The thematic analysis produced three major themes and 9 sub-themes from interviews with 24 patients with HTN and/or DM, 11 HCPs, and 12 VHTs. Figure 2 provides an overview of the relationship between the major themes and the sub-themes (Fig. 2 Summary of major themes and sub-themes). Table 2 provides demographic characteristics of the 47 total participants. Tables 3, 4 and 5 summarize the major themes and additional participant quotes related to challenges in HTN and DM care, identified from interviewing the three key stakeholder groups. Participants’ quotes are contextualized by characteristics such as the chronic condition (HTN and/or DM), gender, the participant’s county of residence, and the participant identification number.
Patient-reported challenges in HTN and DM care
Lack of knowledge of HTN and DM
Patient interviews revealed that patients conceptualized the cause, preventability, treatment, and curability of HTN and DM with limitations. These lay conceptualizations limited patients’ ability to adhere to medications and obtain timely screening. Many participants correctly identified HTN and DM as non-communicable diseases. However, they believed that only communicable diseases were preventable and, therefore, that NCDs were not.
“They are not communicable like HIV […] You can’t prevent hypertension or diabetes.” (HTN and DM, Female, Kasangombe, P4)
Some patients described pondering their symptoms for more than a year and delaying hospital screening, only deciding to go to the hospital when their symptoms became severe and affected their daily lives, or after consulting with members of their community. Many patients thought that the cause of HTN and DM was stress, others identified genetics, and some reported a belief that the diseases affected people at random. The belief that stress influenced disease development led some patients to choose relaxation or television watching as HTN and DM self-care. Most patients acknowledged the role of diet and physical activity in HTN and DM management, as informed by their HCPs, but often drew on limited or incorrect information on the topic. Some patients, for example, advocated for avoiding sweet potatoes or soda when feeling weak and one patient reported having been taught what to avoid eating, but never what to eat.
“You hear them speak of what shouldn’t be eaten but we have not yet gotten a teaching about how to conduct our lives.” (DM only, Female, Kasangombe, P11)
Lay sources of HTN and DM information
Financial constraints and physical distance appeared to be major barriers to accessing health care. Instead of making hospital visits, many patients reported relying on advice from lay sources (family, neighbors, and community) for managing their HTN and DM. The fact that HTN and DM were not associated with any stigma seemed to encourage communication and information sharing about the diseases within the community.
“Yes, [I feel comfortable sharing with family members and neighbors] because somebody might advise and recommend you to a better medication or to traditional medicines.” (HTN only, Female, Nakaseke Sub-county, P15)
Most of the information on HTN and DM available to study participants appeared to have been defined collectively by the community, drawing upon experiences of individual community members. As a result, many patients reportedly made decisions to receive triage after their symptoms were legitimized by families and neighbors. Patients also reported sometimes changing their medication (type or dosage) based on community members’ recommendations. While patients reported trusting the information provided by health professionals, open access to lay sources meant they were prone to re-interpret the details such as HTN and DM etiology and curability based on the experiences or beliefs of others in the community.
Patient trust in HCPs vs lack of involvement in the medical decision-making processes
Patient interviews revealed that when patients did interact with the healthcare system they had a limited role in the medical decision-making process. Very few patients could name or describe the drugs they were currently taking.
“Their [the prescribed drugs] names! They [the doctors] just give me the drugs, I don’t know the names. I am just given the drugs.” (HTN and DM, Female, Kasangombe, P4)
Many patients reported leaving medical decisions completely up to doctors, increasing the medical knowledge gap. This left patients more prone to modifying their treatment without understanding the consequence. As an example, patients would often stop taking their medication or alter its dosage in response to side-effects before consulting with their doctors. Those who changed their medication dosage reportedly did so based on their experience and physical reactions. Some patients who expressed discomfort with the idea of modern drugs also reported terminating medication usage.
“I get drugs from the hospital so when I have them, I take my drugs. However, I don’t take them daily. I take breaks from them, but there are times when you go back [to the hospital] and if it [the blood pressure] increases, I am given the drugs.” (HTN and DM, Female, Nakaseke-sub county, P6)
Despite patients’ limited involvement in medical processes, it is important to note that patients did not report dissatisfaction with or concern about the competence of their care. In fact, most patients expressed having trust in their doctors for information and in making medical decisions while they also expressed having trust in lay sources and adherence to traditional herbal medicine.
“We are in a good relationship with the doctors, because they comfort us and teach us what we need to do to live.” (DM only, Male, Nakaseke sub-county, P8)
Inability to access medication due to financial constraints
Somewhat contradicting their comments on voluntary lack of adherence to medication regimens, patients did uniformly identify drug adherence as the most important treatment for HTN and DM, though also reported that limited access to medication was a major barrier. Although the Ugandan health care system funds most of the health services provided in public hospitals, the hospitals and lower level health centers frequently experience drug shortages. Given these drug shortages at the public pharmacies, patients often are required to purchase medications from private pharmacies, though this is often at a substantial cost. Thus, patients reported financial hardship as an additional barrier to accessing medications due to high costs. As a result, some patients reported reducing their medication dosage or mixing their drugs with traditional herbal medicine. Most patients reported a belief that HTN and DM were curable with consistent adherence to modern drugs. Thus, many patients reported ceasing medication usage once symptoms disappeared.
“I was told to start on drugs, and to regularly come to [the hospital to] pick up the drugs. However sometimes I go there and the drugs are not available. I also don’t have money. Then I keep quiet with nothing to do.” (HTN only, Female, Nakaseke town council, P17)
HCP-reported challenges in HTN and DM care
HCPs frustrations about HTN and DM management largely centered around patients’ lack of adherence to treatment. HCPs reported lack of adherence as resulting from difficulty educating patients or their use of alternative herbal medicines in place of modern medications. They also expressed the belief that the negative reputation of HCPs prevented patients from seeking health care.
Negative reputation associated with HCPs
HCPs expressed a frustration with patients’ lack of medication adherence and their subsequently worsening biomarkers and symptoms in follow-up visits. Some HCPs reported that patients feared the healthcare staff because of HCP’s negative attitudes toward patients and their lack of adherence or inconsistency in utilizing medical services.
“some people fear our attitudes; they don’t want to come to the hospital.” (Female, Nurse at Nakaseke Hospital, HCP1)
Some of the same HCPs reported that limited drug availability at the hospital and patients’ financial constraints were additional reasons for patients’ failure to follow-up.
Patients’ herbal medication use and hospital as the last resort
There were also thoughts from HCPs that patients may not adhere to medications due to a cultural preference for herbal medicine. According to HCPs, most patients with HTN and DM initially draw on herbal medicine and seek out hospital-based treatment as a last resort.
“people believe in herbal so much even they may not come [to the hospital]. Person comes in too late and say that we’ve been using herbal. […] hospital is always the last solution.” (Female, Nurse at Nakaseke Hospital, HCP3)
HCPs also expressed concern that patients would sometimes terminate, alter dosage, or take their prescribed medication concurrently with herbal medicine to compensate for missing doses. A few HCPs also expressed concern that taking herbal and modern medicines together might cause antagonistic or negative reactions.
Challenges related to patient education on HTN and DM
Interviews with HCPs revealed challenges in their efforts to educate patients with HTN and DM. The reported challenges included lack of resources (educational and human) and time constraints. HCPs reported having no resources, such as clinical or educational guidelines, to use for HTN and DM education. A few HCPs also acknowledged the difficulties of lifestyle education due to existing patient habits, such as routine meat consumption and taking motorized transportation as opposed to exercising. Some HCPs also expressed that the lack of funds and resources to perform community outreach was a barrier to initiating community-based education opportunities.
Additionally, some HCPs reported difficulties in providing HTN and DM education while also serving patients with acute and urgent medical conditions. Some HCPs reported having a lack of staff members with specialized knowledge of HTN and DM. For example, nurses (the only medical professionals running Nakaseke Hospital’s DM clinic) expressed major concerns about not having an HCP with higher-level training present for professional medical assistance. Some HCPs also reported not providing HTN and DM education because of the time commitment required.
“we’ve not done enough of the counseling, because we don’t have the time […] Diabetes and hypertension needs time [in counseling] because, you need to talk about lifestyles. For both hypertension and diabetes, when we talk about weight reduction, it needs a lot of skills, it needs a lot of examples, needs a lot of talking” (Male, Doctor in Kasangombe, HCP9)
VHT role in HTN and DM care
Limited scope of VHT responsibilities related to health care
While interviews overall reported VHTs’ active role in communicable disease prevention (exemplified by HCPs indicating that VHTs were especially helpful with regard to HIV management and family planning), VHT interviews revealed their limited role in HTN and DM management. All VHTs defined their current role in HTN and DM as either non-existent or limited to hospital referrals when patients approached them with symptoms.
“We have not taken the role of managing the diseases [HTN and DM] yet, so we refer anyone we discover to the hospital.” (Male VHT, Nakaseke town council, VHT9)
Concerns about a VHT role in HTN and DM care from the perspectives of patients and HCPs
Both patients and HCPs expressed concern with VHTs taking on roles related to HTN and DM management. Many patients and some HCPs doubted VHT’s ability to understand HTN and DM, voicing the belief that communicable disease prevention is simpler to understand, and NCD prevention, in the case of HTN and DM, too complex.
“I personally don’t believe that they can do it [manage DM]. It [knowledge of DM] is hard.” (HTN and DM, Female, Nakaseke sub-county, P7)
“I don’t know their role, but I think HTN and DM are a bit complicated for them. They can only handle the simple diseases like malaria, diarrhea. […] they are trained for HIV but not HTN and DM. And because they have very little knowledge about HTN and DM that most of those people in the villages [with HTN and DM] do not even have relationship with village health team members. They are always trained and given special courses [in HIV], but I never heard any about DM and HTN.” (Male, Pharmacist at Nakaseke Hospital, HCP6)
Some HCPs worried that VHT’s might lack motivation to volunteer for additional responsibility related to NCD prevention if VHTs were not compensated monetarily. One HCP cited HIV management as a successful example. She attributed the success of HIV management to organizations that financially supported VHT training, mobilization, and compensation. She expressed her concern about giving VHTs any role in HTN and DM management when there are no such organizations dedicated to HTN and DM in rural Uganda.