy at the cost of psychologically distressing acts of secrecy and feelings of guilt.

An example was Zerida, a woman in her early 30s. She was already initiated on ARV medicines when she married her current husband but chose not to disclose her HIV status to him. She did not know his HIV status but was worried that he could leave her if he learnt that she was positive; yet, she was not ready to end the relationship. She related, “I had no way of telling him [about my HIV status]. I was worried that he could leave me. Where do you find a man who accepts you with all your 4 children these days? He is really caring.”

We found that this marriage meant a lot to her and her children’s (from an earlier relationship) social and economic security. She marveled at how her husband had started her a vibrant business and provided for her children like his own.

I am not complaining. I get everything I want. The business my husband started for me is lucrative. Even getting money to come here is not a problem…That man has taken care of my children like his own. He pays their school fees. I met him when the youngest was in primary, now she is in senior 4.

The change of treatment center meant she spent over UGX 10 000 (US$2.7) on transport for every visit, when she could access similar and perhaps superior ART services from a nearby hospital without incurring any transport costs. She went ahead to conceal her ARV medicines and to disguise them by transferring them from containers to polythene packs that are commonly used for packaging other drugs in health facilities within Uganda. The repackaging was aimed at averting suspicion in case her husband accidentally found the ARV medicines.

When I return home, the first thing I do is to remove my medicines from the tins to polythene packs, then I throw the tins in the latrine. My husband is not the type of person who looks everywhere, but you never know. When the medicine is in the usual polythene packs, even if he finds it he won’t become suspicious because it looks like any other medicine.

The secrecy enabled Zerida to protect her marriage from discord related to her HIV infection for 7 years by the time of this study. She nevertheless had to incur considerable financial, temporal, and psychosocial costs to hide her status (described above); she also endured feelings of guilt and insecurity about the relationship. Her fears and guilt were portrayed during our first interview. She narrated her illness experience with poise until when we inquired about the whereabouts of her husband. Appearing wary that we could inform him about her status, Zerida panicked and quickly acted to mitigate the situation. As tears rolled down her cheeks, she knelt and implored us not to inform her husband. “Don’t tell him, don’t tell him…he will leave me,” she pleaded.