Table 2

Summary of themes with illustrative quotes

Domains and key themesEvidence
Individual factors
Barriers
 Lack of knowledge and awarenessI don’t really know (about CKD); people say because you take too much oil that’s why your kidney is not functioning well or too sweet or salty all this sort of things. Which one to believe?’ (Patient 8)
‘If I want to manage my kidney problem; it is already deteriorating so how well really can I manage? Up to today I still don’t know…’ (Patient 11)
 Fatalistic thinking leading to lack of motivation‘I ask for myself, I come to this stage what else can I do? I only depend on the medication; I only depend on what the results? Furthermore, I cannot do anything much, because it is an organ inside me, it is not mechanical where I can replace. So I just have to.’ (Patient 11)
‘You cannot do anything, very difficult if you want to cannot sit, walk, stand, so that means your kidney is not strong. The more better is just to forget it, if god want to take your life, let him.’ (Patient 20)
 Passive attitude towards self-management‘But what they (patients) want is just they don’t want to take up the responsibility. So some they can say, well I just spent the money, you all do the job for me, they want to transfer their problems to the nursing home and to the healthcare workers, but they themselves they are not interested in participating, but managing the time of the medications and what sort of activities they are involved, partly because they are busy, if they care for all this they cannot go to work.’ (Patient 12)
‘No need (for more information about CKD), just leave it, let it be, don’t want to know so much… Yes, the more you know, the more make you worry, the more you worry the disease will come to you.’ (Patient 8)
Facilitators
 A multi-pronged approach to increasing awareness of CKD‘Any platform will be able to benefit the patient as long as they have the information that they will be able to help how to control or how to improve the kidney problem. Any platform will do.’ (Patient 19)
‘It’s also good for them to have some classes for certain stage, for them to know about any changes to medication to provide more well-being to your disease.’ (Patient 11)
 Patient-specific advice‘Yah you don’t know like you see all the supplements like this is good for kidney care and after that next thing you read is, ‘these things are bad for kidney’ so confuses and you don’t know what is fake. So you end up not trying anything. Verbally I find it (doctor’s advice) is not adequate and very general like reduce carbo, decrease your blood sugar… If it is more details that will help and I will customise little bit more to my case.’ (Patient 16)
‘If we are talking about information, there is so much information on the YouTube, on the Google. If you go to polyclinic, you can see the news letters are there. Sometimes there are some kinds of Health promotion they are there; you can see in the community centre the Health promotion their talks. Now already the people or the society or the professional has done a lot of this. So how to say that do they need to tell them?’ (Patient 6)
Interpersonal factors
 Barriers
 Insufficient patient-provider communication‘(Doctor) said, ‘You have some problem in kidney better go to General Hospital for check-up.’ Never tell anything (else) that’s all.’ (Patient 7)
‘They didn’t relate much about the chronic kidney failure or disease, but they told me that my creatinine level is elevated and I have to be careful.’ (Patient 12)
‘Especially when you come for your checking, I don’t know basically that I do have some kidney problems only after my third visit here. The doctor should. Give a proper time or may be interview with the patient analysis.’ (Patient 19)
‘No, but he never said anything about the kidney, he just said no detail because this (kidney disease) one is only minor, not so serious. May be if serious they would have explained to me, ‘your food all this. your work.’ they said just normal and eat this medicine.’ (Patient 2)
 Reluctance to question doctor about disease‘They are doctors; I have to listen then they listen to me. So it’s no point of asking them.’ (Patient 20)
‘For us we don’t know what to ask? And sometimes we also scared to ask? Sometimes we don’t know what to ask also.’ (Patient 18)
 Psychological stress of being a financial and social burden on family‘It (dialysis) will affect the family. He says he is the only one earning a lot and he say, ‘mummy I also have my own family to come’, he is 31 and he is only one earning a lot and then he may not going to take care if we go dialysis also, he quite worried. So I myself have to take care, don’t, try not to give him burden.’ (Patient 3)
‘You suffer, and your family will suffer; not only you, the whole family will suffer.’ (Patient 9)
Facilitators
 Patient satisfaction and trust in the physicianYes. Dr XXX take care properly and don’t let you go. They are advising us thus we are following well.’ (Patient 5)
‘So I liked here (polyclinic) because the doctors spoke to me. They don’t think you don’t know. Those people who don’t know, doctors who speak to them, explain to them don’t take them (patients) as fools or your medicine is beyond you or something like that. Give it to them in lay man terms and explain then they will understand better. She (Dr) is better and said oh do this? You take this? She listened to me.’ (Patient 15)


 Family support
‘My wife comes to me so starting to grumble that I must stop this….so it does help because sometimes you got listen to somebody that you love… Your son say ‘dad you see, you should not take this better cut down’ so it does help by listening to your loved one…’ (Patient 19)
‘No my husband, my son, they keep say your diet; you see the way you eat the fruits rambutan, longan my favourites. The way you see the fried chicken all these, every time you say little bit, little bit. Then my son say, ‘You go & exercise’. My husband also say must go and exercise.’ (Patient 3)
Community/societal factors
 Barriers
  Perceived lack of financial support from the government‘Cost wise is also another thing here… But I am still on the full-term employment because each medication and some medicines that are not subsidised. We have to pay full and they are very very expensive, but I just don’t know why that medicines are not subsidised.’ (Patient 11)
‘That is something the Government must give extra support for this chronic diseases if not difficult because it is something throughout your life. It goes on years and years.’ (Patient 5)
‘Cost is a big issue for those who really cannot afford. Especially for those who cannot have immediate family to support them. So the government has to play important part by analysing those who really find it costly and is this where the government will have to step in regarding the cost. Not everybody do have Medisave because some of them who are poor and they don’t have this. So I think the government need to step into cost thing especially those who really cannot afford it the government have to waive the charges or there should be some assistance.’ (Patient 19)
  Fragmented healthcare system‘If you have services. tell them (patients) what are the new things that are coming in, in stock and how to use them. (a) waste of interface. There are things available S.ingapore is always like that. All kind of things available but the interface is very weak, the connection is not there.’ (Patient 16)
‘Of course if they have more facilities in polyclinic, it is much better you save time, save patient extra money. I mean they should give more priority to the more important healthcare, the type where is the public are suffering. It is just no use to upgrade and then you say my place is so big so nice now you have better environment, this is not what we expect.’ (Patient 11)
  Difficulty adhering to dietary restrictions outside the home‘Yah so when I go out with friends like sponsors and all that, they will be eating things that I cannot eat sometimes I can avoid and sometimes I cannot avoid because sometimes they cook, if restaurant I can avoid if cooking it is easier.’ (Patient 16)
‘Morning I go to work and come back home at night. Even I never take my home cooked food; I eat outside may be that damaged my kidney. If you say, this cannot eat. that cannot eat, then outside food no choice. You have to eat it. Now the outside food is not cheap, if you take fish or you take something it is more expensive.’ (Patient 1)
‘We take all like breakfast, lunch and dinner outside and we cannot choose… We are working outside how to everyday take and go back work?’ (Patient 19)
‘Again Sodium, some of the food is so salty in the hawker centre, so what else we can do? If we are very fully employed, we cannot go back home and prepare our own food and then come back to work again.’ (Patient 11)
Facilitators
 Clear dietary recommendations and increased access to healthy food options‘So the target food also we must know. What is the best to go to the hawker centre (local eateries)? What food do you take? What is the best food?’ (Patient 11)
‘So if any healthcare people can access that (local groceries) and then recommend, what are the things that are good to consume and then we can go to that… and we can buy.’ (Patient 16)
 Home visits by healthcare professionals and volunteers‘The Ministry to Health (should) have more educators going around partnering with the residents’ committee in the community… Doctors and social workers and nurses and also volunteers… Polyclinic can have such workers to go round (sic) knocking doors and managing their programme at home…’ (Patient 12)
‘I would say that it especially when those people at old age we can create awareness through volunteers visiting to aged people or maybe I believe most of the family will love to have people to come to their house to give a talk about how to prevent and how to improve your kidney problem or diabetes… I do have yearly interviews with voluntary (sic) workers they come to my house’ (Patient 19)
  • CKD, chronic kidney disease.