Illustrative participant quotations for Santana et al PCC model themes (for full table of Santana model themes and illustrative quotations see online supplemental table 2)
| Santana et al themes corresponding to illustrative quotations | Number | Illustrative quotations |
| Encourage teamwork and teambuilding | 1 | By dividing the roles between the medical staff everything would be easy. I mean it is hard to bear all the responsibility by yourself only, you need help from others. HCP16, HCP, Male, 35, Jordan |
| 2 | With some staff we are able to discuss, what does it mean, how you feel about this, what has frustrated you, between the doctors and the nurses and the doctors and other doctors and then between the doctors and specialists. I think there are supportive relationships, I think there could be ways in which they could be more supportive potentially but I am not sure exactly how or how that would look. Maybe create another space where we can discuss. PROF01-005, HCP, Male, 32, South Africa | |
| 3 | We have collaborated for a long time; we get along well including the doctor, nurse, and pharmacist and we understand each other. Having a personal bond helps us collaborate well. 3010, HCP, Female, 43, Thailand | |
| Prioritising the safety and security of patients and staff | 4 | The reason why I am attending here is because that other hospital is situated in gang land. The gang comes in there when there is a shooting there and they come after the one that they shot, then you must all be hiding. Now, how on earth can you feel free or safe to go like operate like that? PAT01-005, Patient, Male, 69, South Africa |
| 5 | They are at risk of infections in the hospital so that is why if you have a separate suite that was just for the COPDs and asthmas, you don’t have the TBs floating in there and making them ill. PROF01-002, HCP, Male, 45, South Africa | |
| 6 | It is not crowded unlike the outpatient unit of the internal medicine department…there are so many people standing around us. It is such a bad situation, especially during the COVID-19 pandemic situation. We need to do physical distancing but we can’t since every patient has their relatives with them. 2005, Caregiver, Female, 50, Thailand | |
| Cultivating communication and sharing information | 7 | Nurse X and Nurse Y are great and helpful. You should see the conversation between me and X, she always urges me to ask questions and comforts me. PAL0044, Patient, Female, 50, Jordan |
| 8 | I like to ask a lot of questions and he always tells me I am doing fine. I know he doesn’t want me to ask questions… Even if he clarifies he does it minimally: “Your condition is stable”. PKH0020, Patient, Female, 42, Jordan | |
| 9 | If you ask for something, they will advise you…They will not push you aside. They will always have an answer if you do ask a question, which is always in a good way. PAT07-003, Patient, Male, 73, South Africa | |
| 10 | I like the doctor gives me opportunities to ask questions. 1014, Patient, Male, 41, Thailand | |
| 11 | The patient also might not know the important things they need to know or the options they have. By giving them the information, you’re putting the ball in their court. HCP06, HCP, Female, 31, Jordan | |
| 12 | The doctors don't even really speaks so a lot. And sometimes my mommy is in such a lot of pain and you can see it’s just, just sitting here and she doesn't even say a word. CAR03-002, Caregiver, Male, 28, South Africa | |
| 13 | The patients required a doctor’s diagnosis explanation in relation to their present and future symptoms, and treatment methods. They expected the doctor’s explanation without asking as they were worried that they would be reprimanded by the doctor if they did. 3010, HCP, Female, 43, Thailand | |
| 14 | I want the doctor to talk to me about my condition, I don’t like it when he’s vague. I want to know what I can eat, what stage I am at, what my current situation is…The doctor stops by in the morning, asks me how I am doing and then leaves. PAL0003, Patient, Female, 47, Jordan | |
| 15 | As doctors we don’t spend enough time with our patients explaining to them this is what is wrong with you, this is what you can expect, these are the improvements that you can expect, this is what happens when you are unwell. I think if patients understand what it is that is wrong with them it will help them to cope with their illness better. PROF01-003, HCP, Female, 31, South Africa | |
| 16 | If I know how my symptoms will progress and what the treatment procedures are, it makes me feel good…I don’t have the knowledge, so I get curious and worried. 1013, Patient, Male, 50, Thailand | |
| 17 | We need to improve our approach in terms of asking people of how much information they want. HCP10, HCP, Female, 40, Jordan | |
| 18 | The doctor should ask first if the patient wants to know or not. If he wants to know, the doctor can gradually give him information. If he does not want to know and the doctor tells him, he will be very worried. 1010, Patient, Female, 60, Thailand | |
| Shared decision-making | 19 | It should be a joint decision…It is possible that the doctors want to do something that I don’t approve of. When it was time for my sixth cycle, I told Dr X that it is making me ill…so he told it was ok if I didn’t want to take it. PKH0023, Patient, Male, 55, Jordan |
| 20 | Most of the time they will listen, they will respond, we will make a decision together. CAR04-002, Caregiver, Female, 26, South Africa | |
| 21 | The patient and I greatly took part in decision making; the doctor gave us information and let us opt in or out…It’s good because the surgery has risks and the patient will feel that she chooses to accept the risks… Collaboration is likely to bring about the best treatment method. 2010, Caregiver, Female, 52, Thailand | |
| 22 | I am not a doctor…I believe the doctor should just inform the patient about the plan because the doctor knows what’s best for the patient. People tend to get emotional and they might freak out and decide against chemo just because they don’t want to lose their hair or lose weight. PKH0021, Patient, Female, 26, Jordan | |
| 23 | I tend to just tell the patient, “We are going to keep the medication same, everything looks good, are you happy?” And then most of the time they will say, “No it is fine,” because they feel fine. PROF04-002, HCP, Female, 29, South Africa | |
| 24 | I would like the doctors to decide because they can do it better. They have studied medicine, so they know what to do. I am just a patient, and I don’t know anything. It’s better to let doctors decide. 1012, Patient, Male, 72, Thailand | |
| 25 | In the western world, the patient comes into the doctor’s office with more knowledge on their condition than the doctor does. They come in ready to discuss whatever they want to know. The patients here come in and put the decision in the hands of their family, which their family puts in the hands of the doctor…you share the facts and what you know with the family so they can make a decision and they just tell you to do whatever you feel is right. HCP18, HCP, Male, 54, Jordan | |
| 26 | If the patient doesn’t know anything, we’d have to make the decisions with the family. HCP7, HCP, Female, 27, Jordan | |
| Understanding the patient within his/her unique psychosocial or cultural context | 27 | It is God who will cure me, I always ask him to strengthen me, and that’s when I feel that he loves me, I like to think that he is putting me through this as a form or redemption from my sins or to get me closer to him. PAL040, Patient, Female, 43, Jordan |
| 28 | I think in terms of spiritually when people start realising that they are not going to live very long. And as health professionals we don’t often have those conversations although in palliative care we should. PROF07-002, HCP, Female, 49, South Africa | |
| 29 | The patient pays homage to a Buddha image and prays before bed every night; she then feels better and calmer. 2010, Caregiver, Female, 52, Thailand | |
| 30 | I seem to be opposed to religion of all kinds because in my mind’s eye I see it as brainwashing. PAT01-003, Patient, Male, 61, South Africa | |
| 31 | Religion is not the patient’s spiritual anchor. His spiritual anchor is his mother who always encourages him. 2003, Caregiver, Female, 43, Thailand | |
| Care access | 32 | It’s hard to get the ambulance or when she has a regular follow up the ambulance won’t come, her husband puts her in the car, the nurse carries her and I hold the chair and we cram in the car, she gets in a lot of pain. CKH0015, Caregiver, Female, 67, Jordan |
| 33 | My transport is my main thing I need. So, I just leave it like that because sometimes, maybe I get a COPD attack in the night and then I phone the ambulance, they do not come. Like the other time I was waiting for eight hours, till the morning and I had to ask my neighbour to come bring me here. PAT03-001, Patient, Male, 42, South Africa | |
| 34 | Many patients travelled from remote provinces…those whose appointments had been scheduled for many consecutive days had to stay in Bangkok for several nights. When they stayed in an unfamiliar accommodation, they couldn’t sleep thus making them have fatigue and higher blood pressure. 3012, HCP, Female, 20, Thailand | |
| Financial burden and affordability of care | 35 | This cycle is probably the last one I am gonna take because I can’t afford any more. I can barely get my children bread…I went to UNHCR and they told me funding was stopped especially for those who came in 2014. PAL0037, Patient, Female, 45, Jordan |
| 36 | Finances are one of the main aspects we try to secure for these patients because this also affects their mental health. We see many depressed patients as a result of financial struggles. HCP1, HCP, Male, 41, Jordan | |
| 37 | Basically I need to have that R200 bucks as a spare in case I am gonna need to Taxify or Uber or I am going to need to have for an emergency…So, what you will find now it puts a strain on what do we cut from grocery list? CAR04-002, Caregiver, Female, 26, South Africa | |
| 38 | The doctor is considering if an additional medication should be prescribed but I’d have to pay an additional 1500 baht per month…It is a diabetes medication which would improve my condition… it would be nice but I’m making up my mind. 1007, Patient, Male, 60, Thailand | |
| Patient reported outcome measures (PROMs) | 39 | Even if I still have the disease, I want to wake up in the morning, make coffee, I don’t have to cook, I can fix myself something simple, move around the house. I want to reduce the pain so I can be around (my family) again. PKH0011, Patient, Female, 44, Jordan |
| 40 | This disease…it takes away your self will and it does it in an insidious way in that no matter how determined you might be, you can’t physically do x, y or z because you can’t breathe, and if you can’t breathe you can’t do anything. PAT01-001, Patient, Male, 67, South Africa | |
| 41 | The patients want to get better steadily until they can go about their normal daily life and go back to work. At the beginning of treatment, the patients get very worried but later after continuous treatment, they would see positive results in which their condition would improve if they took good care of themselves. Even though they wouldn’t completely recover, they got better steadily till they could live their normal daily life and work. They then looked happier. 3008, HCP, Female, 42, Thailand |
HCP, healthcare professional.