Table 4

Representative quotations on current CKD practice, barriers, (anticipated) facilitators and needs towards CKD self-management

Themes and subthemesRepresentative quotation
Current CKD practice
Current SM practice by patients
Medical managementQ22. I took medications very regularly. Otherwise, my blood pressure will be high and I can not control it. (Patient 7, 29–39 years, CKD G4–G5)
Q23. I paid attention to the [chronic kidney] disease. If I felt uncomfortable, I quickly measured my blood pressure. (Patient 4, 29–39 years, CKD G1–G3)
Q24. My legs were swollen. I started to restrict water [intake). Then, the edema slowly disappeared. (Patient 8, 40–50 years, CKD G1–G3)
Q25. I eat food based on doctor’s requirements every day, low salt and low fat, and high-quality protein. (Patient 5, 29–39 years, CKD G1–G3)
Role and emotional managementQ26. I took medicines on time and had a rest every day. I am a patient and just consider medicines every day. (Patient 11, 51–61 years, CKD G1–G3)
Q27. I try to comfort myself. I can not leave medicines…But you are sick and you have to take them. I can focus on the present life. (Patient 5, 29–39 years, CKD G1–G3)
Q28. I do not have much stress on this disease. Because it is useless, I want to live in the present life in a happy way every day. (Patient 1, 40–50 years, CKD G4–G5)
SM skillsQ29. I used the small spoon to add salt in the food. My blood pressure was as high as 145 or 156 before, now my blood pressure is around 123 after limiting salt intake. (Patient 11, 51–61 years, CKD G1–G3)
Q30. When I searched the [chronic kidney] disease online, I searched the information about the cause of disease, treatment or what precautions I need to care about. (Patient 5, 29–39 years, CKD G1–G3)
Q31. There is a diet list [for CKD]. Also, I searched the information by asking other patients during hospitalization. (Patient 6, 29–39 years, CKD G4–G5)
Q32. If I saw that I had swollen legs or eyes… I called the doctors and they told me not to put the dialysis fluid in the abdomen for a long time. (Patient 1, 40–50 years, CKD G4–G5)
Q33. I insist on exercising for more than 10 000 steps every day…if I only exercised for four or five thousand, I will go outside to reach 10 000 steps. (Patient 4, 29–39 years, CKD G1–G3)
Implementation of SM intervention by HCPsQ34. If patients did not correctly take the medication, you can tell him [the correct way]. When he is prepared for discharge from the hospital, repeat it again. (HCP1, 29–39 years)
Barriers, (anticipated) facilitators and needs toward CKD SM
Barriers
KnowledgeQ35. I did not know that I can not eat red dates. I heard that eating red dates can nourish the blood. My potassium was high and I had serious edema. (Patient 7, 29–39 years, CKD G4–G5)
Environmental context and resourcesQ36. There is no good way. One way is the Wechat public account we created. Another is the internet. But the information is not written by professionals, not true and disordered. (HCP3, 18–28 years)
Q37. Patients want detailed information from doctors, for instance, diet and detailed medical advice on all aspects. But the doctor’s ward round is tight, and they are busy every day. (HCP9, 29–39 years)
Social influenceQ38. Patients’ families do not follow the strict rules such as dietary habits to assist patients to manage themselves. (HCP2, 29–39 years)
Q39. Some patients want to give CKD treatment up. Then, it can be challenging to communicate with them. They would not adhere to lifestyle changes. (HCP3, 18–28 years)
(anticipated) Facilitators
KnowledgeQ40. If the patient often read the information related to the disease…he will have a deeper understanding of our medical care. If the knowledge is increased, his SM will be improved. (HCP3, 18–28 years)
Environmental context and resourcesQ41. We have Wechat account, which is trustworthy. It can help them when they ask whether they can eat a specific food, especially when we are too busy to tell them details. (HCP4, 29–39 years)
Social influenceQ42. My family members are helpful. If there is something I do not understand, he will check it from the Internet. I think this helps a lot. (Patient 11, 51–61 years, CKD G1–G3)
Q43. I did not want to have dialysis. But after talking to doctor Xin, I know that I can live for more than ten years with dialysis. Then, I accepted it. (Patient 3, 40–50 years, CKD G4–G5)
Needs
KnowledgeQ44. Patients need related knowledge like the diet [restrictions]…such as he can not eat this food or eat less. (HCP4, 29–39 years)
Environmental context and resourcesQ45. I need clear information online…what food I can eat online is not clear and not detailed…The information is conflicting… (Patient 6, 29–39 years, CKD G4–G5)
  • CKD, chronic kidney disease; HCP, healthcare professional; Q, quote; SM, self-management.