The support dilemma of stroke inpatients and family caregivers under COVID-19 prevention and control: a qualitative study in China

Figures & data

Table 1. Subjects’ demographics and disease characteristics (N = 22).

Classification	Cases (percentage)
Gender
Female	11(50%)
Male	11(50%)
Age
Mean(SD)	62.45(14.26)
Range	35~86
Stroke type
Hemorrhagic stroke	7(31.8%)
Ischemic stroke	15(68.2%)
ADL
Mild dependency	11(50%)
Moderate dependency	8(36.4%)
Severe dependency	1(4.5%)
Absolute dependency	2(9.1%)
Onset time (day)
Means of onset time	35
Range	1-197

Table 2. Themes and subthemes extracted from 22 documents.

Themes and subthemes	Examples
Theme 1: Delay in medical treatment-intersection of two reasons
The fault of ignorance	I felt unsteady walking, then I went to the local hospital for an infusion. I didn’t even think it was a cerebral infarction. I didn’t know it at that time and just bought some medicine. I rushed to the hospital until I couldn’t walk.
The fault of incompetence	My mother has a pain hand and is not functioning well, she has difficulty making SOS calls. They don’t know how to make phone calls, and neighbors are far apart, so the treatment is delayed.
Theme 2: Experience at different disease phases
Family members’ speculation and excessive worry about patient’s condition	I’m worried if he’s having a stroke, because one of my relatives once had similar symptoms.
Family members’ concealment of illness for the patient’s well-being	Now I didn’t tell him that it’s cerebral infarction, only that it’s a cerebrovascular disease. There are some things I dare not say too much, for I am afraid of giving him too much psychological pressure.
Patients’ emotional swings and worries of the treatment	Especially in the intensive care unit, it’s really tough. He’s in a good mood before, but became a little anxious and irritable these days, worried about the operation.
The twists and turns of the patient’s role adaptation process	I couldn’t move my hands and feet at first. I do exercises slowly at present, and my mood has improved a little. At first, I couldn’t accept it. How could I have this disease? It’s impossible. Now I’m better. I hope I have a good recovery.
Theme 3: Possible factors promoting or hindering patients’ health management
Family caregivers as indispensable health supervisors	Usually my wife supervises me, I can’t do well without her supervision. He doesn’t control what he eat at home, Our family members must tell him to restrict his diet.
The willingness to return to the family role is the internal driving force of patients’ rehabilitation exercises	I want to recover as soon as possible, discharged from hospital and then go to work. I want to recover for myself, and don’t want to live up to my family’s expectations.
Contradiction and conflict between personal rehabilitation willingness and economic support	I want to do rehabilitation exercises in hospital. However, my daughter told me to go home. What should I do after my discharge? There would be no cure if I missed this chance.
Relationship between the medical security system and patients’ rehabilitation continuity	We were transferred from another hospital because the doctor said the hospital cycle was full. When we were transferred, we moved in after more than ten days due to the shortage of beds.
Theme 4: The family caregivers’ support dilemma related to the COVID-19 epidemic
	My wife has to go to work, sometimes she can’t come to take care of me, and one’s energy is limited. I have to go to work, and there’re still children at home, so I come here during the day and go back at night. I haven’t worked for a while now.

Table

Name:	Gender:	Age:	Stroke type:	Self-care ability:	Course of disease:
No.	Content
1	How’re you feeling now? Has your mood changed after your stroke? Is it getting better or worse?
2	Did you know about stroke before? Did you seek medical attention timely at the time of onset?
3	Is there any difficulties you’ve met after your stroke? Do your family members, relatives and friends care about you or not? or do you think there is any change in the people around you (attitude towards you)?
4	What effect do the disease have on you? (family and work)
5	Do you have confidence in your physical improvement? What will you do?
6	How about your usual medical compliance behavior? Such as long-term adherence to medication, diet control and physical exercises.
7	How do you do it well? Can you share your experience?/Can you talk about why you can’t stick to it well in this regard?
8	Do you have any questions now? Can you tell your ideas and suggestions about we need to improve?