Long-term care insurance (LTCI) projects were an essential components of health systems designed to support disabled people and their families. Despite LTCI has been getting more and more attention and promotion, there was a lack of qualitative study to explore the experiences of family caregivers who were directly involved in the care of disabled people enrolled in these projects. This study aimed to explore the experiences of family caregivers in the caregiving process within the context of LTCI.
Methods
This qualitative study used inductive content analysis to explore the experiences of family caregivers of disabled people. Fifteen family caregivers from long-term care service companies and communities in Nantong city were purposively selected to participate in the study between December 2023 to February 2024. Semi-structured in-depth interviews were conducted to collect data. The interviews were audio-recorded and transcribed verbatim.
Results
The results revealed a total of five major themes with thirteen sub-themes including: (1) caregiver fatigue (i.e. heavy daily care tasks, and lack of rest); (2) emotional stress (helplessness and depression, and isolated and alone); (3) perceived benefits of caregiving (emotional connection, and a new outlook on life); (4) more expectations for LTCI (expect respite care, expect medical care facilities, expect longer service duration and frequency, and expect more economic subsidies); and (5) positive evaluations of LTCI (provide psychological support, reduce the burden of care, and professional care services).
Conclusions
This study’s findings improved our understanding of caregiving experiences among family caregivers of disabled people enrolled in LTCI. Identifying caregivers’ experiences enabled the authorities to develop support strategies and interventions focused on helping them reduce the caregiver burden.
Hinweise
Yitong Liu and Wenkun Xu contributed equally to this work.
Publisher’s Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Abkürzungen
LTCI
Long-term care insurance
BI
Barthel Index
ICA
Inductive Content Analysis
Background
China is facing significant challenges due to its aging population and the increasing number of people with disabilities [1]. The term “disabled” refers to people with physical or cognitive impairments that limit their daily activities and independence [2]. The main risk factors for disability include physiological factors, disease factors, environmental factors, etc. These disabilities can range from mobility issues due to arthritis, osteoporosis or stroke, to cognitive decline associated with conditions like dementia or Alzheimer’s disease [3]. The prevalence of chronic diseases, such as diabetes, heart disease, and respiratory ailments, also contributed to disability among the middle-aged and older adults [4]. Lifestyle factors, including poor nutrition, lack of physical activity, and smoking, can exacerbate these issues [3]. Lastly, mental health conditions like depression and anxiety can influence one’s ability to perform daily activities [5].
The choice of senior care among middle-aged and older adults in China is influenced by cultural, economic, and individual factors. In China, filial piety, as a strong cultural value, played a crucial role in shaping people’s attitudes towards senior care. Family members, especially adult children, were usually expected to take care of their parents. This cultural expectation may lead people to be more inclined towards informal care, such as home-based care, rather than formal care services [6]. Informal family caregivers nowadays being primarily responsible for meeting their daily needs and ensuring their quality of life [7]. Moreover, the economic burden of long-term care may discourage older adults from seeking formal care options, which were often considered costly. Individual’s preferences and needs were also important in shaping the choice of senior care [8]. For instance, some may prefer the familiarity and comfort of home-based care, while others may seek more specialized care in nursing homes.
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However, caregiving can be difficult. Caregivers often experience significant physical, emotional, and financial burdens [9, 10]. Previous studies have shown that caregivers may experience a range of emotions like stress, anxiety, depression, guilt, and sadness as they cope with the challenges of caregiving and witness the declining health of their loved ones [11, 12]. Kovaleva et al. pointed out that caregivers often report feeling socially isolated and lonely, as caregiving responsibilities can limit their ability to participate in social activities [13]. Caregiving expenses, such as hospitalization and medication costs, can place a significant financial strain on caregivers, especially if they need to reduce their working hours or quit their jobs to provide care [14]. Furthermore, long-term planning and decision-making regarding care arrangements and end-of-life care are additional stressors for family caregivers [15]. Family caregivers often do not have access to adequate support services [16]. Studies indicated that perceived social support will help reduce the caregiver burden and negative feelings [16, 17].
China has initiated LTCI (long-term care insurance) to enhance healthy aging outcomes [18]. Nantong was among the first cities to pilot the LTCI program in 2016, in response to the challenges posed by an aging population and declining birth rates [19]. The implementation content of LTCI in China included a wide range of care services tailored to meet the diverse needs of disabled people. These services included personal care assistance with activities of daily living (e.g. bathing, dressing, feeding), medical care coordination, respite care for family caregivers, rehabilitation services, and social and psychological support [20]. In addition, LTCI fostered a network of care providers, including professional caregivers, volunteers, and community-based organizations, ensuring that disabled people receive consistent and quality care [21]. The LTCI in Nantong was financed through a combination of sources including pooled funds from urban employee or urban and rural resident basic medical insurance, individual contributions, and government subsidies [22]. Disabled people who participated in LTCI in Nantong can enjoy LTCI benefits according to regulations [23]. For those who enjoyed home care subsidies, the subsidy standard is 15 yuan per day for severely disabled people and 8 yuan for moderately disabled people. The implementation process of LTCI involved several key stages [24]: initial application and assessment to determine eligibility and care needs; development and confirmation of a personalized service plan, regular service and supervision by qualified staff; claims submission and review for payment; and regular assessments to adjust benefits based on constantly changing care requirements. This ensured that individuals receive tailored, continuous care support as defined in their insurance policies.
Several studies have identified LTCI have a great impact on caregiving experiences and outcomes. Yi et al. demonstrated that LTCI not only improved the health status of family caregivers by reducing their caregiving burden but also had beneficial health effects on non-caregiver family members [25]. Chen at al. also pointed out that LTCI coverage improved caregivers’ physical health and social activities [26]. Pei et al. revealed that LTCI substantially alleviated the burden on informal carers while boosting labor market participation [27]. Overall, the implementation of LTCI in China had positive effects on beneficiaries and their caregivers, reducing healthcare expenditures and improving their quality of life [28].
Although some quantitative studies focused on family caregivers, qualitative studies on family caregivers of disabled people were limited, especially in the context of disabled people enrolled in LTCI. Conducting a qualitative study on family caregivers of disabled people was necessary. It helped identify their challenges, such as lack of skills, economic burdens, and emotional stress, and explored ways to support them. Furthermore, understanding the life experiences of family caregivers in the caregiving process contributed to improving the quality of care for disabled people and supporting their caregivers.
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Methods
Study design
This study used a descriptive qualitative research design and semi-structured interview to explore family caregivers’ experiences caring for disabled people. The qualitative data were purposefully selected from LTCI companies and communities in Nantong city between December 2023 to February 2024.
Participants
Purposive sampling was employed to recruit disabled people and their caregivers (Fig. 1). The inclusion criteria for disabled people were: (1) participation in LTCI in Nantong City, Jiangsu Province, (2) receiving care from a family member at home, and (3) being assessed as having limited ability to perform daily activities independently by the Barthel Index (BI). Exclusion criteria included (1) living in nursing homes, and (2) being cared for by the paid carer while living at home. Family caregivers’ inclusion criteria were: (1) self-reported as the primary caregiver, and (2) providing substantive assistance to the disabled people. The characteristics of people with disabilities and their caregivers were listed in Table 1.
Table 1
Characteristics of the disabled people and their caregivers (N = 15)
Caregiver
Disabled people
Number
Age
Gender
Education
Marital status
Occupation
Kinship
Length of caregiving (hours/day)
Self-rated health
Social participation
Gender
Age
Years of disability
Level of LTCI
N1
68
Female
Primary school
Married
Unemployed
Spouse
24
Fair
No
Male
71
10
Severe
N2
67
Female
Middle school
Married
Retired
Daughter-in-law
24
Fair
No
Male
98
10
Moderate
N3
36
Male
Junior college
Married
Employed
Son
10
Good
Yes
Male
68
10
Moderate
N4
76
Male
High school
Married
Retired
Spouse
24
Fair
No
Female
77
6
Severe
N5
75
Male
Primary school
Married
Unemployed
Spouse
20
Fair
Yes
Female
75
6
Severe
N6
69
Male
Primary school
Married
Unemployed
Spouse
24
Poor
Yes
Female
62
10
Moderate
N7
88
Male
Junior college
Windowed
Retired
Parents
24
Good
Yes
Male
58
20
Severe
N8
74
Female
Primary school
Married
Retired
Spouse
5
Poor
No
Male
79
6
Moderate
N9
63
Female
Illiteracy
Married
Unemployed
Spouse
15
Good
No
Male
65
22
Moderate
N10
55
Female
Primary school
Married
Retired
Sister
8
Good
Yes
Male
55
55
Moderate
N11
74
Male
Middle school
Windowed
Retired
Brother
24
Good
No
Female
90
8
Severe
N12
61
Female
High school
Married
Retired
Daughter
24
Poor
No
Male
97
6
Severe
N13
51
Female
Middle school
Married
Unemployed
Granddaughter
10
Poor
No
Female
98
3
Moderate
N14
81
Male
Primary school
Married
Retired
Spouse
24
Poor
No
Female
79
1
Moderate
N15
64
Male
Junior college
Married
Retired
Son
12
Fair
No
Female
91
2
Moderate
Fig. 1
The flowchart of the sample
×
Data collection
After the initial interview and explanation of the research details, the respondents agreed to be interviewed and were deemed suitable for this study. Subsequently, in-depth interviews lasting between 30 min and 1 h were conducted in appropriate locations within the caregivers’ homes. Respondents had the option to end the interview at any time.
The interview included the following critical questions:
I.
Can you describe your experiences while providing care for a family member with disabilities?
II.
What challenges or barriers did you face while providing care?
III.
What are your needs when caring for disabled people?
IV.
How do you evaluate long-term care insurance services?
Data analysis
The initial interview guide was created based on the research goals and literature reviews and then reviewed by two experts. Before each interview, it was important to explain the study’s purpose and significance to the participants, ensure the confidentiality of the interview content, and obtain consent for recording. Non-verbal behaviors such as facial expressions and body movements were also observed during the interviews. Interviews ended when enough information had been gathered.
Fifteen interviewees will be numbered N1 to N15, with data obtained from on-site observations used as a supplement to interview data. After each interview, three researchers organized the records using Inductive Content Analysis (ICA) [29, 30] for data analysis based on research protocols. ICA was an inductive and flexible method, and involved an iterative coding process where researchers read through the data, generate initial codes, and then group these codes into broader themes and categories.
The recordings were transcribed verbatim, and the researchers listened to the interview recordings repeatedly, carefully reading and recording all the information. They then gradually formed a written report on the caregivers’ experiences. Besides, significant statements were extracted. Researchers also encoded and collected the recurring viewpoints to create a thematic framework. The final thematic framework was refined through continuous comparison, categorization, and modification according to the actual situation reflected in the interview data. Additionally, member checking and peer reporting were used to enhance the credibility and validity of the findings.
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Rigor and trustworthiness
In this study, we employed some methods and procedures to ensure the credibility, transferability, dependability, and confirmability of our qualitative study findings. Prolonged involvement and member verification were techniques to ensure credibility. An audit trail has been maintained, documenting all procedures, decisions, and reflections throughout the research process, including detailed field notes, interview transcripts, and analysis memos to ensure the reproducibility of our research methods. Regarding transferability, we provided detailed descriptions of the context, participants, and setting, allowing the researcher and participants to view the data from their own perspectives. To ensure the confirmability of our findings, we conducted reflexive discussion, where researchers critically assessed their own preconceptions and biases. Additionally, peer review was held to refine our interpretations and findings.
Ethical consideration
The present study was approved by the Ethics Committee of Nantong University (protocol code: 2021014). All respondents were assured that the information would only be used for research purpose and informed consent was obtained. To protect the privacy and confidentiality of the participants, all data collected were anonymized and stored securely.
Results
Fifteen family caregivers were interviewed, with a mean age of 66.8 years. Seven participants had education at the primary school level or lower. Most caregivers were unemployed, having either retired or left their jobs to care for people with disabilities. Seven of the participants were spouses of disabled people, while the others included adult children, grandchildren, and siblings. Eight participants reported needing to care for the disabled people nearly all day.
Themes
Through data analysis, we identified the following five themes: (1) caregiver fatigue; (2) emotional stress; (3) perceived benefits of caregiving; (4) more expectations for LTCI; (5) positive evaluations of LTCI (Table 2). We also identified thirteen sub-themes. Each sub-theme was described below with supporting quotations from the participants.
Table 2
Illustration of themes, sub-themes, descriptions, and quotations of qualitative analysis
Themes
Sub-themes
Descriptions
Examples of quotations
Caregiver fatigue
Heavy daily care tasks
Family caregivers faced inconveniences and difficulties when caring, such as mobility with the disabled and daily hygiene issues.
“He has been bedridden since his 40s … The last time he fell, it took five people to help him up. Sometimes he curses, hits people, or even pulls my hair.” Caregiver N9
Lack of rest
While performing caregiving duties, caregivers had difficulty finding time for self-care and rest.
“…At night, I took care of her alone. She could get up six or seven times a night, sometimes sitting on the toilet for hours, so I cannot sleep….” Caregiver N5
Emotional stress
Helplessness and depression
Family caregivers experienced overwhelming helplessness and depression due to the relentless demands and emotional toll of caregiving.
“…He didn’t sleep at night, sometimes asks me to turn him over, or wants more food again. Sometimes I wish he would just pass away (angry words).” Caregiver N9
Isolated and alone
Family caregivers experienced isolation and loneliness due to the intense and all-consuming of their caregiving duties.
“… I spent most of my time playing on my phone or chatting with friends online. No relatives or friends around me, so I could only entertain myself…” Caregiver N13
Perceived benefits of caregiving
Emotional connection
Some family caregivers may experience intimate moments and gained pleasure while engaged in caregiving tasks.
“… I took care of him with his other sister. I let her come over when I had something to do. When she had something to do, I came over. We would do our best to assist anyone in our family who needs help.” Caregiver N10
A new outlook on life
Caring for the disabled often leads caregivers to gain a new perspective on life, realizing the value of responsibility, patience, and health.
“When my husband was at home, I would chat with my neighbors downstairs. Others said we were filial, but I believed children should provide elderly care.” Caregiver N2
More expectations for LTCI
Expect respite care
Family caregivers expected respite care services to provide temporary relief from their demanding caregiving duties.
“… I was the only caregiver, and it would be wonderful if volunteers from the community or civil affairs department could come to our home every week to provide assistance.”
Caregiver N6
Expect medical care facilities
Family caregivers expected accessible and supportive medical care facilities to enhance the quality of care.
“… If possible, I also hoped that long-term care insurance services can provide us with home care beds, so as to provide him with a more comfortable and safe resting environment.”
Caregiver N7
Expect longer service duration and frequency
Family caregivers expected long service hours and increased frequency from LTCI services to better manage their caregiving responsibilities.
“… I felt that the service time for this long-term care insurance was a bit short each time, and it would be even better if there were three services a week.” Caregiver N3
Expect more economic subsidies
Family caregivers expected the increased economic assistance to alleviate the burdens of caregiving.
“I thought that the country should increase subsidies for older adults … and the monthly subsidies from LTCI were not sufficient, forcing us to spend our own money to purchase them.”
Caregiver N12
Positive evaluations of LTCI
Provide psychological support
While medical staff provide services to the disabled at home, they can provide emotional support and comfort to family caregivers and reduce their psychological stress.
“I suffered from depression, my spouse didn’t talk to me every day, and my little dog couldn’t communicate. It was great that the caregivers can chat with me whenever they come.” Caregiver N9
Reduce the burden of care
The care services provided by LTCI can reduce the workload of family caregivers, and the weekly home service of professional medical staff can replace part of their work.
“I was delighted with their service. They exhibited more patience than I did in caring for my husband, which has greatly relieved my stress.” Caregiver N1
Professional care services
LTCI care services are provided by professional medical staff who have the necessary skills and knowledge and can provide more professional nursing services for disabled people.
“My wife is now in a vegetative state … They often massage her muscles and bones, which I was happy about … On the contrary, I was afraid of hurting my wife when I do it myself.”
Caregiver N5
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Theme 1: caregiver fatigue
Heavy daily care tasks
Family caregivers faced arduous caregiving tasks. Disabled people often require constant monitoring and assistance with daily activities such as bathing, dressing, and eating. These activities would exhaust their physical strength.
“My husband weighed 90 kilograms while I weighed less than 50 kilograms. Bathing him or assisting with his hygiene was physically challenging for me due to my lumbar disc protrusion causing severe pain. Although surgery was recommended by a doctor and hiring a nanny was suggested by my son, but finding suitable help has proven difficult, leaving me struggling with ongoing discomfort.” Caregiver N1.
“My husband turned 65 this year. He has been bedridden since his 40s, and I was his only caregiver. He was 190 cm tall and weighed 100kg. The last time he fell, it took five people to help him up. Sometimes he curses, hits people, or even pulls my hair.” Caregiver N9.
Lack of rest
As disabled people were a special group, they needed more energy and time to be taken care of. Therefore, family caregivers almost have no opportunity to rest, insufficient sleep and poor sleep quality were the norm for them.
“I’ve been taking care of her day and night for over 5 years, and I won’t let her out of my sight. When I was tired during the day, I just lied down next to her, and two hours of sleep at night was the most I could get. I usually do not participate in any activities. I haven’t even attended my granddaughter’s wedding, and I was worried about my wife being home alone.” Caregiver N4.
“During the day, I went to the fields to do farm work, and my daughter-in-law took care of my wife. At night, I took care of her alone. She could get up six or seven times a night, sometimes sitting on the toilet for hours, so I cannot sleep. There is no way. I was also a victim.” Caregiver N5.
Theme 2: emotional stress
Helplessness and depression
Caring for disabled people was not only a heavy task, but sometimes the disease status of them was also difficult to predict. Family caregivers may feel helpless. They may lost patience, became bored with the needs of the disabled, and even experienced emotional stress such as depression.
“My wife has Parkinson’s disease and has been disabled for more than 20 years. She couldn’t communicate with others, and we took her to several hospitals for treatment, but it was useless. My wife was unable to return to normal life, and my grandson is also suffering from autism and could not receive proper treatment. I was a bit at a loss when facing future life.” Caregiver N5.
“I often remind him to tell me if he wants to defecate, but he didn’t listen. The bed sheets sometimes need to be washed several times a day. He didn’t sleep at night, sometimes asks me to turn him over, or wants more food again. Sometimes I wish he would just pass away (angry words).” Caregiver N9.
Isolated and alone
Caregivers often find themselves dedicating their time and energy whole heartedly to looking after disabled people, leading to feelings of loneliness. They were unable to participate in social activities, resulting in a gradual decrease in social connections with their relatives and friends.
“I rarely went out because I was worried about the two elderly at home by themselves. I spent most of my time playing on my phone or chatting with friends online. No relatives or friends around me, so I could only entertain myself. I had a dog for company, which helped alleviate some of the loneliness.” Caregiver N13.
“I used to enjoy going out frequently and playing card games with my old friends; however, that was no longer possible as my wife required constant care. I certainly hoped to have time to relax outside, such as taking a walk in the park. Now I find myself trapped at home every day, feeling isolated from the society.” Caregiver N14.
Theme 3: perceived benefits of caregiving
Emotional connection
Caregivers, when taking care of disabled people, were driven by selfless love to care for them. In some families, caregivers reported can experience intimate moments and deepen emotional connections with the person they are caring for while engaging in caregiving tasks.
“My house is just south of the neighborhood, and I arrived here just need ten minutes. I took care of him with his other sister. I let her come over when I had something to do. When she had something to do, I came over. We would do our best to assist anyone in our family who needs help.” Caregiver N10.
“After my father passed away, we received financial subsidies, and now I also had a retirement salary. The pressure was not very high. I cook for my mum everyday and chatted with her. My two sisters often video with us, and we didn’t feel bothered by taking care of our mother and were happy every day.” Caregiver N15.
A new outlook on life
The experiences of caregiving can cause a re-evaluation of what were truly important in life, such as health was the first important thing. Facing difficulties and challenges can help caregivers develop resilience and inner strength. Caregivers may find that their roles in providing care lead to a new acceptance of life’s challenges, and adapt to and accept their caregiving responsibilities.
“When my husband was at home, I would chat with my neighbors downstairs. Others said we were filial, but I believed children should provide elderly care.” Caregiver N2.
“My daughter would drive him to the surrounding parks. We didn’t say once a week; we took him out whenever we wanted, almost every two days. He was also pleased to go out, and we got along very well. We were all optimistic and should do everything in this way. We didn’t feel that taking care of him took up our time.” Caregiver N10.
Theme 4: More expectations for LTCI
Although LTCI has been widely implemented, its coverage was limited and couldn’t meet everyone’s needs. In addition, due to the heavy burden of caring for disabled people, family caregivers often have more expectations related to caregiving.
Expect respite care
Respite care can provide family caregivers with short breaks to help them relieve stress and avoid burnout and physical and mental health problems associated with long-term care.
“My wife had diabetes, and her legs had ulcers. She was unable to care for herself. The burden on us was quite heavy, and I hoped the country can provide more support. I was the only caregiver, and it would be wonderful if volunteers from the community or civil affairs department could come to our home every week to provide assistance.” Caregiver N6.
“My sister-in-law has been paralyzed for 15 years. When she was young, she was poisoned by drugs and now suffers from hearing impairment. She required constant care throughout the day. It would be better if the country or community could offer respite care services so that I wouldn’t have to worry too much when I must leave for a while.” Caregiver N11.
Expect medical care facilities
Since many disabled people were unable to walk independently, devices such as wheelchairs and walking aids were often needed to assist care recipients in better performing daily activities and rehabilitation training.
“In the past, my wife was sick and I took care of her for about ten years. Later, when my son was not well, I took care of him all the time. If possible, I also hoped that long-term care insurance services can provide us with home care beds, so as to provide him with a more comfortable and safe resting environment.” Caregiver N7.
Expect longer service duration and frequency
In Nantong, for disabled people participated in LTCI, the medical staff worked in groups of two and came to the home twice a week, providing care for approximately 1 to 1.5 h during each visit. Many caregivers thought that the length of this service was a little short.
“I was the only child in our family, and I had to work on a regular basis. I had an aunt, she would come to take care of my dad when I had something to do. I felt that the service time for this long-term care insurance was a bit short each time, and it would be even better if there were three times a week.” Caregiver N3.
Expect more economic subsidies
Care costs were a significant concern for family caregivers, including medical expenses, nursing product costs, and daily living expenses. Disabled people requiring long-term care and treatment can create considerable economic pressure and burden on caregivers.
“I thought that the country should increase subsidies for older adults. Given our situation - my husband and I were both retired, the factory where we used to work has closed down, and we haven’t received substantial retirement benefits - the diapers for older adults and the monthly subsidies from LTCI were not sufficient, forcing us to spend our own money to purchase them.” Caregiver N12.
“My family had two older adults. After the demolition, we were assigned to the top floor, which was too inconvenient for me to care for the two older adults. We would like to transfer to the ground floor. Our family had a high demand for medication, so we hoped to receive some economic compensation.” Caregiver N13.
Theme 5: positive evaluations of LTCI
Provide psychological support
When faced with challenging caregiving responsibilities, caregivers inevitably experienced feelings of loneliness, anxiety, and depression. However, caregivers providing in-home services can engage in conversations and offer emotional support to the caregivers, helping to alleviate their psychological distress.
“I suffered from depression, my spouse didn’t talk to me every day, and my little dog couldn’t communicate. It was great that the caregivers can chat with me whenever they come.” Caregiver N8.
“Usually, I am alone at home, and the two medical staff were like my siblings. I felt happy when they were around because I could talk to them and shared the pain in my heart, which made me feel less lonely.” Caregiver N9.
Reduce the burden of care
In families enrolled in LTCI, medical staff visited their homes weekly to provide services to disabled people. This significantly alleviated the burden on caregivers, as they no longer have to shoulder these heavy care tasks alone. As a result, they can allocate more time and energy towards handling other matters effectively.
“I was delighted with their service. They exhibited more patience than I did in caring for my husband, which has greatly relieved my stress.” Caregiver N1.
“The staff from the care company visited my home twice a week to provide services, which reduced my burden. They assisted me in sharing some of the caregiving responsibilities; otherwise, I would not be able to care for my wife alone. I regarded the care company’s service highly, and their service attitude was also commendable.” Caregiver N4.
Professional care services
LTCI was typically associated with professional nursing institutions or teams that offer training and guidance to family caregivers. Through this program, family caregivers can gain professional caregiving knowledge and skills.
“My wife is now in a vegetative state. When neighbors or medical staff were at my home, I asked them to help me lift her up and sit down. They often massage her muscles and bones, which I was happy about. What I did was not as professional as what they did. On the contrary, I was afraid of hurting my wife when I do it myself.” Caregiver N4.
“My younger brother had limb dysfunction and often requires massage therapy to stretch his muscles. Initially, we were unfamiliar with this process; however, since joining LTCI, this service package also included massage therapy. As a result, we have learned numerous nursing skills and techniques. Although we cannot perform massages as proficiently as they do when they are present, we have gained valuable knowledge from them.” Caregiver N10.
Discussion
The present study examined the caregiving experiences of family caregivers of disabled people who participated in LTCI in Nantong City, Jiangsu Province, China. Through qualitative interviews, five major themes and thirteen sub-themes were identified, which represented the complex caregiving experiences of caregivers. The findings provided valuable insights into the challenges and needs of caregivers.
People with disabilities often struggle with self-care in their daily lives, often being bedridden or relying on a wheelchair for their daily activities. Our interviews revealed that most families have only one primary caregiver responsible for taking care of disabled people, with no one else available to assisted in their care. More than half of the respondents mentioned that they had to take care of disabled people around the clock. The caregivers must dedicated much time and energy to their care work, leading to increased physical and emotional stress. According to Zhong et al. [9], the prevalence of depressive symptoms among caregivers was 37.7%, with higher levels of caregiver burden negatively associated with depressive symptoms. In addition, social isolation and loneliness were also challenges faced by family caregivers [31, 32]. Vasileiou, K et al. explained that experiences of loneliness were described in the context of reduced personal space and decreased social interaction due to the constraints imposed by the caregiving role [33]. Some respondents expressed having little time for themselves and being unable to go out and participate in recreational activities. Former friends and relatives had become increasingly distant due to the lack of connection. Some caregivers believed that as the severity of people’s disabilities increased, they became more isolated from society.
The specific needs of people with disabilities, often accompanied by chronic illnesses, required family caregivers to take on a significant amount of medical care responsibilities [34]. This included administering medication, providing wound care, and more. Caregivers always prioritize the issues of disabled people, usually ignore their own health status and psychological pressure. It was essential to manage the health of the caregivers to ensure that people with disabilities have a high-quality life [35]. Some caregivers also mentioned balancing work and family duties alongside caregiving, leading to increased work-family conflict [36]. Montano et al. demonstrated that employees with caregiving responsibilities were more likely to consider giving up their jobs [37].
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In our analysis of the interviews, in addition to observing the challenges and stresses experienced by caregivers when undertaking care tasks, there was also a noteworthy issue that caregivers need to receive sufficient support from LTCI. The first issue revolved around economic subsidies. Caregiving expenses can place a significant financial burden on many families [38]. While they had all participated in LTCI, some of them were not very satisfied with the care subsidies or some welfare policies provided by the government. Second is the need for some medical care facilities. Some family caregivers expected accessible and supportive medical care facilities to enhance the quality of care. The third point is on respite care. Caregivers often need opportunities for respite to take breaks from caregiving responsibilities. Respite care services, such as temporary relief from caregiving duties, allow caregivers to recharge and prevent burnout [39]. Practical assistance such as longer service duration and frequency was also needed by family caregivers. Caregivers may need help with daily tasks such as household chores, meal preparation, or transportation [40]. Practical assistance from others can help alleviate the burden of caregivers. Moreover, informational support provided caregivers with knowledge and resources to effectively navigate complex caregiving situations [41]. However, in our research, most caregivers had lower levels of education and were not aware of the rights protection system issued by the country for disabled people.
Positive caregiving experiences can be described as uplifting, gratifying, rewarding, and satisfying [42]. A qualitative study on caregivers of people with dementia in Singapore suggested that it would be helpful to cultivate caregivers’ ability to identify the positive aspects of caregiving [43]. Xue et al. [44] explained that one possible reason for this benefit relates to values originating from culture. Traditional Chinese culture emphasized family cohesion. Many caregivers expressed that their motivation for this role was their sense of duty towards their family [40], and they valued respect, love, and care for their family members [45].
Our research focused on families participating in LTCI, which brought different caregiving experiences to family caregivers. For disabled people, it ensured that they will have access to the necessary care and support as their physical or cognitive abilities decline [46]. LTCI has been shown to improve subjective well-being in older adults with disabilities [47]. According to Chen et al. [26], LTCI programs in China provided higher-quality care, effective health management, and nursing intervention, which could improve older adults’ mental health. Formal LTC systems were demonstrated to be directly beneficial to care recipients and have spillover effects on their family members, especially on family caregivers. Most caregivers we interviewed were older and may also have chronic diseases. LTCI provided these caregivers with resources and support, such as funding, training, counseling services, etc., to help them address care challenges and maintain their health [25]. Besides, LTCI has also been proven to reduce the care burden on family caregivers and those with lower socio-economic status [25]. The Chinese government, society, and families widely recognize the need to develop a coordinated system for LTC in China to cope with the challenge of aged care [48].
Our findings provided further evidence for targeted interventions and policies to tackle the growing burden of family caregivers in China. Firstly, policymakers needed to recognize the crucial role of family caregivers and prioritize the development of comprehensive support systems to address their diverse needs. For example, policies should expand the scope of LTCI to cover a wider range of services, including assistive devices and rehabilitation therapies. The LTCI system should provide financial flexibility, such as varying levels of coverage to meet different caregiving needs and budgets. Additionally, community-based and non-governmental organizations were vital in providing support services and advocacy for family caregivers. Efforts should be made to strengthen collaboration between these organizations and government agencies. For example, medical staff can serve as a bridge between the healthcare system and family caregivers by providing guidance on available services, assisting with paperwork, and advocating for improved accessibility. Finally, future research should continue to explore the experiences and needs of family caregivers, with a focus on longitudinal studies to improve the quality of care and support for both family caregivers and disabled people in eastern China.
Limitations
Though this study focused on a relatively understudied topic, the experiences of family caregivers of disabled people participating in LTCI in eastern China, and the fact that we also explored the caregivers’ more support needs from LTCI, there are still several limitations. One limitation of this study was its potential lack of generalizability beyond the specific context of eastern China. The experiences of family caregivers and the effectiveness of LTCI programs may vary across different regions or countries, depending on factors such as healthcare infrastructure, cultural norms, and policy implementation. Moreover, the study’s reliance on self-reported data from caregivers may introduce potential biases, such as social support bias or recall bias, which could impact the validity and reliability of the findings.
Conclusion
Family caregivers of disabled people were often a neglected group. This qualitative study provided valuable insights into the experiences of these family caregivers in the context of the implementation of LTCI. The findings highlighted caregivers’ multifaceted challenges, including economic strain, emotional stress, social isolation, etc. The introduction and implementation of LTCI provided new ideas and ways to improve this situation. The study also underscored the importance of addressing caregivers’ support needs, including more economic assistance, respite care, and longer service duration and frequency, to enhance the effectiveness of LTCI and improve the quality of care for disabled people. Further research is needed to explore the long-term impacts of caregiving on caregivers’ health and well-being.
Acknowledgements
The authors of this article would like to thank all people who participated in this study, we are very grateful to the anonymous reviewers for their valuable comments on the manuscript revision.
Declarations
Ethics approval and consent to participate
Ethical Approval was obtained from the ethics committee of Nantong University (protocol code: 2021014; date of approval: 26/2/2021). All participants provided written informed consent. All methods were carried out in accordance with relevant guidelines and regulation, as mentioned in World Medical Association Declaration of Helsinki.
Consent for publication
Not applicable.
Competing interests
The authors declare no competing interests.
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