A total of 35 PLHIV and 14 health care workers were interviewed at Round 3 to assess initial feedback on the intervention in Van Don. The interviews comprised of two focus groups (one male, one female) with PLHIV leaders at the clinic, 20 in-depth interviews with PLHIV clients who were identified as patients with ‘typical’ palliative care problems, and 14 in-depth interviews with health care workers from the Van Don OPC, and health leaders from the District Hospital where the OPC is based. [NOTE: Words in bold represent emphasis of passage by author].
Acceptability of the symptom assessment tool
The doctors in Van Don were asked to provide their opinions on the brief symptom-screening tool that was introduced as part of the intervention to improve symptom detection and treatment. In general, they described the screening assessment questions as helpful:
I ask my patients different questions related to their symptoms – how they felt, to what extent it was serious, how frequent such symptoms occurred, things like that. Now it is much easier with the prepared questions. – Doctor, VD OPC
I think it is much better. Now we care for clients more - not just their health, I mean, physical health - but [we] also ask more about feelings, pain etc. It is helpful that we have a set of questions to follow. Without it, we tend to forget to ask those questions [smiling]. – Doctor, VD OPC
As evident in these statements, the doctors also acknowledged the more ad hoc way in which they assessed symptoms previous to the introduction of the symptom-screening tool.
To triangulate these findings, patients included in the qualitative interviews were also asked how the OPC doctors assessed them on their monthly clinic visits. All patients interviewed reported that they had been asked to list and scale the severity of their symptoms.
[The doctors] asked me how bad the headache was, where I had pain, and what caused my pain. They asked me everything. – Male PLHIV, FGD VD
Yes, they asked what level my pain was using a 10-point scale. – Male PLHIV, FGD VD The doctors asked me to score the severity of my pain from level 1 to 10. I answered that my pain was at level 7 or 8. Before, when I had less pain, it was at level 3… – Female PLHIV, VD Another patient verified when the use of the scales had begun:
Use of that scale started just recently, about three to four months ago. Yes, they [OPC staff]
have used it with me recently. – Female PLHIV, VD
Acceptability in relation to health care worker and patient interactions
The qualitative interviews indicated that OPC health care workers in Van Don were consistently positive, and surprised even, by the measure to which interactions with patients had improved.
…I think patients this year feel much more comfortable with me. They answer with ease whenever I ask them questions. They are also not hesitant to ask me questions. In general, it is quite a good atmosphere in the clinic and my consultation room now. – Doctor, VD OPC I am quite confident with my job now [smiling]. I understand patients better. They also know me better. – Doctor, VD OPC
After the training, we have changed our working style. Of course, for the better [smiling]. We have become more service- and result-oriented. In addition, we now know how to listen to our clients and encourage them to share their thoughts and feelings with us. – Mental Health Team member, VD OPC
Generally, I think patients seem more comfortable….and… pleased. They are more relaxed…
have more trust in me, talk to me more. Personally, I think they must feel happier receiving more attention from the staff here, even if they provide such feedback to us. – Doctor, VD OPC
I provide counseling to patients more carefully. Since this program started, my working method has changed. Yes, it’s better. Patients are also friendlier [smiling]. – Pharmacy Chief, VD OPC
I think the doctors in the OPC are very dedicated. Yes, there have been a lot of changes. When we come to the OPC, health staff are friendlier and ask more questions than before. – Female PLHIV, VD
In the past, the health staff in this clinic didn’t know much about HIV so we [PLHIV] didn’t have close relationship with them. Now they have the required knowledge and are more open and considerate. – Male PLHIV, FGD VD
The services are getting better and better every passing day. – Female PLHIV, FGD VD A few patients described ease in asking for symptom care and treatment in the OPC.
[The intervention] has been very helpful because now I don’t have to buy medicine from outside. When I feel ill or have pain, such as headache or stomachache, I can ask for medicine immediately. – Male PLHIV, VD
Acceptability of treating pain with amitriptyline and oral morphine
The Van Don OPC health care team readily adopted amitriptyline for the treatment of peripheral neuropathy and depression. Use of oral morphine in Van Don was more problematic; physicians demonstrated substantial reluctance to its use for PLHIV clients. Conversely, client acceptability was substantially high. Those interviewed generally agreed on the positive value of using morphine to treat pain.
I have never taken morphine here. However, if I have severe pain, and the doctor said that I need that medicine, it would be fine, as long as it helps release pain.
– Male PLHIV, VD
I am sure I will take it immediately if I am in a severe pain! I only want to get rid of it [the pain]
as soon as possible, so I am sure I will take it right away. – Male PLHIV, VD
At first I thought that there would be a bad effect if we inject morphine. Now, after thinking it through…yes, if I were in pain, there wouldn’t be any problem using it as a painkiller. – Male PLHIV, VD
I think there is no problem if we use it in accordance with the doctor’s instructions. I am not afraid of addiction. As far as I know, we cannot buy morphine as we can a bundle of vegetables from the market. There must be a prescription from the doctor and then we are allowed to use it. – Male PLHIV, VD
The above quotes indicate acceptability based on reasoning. Those interviewed suggested that they would accept morphine for pain because it works, because they believe that pain treatment outweighs the negative effects of morphine, and because, if prescribed by a doctor, its use would be legal and acceptable.
Acceptability of mental health services
At the initiation of the intervention in Van Don, OPC health care workers were doubtful that clients would show interest in mental health services. In the below quote, one doctor expressed his
‘amazement’ regarding the uptake of mental health services.
Initially, we did not think that clients would use such a service. We did not think that the service would be successful. However, within [just] three months, 100 clients accepted the service. Quite amazing. – Doctor, VD OPC
One of the mental health counselors described the patients as nervous the first time they came for counseling, but that this dissipated relatively quickly. His background as a former drug user also enabled him to speak with patients freely about the realities of drug use.
People with HIV have very low self-esteem. They are not confident, [and] are always blaming themselves. Clients referred to this room were generally quite nervous. Once they realized they had someone to talk to, someone to share with, they immediately felt more comfortable.
With drug users, it was a bit more difficult. Being a former drug user, I know how it felt. So the way I counseled was first just to agree with them that yes, it was such a pleasure to use drugs, and that it was extremely difficult to refrain from drugs. No one ever told them that. They would then feel that they could trust me. They felt relaxed. – Mental Health Team Member, VD OPC
Patients that sought support from the mental health team described their experience positively.
The most helpful service is medicine [ART], second is Duong Sinh Tu Na, third is psychosocial support. – Male PLHIV, VD (AIDSTAR 2010)
Sometimes I come to talk with the mental team, whenever I’m sad. Any month that I’m sad and have some problems with my mind, I also come to share, to talk with them! – Male PLHIV, VD
[The mental health team] helps me, for example, when I have difficulty sleeping. – Male PLHIV, VD
In May 2010, during an AIDSTAR initiative to document the mental health components of the palliative care intervention in Van Don, patients were asked how mental health services had impacted their lives (if at all). Patients spoke about the skills and confidence they acquired that altered the way they experienced and handled problems.
I still have problems, but now I am handling them differently. – Male PLHIV, VD Before, my bones felt very tired. Now, with massage and exercise, I feel more relaxed, confident, and don’t worry as much. – Female PLHIV, VD
I feel confident and more relaxed. I don’t worry as much anymore and I sleep better. – Male PLHIV, VD
Feasibility
In response to the question on whether the intervention could be replicated and implemented in other HIV clinics, some Van Don staff expressed confidence that it could be applied with ease.
I think it’s not difficult to deploy and implement it. The more patients we could help, the better. – Pharmacy Chief, VD OPC
To me, it is not difficult at all. Our patients can benefit from this integration. So I think it is feasible to integrate palliative care into existing services provided by the clinic. – Mental Health Team member, FGD VD
In my opinion, we should apply palliative care in all clinics. PLHIV everywhere have the same needs. I know in Cam Pha there are only CHBC teams, but not palliative care/mental health teams. Palliative care is only applied in Van Don. – Mental Health Team member, FGD VD The head of the OPC in Van Don offered a more nuanced opinion by stating that the intervention could only be replicated where the clinic staff were dedicated and “passionate” about their work.
I think it is neither easy nor difficult. But palliative care…is very necessary indeed. We need to be very passionate with our job and patients to do this well. Without the passion, you can’t work well, even if you have been working for ten years with a lot of experience. And vice versa:
if you love your job, you can do it well quickly in the first few months. – OPC Chief, VD OPC Similarly, the head of the hospital’s Infectious Disease and Inpatient Department felt that if health care workers were compassionate, then integration of palliative care could be achieved.
I think that we can do many things if we have a good heart. It’s not difficult if we have a sense of mercy for the people around us. Like me, I am a doctor and I have to provide care to 80, sometimes even 120 patients a day. It’s a heavy job, but I still have time to talk with them, to counsel them. That’s why I think it’s not too difficult. You are right when you mentioned that some health staff are not that committed, but I think more than half of our staff [work]
whole-heartedly. Yes, we have some people…’one rotten apple spoils the basket’, and we can’t avoid that. However we need to help them increase their awareness so that they are closer to patients and understand that we need to treat both: their physical and mental problems! – Hospital Infectious Disease and Inpatient Department Chief, VD