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

ABSTRACT

China has implemented a strict isolation system in hospitals since the COVID-19 pandemic, that adversely affected the psychology of inpatients and their caregivers. Face-to-face, semi-structured interviews with 22 stroke inpatients from two municipal hospitals were conducted to explore the psychological, emotional and related support needs of stroke inpatients and their family caregivers under this environment. Results which showed that external support for stroke inpatients and their family caregivers was insufficient highlight the necessity for developing specific nursing interventions that meet the psychological and emotional needs of inpatients and the caregivers.

Keywords:

• Qualitative study
• psychological support
• social support
• normalization of epidemic prevention and control

Introduction

Stroke’s burden of disease ranking has jumped from third in 1990 to first in 2017 (Zhou et al., 2019). It has become the leading cause of death for Chinese adults in the twenty-first century (World Health Organization, 2018, 2021). Additionally, its high disability characteristics often lead to different degrees of neurological dysfunction or emotional social isolation after the acute phase, which seriously affects the patient’s psychological state (Wang et al., 2018). The COVID-19 pandemic has significantly impacted the economy, industrial production, and life safety of people worldwide. Its high infectivity and general population susceptibility (National Health Commission of the People’s Republic of China, 2020) also affect people’s psychological and social health to a degree (Wang et al., 2020). Follow the National Health Commission’s hospital management guidelines and policies, designated hospitals do not provide visits and escorts, non-designated hospitals implement an isolation system of non-essential non-accompanying, one escort only, and fixed escort for the purpose of controlling the pandemic (National Health Commission of the People’s Republic of China, 2021), isolating inpatients from the outside and affecting their psychological conditions adversely. This is an exploratory study that uses descriptive phenomenological research methods (Hu, 2006) trying to explore the psychological and emotional experiences, support needs of stroke inpatients and their family caregivers under this situation, and hope to provide a basis for formulating relevant interventions.

Materials and methods

Samples and recruitment

Purposeful sampling methods were used to select the stroke inpatients who could provide the most relevant information from neurology, neurosurgery and rehabilitation departments of two municipal hospitals in ChengDu. The sample size was saturated when the interviewees’ data were repeated and no new themes appeared in data analysis. The inclusion criteria were participants who (1) are over 18 years and diagnosed with first-onset stroke by CT or MRI following the diagnostic criteria of cerebrovascular diseases in China (version 2019) (Chinese Medical Association Neurology Branch, 2019); (2) can cooperate to complete the interview with clear consciousness and (3) are well informed and willing to participate. Patients with serious comorbidities, mental disorders and those rated as medium or above degree of cognitive impairment by the Mini-Mental State Examination (MMSE) were excluded.

Research tools

The Interview Outline (Appendix 1) was drafted by team members and determined after two rounds of Delphi expert correspondence. Experts selection criteria included 10 years or above clinical or teaching and scientific research experience, a master’s degree or above and a job title of associate senior at least. It comprised multidisciplinary specialists in neurology, specialist nursing and psychology.

Data collection and analysis

A researcher who participated in the research design and was familiar with the interview’s subject conducted the face-to-face half-structured interviews in a quiet single ward, each for 20–30 minutes. The verbal and non-verbal information was recorded with the patient’s consent and transcribed within 24 hours to ensure accuracy. Data collection and analysis were conducted simultaneously. Two researchers independently analyzed and coded the data using the Colaizzi seven-step data analysis (Liu, 2019) through the NVivo11.0 coding program.

Results

The general characteristics of 22 interviewees are described in Table 1. Based on inpatients’ data and the supplementary language materials of family caregivers, researcher extracted four themes and 10 subthemes which we can see in Table 2. It also shows some representative examples, and may provide new perspectives and ideas for nursing works.

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.

Discussion

Stroke patients and their caregivers had poor health literacy in stroke recognition and treatment, and low alertness to stroke signs, leading to a higher rate of delayed medical treatment. Studies (Papapanagiotou et al., 2011) pointed out that good medical treatment behavior is based on full cognition and attention to the disease, and lack of alertness to stroke symptoms remains a crucial factor in the current delay in pre-hospital visits (Kielkopf et al., 2020). Stroke-related health literacy directly relates to individual medical behavior and may indirectly affect health outcomes to a certain extent by mediating individual health management behavior (Sperber et al., 2013). Therefore, specific measures based on improving individual’s stroke-related health knowledge are vital to reduce delays in pre-hospital visits and promote personal health.

The neurological function is usually regained within the first 3 months after stroke (Krakauer et al., 2012; Zeiler & Krakauer, 2013). A retrospective investigation showed that limb function in patients with hemiplegia is in a functionally maintainable state after discharge and they rarely seek continuous community rehabilitation (Wu et al., 2013). Motivation, knowledge, personal beliefs, environment and resources are the factors that influence patients’ participation in rehabilitation (Moncion et al., 2020), and rehabilitation services are the main mechanism to promote functional recovery and independence of acute stroke patients (Gittler & Davis, 2018). Medical insurance payment was an important factor that affected the continuity and adequacy of survivors’ rehabilitation, discontinued and inadequate rehabilitation can cause a higher disability rate of stroke (Liao, 2018). Also, the development of medical insurance payment is a problem faced by Chinese community rehabilitation (Liao, 2018; Meng et al., 2021). Thus, promoting the reform of the medical insurance system and making it pay for more valuable rehabilitation is a current problem worthy of consideration and practice. It is also an important issue that aims to protect patients’ rehabilitation rights and promote their health.

Human health includes good adaptation to physiological, psychological, emotional and social aspects. The impact of a stroke on patients and their families is multifaceted. Besides a series of clinical dysfunctions caused by the brain damage, it can also cause emotional disorders such as irritability and mental health problems like anxiety and depression (American Stroke Association, 2021). The trend of patients’ post-stroke depression and caregivers’ psychological burden (Kazemi et al., 2021; López-Espuela et al., 2020; Medeiros et al., 2020) also highlighted the necessity of psychological interventions for them. Additionally, under the background of COVID-19, affected by the increasing cases and restricted free activities, people are more likely to face negative mental states like fear, anxiety and depression (Santomauro et al., 2021). Negative emotions such as stigma, loneliness and frustration may reduce their rehabilitation initiative and enthusiasm, delaying the rehabilitation process and effectiveness (Santomauro et al., 2021). Medical staff should fully consider the psychological pressure brought on by the dual factors of the disease and social environment to inpatients and caregivers. Further research can explore more effective and comprehensive psychological service models, attach importance to the support of families (Boger et al., 2015) and develop relevant interventions that are based on improving flexibility skills (McCurley et al., 2019), thus providing people with appropriate psychological assistance and promoting individual health and rehabilitation.

Authors contribution

Study conceptualization and design: He Chun-yu, Yang Xin-yao, Kong Ye, Zhou Jun, Zheng Siting

Data collection and input: Yang Xin-yao, Kong Ye, Zhou Jun, Zheng Si-ting

Data analysis and interpretation: Yang Xin-yao, Chen Xiao-fang

Original draft preparation: Yang Xin-yao, Wang Song

Review and editing: He Chun-yu

Ethics approval

All the research objectives participated in the study with the written informed consent, and the study was approved by the clinical research ethics committee of the affiliated hospitals of medical colleges. The Opinion Letter No. is 2020CYFYIRB-BA-104.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

The work was supported by the Department of Science and Technology of Sichuan Province [20ZDYF2400]; Postgraduate Research and Innovation Fund of Chengdu Medical College [YCX2020-08]

Appendix 1.

Interview outline

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?