Illustrative participant quotations for themes derived from Giusti et al. systematic review7
| PCC domains derived from systematic review | Number | Illustrative quotations |
| Structuring service organisation to enable continuity of care and patient navigation | 42 | It’s so important that we have a coordinator because it’s important for the patient to understand the whole situation from the second they’ve been referred to palliative care…We need to let the patient know that we’re going to focus on their symptoms, set a care plan, follow up with them, and provide home care if it’s needed. We are also the link between the patient, their family, the doctor, the hospital, and the pharmacy. HCP12, HCP, Female, 28, Jordan |
| 43 | I think when you determine that the patient has COPD…you need to allocate in a specific uhm…caregiver, mentor…I don’t know quite what the word is, in banking it would be a relationship banker…and I don’t know that that person needs to be a qualified doctor, in fact probably not. But there needs to be somebody who can liaise with them, the doctors, but at the same time is going to be prepared to listen to you. And in fact, have more time to listen to you. PAT01-001, Patient, Male, 67, South Africa | |
| 44 | If patients can access health care coverage at another hospital, we would advise the patients on how to transfer the coverage from the affiliated hospital to here. The affiliated hospital would allow a transfer of coverage for three months. After three months, we have to write up a document for the patient to bring to the affiliated hospital so that the hospital transfers the coverage to here…The affiliated hospital should allow for more than three months of health care coverage. 3009, HCP, Female, 21, Thailand |
| 45 | When you call them on the phone, the first one picking up should be the one to tell you what to do, rather than transferring you from one person to another. I can’t book an appointment; it is a very tiring process. PKH0049, Patient, Female, 56, Jordan | |
| 46 | It is better like…When you meet the doctor, you just meet the doctor and then everything you get it from the doctor. And not go to the pharmacy. PAT04-002, Patient, Male, 38, South Africa | |
| 47 | Like today after I finished my meeting with the doctor, they let me know where I should go next…They can communicate clearly. Sometimes when we go to a government office, we may not know who to contact and what to do. But here everything is very clear. 1003, Patient, Male, 54, Thailand | |
| 48 | Unfortunately, she would book me appointments and at each appointment I would be seen by a different doctor…I don’t know how they could figure out my two year long file in minutes. PKH0034, Patient, Female, 61, Jordan |
| 49 | Then next month when you return, you meet another doctor…It is a very big problem because the only person who knows my information, if I met with Dr X. S/he knows my information. PAT04-001, Patient, Male, 54, South Africa | |
| 50 | If the adjustment is done by a doctor with whom we get treatment regularly, this alone gives me more confidence because they know my medical record. 1007, Patient, Male, 60, Thailand | |
| 51 | (Seeing a different doctor] is not that big of a deal. Everything is typed down on the computer system. PKH0026, Patient, Female, 49, Jordan | |
| 52 | I think the routine check-up should be done at a narrower interval, it should be tailored to each individual case. CKH0008, Caregiver, Female, 31, Jordan |
| 53 | Then we have got the stable patients…and for them we expect them to fit into quite neat boxes of attending on certain days and collecting medication, which might not fit exactly with how often they feel they need to be seen but that is how it is in a big, clumsy system. PROF07-002, HCP, Female, 49, South Africa | |
| 54 | If the patient’s condition is well, the doctor would schedule each appointment far apart. If it is not well, the doctor would schedule frequent appointments. If there is a problem, I can come before the appointment. This kind of appointment system is good because it is flexible and made according to the symptoms. 1013, Patient, Male, 50, Thailand | |
| 55 | If we had better coordination with other departments, this would make things much better for the patients and would reduce our load. HCP19, HCP, Male, 55, Jordan |
| 56 | It would be great if there were a way to enhance a communication between staff from different hospitals such as using social network platforms which would be better that contacting by phone. It will help patient to feel more confident to visit a hospital near their home if they know that we have a connection with a local hospital and we can share patients’ information between hospitals. 3001, HCP, Female, 26, Thailand | |
| Family and friends’ involvement and support | 57 | In Syria, I would be surrounded by my family and relatives, but here I have no one. CKH007, Caregiver, Male, 54, Jordan |
| 58 | My family are caring and they keep checking on me, whether it was my family or my in-laws, they support me emotionally as much as they can. PAL0040, Patient, Female, 43, Jordan | |
| 59 | We are a prayer group but they are always there for me. They were all over 80. They are mothers and fathers to me…they are always there for me. They are always there, when I am down, they come and they give me home meditations and when I am in hospital, then they come to hospital. PAT01-002, Patient, Male, 58, South Africa | |
| 60 | Well-to-do patients are taken care of well by their families. Certain families hire caregivers to look after the patients so they don’t have to take leave from work to do the care by themselves. However, needy patients usually go to hospital by themselves because they have no relatives looking after them. 3012, HCP, Female, 20, Thailand | |
| 61 | I believe skills should be passed on to all people surrounding the patient because when a person gets sick, all of those around them are also sick…When you see a person going through so much pain and you can’t do anything about it, that makes you feel guilty… it is nice to provide guidance. PKH0017, Patient, Male, 49, Jordan |
| 62 | Sometimes he is like that, like when he had the pain on his chest or, and then I do not know what to do. I would like to know what I can do in that time when he is like that. CAR03-007, Caregiver, Female, 38, South Africa | |
| 63 | Also the families to also be involved in the health education so that they can try to assist the patient, because when the patient becomes short of breath they tend to forget the techniques of how to use the pumps and they do not use it the right way and it does not get effective and they panic. PROF08-001, HCP, Male, 52, South Africa | |
| Information should also be given to relatives so that they can help me get better. My relatives will remind me to follow the doctor’s advice because I can forget sometimes. 1008, Patient, Male, 63, Thailand | ||
| 64 | (My sister) has a hard life, she sleeps at my place and leaves her little son at home, she worries about the radiation from chemo affecting him, she is on the phone all night long while he is crying. PKH0049, Patient, Female, 56, Jordan | |
| 65 | I stop my studies so that I could take care of her. CAR04-002, Caregiver, Female, 26, South Africa | |
| 66 | Since the patient got sick, I haven’t sold any goods; it’s been two years now. Her illness has greatly affected me as I’m stressed and sleepless. 2010, Caregiver, Female, 52, Thailand |
| 67 | Our life is full of sadness and depression. CKH009, Caregiver, Female, 44, Jordan | |
| 68 | You also need to put at ease the spouse – the family member. Or sometimes it’s the children of patients…And for them, when they see someone battling with breathing…what comes into their minds is death. So, you need to stabilise psychologically. PROF03-002, HCP, Female, 28, South Africa | |
| 69 | Her illness has greatly affected me as I’m stressed and sleepless; I have to take a sleeping pill every night. 2010, Caregiver, Female, 52, Thailand | |
| 70 | Mental care should be provided [to family members] by the entire hospital, not just this clinic. There should be someone to listen to and encourage the family members. We should provide bereavement care. 3011, HCP, Female, 25, Thailand | |
| 71 | ||
| Promoting continuation of normality and self-identity | 72 | Mentally, I don’t feel good enough every morning to go out to work, sometimes my body would be good but I wouldn’t feel like it, but mostly the reason is physical…I heard that the hospital used to get jobs for patients like me, I wish they could do that. PKH0027, Patient, Male, 28, Jordan |
| 73 | I want my pain to calm down so that I can be there for (my children). 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 them again. PKH0011, Patient, Female, 44, Jordan |
| 74 | I slowed down socially. Like we used to like going to dance and I found that I cannot be on the floor long late of lately. PAT01-004, Patient, Female, 74, South Africa | |
| 75 | She just completed her high vocational course but hasn't received the certificate. After graduation, she was then hospitalised. She wants to pursue her study for two more years; now that she falls ill, she complains about it every day that she wants to study. This makes her stressed, sad, and sleepless. 2010, Caregiver, Female, 52, Thailand | |
| 76 | I want some fresh air…we haven’t left this place since last Monday, I feel like I have forgotten how the outside world looks like…I want my sister to see the world and see other people. CKH0020, Caregiver, Female, 45, Jordan |
| 77 | He got stressed and tried to elope from hospital. He felt very bored. 2005, Caregiver, Female, 50, Thailand |
HCP, healthcare professional.