Table 2 below is an overview of the themes that emerged from the data. Three prominent themes emanated (1) Disengagement is a public health problem that needs attention, (2) Understanding disengagement: HCWs express empathy, (3) Feelings towards patients who disengage from treatment: HCWs expressing anger and frustration. These broader themes are further divided into sub-themes presented fully below.
Main themes identified in the analysis
1. Disengagement is a public health problem that needs attention.
2. Understanding disengagement: HCWs express empathy.
• Mental health challenges.
• Non-disclosure leading to disengagement and the dilemma of disclosing the HIV status.
• Concern for patients who disengage from treatment.
5. HCWs expressing anger and frustration.
• Frustration and anger.
• Patients who disengage from treatment do not take responsibility for their health.
• Patients who disengage from treatment are full of excuses.
Some words that the HCWs used in the interviews describe the feeling that they experience when dealing with patients who cycle in and out of care. These are described in Table 3.
Categorisation of language used by participants in describing people who disengage
Empathy and sympathy
“I get worried and concerned”
“I feel very, very bad”
“It makes me sad”
Anger and frustration
“What frustrates me”
“I just want to strangle”
“they make you angry”
“There is a bit of frustration, there is a bit of disappointment”
“I can admittedly feel irritated with the patients”
Theme 1: Disengagement is a public health problem that needs attention.
When the study participants were asked about patient disengagement from ART, most acknowledged that disengagement is a significant public health concern. Participants outlined several adverse effects of disengagement on the health system and the individual. Moreover, HCWs described the consequences of disengagement, highlighting that disengagement is a threat to the person's health, treatment resistance, transmission risk, and burden for the health care system.
“It is a problem because like you know, like the virus becomes resistant to medication, so which is posing danger to the person who is not taking the medication”. (Clinician, age 49)
Most of the participants reported that disengagement from treatment affects more than the individual due to transmission when the viral load is raised. In addition, the participants noted that disengagement results in the development of ART resistance requiring second-line treatment and the health system as patients who disengage often get sick and require hospital admission.
“It's a problem because a person will start all over and get sick and now hospitals have to [be] full because of this person who just decided to stop taking their treatment whereas they had a chance to take their treatment, so they don't get sick”. (Support staff, age 38)
“I think it’s a big problem having worked in ARVs for a long time it feels like we’ve hit like a second wave of the epidemic. Like initially, we had very sick people coming in, but nobody had been on ARVs before so you, we were picking up the patients who were the weakest and getting them on treatments. … but now there [are] people who’ve been on ARVs before and stopped so it makes their treatment more complicated”. (Clinician, age 42)
The participants saw disengagement from treatment as a significant and growing public health problem.
Theme 2: Understanding disengagement: HCWs express empathy.
Apart from describing disengagement as a public health problem, the participants showed an understanding of the multiple factors that influence treatment adherence. They highlighted some reasons for disengagement that were justifiable in their own perspectives. Their responses showed that they have some empathy towards patients as they acknowledge that patients may disengage from treatment due to mental health challenges and non-disclosure, which they saw as challenges for PLHIV. The participants went on to describe how non-disclosure is related to social support. Moreover, they illustrated how social support affects treatment adherence and could be linked to the stigma of disclosing. The participants showed concern for patients who disengage from treatment. The following section presents factors that lead to disengagement as noted by HCWs.
Mental health challenges.
Most of the participants stated that mental health challenges, including depression, affect the patients’ ability to make decisions and contribute immensely to disengagement from treatment.
“Most of the patients that are having mental illness default their ARVs because of their poor insight or their poor judgement…… the patient comes, let’s say he’s HIV positive on ARVs and then develops mental illness, and then because mental illness affects their judgement and their insight when they are psychotic and in a psychotic state, then they can’t reason, they just do things that are very weird and things that are very odd to people”. (Clinician, age 49)
The participants drew an association between mental illness symptoms (lack of insight, poor judgement) and adherence. The participants note that mental illnesses alter patients’ thought processes and decision making, which could contribute to disengagement. The participants stated that disengagement from HIV treatment is a product of underlying mental health challenges. Therefore, they perceive mental illness to contribute to adherence and note that disengagement is not a choice, but it is behaviour that is influenced by the patient’s mental health among many other challenges.
“Some are not mentally okay, maybe that could also be, that could, I could say maybe it's not a normal behaviour because they also go for depression; some they have like mental illnesses…”. (Support staff, age 26)
The participants reported that disengagement from treatment reflected what the patients experience in their lives. The participants stated that when a patient is depressed, going through a rough patch or when they have lost hope in life, they are likely to disengage from treatment.
“…because she was struggling with her compliance on ARVs and TB treatment, we referred the patient for an assessment for depression and the patient was depressed because there was a lot of things that happened. So we started addressing those, she was seen by the psychologist and we started her on antidepressants.”. (Clinician, age 52).
HCWs associated mental health challenges and disengagement from treatment and described the different ways in which mental health can affect adherence to HIV treatment. The participants noted that for some patients, addressing the mental health challenges in turn addresses disengagement.
Non-disclosure leading to disengagement and the dilemma of disclosing the HIV status.
Non-disclosure was emphasised as one of the major reasons for disengagement and described as a “major problem”, contributing to many cases of disengagement. They reported that in cases where the partner and family are unaware of the HIV status, patients were less likely to take treatment in front of them, resulting in disengagement.
“I think it’s difficult disclosing and, if I haven’t disclosed to my partner but every night at eight o’clock, we sit and have supper and I must take my treatment, you know?” (Clinician, age 52)
“I see a lot of patients who are not taking treatment well because of non-disclosure so they haven’t told anyone at home” (Clinician, age 42).
The participants showed empathy for patients who found disclosing difficult because of their fear of stigma and lack of support. Although HCWs understood these barriers to taking HIV treatment, they emphasised the fact that HIV disclosure to partners and family can help to ensure treatment adherence.
I strongly believe if a person discloses to a person, it will be easy for that person even to take the medication because there is a support. Disclosing can be hard because your family may not understand” (Support staff, age 57).
“So, sometimes they say it’s the reason they can’t disclose because the guy now is going to dump that person because of the HIV status” (Support staff, age 42)
“I am not saying people should just talk about it if they are not yet comfortable, but they should not hide it from everyone, such as their families. I don't think all your family members can judge you. You can even speak to your parent, privately, so you can get support in that way.” (Support staff, age 38)
The participants highlighted that disengagement is important especially to family and partners as the patients spend a lot of time with these people. Hiding their status from these significant people makes it difficult for patients to take their treatment. The HCWs acknowledged that disclosure is a challenge, showing empathy for patients. They understand the challenges that come with disengagement as one might not receive the support they anticipated.
Concern for patients who disengage from treatment.
Most of the participants reported being worried about patients when they disengage from treatment because they are aware of the adverse consequences of disengagement. The participants showed concern for patients who disengaged from treatment, and they emphasised that they are willing to help them in ways that they can.
“I get worried and concerned. I want to know the reasons so that we can tackle whatever challenges she has to overcome those challenges so that the patient can be able to take treatment”. (Support staff, 46)
The participant with the quote above expressed the need for insight into the reasons for disengagement. The participant did not only express concern for the patients, but also reflected on their role in being able to help the patient so that they can tackle the challenge of disengagement.
“I feel sorry for them because I see dangers in that, because there is a possibility that one can lose her life if she doesn’t take her medication, well especially the ARVs”. (Clinicians, age 49)
“It makes me feel sad, especially the young ones…., like yho! She's still young to have this viral load”. (Support staff, age 28)
The quotes highlight that some participants had sympathy for patients, and they express worry for these patients and their well-being.
Theme 3: HCWs expressing anger and frustration.
HCW responses also underscored their anger and frustration towards patients who disengage from care. Generally, participants expressed feelings of frustration and anger and reported their source of these feelings. HCW responses also underscored their anger and frustration towards patients who disengage from care.
Frustration and anger.
Most of the participants expressed frustration and anger towards patients who disengage from treatment. The participants noted that they do not understand why patients discontinued their treatment when it is lifesaving. In that light, the participants communicated that when patients do not take treatment, they are choosing not to save their own lives.
“...that’s what frustrating me; and then somebody dies because of HIV. That I…I…I…I fail to understand, why they should die because they have treatment already. It’s only the people who do not know, who did not know about this HIV or they did never started tablets or treatment, they never tested for HIV; then I would understand, but for somebody who started treatment and then they decided to leave and then they are sick like that and then they die, that’s what frustrated me”. (Clinician, age 64)
“…for example, why didn’t you take your ARVs; I don’t have any reason. Now you’re like, well you just… I just want to strangle her... because I don’t understand, I don’t understand how come the person will just disengage their treatment for no reason”. (Support staff, age 42)
The data shows that the source of frustration for HCWs is when some patients provide reasons or explanations for their disengagement that the participants considered unjustifiable. Some of the participants noted that they are frustrated because they put in the effort to ensure that the patients do not disengage from treatment, especially for those who cycle in and out of care. The participants noted some of their efforts do not yield the results that they expect, as patients still disengage from treatment despite their efforts.
“…you counsel them till you’re blue in the face and they don’t change. And then that, it gets frustrating in the end because you’ve got someone’s who’s sick where they wouldn’t be if they just took their treatment… it’s time consuming the fact that now when they come to the clinic, for starters they must come every month because their viral load now is high; they must attend a ROTFcounselling sessions every morning before they go to pharmacy, before they’re being seen by the sister or a doctor they must go to a group counselling the ROTF counselling and they will become now it will be seen and then so it’s time consuming they end up going home late and they get a monthly appointment so every month they must be here”. (Clinician, age 42).
The participants noted that working with patients who disengage from treatment is time consuming because they need special attention which makes the process long. The HCWs are tired and worn out as a result, most of the participants reported that patients who disengage from treatment frustrate them because they increase the workload when they are already overwhelmed.
“They’re making me angry. I get angry. I want to slap them. Joh, joh, I get angry when someone defaults treatment”. (Support staff, age 33)
“I think the anger could be for you know, with the patient sometimes because you get a sense this patient just doesn’t care”. (Clinician, age 52)
The participants used negative language that described their anger and frustration towards patients who disengage from treatment. The expression “joh, joh” adds emphasis to the extent of their frustration.
Patients who disengage from treatment do not take responsibility for their health.
Most of the study participants alluded to the notion that when patients disengage from treatment it means that they do not take responsibility for their health. The participants also noted that patients who discontinue their HIV treatment do not prioritise their health. Most of the participants emphasised that for patients to remain in treatment it is the responsibility of both the HCWs and the patient. Moreover, the participants noted that the HCWs are doing their part, but patients tend not to take responsibility for their health, which is why they disengage from treatment.
“If the nurse says or if the doctor says come back on the 8th of March, make means to come back on the 8th of March because this is your health, and you only have one life honestly…. it's honestly your responsibility, your health honestly. Your health is your responsibility and then the clinicians and the doctors are there to help you; are there to support you; they're there for anything you want to ask and want to know”. (Support staff, age 26)
Some of the participants stated that all they can do HCWs is to support patients so that they can adhere to their treatment, and it is the responsibility of the patient to ensure that they stay engaged in care.
“They don’t take their responsibility, because I don’t see the reason for patients to just drop their medication without consulting with [a] doctor”. (Support staff, age 38)
“…but the patient also has a responsibility and it’s not my responsibility as a healthcare worker to go and tell your boss that you must come to the clinic every month because now you have this disease”. (Clinician, age 49)
The above quotes highlight that the participants of the study believe that it is ultimately up to the patient to adhere to their treatment when they take responsibility for their health. The study participants highlight that there is only so much that they can offer to the patients, but the patients need to take ownership of their lives and prioritise their health over anything else.
Patients who disengage from treatment are full of excuses.
When the participants were asked about their experience with patients who stop taking their HIV treatment and later return to care, most of the participants noted that these patients give excuses for disengaging from treatment.
“Something like they went to Eastern Cape and then they didn’t, that is not a good reason to me…If they are going to and their appointments are not far from coming back and then they are going away, they must come and report so that we give them referral letters, and then they can be sorted there” (Clinician, age 64)
HCWs think disengagement is unjustifiable, particularly as they have personal experience of navigating the challenges of taking long-term treatment themselves. Surprisingly, most of the participants who reported to have been taking chronic medication themselves were the ones who showed less understanding for patients who interrupt treatment. They spoke about adherence in a personal way, highlighting that if they are adhering to treatment then the patients should also do the same. They compared ART medication and their chronic medication where they highlighted that it is not difficult to take pills every day.
“I’m diabetic, I’m taking mine twice a day, I’ve never really forgotten because I’m like I have to take it. So, for me, it’s just an excuse... mostly excuses. …no, not at all there’s no excuse not to take it” (Support staff, age 28).
“I don’t see why it should be fatigue from one tablet. It could be fatigued from maybe more than one tablet… I think it’s very traumatic when you are taking more than one tablet”. (Clinician, age 49)
The above quotes from study participants highlight that the participants regard some reasons for disengaging from treatment as unjustifiable. Some of these reasons they stated are travelling to the Eastern Cape, pill burden, and pill fatigue.