“For us here, we remind ourselves”: strategies and barriers to ART access and adherence among older Ugandans

Between September 2016 and March 2017 we conducted qualitative interviews with older persons (between 50 and 96 years) and key informants within Kalungu District in rural southwest Uganda. Participants were recruited using lists of older people accessing health and HIV services at three Level III health centers and the Medical Research Council/Uganda Virus Research Institute (MRC/UVRI) Health Clinic. Level III Health Centers exist within rural communities, covering about 20,000 people and are staffed by nurses. The MRC/UVRI Health Clinic is a designated government health facility.

Participants were stratified to include those not known to be infected, those who were HIV positive and were waiting to initiate ART, and older people living with HIV (OPLWH) on ART. We reported only interviews with those in the latter two categories: 26 OPLWH on ART and 14 waiting to initiated ART.

Changes in the Uganda ART treatment guidelines meant there were few older persons who had been diagnosed with HIV but were not yet receiving ART. Two of the health facilities did not have a record of HIV positive persons aged 50-plus years waiting to be initiated on ART. The majority in this category were recruited through the General Population Cohort and MRC/UVRI Health Clinic in Kyamulibwa, Kalungu district [25]. Although the WHO guidelines recommend “Test and Treat,” the roll out of this approach has been slow, largely because the available drug supply is limited. Those individuals who test positive, are generally started on Septrin prophylaxis, and remain on it even after starting ART, until the treating practitioner decides that the medication is no longer needed.

Ethical clearance was provided by the Uganda National Council for Science and Technology (HS2060); ethics approvals were also received from the Uganda Virus Research Institute and the University of Missouri.

The research team, which included experts in aging, HIV care, and qualitative methods, developed a semi-structured interview guide that explored themes related to older Ugandans’ ART access and adherence. The guide included: (1) participants’ experience of HIV and ART; (2) overall wellbeing and quality of life; (3) social support networks; and (4) engagement with the health system. Respondents receiving ART additionally self-reported their ART adherence, as well as barriers and facilitators to access, and treatment and medication adherence (see Additional file 1).

Participants’ age, sex, HIV and ART status were determined through clinic lists. Prior to interviews, all participants gave written/thumb printed consent. Interviews lasted 1–2 h, and were conducted by one of two members of the field team skilled in qualitative interviewing. All individual interviews were conducted at the participants’ homes. Interviews were audio recorded and field notes taken. We received written (or thumb printed and witnessed) informed consent from all participants.

Following Holtzman et al. [26], who worked in the United States, we use the Andersen Behavior Model (ABM) of Health Service Use to provide a theoretical framework for understanding older persons’ ART access and adherence in rural Uganda [24]. In the model, as adapted by Holtzman et al. [26] and shown in Fig. 1, there are seven domains: patient factors (predisposing, enabling, perceived need), health care environment factors (system, clinic, provider), and external environment factors. The inclusion of both environmental and patient factors create a stronger framework for building treatment interventions than other models [26]. We made use of data from both PLWH and health workers to understand health behaviors, and how environmental factors and patient factors influence and create feedback loops with ART access and adherence.

The field team had regular debriefing sessions with the project manager and PI during the data collection period to discuss progress and outline impressions. Summaries of each audio recording, as well as full transcripts were completed for each interview. Adopting the thematic content analysis approach [27], we inductively developed themes and analyzed patterns emerging from the data. The research team (1) repeatedly read the summaries and transcripts to become familiar with the data, (2) coded the data by identifying key issues and recurrent themes related to ART access and adherence, and (3) organized the themes into categories. The codes and themes were based on participants’ accounts of barriers and facilitators to ART access and adherence. The data analysis was managed using NVivo version 11.

After coding the interviews, summary reports for each code related to ART access and adherence were produced in NVivo. The research team reviewed the ABM and mapped the themes and sub-themes to the domains outlined by Holtzman et al. (2015). The team adapted the model according to the emergent themes in this setting. Because of the similarity between the analyses and the applicability of the ABM, the coded data easily applied to the ABM domains. Barriers and facilitators to ART access and adherence were compared and assessed in conjunction with one another as many of them were similar. Ideas outlined in this paper were member-checked through a community feedback session with older persons and health workers from the communities in which the study took place. In addition, three of the authors (GT, EK, & PN) are members of the community and provided additional checks on the validity of themes.

Psychosocial factors include economic and social circumstances that frame emotional and social meanings of health and contribute to overall life satisfaction [28]. The psychosocial factors frame the complexity of how health literacy, stigma, depression, and alcohol use are understood by respondents to affect ART utilization (Table 3) [28‐31]. Health literacy and alcohol use were linked to adherence, while stigma and depression were seen as affecting both access and adherence.

The exceptionally high HIV-related health literacy among respondents living with HIV in terms of knowing when and how to take their medication was a key positive factor in adherence. Particularly given the level of education (most had very few years of formal school), this positive predisposing factor overshadowed many of the negative factors that respondents discussed. Even though the health literacy messages that respondents reported were not all correct, respondents claimed that they needed to take their ART with food. A woman on ART, aged 60–69, said that she was told that she should always eat something before taking her drugs because “HIV drugs are very strong.” She said the health worker never specified a type of food she should eat, but said she “should eat whatever I admire or what I eat and don’t vomit.” Many also said they were told to abstain from alcohol and sex, not just unprotected sex. A female respondent, aged 70–79, who had been on ART for nearly a decade, said that she “used to be a very good alcohol taker” but because of the “need to follow the health worker’s advice,” she reduced her drinking and eventually stopped completely. Perhaps due to feeling messages about sex and alcohol were overstated, some respondents related a wish to have additional counseling, and wanted reminders about what the dos/don’ts are related to ART. So while overall health literacy was high, there was a sense of insecurity about their knowledge, as well as (re)interpretation of information from providers which may have inadvertently increased challenges to adherence [32‐34].

While stigma has lessened with the rollout of ART, and some respondents said things like, “the level at which this illness is now, I think every person is now used to it since it is no longer as scary as it used to be before, 20 or slightly less years ago. You would invite a friend to come and see an HIV/AIDS patient … They would grow very thin, with sores or rash all over yet people never understood what it really was.” (Woman on ART, aged 60–69) And yet, despite the shift of HIV from death-sentence to a chronic condition [3], stigma was presented as a barrier to both access and adherence. For example, being seen in a certain area of a clinic was said to identify one as living with HIV and on ART. Other respondents complained about a lack of confidentiality among health care workers, which reduced individuals’ desire to go to the clinic to access ART. One woman on ART, aged 50–59, at first said that “HIV is not shocking news in the community” but then went on to say, “Except there are some HIV infected persons who feel stigma especially when it comes to collecting drugs. They don’t want to be seen at the facility and what they do, a person gets a friend who is also on HIV drugs, he tells him that as you are going to collect your drugs help me and bring mine... There are the people who are on drugs and don’t want their partner to know about it. Such people when they come to the health facility they want to be weighed and bled for CD4 first when it comes to receiving drugs she wants a friend to receive it on her behalf.” In this vein, some respondents described hiding ART from others including spouses and sexual partners due to fear of repercussions from disclosure, increasing the likelihood of missing doses.

Feelings of social isolation and depression, while not clinically diagnosed, were often connected to and reflective of stigma related to both HIV and old age [35]. A man on ART, aged 60–69, described how loneliness could lead to defaulting, “even when a person lives alone at home, that can make him refuse taking the drugs because he has no one to remind him or to prepare something for him to eat before taking his drugs. He then says to himself, ‘Why do I not die and escape this miserable life?!’” The feelings of desolation led some respondents to say that they were less likely to go to their appointments for accessing ART and less likely to adhere to ART because they felt as if there was no reason to do so.

Resources and tools that boost ART access and adherence are enabling factors, and those which reduce access and adherence are disabling factors. Enabling/disabling factors to access included transportation and mobility; to adherence included reminder strategies, medications characteristics, and poverty/food insecurity; and to both ART access and adherence included travel and disclosure/social support (Table 4).

Despite the relative proximity of our respondents to health clinics, a number of people had trouble accessing ART and general health care due to the cost and or distance that they had to walk to reach the clinic. As older persons, their mobility was often limited due to aging-related morbidities like fatigue and body pain, and/or symptoms of other co-morbidities, e.g. high blood pressure, diabetes, arthritis. The combination of lack of transportation and limited mobility limited access to care.

The majority of our respondents were on a fixed dose combination, which only requires one pill per day, or two pills if they also continue to take Septrin. A woman on ART, aged 60–69, explained how she saw the importance of taking ART daily with her own eyes, “I swallow it regularly but there are some people who do not want to take it. They do exist. I had my second born, she fell sick with that disease (HIV infection). She had refused taking the drugs and by the time they brought her back to the village, she was very unconscious. She used to argue that taking daily drugs was not a normal practice. However, after being approached by health workers, she accepted and started receiving her treatment from Virus (MRC/UVRI clinic) and is now very healthy!” Few respondents complained about pill burdens, but some highlighted other medication characteristics including side effects and just being tired of taking medication daily as reasons for discontinuing ART or deciding not to return to the health facility.

Disclosure was a facilitator and barrier to both ART access and adherence in the OPLWH with whom we spoke. As noted above, many of our respondents reported having disclosed their status to family and friends. Having people know that they were living with HIV and on ART increased their ability to access care. These respondents felt they could ask for assistance and social support when needed. Disclosure improved adherence, as they were unashamed of taking out their medication, and received reminders to take their medication at the set times from family who knew their status. Thus, kin and family support, particularly when paired with disclosure, was a powerful resource for both social support and encouragement to take ART. As one 70–79 year old widow explained, “They [my grandchildren] ask me this, ‘What should we do now grandma? It is already time, take the tablets, put aside other issues!” Asked which tablets the grandchildren tell her to take, she quickly said; “Tablets for HIV. I disclosed to them my status because even the health worker advised me to inform them.” However, a number of respondents relayed that they purposefully did not disclose their status either to partners and/or to extended kin. Their reasoning often related to fear of repercussions, that the spouse/partner would leave them if their positive status was known. Having to conceal pills and appointments complicated access and adherence because pills were hidden outside of their houses, and each time they had to access the health facility for ART they had to invent an excuse.

Poverty as experienced through food insecurity was particularly problematic for adherence, since some respondents said they would skip doses if they did not have something to eat. A man, aged 80-plus, said that he sometimes misses doses “due to food problems” when he does not have food for supper. Hunger also made accessing ART more challenging, as it made traveling to the clinic both less desirable and more challenging, since the majority of respondents walked.

The external environment and the health care environment (outlined in Table 5) played critical roles in older people’s access to HIV care and adherence to ART. Prolonged dry weather was the primary factor related to physical, political and economic factors outside of the health care environment that mattered to our respondents. They complained about the ways that the lack of rainfall was affecting their livelihoods as subsistence and small-scale farmers and the pressure it was putting on their families in terms of food insecurity. An older women in her 70s said, “what can help maybe is having some little money so that we can get a supplement like a half cake or a chapatti from the shops during times of food scarcity from the garden because when there is no food, I completely do away with the taking of the drugs!” Older persons in this community are also caregivers to others, often their grandchildren. The need to take care of others, may at times take their focus, time, energy and resources away from their own health care needs and distract from ART access and adherence.

The health care environment plays a central role in both ART access and adherence. All but one facility in the area are government-supported health clinics, with services and medication provided and/or subsidized by the government. At these clinics, services were accessible without patient cost or need for insurance (as might be the case in other settings). The other facility is run by the Catholic diocese. There were fees related to ART to cover the cost to bring treatment from the urban center to the rural area. However, this fee was generally viewed as reasonable, and less costly than transportation expenditures needed to go to a more distant government health clinic. A man in his 50s who collects ART for himself, his wife and one of his children was asked if there were financial considerations to stay on ART, he explained, “Yes, they ask us to contribute a small amount for collecting the drugs. In my case here, I pay 5000 [shillings; about 1.35USD] each appointment for three of us!” He went on to say that he tries “by all means” to find the money but that if he does not have the money on his appointment date that, “the health workers do not like anyone who misses an appointment because of not having money, … so they go into an agreement with the health workers.” The drugs are issued to him, then he takes the money later.

Barriers to access included clinic factors such as waiting times, provider factors such as health care workers’ disregard for older patients, and system factors including appointment times and drug costs. In terms of adherence, provider counseling was a factor; and for both access and adherence, good care at the health facility (which spans across provider, clinic and system factors) was deemed important (Table 5).

All of the clinics had issues with long waiting times, which the older persons felt were particularly difficult for them because it usually meant that they spent the day without food or water. Some respondents said that waiting times were shorter for ART than for other types of health appointments. One older man had switched facilities and was pleased with the government health facility where he now accesses ART. He said, “The line there is not long. When you reach there, the health workers give you the drugs and you return home in time.” When waiting times existed, it was connected to a lack of appointment scheduling. Although most of our respondents seemed to have knowledge of a date they were supposed to return to collect ART, there were no appointment times. Individuals were seen on a first-come first-served basis. While this seemed to work well enough for ART pick up, if OPLWH needed to see a health worker for any symptoms, health issues, or other needs, they were faced with long waiting times unless they arrived very early in the morning. As we have found in other work from this area, older persons have concerns about the ways they are seen and treated by health care workers. They worry about being shouted at and scolded for not following directions properly [22].

Respondents felt they adhered well when they had “good counseling,” but many wished for continued counseling, which seemed lacking once individuals were receiving ART. The desire for additional counseling may have been related to mental health concerns. One older woman who felt good about her experience with ART explained that when she has discouraging thoughts or worry, “regular contacts with [health workers] help; they tell me to avoid thoughts.” Finally, “good care” at the health facility contributed both to individuals’ willingness to return to the facility to access ART, and their desire to follow the instructions of their health providers and adhere well.

Perceived needs capture issues that OPLWH see as lacking; the term perceived does not imply that these needs are not “real,” but rather that the needs were observed and expressed by the OPLWH themselves (Table 6). Our respondents’ perceived needs included their health care beliefs and their values around health. The OPLWH talked about health beliefs, symptoms and issues related to co-morbidities (usually NCDs) as connected to both access and adherence. One of the key health beliefs that increased the likelihood to access ART on time and adhere to ART as prescribed was that ART was lifesaving. Respondents had seen people die of AIDS-related illnesses earlier in the epidemic and related stories of how ART revived them, and allowed them to live well. A woman, aged 70–79, commented that she looks at ART as “her mother, father and everything in her life.”

The majority of perceived needs relate to not being able to access care or adhere as well, or get the same type of “life saving” results, from other medications and health services as received for HIV. A number of respondents spoke about the difference between accessing ART and medication for chronic conditions, particularly hypertension. The latter often required paying for drugs, or finding out that some of the prescribed drugs were not in stock and needed to be bought elsewhere. One woman in her 60s explained how she was able to take both hypertension medication and her ART, but that unlike her ART that are free, “it is difficult to get the money to buy the tablets for hypertension.” When she was diagnosed, she was staying at her son’s home, and he paid the 7000 Uganda shillings [~2USD] for the tablets. Mental health, whether connected to depression and social isolation discussed above, related to dementia of aging, or other mental health issues, is an area that has received less attention. The most extreme case was man in his 80s who was despondent and in pain, so attempted suicide by swallowing batteries (see quote in Table 6); another woman in her 60s, who was waiting to be put on ART said that although she knows that suicide is not the answer, that she “lives in hardship” and “no one helps or supports” her. Given these circumstances, it was not surprising that there were perceived (and real) mental health needs, which must be addressed as a component of general health to improve overall quality of life among older persons [36].