Table 3

Representative quotations on CKD illness perceptions, understanding of and motivation towards CKD self-management

Themes and subthemesRepresentative quotation
CKD illness perceptions
Anticipated concerns on diagnosisQ1. [I had] swollen eyes and legs, [I thought] I was just not acclimatized at that time. I have never heard of this disease. (Patient 7, 29–39 years, CKD G4–G5)
Q2. I have not even had a cold before. Why do I get this CKD? (Patient 3, 40–50 years, CKD G4–G5)
Q3. The first is that it is really difficult to accept that I am sick. [CKD is] unlike getting cold or fever. I have a feeling that whether I would be useless in the rest of my life. (Patient 5, 29–39 years, CKD G1–G3)
Q4. I only have a part-time job. If I have dialysis four times a day, I need to work part-time for [a few] hours, which is equivalent to cutting off the source of the financial resources of my family. (Patient 9, 51–61 years, CKD G4–G5)
Physical consequencesQ5. Patients are very weak, and the symptoms of fatigue are more prominent. (HCP6, 29–39 years)
Q6. [I had] retching and vomiting. Also, I smell the urea when I breathe out. It is really uncomfortable. (Patient 10, 40–50 years, CKD G4–G5)
Psychosocial consequencesQ7. I have my own space and social connections with job. Now, I can only stay at home and do not have any contact with the world outside. I am abandoned by the world. (Patient 8, 40–50 years, CKD G1–G3)
Q8. The biggest impact [of CKD] is being unable to work. I can not make money to support my family. (Patient 5, 29–39 years, CKD G1–G3)
Q9. I need to count on my husband to earn money and pay for my costs… If my husband does not need to take care of me, he can make money. (Patient 10, 40–50 years, CKD G4–G5)
Lifestyle consequencesQ10. The first [influence] is [that I need] to take medicines at home every day and stay at home. (Patient 8, 40–50 years, CKD G1–G3)
Q11. Because I need to conduct dialysis several times every day, I can not go anywhere. (Patient 7, 29–39 years, CKD G4–G5)
Understanding of and motivation towards CKD SM
Understanding of CKD SM
Patients’ responses towards the understanding of CKD SMQ12. The doctor has prescribed a way how to do it. I should try my best to do it. I should do what the doctor says and pay attention to what precautions doctors mentioned. (Patient 7, 29–39 years, CKD G4–G5)
Q13. Doctors said that I can not exercise too much, eat spicy [food), and should eat less salt. (Patient 2, 18–28 years, CKD G1–G3)
Q14. I hear from nurses that I need to take care of self-protection, paying attention to the sanitation of environment of dialysis. (Patient 1, 40–50 years, CKD G4–G5)
HCPs’ responses towards the understanding of CKD SMQ15. After the patient is discharged from the hospital, he can manage the disease himself, for example, his adherence to taking medication, diet [restrictions), exercise, and regular follow up. (HCP3, 18–28 years)
Q16. Patients [with CKD] must have the knowledge of this disease at first…what disease stage he is in now…then they can pay attention to… improving their lifestyles… (HCP5, 29–39 years)
Motivation towards CKD SMQ17. I stayed up late. It can be a cause and risk of the CKD. So I have to avoid it…I should have restrictions according to what doctors told me, for example, eating. (Patient 6, 29–39 years, CKD G4–G5)
Q18. CKD SM is very important…patients with peritoneal dialysis…are with severe symptoms… But patients with good adherence can even lead the whole family to travel abroad. (HCP1, 29–39 years)
Q19. Doctors and nurses are the leading roles, such as…deciding taking medicine. I need to listen to the [medical care of] doctors and nurses. (Patient 4, 29–39 years, CKD G1–G3)
Q20. I should actively cooperate with treatment, follow the taboos or precautions that the doctors recommended, and cooperate with treatment much better. (Patient 5, 29–39 years, CKD G1–G3)
Q21. We as health care professionals play a role in letting patients correctly understand the CKD. Then, we can guide the patients how to adhere to treatment, which is very important. (HCP4, 29–39 years)
  • CKD, chronic kidney disease; HCP, healthcare professional; Q, quote; SM, self-management.