Study

This qualitative study is part of an endline evaluation of a 12-month pilot intervention led by researchers at the RAND Corporation, a non-profit research organization, and the School of Health Sciences at the Universidad Autónoma de Santo Domingo (UASD). The intervention (i.e., ProMeSA) integrated urban gardens and peer nutritional counseling for adults with HIV experiencing moderate or severe food insecurity and treatment adherence difficulties in urban centers in the Dominican Republic [33]. The intervention comprised gardening training, home-based agricultural follow-up, peer nutritional counseling, and a group garden-based cooking workshop. The participants underwent two follow-up periods to assess potential changes HIV clinical outcomes (viral load, ART adherence, and HIV care retention) and other HIV-related outcomes (internalized and experienced stigma, social support).

The endline qualitative study involved in-depth interviews with patients participating in the pilot program at the intervention clinic (another clinic served as a usual care control). The broader goal of the interviews involved exploring health care experiences, facilitators and barriers to managing HIV, facilitators and barriers to managing a chronic NCD, and participants’ perceptions regarding the feasibility, acceptability, and impacts of the intervention. This article focuses on the facilitators and barriers of co-managing HIV and a chronic NCD using the endline qualitative data.

Setting and participants

The intervention study, ProMeSA, was conducted at two HIV clinics located in the central and northwestern part of the Dominican Republic [33]. The clinics are approximately a 2-hour drive from each other to avoid cross-contamination between participants. Both clinics were selected as they were of similar sizes, 500–800 patients on ART, and offered similar standards of care. Participants in the intervention study were 18 years and older, registered patients at the HIV clinic sites, resided in an urban or peri-urban area, had moderate or severe food insecurity, and had evidence of adherence difficulties. For the qualitative endline sub-study, we used purposive sampling [34] to select intervention participants who also had a chronic NCD (i.e., hypertension, diabetes, prediabetes, high cholesterol, obesity) according to previously collected data. We purposively recruited approximately equal numbers of men and women in-person. Furthermore, participants were recruited until we reached thematic saturation. Institutional Review Boards and ethics committees from RAND, UASD, and the Dominican Ministry of Public Health approved the study protocols. All intervention study participants provided written consent; for the additional qualitative endline interview, participants provided verbal consent to account for literacy and accessibility.

Data collection

Three Dominican medical school graduates (one as intervention study coordinator [GJP] and two as research assistants [FTC, SDC]) were trained in qualitative data collection and analysis by KD and DW prior to and throughout the study period. This involved virtual and in-person trainings in Santo Domingo on how to conduct semi-structured interviews, manage data, transcribe audio recordings, and code transcripts. We used semi-structured, in-depth interviews to explore our themes of interest for this study: health experiences living with HIV, health experiences living with a chronic NCD, and health services experiences with both conditions. Using a socioecological model, we framed questions to understand individual, interpersonal, organizational, and political barriers and facilitators to managing multiple chronic conditions. Example questions included: how are you managing your HIV? How are you managing your chronic condition (T2D, high blood pressure)? Which of your health conditions worries you the most?

Qualitative interviews were completed between October 2019 –February 2020 at the intervention clinic in the Dominican Republic. All interviews were conducted in Spanish, lasted between 45–90 minutes, and were audio recorded with participant consent. Immediately after each interview, interviewers wrote field notes about the interview setting, key themes of the interview, and observations for the following interviews. Audio recordings were transcribed verbatim by the three trained interviewers/research assistants (GJC, FTC, DC) and verified by the first author.

Data analysis

We used a thematic analysis approach to explore participants’ lived experiences co-managing multiple health conditions through the examination of deductive and inductive codes [35]. To do that, we first uploaded transcripts to Dedoose, a web-based text management and analysis software [36]. We then developed a codebook, which was initially developed using questions from the interview guide and field note observations. The codebook was iteratively updated based on the coding of initial transcripts. Four trained coders (DW, GJP, FTC, DC) read and coded the transcripts independently and the first author conducted a secondary coding review for dependability. Transcripts coded by the first author were reviewed by another member of the coding team. When reading the transcripts, coders wrote memos, or notes, about their observations of the data and linked what they read with other transcripts. All coding and analyses were completed in Spanish. Any discrepancies or questions about coding were resolved via coder consensus.

Some key codes we used to analyze participant co-management experiences were: how participants were diagnosed with HIV and the chronic NCD, emotional reactions to their diagnoses, their understanding/knowledge of either condition, how they managed their conditions, social support with management, and their experiences with the healthcare system for both conditions. After coding, all codes were placed in a matrix organized by participant to facilitate constant comparison of experiences among participants and within codes. We constructed summaries by code to examine similarities and differences in participant experiences, and then combined codes to construct overarching themes. Themes are organized using a socioecological framework approach, with consideration for individual, interpersonal, and structural facilitators and barriers to disease co-management in the Dominican Republic. Illustrative quotations that highlighted themes were selected and translated into English by the bilingual authors.

Living with HIV

Living with a non-communicable chronic condition

Living with the double burden of conditions

Participants explained that HIV had its challenges with management; however, there was a consensus among all participants that managing a chronic NCD was more difficult for them. A few participants specifically mentioned that they had trouble getting their chronic NCDs “under control”. For example, a couple participants with hypertension described how they had to seek care at a clinic or emergency room rather recently due to blood pressure dysregulation, thus found a condition like hypertension to be much more unpredictable and difficult to manage than HIV. The perception of several participants when comparing HIV to another condition was that more people were dying from conditions such as T2D complications than HIV, making chronic NCDs more dangerous to live with. As mentioned by a 44-year-old man living with high cholesterol: “At the moment, I would say that HIV is easier to manage because I have medical care [for it] here at the hospital.”

Even without the long-term view, there was a perception that T2D was worse than HIV because it would inevitably “spoil” your body from inside out, as described by a 41-year-old woman living with T2D:

With HIV you can live for some time when you take your medication, but with “sugar” it spoils you from the inside.

Conversely, participants believed that they could “live a normal life” with HIV if they took their ARTs consistently. There was some discussion of eating healthier and taking care of themselves in general, but all participants emphasized medication adherence as the primary form of HIV management. When participants described their experiences with certain chronic conditions, such as T2D and hypertension, medication use was also noted as an important component of self-management; however, medication use was not the only concern. The primary concern was that participants felt burdened by having to change their lifestyles. As one 52-year-old woman managing obesity described of T2D, “You cannot eat anything. You cannot eat much rice, and you cannot eat spaghetti.” These restrictions were particularly difficult as foods like rice and spaghetti were more feasible to attain for participants as they were experiencing food insecurity. However, these were the types of food that were not recommended for them to consume as they managed their NCD. This was further expounded upon by a 56-year-old woman managing hypertension and T2D when explaining which condition was worse for her:

[Diabetes] because with HIV I take my pill and I feel fine. But with diabetes sometimes when one eats something their blood sugar immediately goes up. I must stay vigilant that I can’t eat this or can’t eat that. That’s why it’s more worrisome.

There were concerns about T2D-related complications such as vision loss and amputations. Similarly, hypertension caused fear because people could “die instantly” from one moment to the next. Overall, there was a feeling of not having as much control over these conditions as compared to HIV, where all participants felt relatively secure that HIV-related complications were no longer a threat to their well-being.

Participants provided examples of how their experiences co-managing these conditions varied at the individual, interpersonal, and structural level. A summary of these experiences is provided in Table 2 and in further detail in subsequent sections.

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Table 2. Multi-level participant experiences with co-managing conditions.

https://doi.org/10.1371/journal.pone.0288583.t002

Individual level: Self-management

As participants spoke of their self-management of multiple chronic conditions, there were distinct reasons that self-management was either straightforward or challenging. HIV self-management was most often described as straightforward primarily for two reasons. The first was that participants believed that they had sufficient knowledge or “orientation” about what HIV was and what they needed to do to manage the condition, and they had enough time to practice the skills they needed to self-manage, which was related to the improved self-efficacy. Second, all participants mentioned that the consistent access to necessary medications facilitated their ability to adhere to their treatment plan.

On the other end, participants found self-management of their chronic NCDs to be more difficult. Unlike the amount of orientation they received for HIV, participants felt that they received limited education on how to best self-manage their specific chronic condition. The lack of education on NCD self-management was also tied to how participants experienced their condition as being “sensitive” and “unpredictable” from one day to the next. This is exemplified by a 48-year-old woman with T2D and hypertension.

I manage HIV more easily than diabetes because with HIV I take my medication just fine. But with diabetes, even when I take the medication, sometimes based on what I eat, my blood sugar goes up […] Also with diabetes, if you cut yourself the cut can start to rot–it’s the worst disease. They say that HIV is bad, but the worst are cancer and diabetes.

As described above, hypertension and T2D were cited as being difficult as they were both very sensitive to dietary habits, and were prone to unpredictable extremes (e.g., hyperglycemia, uncontrolled high blood pressure) that would incapacitate participants or require them to seek emergency care. For NCDs, food was often cited as part of the healthcare regimen, equivalent to medication itself. Therefore, food insecurity complicated the ability to purchase the recommended foods and maintain a consistent diet.

Interpersonal level: Patient-provider interactions

Interpersonal relationships were an important theme from the interviews. All participants described that they had “good” interactions with their HIV providers. Specifically, HIV providers were described as friendly, responsive at all times of the day, and supportive, as explained by a 34-year-old man managing obesity when speaking about his providers:

[The doctors] are always looking after you, and they have what I would say–rather it makes me feel good. Because the [doctors] support us, they are always with us.

These positive-leaning relationships with their providers were noteworthy because most participants named their HIV providers as their primary care provider (doctor de cabecera). Participants described the range of services they received from their HIV providers, for example, they received standard HIV-related care, HIV providers evaluated their HIV medication adherence, and followed up on their progress living with HIV.

Only two participants stated that they had more than one medical provider. In addition to their HIV providers, both participants had access to a cardiologist to help them manage their hypertension. One participant explained that they met with their cardiologist on a consistent basis, whereas the second participant met with theirs on an inconsistent basis due to financial constraints related to paying the consultation fee. Of note, participants explained that neither provider discussed the co-management of both of their conditions.

Structural level: Access to care

Both individual self-management and interpersonal interactions with providers are dependent on facilitators and barriers at the structural level. Structurally, a third of the study participants did not have health insurance. Two participants lost coverage between the overall study’s 6-month and 12-month follow-ups, however, their narratives regarding care seeking did not seem to change based on their change in health insurance status. Of the five participants who were without health insurance throughout the 12-month study period, three were the participants of Haitian descent. Of the 14 participants with health insurance, only three participants had a medical provider for each chronic condition. Overwhelmingly, participants with health insurance noted not being linked to care for their chronic NCD due to accessibility barriers. Thus, the narratives of participants with and without health insurance regarding their access to HIV and NCD care were similar.

The narratives on access to health care were distinct for HIV as compared to chronic NCDs. According to participants, the HIV system was clearer or “easier.” Specifically, once participants were diagnosed with HIV, they all described getting linked to the appropriate hospital/clinic and healthcare team. Once linked to the appropriate HIV specialist, participants stated that they also were able to receive low or no cost consultations and medications. Participants attributed their consistent HIV self-management to the financial support they received that facilitated their health care access.

For their chronic NCD condition, the narratives were varied due to inconsistent referrals and poor or no financial assistance. This comparison was detailed by a 49-year-old man managing hypertension and cholesterol.

HIV is easier because I just need to have transportation money to come here and do not need to pay for anything else. But for blood pressure, for cardio, I must always bring money because it’s a private clinic.

First, participants did not present narratives detailing a consistent referral system after diagnosis. Several participants who were diagnosed with T2D or had elevated blood sugar (i.e., prediabetes) were not referred to specialists upon diagnosis. Further, a few participants with hypertension spoke about not having access to a specialist for their care.

When asked if participants knew where to seek care for their conditions the responses were either they did not know, the emergency room, or they spoke with their HIV providers. Emergency rooms were often stated as the primary site to address health needs as they arose and could be their primary source of information for managing their condition. This was especially the case for participants who described living too far away from specialists or never receiving a medical referral. This balance was explained by 53-year-old man living with hypertension and T2D:

They send us to Santiago [a major city]. There is not a clinic here that you could say, let me go there because it is for diabetes or something. I think that for emergencies if you go to the emergency room and a doctor sees you and finds out that you have high blood pressure or some other problem, then you will get referred to see a specialist.

When it came to asking their HIV providers for help or follow-up on non-HIV conditions, the most common example was that HIV providers checked their blood pressure thus participants deemed these vital sign checks as part of their care for hypertension. As for financial resources to seek care, participants mentioned that they could only go to specialists when they could save enough money for the transportation to the appointment, the consult, and any prescribed medications. Relatedly, participants spoke about how job insecurity and limited financial resources made it harder to seek specialized care, maintain a recommended dietary regimen, and/or purchase necessary medications. The issue of the cost of medication was highlighted by a 48-year-old woman living with hypertension and T2D:

Treatment for diabetes is expensive. So, diabetes treatment is not given to people. See, when I came here the doctor prescribed me a pill that cost me 4,000 and some pesos. See people who are poor and do not work may be able to buy one box of medication but would not be able to buy two.

The above participant quote highlighted the dilemmas faced by people who have limited resources when managing their chronic conditions. This participant further described how T2D required money for “a proper diet,” which made the need for balancing said proper diet and purchasing medication difficult when living in an economically vulnerable position. For participants that could not afford consistent access to specialists, a couple would go to government clinics (policlínicas) when needed for basic checkups.

The inconsistency of health care access, whether due to unclear referral system to establish care or lack of financial resources to see and build rapport with specialists, made it challenging for participants to manage their chronic condition. Structural barriers to care affected individual and interpersonal level factors impacting the co-management of multiple chronic conditions.

Strengths and limitations

The strengths of this study are that we explored the multilevel factors that affect co-managing multiple chronic conditions from the perspective of adult patients in the Dominican Republic, to our knowledge one of the first of its kind. Additionally, we focused our study on participants who recently experienced food insecurity, which centers the conversation on individuals who are managing their health amid economic vulnerabilities. Limitations of the study were that we selected and interviewed participants who were already linked to HIV care and were at the end of an intervention; therefore, the experiences of individuals who were currently not in HIV-related care were not reflected in these interviews. However, participants were able to reflect on their experiences getting linked to care, retrospectively, to provide a baseline comparison between their conditions.