'My dreams are shuttered down and it hurts lots’–a qualitative study of palliative care needs and their management by HIV outpatient services in Kenya and Uganda

'My chest is painful and uncomfortable; I am coughing and producing very black/dark saliva and I am wondering why… [And] I have painful joints and especially when I am sleeping… whenever I lie down it becomes difficult to rise up.’ P3 facility E, male, age 38, not on ART

'When I started taking the drug [ART], first of all I started losing appetite then I came to a point where I would eat food and vomit immediately, then there is dizziness, I can’t concentrate on what I am doing, so it gave me a lot of problems.’ P2 facility L, male, age 37, on ART

'The medicines I am getting, they have not caused me any problems… Most people complain a lot that the medicines sometimes treat them bad but for my case ever since I started this drug [ART] I have not been getting any problems related to my health.’ P5 facility G, female, age 26, on ART

'She has been falling sick often, time and again she is down with malaria, fever, diarrhoea and general body pain and these days she gets severe pain in the bones and this pain has limited her from doing any other work.’ C4 facility G, female, age 40, patient’s friend

'This service is prolonging the patient’s life. This is because that drug is now giving him more hope to live and as I said before, previously he was falling sick time and again. Now that he is taking the drugs the opportunistic infections are now few and because of this, he is doing other things even better than some normal people without the virus.’ C3 facility G, male, age 25, patient’s brother

'We queue for long when getting medicines, the people who are supposed to be serving us are just seated there and they are not attending to us. It takes such a long time that some people leave without their medicines.’ P3 facility C, male, age 37, on ART

'At least we have the drugs that can control pain up to pethidine. The oral ones, maybe like morphine, are available but under prescription strictly. Those can be available but only in the inpatient [unit].’ S5 facility C, Doctor, 3 years’ experience

'What we don’t have is pain relief. We do not have strong opioids like morphine but [we] have Ephedrine [and] use weak opioids like ibuprofen, diclofenac, both [in] injection [form]–we have them but some strong opioids like morphine syrup we don’t have, but we have pethedine injection.’ S1 facility G, Nurse counsellor, 24 years’ experience

'I think it would be good to get oral morphine for pain management because we get certain patients in severe pain and all we have is codeine phosphate.’ S1 facility M, Clinical officer, 9 months’ experience

Interviewer: 'Is pain managed well?’

Respondent: 'Yes… We have brufen.’

Interviewer: 'What about cases of severe pain?’

Respondent: 'We don’t have any other [medications] except brufen.’

'In fact, I don’t complain about these problems–take [as] an example this problem with my legs, I haven’t complained about it because I realised that they were not painful as a whole, but I mostly experience pains in the joint.’ P4 facility L, female, age 42, on ART

“First of all what we did was have a training for some of our staff on management of pain. This was conducted by [the local hospice] and we had clinical officer, nurses etcetera [who] we tried to follow and monitor on this treatment of pain in a larger manner.” S5 facility G, Medical Superintendent, 5 years’ experience

“[For] severe pain, as I told you we work with [the local hospice. Sometimes they pay visits to us here when there is a pain [facility staff] can’t manage. We contact them and write referral letters and they come and visit our patients here.” S2 facility L, Nurse, 8 years’ experience

'We have a palliative care nurse and I think when someone is in severe pain the way you have called it then we consider morphine. She was trained and she usually gets the morphine and takes it to the clients. But usually [when] there is that severe pain they start with the usual pain killers like panadol, indocid–if the pain refuses to go then she results to morphine.’ S5 facility H, Nurse, 4 years’ experience

'What hurts me is the way other people look at us–they say that my husband was a proud man so now it is his time to face the problems, so when I hear those words I feel so hurt.’ [Caregiver breaks down in tears] C1 facility H, age 35, patient’s wife

'Usually you find that these patients have withdrawn away from the community and their close people. They just stay alone and give up and lose hope in life and also feel that they have already gone to the end of life… because of this negative thinking towards life usually they don’t come for medication’ C2 facility G, age 24, patient’s brother

'The [biggest] problem that I have had is that of food. I used to live with my sister and I don’t get along with her. When she heard that I have the HIV virus, she chased me away. I now live with other ladies and I don’t work.’ [Starts to cry] P3 facility D, female, age 24, on ART

'Sometimes you cannot afford to buy food to eat; at times you cannot sustain yourself completely. At times you cannot afford transport costs to come for treatment. And again with these drugs we take, one must feed well and because you cannot really work hard enough because of compromised health at times even getting this food is a big problem. So you may have to stop the drugs because they really raise your appetite.’ P1 facility L, male, age 37, on ART

'One thing that has really brought grief and pain to me is that I acquired HIV at an early age before even having a child. That is what hurts me.’ P3 facility K, female, age 26, on ART

'[We encourage patients] not to lose hope and know that life still goes on, know that this isn’t the end, and you can even draw examples from people who have lived with this infection for a long time, so that eventually she sees herself not alone in the ocean… Usually we use the PWAs [people living with AIDS] because they’ve gone through it.’ S1 facility J, Counsellor, 10 years’ experience

'The good thing is that for any infection or illness he is treated, he is also given counselling so that he loves himself despite having HIV.’ C1, facility H, age 35, patient’s wife

'Some counsellors come and visit us from home, but not all the counsellors are doing that, but some of them do take time and visit their clients or at the place he knows where you are staying, asking you how are doing, your children, what’s your problem, what are you doing, such things.’ P2 facility H, male, age 45, not on ART

Interviewer: 'Are there any other problems that you have [which you] have not been able to talk about with the healthcare workers?’

Respondent: 'Other problems include where we live; both the roof and walls of those houses are made of corrugated iron sheets and the floor is made of earth. With the cold Kericho weather, the problem of beddings is quite real to me… because I do not have a lot of money; I can only buy the blanket that costs 200 [Kenyan] shillings and this is very light.’ P1 facility E, male, age 40, on ART

'They tell us that they can’t discuss with us social issues, and that their work is to give us medicines They ask us whether we want to get well or to talk about social problems… Once in a while, even when you try to tell them something they tell you that it is not their problem and they go away.’ P7 facility A, female, age 45, on ART

'Most patients have a cry that they have been phased out as beneficiaries of food support… According to the hospital management they do it because it is supposed to be an emergency support to the most vulnerable patients. They do it in order to support other new patients… I would have wished this support to continue, because most of the patients are too weak and it is going to be difficult for them to survive without this service.’ C2 facility G, age 24, patient’s brother

'[Service staff] advise[d] us to make a group of around 10 people and contribute some little money as members concerned, so that when you are in need you go there then get something, or else [they] just teach us some skills–farming, bead making, hand crafts–so that when you are in need of money you either sell cabbages, tomatoes or you just sell your hand crafts as they taught you.’ P5 facility H, age 38, not on ART

'After some time I started getting serious drug side effects [interviewee breaks down in tears]. I could not overcome the drug side effects and I was tempted to stop, probably by an evil spirit. But with prayers I continued taking the drugs.’ P7 facility G, female, age 56, on ART

'My biggest worry is about my future. I have no child and my dreams are shuttered down and it hurts lots. It is an innermost pain which I can’t explain to anybody. When you see people who have died because of this disease and yet they have been on ARVs and yet they die mysteriously... I feel weighed down and lose hope most often.’ P3 facility L, male, age 36, on ART

'At times when people get sick you realise that there is that tension or tendency of saying that God is away from me because if it were true that God is alive then he would not have let me fall sick in the way that I am. So you will find that there is that kind of antagonism between him and his God.’ S2 facility H, Counsellor, 2 years’ experience

'He may be having a skin rash so he cannot go to church for people to look at him and stigmatise him… there is that problem of stigma and stress… This is a big challenge for men: once he sees his skin has a rash, he has lost his hair, they tend not to want to join other groups or even go to church for prayers.’ C5 facility H, age 26, patient’s brother

'[The healthcare workers] encourage us to keep on going to church and they tell us to have hope. They tell us that an HIV diagnosis does not mean this is the end of the world… they tell us to keep with our religious leaders. Moslems keep in touch with mosques, Christians keep in touch with the church.’ P1 facility A, male, age 49, not on ART

'Spiritual counselling helps us because it brings everyone (healthcare worker, patient and caregiver) closer to God. For example, when you know God it harmonizes the relationship among all these parties involved and humbles the patient. When a patient is humbled he is loved more and can easily be helped by people around him. And if you don’t have that touch with God you might think that people don’t know what you are going through.’ C3 facility G, age 25, patient’s brother

Interviewer: 'Do they ever talk to you about religion, spiritual matters?’

Respondent: 'No [laughs], we only talk about clinical matters. I haven’t heard anything to do with spirituality.’ P1 facility D, female, age 41, on ART

'It should be the healthcare workers job, but we lack the skills and time. Sometimes people consider it to be very sensitive and they just leave it out. People do not want to disclose private things and you must watch your move if you want to talk about spirituality and beliefs.’ S4 facility M, nurse, 1 year’s experience

“I don’t touch much about spiritual care because there is a controversy between HIV and spiritual care. Many clients we have come across, they will tell you, 'I went to be prayed for, I went to pastor so and so, I paid some 3000 or 4000 [Kenyan] shillings or I didn’t pay anything; I stayed with him for 24 hours, they prayed for me and am now healed.’… They can even quote that, 'There’s a friend of mine, there’s a neighbour who came and attended pastor so-and-so’s church and when they came back…’ So I tell them go to whatever church they want to go to, but remember, your status is the same.” S4 facility D, Nurse, 4 years’ experience