Introduction
Methods
Setting
Participants and sampling
Data collection
Domain I. Introductory Question on HTN and DM and associated care
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Patient | |
1. Can you describe to me your typical day? Probe: How does HTN/DM play a role in your daily routine? 2. Can you tell me how and when you found out you have HTN/DM? Probe: What was that experience like for you? Knowledge and Attitudes 3. If you had to explain to a family member what HTN/DM is, how would you explain it? Probe: What do you think caused your HTN/DM? Do you think HTN/DM is preventable? Why or why not? Do you think HTN/DM is curable? Why or why not? 4. What have you done in the past and what are you currently doing to manage HTN/DM? Probe: Can you tell me what medications or other remedies you are taking or had taken? Does diet play a role? If so how? Does exercise play a role? If so how? | |
HCP | |
1. Can you describe what your role is in this healthcare facility? 2. What happens to a patient with HTN/DM who comes to this facility? Can you walk me through that process? | |
Domain II. HTN and DM care support and care system
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Patient | |
5. Who do you go for treatment when you feel sick? Probe: Do you go to traditional healers or other non-medical providers? If yes, can you tell me more about it? Who do you trust to give you advice or information about HTN/DM? 6. Do you feel comfortable sharing your diagnosis of HTN/DM with your family members? Why or why not? 7. Would you feel comfortable sharing your diagnosis of HTN/DM with your neighbors or community? Why or why not? 8. What resources are available in your community for learning about HTN/DM? | |
HCP | |
3. How are HTN/DM diagnosed in this community? 4. How do people with HTN/DM manage and treat their disease in this community? 5. Can you tell me about any specific guidelines followed by HCPs in Nakaseke district for HTN/DM diagnosis and management? 6. What can patients with HTN/DM do to be actively involved in their health management? 7. Tell me about any recommendations you give to your patients for managing HTN/DM? Probe: What are the characteristics of patients that are more likely to listen to your advice and recommendations? 8. Have there been efforts to improve the care of patients with HTN/DM in this community and facility? 9. Tell me about any community-based programs or resources available to adults with HTN/DM and their caregivers/family members in Nakaseke district? | |
Domain III. Barriers and Facilitators
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Patient | |
9. Tell me about the difficult parts of HTN/DM treatment access and drug adherence for adults with HTN and DM in Nakaseke. 10. Tell me about the facilitators of HTN/DM treatment access and drug adherence for adults with HTN and DM in Nakaseke. 11. How satisfied are you with the health care services you receive for HTN and DM? Please describe. | |
HCP | |
10. Tell me about the barriers to HTN/DM treatment access and adhrerence for adults with HTN/DM in Nakaseke? Probe: Tell me what challenges you face in diagnosing HTN/DM. What barriers do you face in following these guidelines? 11. What common challenges do you face in educating patients about their HTN and DM diagnosis and/or management? Probe: Are there common knowledge gaps, myths, or misconceptions that patients have that contribute to this? 12. How does the use of traditional and/or complementary and alternative medicine play a role in the lives of your patients with HTN/DM? Probe: How does it play a role in their decision to seek healthcare in general? And in their decision to seek care for HTN/DM? Are there specific characteristics of patients who are more likely to seek care from traditional healers or other non-medical providers? 13. Tell me about the facilitators of HTN/DM treatment access and adherence for adults with HTN/DM in Nakaseke? | |
Domain IV. The goal is to help participants discuss the role of VHTs.
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Patient | |
12. Have you interacted with or received care from a VHT? 13. Do you believe VHTs are an important part of the health system? 14. Do you think that VHTs could play a role in helping you manage your HTN and DM? | |
HCP | |
14. What is the role of VHTs in the management of patients with HTN/DM? Probe: How do you perceive the quality of care delivered by VHTs? | |
Ending Questions
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Patient | |
15. What do you wish you knew more about, related to HTN/DM? 16. How would you like to receive information about HTN/DM and how to manage it? | |
HCP | |
15. How comfortable do you feel managing patients with HTN/DM? Please describe. Probe: (If any answer other than comfortable) what would help you feel more comfortable in managing patients with HTN/DM? 16. Can you think of any other HCPs with HTN/DM related training in the community that would be useful for us to speak with? |
Analysis
Ethical approval and consent
Results
Characteristic | Patients (N = 24) | HCPs (N = 11) | VHTs (N = 12) |
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Age groupa | |||
18–30 | 0 | 1 (9.1%) | 0 |
31–40 | 0 | 3 (27.3%) | 4 (33.3%) |
41–50 | 5 (22.7%) | 3 (27.3%) | 3 (25.0%) |
51–60 | 10 (45.5%) | 4 (36.4%) | 5 (41.7%) |
61–70 | 3 (13.6%) | 0 | 0 |
71–80 | 2 (9.1%) | 0 | 0 |
81–90 | 2 (9.1%) | 0 | 0 |
Sex | |||
Female | 20 (83.3%) | 8 (72.7%) | 6 (50.0%) |
Male | 4 (16.7%) | 3 (27.3%) | 6 (50.0%) |
Education levelb | |||
None | 1 (4.2%) | 0 | 0 |
Primary | 12 (50.0%) | 0 | 5 (41.7%) |
Secondary | 5 (20.8%) | 2 (18.2%) | 6 (50.0%) |
Post-secondary (Not including certificate) | 2 (8.3%) | 9 (81.8%) | 1 (8.3%) |
Diagnosis | N/A | N/A | |
Hypertension only | 11 (45.8%) | ||
Diabetes only | 4 (16.7%) | ||
Hypertension and diabetes concurrently | 9 (37.5%) | ||
Village | |||
Kasangombe | 9 (37.5%) | 1 (9.1%) | 4 (33.3%) |
Nakaseke sub county | 8 (33.3%) | 0 | 4 (33.3%) |
Nakaseke town council | 7 (29.2%) | 10 (90.9%) | 4 (33.3%) |
HCP role | N/A | N/A | |
Nurse | 4 (36.4%) | ||
Doctor | 3 (27.3%) | ||
Pharmacist | 2 (18.2%) | ||
Nutritionist | 1 (9.1%) | ||
Private Pharmacist | 1 (9.1%) |
Lack of knowledge of HTN and DM
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They are not communicable like HIV […] You can’t prevent hypertension or diabetes. (HTN and DM, Female, Kasangombe, P4)
I don’t know. No [I can’t even speculate the cause], because I never used to take sugar, indeed I was so perplexed when I was told that I am diabetic. I couldn’t understand […] I didn’t have any pain, or anything that would prompt me to go to the hospital, I was just there feeling nothing. (DM only, Male, Nakaseke sub-county, P10)
If someone shares about HIV what about diabetes, I wouldn’t hide it even from a woman because she cannot contract diabetes, diabetes is not communicable. (DM only, Male, Nakaseke town council, P9)
Yes [diet has many roles in managing diabetes]. It helps because there are times when I get blurred vision when I delay eating food, and when you eat and take medication too it is well for you. Food moves with the drugs it helps to transport blood. (DM only, Male, Nakaseke town council, P9)
You might have palpitations and also get worried of children’s school fees, then you find increased blood sugar level but you are on drugs. So the doctor asks, “are you taking your medication?” “Yes doctor I do take,” “what are you worried about” and you come to realize that there is something distressing you. (HTN and DM, Female, Nakaseke sub-county, P6)
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)
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Lay sources of HTN and DM information
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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)
I hear food with starch should not be eaten like cassava. [I get this information] from our colleagues. (DM only, Female, Kasangombe, P11)
Why wouldn’t I share with them [friends and neighbors]? [I share with them because] maybe they could give me some advice. (HTN only, Female, Kasangombe, P23)
My friend [advises me on hypertension]. They [my friends] also have hypertension. (HTN only, Female, Nakaseke town council, P12)
There is no problem [sharing with neighbors about the condition] because I explain to many of my friends, and relatives who say that they get heat in the body, sweating, thirst because I also get these symptoms. I tell them to reduce on taking sugar, reduce on eating fatty foods. (DM only, Male, Nakaseke sub-county, P10)
I feel comfortable. Because I want to help them be more aware of hypertension. I try to tell them to avoid getting worried when they get a similar problem because worrying precedes hypertension. (HTN only, Female, Kasangombe, P20)
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Patient trust in HCPs
vs
lack of involvement in the medical decision-making processes
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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)
I know them [the drugs], they are dispensed to me. […]do I know how to read your English [to name the drugs]? (HTN and DM, Female, Nakaseke town council, P1)
I am not a doctor, unless I bring you the prescription book but I don’t know the drugs. (HTN and DM, Female, Kasangombe, P5)
Sometimes we find that the drugs are finished, and we are told to go and buy from places were the drugs are, at times you don’t have money and you have to first work to make the money then go and buy the drugs. (DM only, Female, Kasangombe, P11)
When I take it, I feel like throwing up, I feel disgusted in my heart. [when this happens,] I first take some break. I take a break for about 2 days such that these that I have taken descend down (DM only, Female, Kasangombe, P11)
I buy [drugs], they are not there at the hospital that is the problem. […] The government has not endeavored to know that diabetes exists it the country and that it affects people, I thought that I was the first to ever get this disease and I almost became hopeless but I realized that we were about 680 patients […] but there are those who die without ever going to the hospital. (DM only, Male, Nakaseke sub-county, P10)
“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)
“It is doctors [I trust to give information on HTN and DM]. We get our blood sugar level measured […] and if it has increased then I resume taking drugs. Sometimes I take drugs, sometimes I don’t, so you take one tablet once a day for hypertension and for diabetes one tablet in the morning and one in the evening.” (HTN and DM, Female, Nakaseke town council, P3)
That [information on any diseases] comes from a doctor and nobody can diagnose a disease it is only a doctor who can do that [provide information]. (DM only, Male, Nakaseke sub-county, P8)
“Many times, the person to trust [on HTN and DM information] is the one who also has the disease. The second is the health worker. Not the traditional herbalists, but the real professional health worker because they are well trained.” (HTN and DM, Female, Nakaseke sub-county, P18)
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Inability to access medication due to financial constraints
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“I was told to started 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)
The only problem is when there are no drugs in the hospital. When the drugs are finished, it is you who has to look for them to survive. (DM only, Male, Nakaseke sub-county, P9)
Problem is lack of money to buy capsules to take. Even to get the drugs from Nakaseke is far and, boda boda [motorcycle] are also expensive. When there are no free drugs in hospitals, all you get is Panadol. (HTN only, Female, Nakaseke sub-county, P16)
You have to take your prescription. [It is easy to get drugs] If it is available [in the hospital] but right now I need money to buy the drugs.
(HTN only, Female, Kasangombe, P23)
I had not encountered any [difficulties] yet because we have been getting the government drugs and even when there are only a few, at least they divide and everyone gets a little and we are informed to come back [to the hospital] when that is finished. We get to pick more drugs if the stocks are refilled. (HTN and DM, Female, Nakaseke sub-county, P7)
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Negative reputation associated with HCPs
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Some people fear our attitudes, they don’t want to come to the hospital. (Female, Nurse at Nakaseke Hospital, HCP 1)
They [patients] can fear the health workers […] the way you handle that patient can affect the patient to come back to the hospital. […] If we are friendly with the patients it will be ok. (Female, Nurse at Nakaseke Hospital, HCP 1)
When [patients] reach the hospital, we tell them “you have high levels” then they get worried. […] [We tell the patients] Once a diabetic is always a diabetic. So that worries also. It will take long to make one stabilize [to manage their condition].
(Female, Nurse at Nakaseke Hospital, HCP 8)
Some [patients] say some staffs are harsh. Some say, if you’re going to hospital, people might think they have HIV. So, most people fear hospitals. […] When a patient has taken drugs for 1 year then starts taking herbals, herbals fail, it [symptoms of DM] comes back, and someone [a HCP] could abuse her [the patient], “why weren’t you on diabetic drugs? Now you’re coming back?” such things. You shout at her. It doesn’t feel good. (Female, Pharmacist at Nakaseke Hospital, HCP 5)
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Patients’ herbal medication use and hospital as the last resort
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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 in Nakaseke Hospital, HCP 3)
Sometimes even those patients can take [traditional medicine] and sometimes they don’t come to the hospital. But at the end, they end up coming back here because they have tried that traditional herbs and it doesn’t work. (Female, Nurse at Nakaseke Hospital, HCP 1)
Especially those [patients] ones in the village, they are not educated very well. “I was thinking herbal drugs,” those are the stories they give us. […] They come in with their conditions worse.
(Female, Nurse at Nakaseke Hospital, HCP 3)
Some [patients] don’t have enough drugs because at times they come here [hospital] and drugs are out of stock, [which is] another reason they feel that these herbals are better than tablets. (Female, Doctor at Nakaseke Hospital, HCP 7)
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Challenges related to patient education on HTN and DM
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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, HCP 9)
If we have budget for some fuel and go to villages, you can health educate these people, you talk about symptoms of hypertension and diabetes, you can health educate the community. (Female, Nurse at Nakaseke Hospital, HCP 1)
We do our best to convince them [the patients] and tell them the complications [of medication non-adherence]. But it is a struggle to convince them to take their hypertensive drugs. If I take the blood pressure, [and I] say it is ok, they [patients] don’t take their drugs.
(Female, Nurse at Nakaseke Hospital, HCP 3)
They [patients] are good at forgetting. They easily forget so we continue to health educate them. (Female, Nurse at Nakaseke Hospital, HCP 2)
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Limited scope of VHT responsibilities related to health care
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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, VHT 9)
I don’t diagnose such patients, but if I find them in their homes I urge them to go to a health facility. I do follow up on them. (Female VHT, Nakaseke town council, VHT 11)
We encourage that they [patients with DM] […] get tested to know their blood sugar levels to ensure that they are well and that it doesn’t continue rising. (Male VHT, Kasangombe, VHT 1)
[We take care of patients with HTN and DM by] Visiting them and telling them to take their medication. And going back for review to hospital on due day. (Female VHT, Kasangombe, VHT 2)
I have never been there personally to see how it is done [diagnosis of HTN and DM] but we advise them to go to hospital when they have symptoms. (Female VHT, Nakaseke sub-county, VHT 4)
We refer patients with DM straight to the hospital when we identify them (Male VHT, Nakaseke sub-county, VHT 6)
We find these patients and refer them and even do follow up encouraging them to take their medication. (Female VHT, Nakaseke town council, VHT 11)
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Concerns about VHT role in HTN and DM care from the perspectives of patients and HCPs
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I personally don’t believe that they can do it [manage DM]. It [knowledge on DM] is hard. (HTN and DM, Female, Nakaseke sub-county P7)
They [VHTs] don’t help us in any way, and they have no role in this disease. I would request that it is the patients that should be trained. […] Their importance is weak, it cannot benefit us in any way. They [VHTs] could be beneficial to other patients such as those with malaria but our disease is so complicated. (DM only, Male, Nakaseke sub-county, P10)
They [VHTs] have roles in other diseases but not concerning diabetes and hypertension. I do not fully certify them. I don’t think [VHTs can play a role in HTN and DM] maybe malaria and child health. I doubt their abilities. (HTN and DM, Female, Kasangombe, P21)
I don’t talk with VHTs. They used to treat malaria back then and I have never seen them help patients with hypertension. They are necessary to help children under 5 years old by dispensing malarial drugs but they are not helpful to us the elderly. They do not give out drugs for hypertension and diabetes. They are not trained, they simply help people. The good thing is that we have village clinics even if they [VHTs] are not available. (HTN only, Female, Nakaseke sub-county, P16)
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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)
They [VHTs] do a lot of work in the villages, but for HTN and DM, it is above their standard. […] They don’t know enough to convince the patients with HTN and DM. What drug to get, what to eat, and what to drink. (Female, Pharmacist at Nakaseke Hospital, HCP 5)
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Patient-reported challenges in HTN and DM care
Lack of knowledge of HTN and DM
“They are not communicable like HIV […] You can’t prevent hypertension or diabetes.” (HTN and DM, Female, Kasangombe, P4)
“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
“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)
Patient trust in HCPs vs lack of involvement in the medical decision-making processes
“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)
“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)
“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
“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
Negative reputation associated with HCPs
“some people fear our attitudes; they don’t want to come to the hospital.” (Female, Nurse at Nakaseke Hospital, HCP1)
Patients’ herbal medication use and hospital as the 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)
Challenges related to patient education on HTN and DM
“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
“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
“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)