Article Text
PDF
Abstract
Background Due to the COVID-19 epidemic, Chinese hospitals are forced to impose stringent regulations, which unavoidably affect patients with stroke who need continued rehabilitation and long-term disease treatment. However, there is a lack of qualitative studies in the literature on female relative caregivers of hospitalised patients who had a stroke with dysphagia during the COVID-19 pandemic.
Objective In this study, we aimed to explore the experiences of female Chinese caregivers living in the hospital with patients with post-stroke dysphagia during the pandemic.
Design We conducted a qualitative study using semi-structured interviews.
Setting(s) From May 2022 to July 2022, patients were selected from the Acupuncture and Moxibustion Ward and the Encephalopathy Ward of Shenzhen Chinese Medicine Hospital, which receives patients from across the country.
Participants 10 Chinese women who were caregivers of patients with post-stroke dysphagia were finally interviewed.
Methods Interviews were transcribed verbatim and analysed using Colaizzi’s approach.
Results The primary theme was determined to be ‘kidnapped’ lives. Other sub-themes evolved to depict the lives of female relative caregivers, including inevitable tasks and challenges, precise care, a special dietary pattern, solitary and forgotten, and an elusive future. Due to the trivial nature of caring for patients who had a stroke with dysphagia, the caregivers’ lives were tightly organised and entirely dictated by the patient’s caring needs. Consequently, the caregivers felt that their lives had been kidnapped.
Conclusions It is imperative that healthcare workers identify and understand the living conditions of female relative caregivers in the hospital, so as to determine their difficulties and needs. Finally, caregivers deserve adequate and effective support, such as technical support, financial support and nutritional guidance.
- qualitative research
- stroke
- clinical governance
- health & safety
- quality in health care
- stroke medicine
Data availability statement
Data are available on reasonable request. All data relevant to the study are included in the article.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
Statistics from Altmetric.com
STRENGTHS AND LIMITATIONS OF THIS STUDY
The study will provide researchers with an in-depth understanding of the challenges and unmet needs faced by female relatives who work as caregivers in hospitals.
The use of the data collection method, along with data merging until no new themes emerge, will improve the credibility and adequacy of the data.
The transcripts and interpretations of the interviews were transcribed by a researcher who has studied abroad and is fluent in English. Any discrepancies were explored, and agreement was obtained.
The sample’s lack of cultural diversity suggests that future studies would benefit from including a more varied group of participants.
There may be a positive bias towards women’s experiences since several female researchers are on the research team.
Background
In 2019, the novel SARS-CoV-2 caused the coronavirus disease (hereinafter referred to as novel coronavirus pneumonia) pandemic.1 This infectious disease spread rapidly, affecting more than 190 countries or territories worldwide within a limited period of time, resulting in acute morbidity and deaths.1 Tragically, the global pandemic has not ceased to date,2 with emerging variants spreading globally; the highly infectious nature of the new coronavirus variants has contributed to a dramatic rise in the number of cases worldwide. This large-scale and ongoing contagious public health event has wreaked havoc on people’s lives.3 The novel coronavirus pneumonia pandemic has forced Chinese hospitals to enact restrictive policies.4 In order to protect patients, families and healthcare workers, as well as to optimise the use of the limited protective equipment available, many Chinese hospital facilities have limited the number of informal caregivers (people who provide personal, unpaid caregiving or assistance to patients in need) to one person per patient only.5 The family-centred hospital care method is under tremendous strain as a result of these new rules.6 Although the spread of the novel coronavirus pneumonia has been successfully mitigated, these blockade measures have also inevitably created challenges for informal caregiver services in hospitals, such as chronic disease management and the rehabilitation of stroke survivors.7 8
Presently, stroke remains the second leading cause of death and disability worldwide, affecting 104 million people.9 Globally, approximately 15 million people develop stroke each year, 78% of whom experience dysphagia.10 Post-stroke dysphagia, a manifestation of a systemic disorder, is primarily associated with a reduced coordination of tongue movements in the jaw, throat and oesophagus of a patient after stroke.11 Although dysphagia can spontaneously improve in some patients with stroke, up to 15% of patients continue experiencing dysphagia 1 month post-stroke; this may lead to a permanent condition that significantly compromises their physiological function, recovery and quality of life, with the possibility of death.12 A previous study reported that 80% of stroke survivors received part of their daily care and rehabilitation from informal caregivers during their hospital stay, after receiving emergency treatment.13 Nevertheless, the occurrence of dysphagia in patients with stroke may pose a greater challenge to informal caregivers; such a challenge may surpass the ability of nurses to deliver in the hospital.14 During the caregiving process, informal caregivers are required to deliver emotional and physical support to deal with stroke dysfunction.15 Moreover, they are expected to facilitate the patient’s healthy swallowing and manage their diet, tube feedings and washing. Evidently, compared with other patients, those with dysphagia require more informal caregiver assistance in most daily activities.16
Unfortunately, caregiving is almost a full-time occupation for many informal caregivers, who tend to experience life changes, altered social relationships, as well as psychological and physical challenges.17 In fact, many unpaid informal caregivers experienced a significant burden of caregiving and poor mental health long before the novel coronavirus pandemic.18 During the pandemic, many medical workers focused on pandemic spread prevention and control and patient treatment, while less attention was devoted to the mental health and well-being of informal caregivers within the hospital.19 Furthermore, approximately 50% of informal caregivers reported an elevated informal caregiver burden during the pandemic.19 During inpatient isolation, informal caregivers stay with patients in the hospital and deliver non-stop care for many hours, which is a highly draining task that significantly affects their physical and mental health.20 21 Emerging studies have reported that the mental health of caregivers during the pandemic is poorer than that of non-caregivers.20–22 An impairment of cognitive and physical performances of informal caregivers may accentuate their psychological burden, which further increases their caregiving burden, thereby creating a vicious cycle that affects the quality of caregiving.23
Based on the Chinese culture and medical system, Chinese informal caregivers are essential providers of daily care and assistance for patients who had a stroke with dysphagia; nevertheless, these informal caregivers are mostly women with an average age of 58 years and a relatively low level of education.24 During caregiving, women are more likely than men to perceive the stress of their role due to differences in their physiology and psychology.25 Generally, informal caregivers put others first and focus on the patient’s health. However, their own support is frequently neglected.26 Consequently, it is necessary to explore the concerns of female informal caregivers of hospitalised patients during the pandemic. Few studies have reported the experience of caring for patients with stroke during the pandemic. However, to our knowledge, most studies have been limited to home care for informal caregivers during the pandemic, and no study has explored the impact of the novel coronavirus pneumonia pandemic on female informal caregivers of patients with post-stroke dysphagia during their hospitalisation.
The objective of this study was to explore the experiences of female Chinese caregivers living in the hospital with patients with post-stroke dysphagia during the novel coronavirus pneumonia pandemic.
Methods
Study design
This study adopted the Colaizzi’s phenomenological method. Phenomenology was applied for this investigation, as it explores the subjective consciousness of the participants and captures their lived experiences within the context of a particular phenomenon. Through the phenomenological method, researchers can directly contact participants to understand their experience in managing illness and the needs of life. This study was conducted in rigorous adherence to the reporting guidelines of qualitative research.27
Setting
In this study, patients were selected from the Acupuncture and Moxibustion Ward and the Encephalopathy Ward of our hospital, which receives patients from across the country.
Participants
The participants were 10 female relatives caring for patients who had a stroke with swallowing disorders, inside a tertiary care hospital in Shenzhen, China. In this study, we used purposive sampling to achieve the maximum differentiation in age, family status, original work and caregiving experience of participants. Our purposive sampling was done by reviewing the patients’ medical records and selecting suitable subjects based on the recommendations of the three nurses in the study group, because the three nurses (HY, QX and XW) in our study group, who had worked for 5 years in the ward, were well informed about the patients and families on the ward. Furthermore, this study was conducted in accordance with the saturation principle, because saturation is the most fundamental aspect of assessing data adequacy in qualitative research. Hence, data collection was performed along with data consolidation until no new themes emerged, indicating that data saturation had been reached. The sample size was adequate for the phenomenological qualitative research design, as the objective of phenomenological research is to advance the comprehension of the significance of participants’ experiences, rather than generalising such findings to the entire population.
Data collection
Data were collected from May 2022 to July 2022. The first author, XF, initially briefed caregivers on the study objectives, study content and estimated interview duration; further, caregivers were informed of their right to withdraw from the study at any time. After the participants had completed the written informed consent form, the personal semistructured interview was conducted.
Pre-interviews were conducted before the formal interview and minor revisions to the outline were made based on interview results and participants’ feedback. All interviews were conducted starting with a general question: ‘How did you feel about caring for a patient following their stroke?’ The interview outline covered several points, including the experience of the caregivers of the patient; the impacts of the pandemic on the caregivers; and the impacts of the caregivers’ living situations, mental state and psychological state while providing care during the pandemic. Prior to the interviews, the researchers engaged in casual conversations with the participants and asked some general questions to learn more about them, thereby developing a level of trust. Initial interview guidelines were created by the study team.
Formal interviews were conducted in the hospital wards, where the participants were staying. The wards were pleasant, peaceful and undisturbed. Because of China’s policy during the outbreak, face-to-face interviews were conducted by two researchers, with the conversations recorded on a tape recorder and appropriate disinfection measures taken at the end of the interviews. The researchers all conducted the participants’ interviews after 15:00, to avoid interviewing participants during the peak of the patient’s treatment activities. Hence, the interviews were long and thorough. The interviews lasted approximately 45–60 min. Some participants were interviewed in two separate sessions, as they could not be interviewed for extended periods of time. We were careful to refrain from stating their own values while asking questions during the interview. Open-ended questioning was conducted to foster a friendly atmosphere and good rapport during the interview. Changes in movements, speech, expressions and intonation of female caregivers were recorded objectively. In addition, participants were invited to review the transcribed content and modify the ambiguous content. Finally, verbatim transcriptions of the audio data from the interviews were made and the transcription was compared with the recording to ensure accuracy.
Data analysis
To ensure the rigour of this qualitative research, we thoroughly assessed its credibility (internal validity), appropriateness (external validity), reliability (audibility) and objectivity. One of our research team members, JD, was hired to assist in creating interview questions, training the interviewer, and coding and analysing the data with HY and XF. JD is a head nurse with extensive clinical nursing experience and holds a master’s degree from the UK, which has enabled him to become proficient in English. The study team verified that the Chinese text was accurately translated into English by JD and a professional translator, ensuring that the data contents of both languages matched. JD also has experience with previous qualitative investigations. To ensure data accuracy and consistency, two coders, HY and XF, reviewed each conversation’s contents and memo. After each interview, the resulting recording was transcribed verbatim, and the transcription’s accuracy was validated by JD, the second author. QX and XW reviewed the data multiple times to become familiar with them. Finally, HY and XF recorded the final content into the NVivo software system for analysis.
The analysis of the material was performed using the Colaizzi method,28 which was organised in seven main steps as follows: (1) being fully familiar with the interview contents: the collected text was read thoroughly and repeatedly, while appreciating it adequately in conjunction with information from field notes or transcripts; (2) identifying meaningful statements: the keywords and phrases in the interview contents (which were relevant to the research questions when reading the text) were underlined; (3) building meaningful units: significant recurrent statements were coded, following objective information as closely as possible, and some original assumptions were discarded; (4) clustering themes: all units of meaning were extrapolated and clustered into preliminary themes; (5) describing in detail: statements from primary sources were adapted to define and describe the preliminary themes; (6) generating the fundamental structure: similar preliminary themes were compared, similar ideas distilled and meaningful phrases constructed; (7) validating the structure developed: the structure of the themes generated above with the research participants was validated to ensure the accuracy of the results. By including a thorough explanation of the data, pertinent quotations, a discussion of the interpretation and thoughts, the analysis’ credibility was created.
Patient and public involvement
Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research.
Results
Participant characteristics
A total of 10 participants, aged from 41 to 76 years (mean age: 63.8±3.43), were recruited for this study. They were female relatives of stroke survivors with post-stroke dysphagia. The stroke survivors (mean age: 69.2±2.54) had varying degrees of dysphagia, and among them, 60% (n=6) were male and 40% (n=4) were female (table 1). The severity of dysphagia in patients was evaluated using the Watian drinking water test. A total of five grades were used for evaluation, with patients sitting up and swallowing 30 mL of warm water at a time. The grading system was as follows: grade one, if the patient could successfully swallow the water once without coughing; grade two, if the patient swallowed 30 mL of water two times without coughing; grade three, if the patient could drink 30 mL of water once but with coughing; grade four, if the patient swallowed 30 mL of water twice but with coughing; grade five, if the patient could not swallow all the water due to frequent coughing. During the interviews, the study identified one primary theme and five subthemes. The primary theme was ‘kidnapped’ life, while the subthemes depicted the life of the female caregiver, including inevitable tasks and challenges, precise care, a special dietary pattern, feeling solitary and forgotten, and experiencing an elusive future.
Characteristics of female relatives and stroke survivors
‘Kidnapped’ lives
Overall, the female caregivers presented a trivial and hectic picture of their daily lives of caring for hospitalised patients with dysphagia. They lived in full contact with the patients and were tied to their daily caring needs during the pandemic. ‘Kidnapped’ lives was identified as the main theme. As a result of the trivial nature of caring for the patient, the female caregivers’ lives were being controlled by the patients’ caring needs. This kind of life took a huge toll on the female caregivers physically and mentally, to the extent that the caregivers felt that their lives had been kidnapped. A wife described the kidnapped life she had experienced.
I was with him for almost 24 hours a day, from the oral care in the morning to the fixing of the stomach tube at night, everything was done by myself…I spent the night curled up in a small escort chair, and then I had to start again the next day with full energy to take care of him…. I am exhausted, but we are family, so who else can take care of him if I don’t do my best.
Inevitable tasks and challenges
Post-stroke dysphagia placed an extra burden on caregivers, who were forced to become 24-hour informal caregivers in the hospital due to the novel coronavirus pneumonia pandemic. They spent time in the hospital with patients, as loved ones with inescapable caregiving responsibilities, and were constantly ready to be deployed by patients, healthcare workers and family members. As a caregiver described, she had virtually no time for herself, as she was expected to always prepare nutritious food for the patient and to administer the food through the stomach tube. Moreover, she was always on hand to inform the healthcare workers of any aspiration or choking, and to support the patient with rehabilitation exercises.
He couldn’t live without someone at any moment,… he needed someone to keep an eye on him eating and drinking, when he would have a choking cough that made his face red and purple, it was time to call the nurse… I made all the water and food myself every day, the nurses were very busy during the pandemic, so I did such things myself, I put food inside the stomach tube with a syringe at every meal, every day.
However, female caregivers were expected to develop new skills to cope with these challenging obligations. A caregiver stated that while she fed her mother through a stomach tube on a daily basis, she struggled with this activity as a female caregiver.
It is just me and my mum during the pandemic now, actually I am a bit scared of the stomach tube caring and some of the instruments. I’m a bit scared to feed my mum alone, in case she’ll choke.
According to the Chinese traditional culture, men often have the authority to make decisions within the family. However, during the pandemic, female caregivers were required to handle everything in the hospital on their own, including making treatment-related decisions and communicating with healthcare workers, which necessitated independent decision-making skills.
The doctor said to prescribe nutrition solution, so I agreed to do so, as I was also concerned about his nutrition. However, it turned out that he had a very bad reaction to the nutrition solution. He had either diarrhea or vomiting yesterday and had a fever at night, tossing and turning all night… It just became my responsibility… Everyone in the family blamed me, I was not accustomed to such decisions, I normally deferred to my husband at home and now that he is sick, it all falls on me.
Meticulous care
Due to the local government’s pandemic policy, many healthcare workers were deployed to support others in the field, and thus there was a shortage of staff in the hospital. However, some caregivers stated that they get caught up in the minutiae of care.
The nurses were extremely busy… I did everything by myself, I could insert the stomach tube and remove it as I used to be a nurse. I also had to brush her teeth every morning, pat her back, give her a bath twice a day, each morning and evening for twice a day. She suffered from a pulmonary embolism and had phlegm, so she was in need of daily back patting, and five meals a day. Every feeding, flushing the stomach tube, and then tying the gauze on the tube to keep it in place… It was all these tiny, invisible things that wrapped around me.
Female caregivers felt that their actions would make a significant difference to the quality of life and recovery of hospitalised patients, as well as to their own value.
Some female caregivers even searched the internet for dysphagia training methods or tools after nurses finished their regular care, demonstrating their commitment to meticulous care.
I bought a tongue aspirator of that kind as I had learned from others that it could be applied for treatment…and also I had read online before about stimulating the patient’s mouth with essential balm, so I did that myself whenever I was free and it worked, I was happy and I felt myself to be worthy.
Despite the trivial nature of this care, the caregivers expressed their willingness to embrace and endure such trivial and burdensome care, with 9 out of 10 mentioning the notion that ‘we are family’. This bonding between family members was largely imposed on the caregivers, tying them to the patient, and they are willing to accept this taxing care.
This is my family and there is no way I can just stare at her and not take care of her….every activity she did during the day would leave me worried,…she would choke and aspirate by mistake, and even her legs were not so good. For instance, when she went to the bathroom by herself at night, I would be worried she might fall down and I sat up until I settled her down to sleep, then I just went back to sleep, which did mess up my sleep. But I think it doesn’t matter.
Unique dietary pattern
In order to cater for the diet of the patients during the pandemic lockdown, family caregivers usually preferred to tailor their own diet according to the patient’s eating habits and timing. Patients with post-stroke dysphagia generally experience deficits in oral and facial muscle strength, resulting in inadequate eating or complete loss of eating capacity. Female caregivers frequently extended feeding times to address this issue. Some caregivers even reported feeling physically exhausted after feeding the patient and had to eat their own meals afterward.
I just ate casually by myself,… my hand that was holding the bowl would remain a bit sore after feeding, I didn’t even feel like picking up my own bowl again, it was very exhausting… I wasn’t hungry anymore when I was already overly starved, all I wanted to do was sleep.
Feeding patients with dysphagia involved individualised adjustments. As access for caregivers was restricted during the pandemic, many caregivers expressed the need to individually perform secondary processing of food in special ways to accommodate the patient’s needs. During this preparation process, the caregivers were somewhat embarrassed in the hospital as there was no room dedicated to food preparation. They can only grind food in the corridor or in the ward.
I had brought some milk and some steamed sweet potatoes when I was admitted to the hospital, which I just cracked with a spoon, put some milk in to soak it up and made a thick paste out of all the food.
I smashed the food that was delivered from the hospital cafeteria with the blender. Unfortunately, I was in the pantry, which was open, and the blender was so loud that the people in the ward would mind the noise… Anyway, I couldn’t go out, and the pandemic wouldn’t let me go out.
Relying on the single diet available in the hospital could lead to nutritional concerns for patients. Therefore, some female caregivers opted to have food delivered by relatives from outside the hospital. However, due to the severity of the pandemic, other family members from outside the hospital could only deliver meals once a day. Hence, it was challenging to preserve these foods supplied from outside the hospital.
We got someone from the Nutrition Department to provide us with guidance. There is a special nutrition list based on her various illnesses, and I will strictly adhere to what is written on it. The family would also deliver the meals in accordance with this, the family also bought a special small scale, the amount of intake did not exceed 2100 ml a day. She has a high potassium and phosphorus level, and then we just made a nutrition list with what to eat every day and wrote it down in detail, then made the meals for the day and delivered them in the morning… Now the summer is pretty hot in addition to the pandemic, so we can only deliver the meals for one day each time… I left them beside the air conditioner every time, so I was very worried that they would go bad, and if they went bad, there would be no more food.
Nevertheless, with a continuous accumulation of experience, the female caregivers could identify innovative solutions to the patient’s tastes, and hence achieve patient dietary satisfaction.
She doesn’t like to take the nutritional supplements bought outside… She prefers steamed vermicelli rolls as a Cantonese, so I bought her these from the hospital restaurant and told the restaurant to make them thinner and more juicy ones, then stirred them up with chopsticks and fed them to her… I felt she was happy.
Solitary and forgotten
Female caregivers depicted a deterioration in their own physical and mental health while caring for patients in the hospital. Relatives only seem to care about the patient’s recovery, and they do not show any concern for the caregiver’s feelings.
I don’t feel like I can ever get out every day, I’m bored and there’s no one to have a word with me in the hospital. No one would care about my emotions even if I made an occasional phone call, it’s all about the patient’s condition, no one would give a damn about how I feel.
Some female caregivers were unable to care for their families as they needed to take care of patients all the time, which resulted in changes to their family structure. Participants in this situation reported that other relatives would blame and criticise them, leading to the deterioration of their family relationships.
Well, I actually have a little boy at home, and he’s taking online classes as a result of the pandemic. Since I am on full-time care duty at the hospital, I can’t come home. My husband at home would just think I was being lazy in not taking care of my little boy. I am really frustrated, I feel like it’s so hard for women, because everything at home is mine, and he never thinks about me and shares my burden.
Some of the caregivers nevertheless expressed that they enjoyed the solitude. They argued that the hospital’s isolation policy during the pandemic had prevented many of their relatives and friends from visiting, allowing them to concentrate on taking care of the patients without much hassle.
There is no need to find some fruit or make tea to entertain them deliberately, as they are of no help to me at all, but rather add to my burden.
An elusive future
The caregivers’ uncertainty about the future arose first and foremost from a sense of powerlessness about the status of the patients’ dysphagia. In spite of the caregivers’ best efforts, there were no signs of dysphagia improvement.
I wonder if I have to keep going in this hospital in the future, I feel very weary of this kind of life, but the patients have to be treated. As long as they have to be treated, then invariably my family will still send me here, there is no way I can evade or hide.
Caregivers had no idea who could replace them in the future. This kind of life offered them no respite from their caregiving responsibilities, and they felt obliged to accept the fact that they had been chosen as caregivers with no room for resistance or replacement.
It’s just me, it’s really just me, …I’m the only one who can stay here, my two children have to work, my relatives all have their own affairs, I’m the only one left of the family, …there’s no one left if I don’t come.
Discussion
The study examined the experience of female caregivers caring for patients who had a stroke with dysphagia in hospitals. The caregivers in this study did not experience social or emotional variations independently; their experience was related to living with the patients in the hospital during the pandemic. This study highlights the challenges faced by female caregivers as well as the personalised nursing services they provide. Female caregivers often lack knowledge of swallowing disorders after a stroke and struggle to regulate their emotions and stress levels. However, their love and sense of responsibility drive them to endure these difficulties and provide care. Therefore, in China, there is a need for hospitals and family members to actively participate and encourage and support caregivers through this challenging stage.
In this study, female caregivers assumed the responsibility of caring for patients with post-stroke dysphagia. Lu et al29 conducted a qualitative study and found that participants believed they had complete responsibility and felt that this was expected from both themselves and society. The self-perceptions and behaviours of the women were essentially developed within the social and cultural contexts.30 All the female caregivers in this study were mothers, daughters, nieces or cousins of the patients; moreover, they shared the value of kinship and viewed caring for family members as a form of personal family responsibility. Shenzhen, where this study was conducted, is a new-age metropolis; nevertheless, most of the female caregivers interviewed considered caring for their families as the highest duty based on the Chinese culture, and most of them used the phrase ‘we are family’. This tradition, which is grounded on filial piety, family, love and kinship, remained intact even during the pandemic.31 This tradition also accounted for the selflessness and unconditional love for family shown by female relatives during the pandemic, which corroborated with the findings of Connor et al.32 In addition, China’s one-child policy has contributed to a significant transformation of the traditional Chinese family structure from an extended family to a nuclear family.33 This transformation has led to a situation where there is no one sufficient person in the family to carry out long-term care.34 Therefore, it is essential for various members of the family to take the initiative and share the responsibility of care, rather than just relying on women to do it. Despite the Chinese government’s emphasis on family care for the elderly, the formal system of government-funded or subsidised services is still inadequate compared with those in Western countries.31 It is necessary to formulate relevant measures to provide subsidies for chronic diseases to families with patients who had a stroke to alleviate the financial burden on them.
We found that female caregivers were more likely than males to experience a range of negative emotions when caring for inpatients. These emotions were strongly associated with gender and included health problems, self-blame, anxiety, loneliness, depression, despair and inadequate support, which is consistent with the findings of Kütme et al.35 Research shows that women are more likely than men to experience emotional disturbances, such as anger, helplessness, frustration and other negative emotions36 during the caregiving process.37 38 In addition, the active result of this research is that female caregivers in this study declared that they would endure the greatest caregiving difficulties and never contemplate giving up caregiving, even if it leads to exhaustion. This is related to their own love and sense of responsibility.39 However, some caregivers in this study showed reluctance to actively solicit help but were willing to endure all difficulties alone as long as their health and energy allowed them. These findings were similar to those of Marques et al.40 Therefore, it is necessary for medical staff to build an open environment with female caregivers to encourage them to express their demands and needs.
This study reveals that caregiving is typically associated with feminine attributes. Women’s distinct maternal qualities make them well suited for the meticulous nature of caregiving.37 During the research, female caregivers were observed as being highly responsible and proactive in performing informal caregiving duties such as patient turning, dressing, scrubbing, oral care, food planning and tube feeding. Moreover, some female caregivers paid extra attention to patients with swallowing difficulties, supervising them during meals to prevent aspiration. This detailed care behaviour is very helpful for the recovery of the patient. Nevertheless, the female caregivers were less skilled than male caregivers in technical competence, situational control and rational thinking characteristics of the caregiving process due to differences in social roles.41 In this study, some caregivers were hesitant to perform nursing actions due to the fear of stomach tube manipulation or the patient choking and coughing. Therefore, medical workers should provide professional guidance and assistance to solve technical problems for women in hospitals. Simultaneously, women should be encouraged to actively seek professional and technical guidance as well.
Dysphagia can impair a person’s ability to eat safely, with a risk of aspiration, pneumonia and even death.42 It is, therefore, vital to monitor the diet of patients who had a stroke with dysphagia. In this study, the female caregivers said that they were not fully aware of the causes and care procedures for dysphagia; however, they would provide their best care to patients with dysphagia based on their experience. For example, the female caregivers made some adaptations to the texture, size and consistency of the food provided in the hospital to accommodate the patients’ swallowing capacity.43 Meticulous care of the patient’s diet is important in the treatment of dysphagia. During the nursing process, female caregivers can derive a sense of personal value. During visits, female caregivers have expressed their happiness in being able to go online to seek guidance on how to help patients with swallowing obstacles. Nonetheless, due to the absence of food preparation facilities in hospitals, caregivers usually prepared food in wards or corridors, which disturbed other patients. Additionally, owing to the pandemic, most patients had reduced access to nutritious food choices, causing caregivers to be anxious about the nutritional status of the patients.44 The hospital should set up a food production room and the food storage room for the unit to provide food production places for patients with swallowing disorders to ensure the nutritional needs of patients are met. But, in the context of the ongoing pandemic, health and social care services encounter considerable challenges in providing consistent, coherent and responsive care.15 Therefore, local authorities or healthcare experts should provide avenues and suitable education for caregivers to present specific information to address health and food concerns of individuals with dysphagia from a common perspective.45
Restrictive hospital policies force all caregivers into isolation.46 Female caregivers in this study also reported feeling isolated in their roles, probably due to a failure of family members and healthcare workers to support them. Social support reportedly reduces psychological distress and acts as a buffer against physical and mental illness.47 However, some caregivers feel solitary and forgotten, even after receiving help from family members. Lippi48 provided the following explanation for this phenomenon: when family caregivers are overworked and overwhelmed, it inhibits their sense of purpose and enjoyment of work benefits. Therefore, health workers should support female caregivers in expressing their stress and needs, which can help them escape feelings of isolation.
The study suggests that uncertainty and confusion about the future among female caregivers are often associated with concerns about the illness, insufficient support for caregiving and unmet needs. In-depth interviews of female caregivers reveal that they are more concerned about whether the disease has improved during treatment, which is what they are most worried and anxious about. Due to the uncertainty of the development of the disease, they cannot see hope in their hearts. For female caregivers, they do not know how long they will stay. This long-term treatment and endless care have caused them and their entire family to spend a lot of money and manpower on the patients.49 In addition, a survey showed that caregivers spent approximately $5531 per year on caregiving, representing 10% of their total annual income.50 Moreover, 48% of caregivers declared that they had lost income as a result of full-time caregiving.51 Although the government offers financial aid to patients with chronic diseases to help the caretakers minimise their burden, financial and economic stress may increase the burden on caregivers.52 Accordingly, the hospital should formulate a rational pandemic policy to facilitate the sharing of caregiving roles by other family members or healthcare workers while ensuring pandemic prevention and control; moreover, differences in gender and individual knowledge levels should be taken into account.
Based on this study, it is recommended that the specific support needs of female caregivers be identified and addressed. In particular, female nursing staff should be given recognition and support, which will require collaboration among family members, medical personnel and other female caregivers. Knowledge education in care may also be helpful in enabling women to provide better care for patients and feel a greater sense of value in their caregiving role. Additionally, the study’s findings can guide future research efforts and inform policymakers as they consider ways to better support the physical and mental health of female caregivers.
In addition, there are certain restrictions to be aware of. Even though the pooled analyses conducted across groups were theoretically sufficient, only a limited number of participants from each stakeholder group actually took part. There may be a positive bias towards women’s experiences since there are several female researchers on the research team. Moreover, the sample lacks cultural diversity, so future studies would benefit from including a more diverse group of participants.
Conclusions
The inescapable caregiver duty, as expressed in ‘we are family’, mainly fell on female caregivers, leading to a life of bondage for them. It is essential for healthcare workers to identify and comprehend the living conditions of female relative caregivers in the hospital to determine their difficulties and needs. Finally, caregivers deserve adequate and effective support such as technical support, financial assistance and nutritional guidance.
Data availability statement
Data are available on reasonable request. All data relevant to the study are included in the article.
Ethics statements
Patient consent for publication
Ethics approval
This study was approved for review by the Medical Ethics Committee of Shenzhen Chinese Medicine Hospital (approval number k2022-009-01). The research methods, contents and procedures were presented to the study participants in detail, and the informed consent form was signed by participants. The rights to privacy and information of the female caregivers were adequately respected before the interview.
Acknowledgments
The researchers thank the female volunteers for their contributions to the study.
References
Footnotes
Contributors XF contributed to the design of the study, the acquisition of participants, the analysis and interpretation of data, and writing (original draft preparation). XF is responsible for the overall content as guarantor. The guarantor accepts full responsibility for the finished work and/or the conduct of the study, had access to the data, and controlled the decision to publish. JD contributed to the design of the study, data curation and methodology. HY contributed to investigation and collected data. QX provided care for study patients. XW contributed to supervision.
Funding The present study was supported by the Scientific Research Project of Traditional Chinese Medicine Bureau of Guangdong Province, China (grant number 20221351) and Shenzhen Science and Technology Program Project (grant number KCXFZ20201221173208024).
Competing interests None declared.
Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.
Provenance and peer review Not commissioned; externally peer reviewed.