Background
Population aging has become a worldwide phenomenon, and the concern of elderly care is expanding worldwide [
1]. The seventh census of population in China shows that there are 190 million people aged 65 or above, accounting for 13.5% of the total population [
2]. Due to the decrease of mortality rate and the extension of life expectancy, the number of the elderly is increasing at the rate of 5.96 million per year. It is predicted that by 2050, China's population above 60 years of age may be reach 498 million [
3]. With advancing age, it means the continuous degradation of various physiological functions. This population trend also means that the proportion of people with mental or physical disabilities who are unable to carry out activities of daily living increases [
4]. According to statistics, by 2019, there will be more than 40 million disabled and semi disabled elderly people in China, which is expected to reach more than 60 million by 2030 and 96 million by 2050 [
5].
“Disability” is an integrative concept that represents the state of incomplete self-care due to various reasons such as old age, disease or physical and mental disorders [
6,
7]. With the aging of population, the care problems caused by the increase of the disabled elderly have become increasingly prominent. Most of the disabled elderly are more vulnerable to the pressure brought by the new environment due to the influence of traditional ideas and physical weakness and aging [
8,
9], and are unwilling to choose an unfamiliar environment outside the family and community [
10,
11].
To meet the needs of the disabled elderly, the government advocates and encourages home-based care [
12]. Both family caregivers and community nurses play an important role in the care of the disabled elderly at home. Their mutual cooperation can effectively improve the quality of home care for the disabled elderly [
13]. In the context of home-based care, engagement of community can not only meet the demands of the disabled elderly who are eager for stay-at-home, but also help families provide life care and ensure the quality of care for the disabled elderly [
14]. Compared with institutional elder care, community participation in home-based care has the advantages of low cost and high efficiency, which make the demand for community care services of the disabled elderly continue to increase [
15]. At present, the family members, with children and spouses as the main body, are still the main providers of home care for the disabled elderly [
16]. With the increase of age and disability, the care needs of the disabled elderly at home also increase [
17]. However, the trend of family’s centralization and miniaturization leads to the decrease of available care manpower in the family [
18]. In addition, the burden of long-term care and the lack of time and energy further weaken the function of current care manpower; furthermore, family caregivers are generally deficient in professional caring knowledge and tools, which can not satisfy the requirements of technical care services, resulting in the deficiency of care workforce and ability, which directly affects the quality of care for the disabled elderly [
19,
20]. Therefore, in the process of home care for the disabled elderly, the support provided by the family is very limited, and it is difficult to fully realize the long-term care for the disabled elderly. The family's demand for the assistance of long-term professional care from the community is also growing [
21].
The collaboration between family caregivers and community professionals' can effectively improve the mental health level of the disabled elderly [
22]. Other studies have shown that the establishment of professional community medical and nursing service institutions can take over the care of the disabled elderly when their families can not take care of them, so as to avoid their worries [
23,
24]. On the other hand, professional community service institutions can ensure the disabled elderly to seek medical treatment at the first time in case of physical discomfort or emergency, and reduce the treatment risk of the disabled elderly [
25]. Community medical staff provide professional and refined services. Family caregivers can replace professionals, provide less technical informal care services. Family caregivers and community nurse coordinate and cooperate, which enable the disabled elderly to live in their familiar environment and receive professional care services [
26]. The interactive relationship between community nurses and caregivers provides caregivers with a good way to vent their bad emotions and gain emotional support. Studies have shown that community nurses have established a stable trust relationship with them during continuous family visits, and that caregivers are willing to open up to their difficulties and dissatisfaction, and proactively express their various emotional and social needs [
27].
Henan province is located in central China, and Zhengzhou city is the capital of Henan Province, with a large population base and a severe aging trend. In recent years, the Zhengzhou Municipal government has gradually attached great importance to the construction of the elderly care service system. By 2021, Zhengzhou has built 67 street elderly care service centers and 657 community day care centers [
28]. With the continuous promotion of national basic public health services, the number of community nurses in China is increasing. At the end of 2020, there were 219,574 community nurses in China [
29]. Community nurses need to provide basic care and other health care services to individuals, families, communities and social groups, including disease and injury prevention, health promotion, disability rehabilitation [
30]. There is no unified standard for charging fees for home care services [
31]. Community nurses often work independently for in home hospital beds, home care and other services [
32]. However, Community nurses focus on providing services to the elderly and lack awareness of attention and communication with caregivers. Therefore, there few opportunities for communication between caregivers and community nurses [
33,
34]. Therefore, it is necessary to value the interaction relationship between community nurses and family caregivers.
The effective interaction between family caregivers and community nurses is very important in the process of caring for the disabled elderly at home. However, the previous studies on the interaction relationship between family caregivers and medical staff mostly focused on aging service agencies and hospitals, and did not pay much attention to the contexts of family caregiving in community settings [
35‐
37]. Therefore, this study aims to explore the interaction experience of them in caring for the disabled elderly at home from the perspective of family caregivers and community nurses, so as to provide reference significance for future related research.
Methods
Study design and setting
This qualitative research was conducted between March and June 2022. Qualitative data were collected from family caregivers and community nurses of homebound disabled elderly people in Zhongyuan District, Zhengzhou City, Henan Province. All participants provided written informed consent. The study has been approved by the ethical review committee of Zhengzhou University (ZZUIRB2021-15).
We used semi-structured [
38] face to face interviews, basic qualitative descriptions and a content analysis to understand the characteristics of interaction community nurses and family caregivers of disabled elderly in China. Qualitative descriptions aim to provide a comprehensive summary of events in terms of the participants’ experiences and perceptions [
39]. A directed content analysis is used to examine face-to-face interaction. We believe that a directed content analysis is an ideal method. A directed content analysis requires the theoretical framework or theory to be identified before the data analysis begins [
40]. We chose Jun-E Liu’s Nurse-patient communication model to guide analysis of the interaction between community nurses and family caregivers. Jun-E Liu’s Nurse-patient communication model includes the following 3 key structures: emotion, information, and behavior [
41]. We report our study design and findings according to the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist [
42].
Researcher characteristics
The two investigators (PG and DZ) are female nursing students with a health care background, trained in conducting and analysing qualitative interviews. No relationship existed with the participants prior to the interviews. One investigator conducted the interviews, the other investigator was responsible for recording and time management and both participated in coding the transcripts. The two investigators had masters level expertise in qualitative data collection and analysis.
Participants
The family caregiver should be: 1) at least ≥ 18 years old; 2) be the family members of the disabled elderly people (aged ≥ 60 years and Katz Index score < 6) and taking care of the elderly as the main caregiver for more than 3 months. The community nurses should be: 1) at least 18 years old; 2) the service and management personnel of relevant institutions in the community who often have direct contact with the elderly and provide door-to-door services; 3) having been engaged in community service for more than one year. Exclusion criteria included cognitive disorders, unwillingness to participate or to complete the interview, and temporary employees.
Data collection
Two primary investigators conducted semi-structured face to face interviews with community nurses and family caregivers of disabled elderly between March and June 2022. Interviews were conducted at Community Health Services Center and family caregivers’ homes. Participants were recruited through purposive samplings from the Linshanzhai Community Health Services Center in Zhengzhou City, Henan Province. Firstly we contacted the community nurses and interviewed them after consent. After the interview, community nurses led us to find family caregivers of disabled elderly people who met the inclusion criteria within their jurisdiction. Explain the purpose and significance of the study, and ask if they were willing to participate in the interview. Degree of disability of the elderly was measured by Katz Index Scale [
43,
44]. A score 6 represents complete independence, 4 ~ 5 represents mild disability, 2 ~ 3 represents moderate disability, and 0 ~ 1 represents severe disability. Prior to the interview, participants were informed the research content and purpose, as well as confidentiality protections. They signed an informed consent form if they agreed to participate and granted us permission for recording. No non-participants were present during interviews; no repeat interviews were carried out. The content of interviews included participants’ demographic characteristics (i.e., gender, age, highest education level, and living status) and interaction experience, through the following questions (See Table
1 for interview guidelines). Interviews were recorded and transcribed verbatim and transcripts were identified and verified for accuracy against audio recordings. The sample selection was continued until no other themes or sub-themes appeared.
Table 1
Interview guidelines
Family Caregivers | ①Has the community nurses ever assisted you? What is it? ②What assistance would you like from community nurses? ③How do you view your relationship with community nurses? ④How do you feel about your interaction with community nurses? What aspects are involved? ⑤Have you ever had a conflict with a community nurses? How did this happen? |
Community Nurses | ①Have you ever provided assistance to family caregivers of disabled older people? What is it? ②How do you feel about your relationship with your family caregiver? ③How do you feel about your interaction with family caregivers of disabled older people? ④ What do you think are involved in the interaction with family caregivers? ⑤Have you had any conflicts with family caregivers? How did this happen? |
Analyses
Two researchers agreed to end the participant recruitment process when no novel information seemed to emerge from participant interviews. Interview records were stored on a secured device to fully protect the privacy of participants. The audio-taped interviews were listened repeatedly and transcribed verbatim. Before the formal analysis, the interviewees were coded with letters and numbers F1-F7, N1-N5 to process personal sensitive information such as their names. Then directed content analysis method was used to extract the effective content, code, classify and simplify the relevant content, extract the theme and return to the interviewees for confirmation, and finally refine the interview theme. The data analysis focuses on interaction experience of the disabled elderly family caregivers and community nurses. The coding scheme was based on the three key elements of Jun-E Liu’s Nurse-patient communication model: emotion, information, and practice [
41]. These elements provided provided an analytical perspective of the interactions between community nurses and family caregivers of disabled elderly.
An analysis team comprised two analysts (PG and DZ). Firstly, the data were open coded using a line-by-line coding process. The two analysts engaged in data immersion to be fully familiar with the data. A letter, word, sentence, or a part of the page was coded as the unit of analysis. The analysts carefully read the transcripts to identify evidence of the theoretical derived codes. Repetitive words, concepts and phrases were recognized. Then, the codes were grouped into broader categories reflecting the characteristics of interactions between community nurses and family caregivers. Finally, the codes and categories of each transcript was compared between the analysts, and differences were discussed and resolved to ensure consistency of the research team [
45]. The analysis continued until no new information emerged from the interviews (data saturation) [
46].
To ensure credibility, the two coders consulted with each other to address ambiguities or disagreement on methodological issues or data analysis. The findings were reviewed by a third, senior researcher with expertise in this field of study, to confirm whether the descriptions accurately reflected the interaction experience of the disabled elderly family caregivers and community nurses.
Discussion
With the deepening of aging population degree, long-term care for disabled elderly has become a challenging problem gradually. On the one hand, the disabled elderly hope to stay at home [
11]; Nevertheless, due to the weakening of family function and the limited support family providing [
10], it is difficult to fully realize the home-based long-term care for the disabled elderly, which eventually leads to the increasing demand for community care [
21].
Family caregivers and community-based care service can combine the advantages of both good family care and community professional services [
26]. Some studies have shown that creating a positive and friendly social environment can promote the positive interaction between family and community, effectively improve the quality of care for the disabled elderly at home, and reduce the burden of family and society [
48‐
50].
Studies have reported the importance of the quality of social interactions between family and formal care providers in residential care settings, and less is known about such relationships in community-based care settings in which the majority of disabled older adults [
51,
52]. Semi-structured was conducted interviews with community nurses and family caregivers of disabled elderly to collect information regarding their experiences and attitudes toward interaction. Based on the data collection and directed content analysis, four overarching themes were identified: Information interaction, Emotional interaction, Practical interaction, and Factors that promote and hinder the interaction.
Collaboration is one of characteristics of social interaction between family caregivers and community-based service providers [
35,
53]. If family caregivers are able to build a collaborative and reciprocal relationship with the community caregivers, which will enable them to better provide care for the disabled elderly people, while reduce the burden on the family caregivers [
54,
55]. And being well connected can enhance this collaborative relationship between family caregivers and community nurses [
48,
56]. However, at present, caregivers have access to limited the help and resources of community nurses, and no building good collaboration relationship. Other family caregivers said community nurses often had very limited time of services provided to unable to communicate deeply with them. Therefore, caregivers hope to increase the frequency of communication with community nurses, as well as provide multiple forms of communication to achieve effective communication [
57,
58].
Getting professional support includes emotional support, information support, and practical support. Family caregivers who perceived higher levels of support reported significantly higher levels of satisfaction with professional providers [
35]. Family caregivers, who are mostly non-medical practitioners, want the community to provide an information-sharing platform for health counseling to get more information about the care of the disabled elderly. In terms of practical help, there are still deficiencies in the quality and quantity of services provided by community nurses. As many disabled elderly people suffer from long-term chronic diseases, community nurses should visit regularly to monitor their health status for a long time [
59]. Due to the health problems of the disabled elderly, the lack of relevant care skills and heavy burden of caregivers, they are eager to have professional nursing staff to provide services to reduce their burden [
60]. Moreover, caregivers also raised the problem of difficulty in seeing a doctor, hoping that community nurses can assist in seeing a doctor. However, community-based service agencies often focus on physical aspects of caregiving, such as the number of hours served and tasks completed, rather than the social or emotional aspects [
61]. Caregivers have heavy psychological load and cannot be released under high psychological pressure for a long time [
62,
63]. Therefore, caregivers urgently need some psychological counseling and psychological counseling to relieve caregivers' pressure and maintain their good emotional state. Previous studies showed the importance of provider support on the psychological well-being of family caregivers [
64]. When the caregivers' efforts are affirmed and praised by community nurses, their self satisfaction and sense of honor will be improved, which will help to provide better care for the disabled elderly.
Factors that promote and hinder the interaction the interaction. At present, the participation of community nurses in the care of disabled elderly at home is low. In the interactions between nurses and family caregivers, nurses usually lack initiative [
65]. In order to promote the interaction between caregivers and community nurses, the participation of community nurses should be increased, and community nurses should be more active in the home care of the disabled elderly. Moreover, community nurses and family caregivers should tolerate each other, reduce conflict, take the health of the elderly as a common goal, and actively promote partnerships [
66]. However, there are insufficient community nurses in the health management of the disabled elderly, and the professional quality of community nurses is uneven. There are also some family caregivers with poor physical condition or low cooperation and low attention, resulting in inadequate care. These all will hinder interaction between family caregiver and community nurses. Interventions to facilitate positive interactions such as support and collaboration between family and nursing home care providers have been developed and tested [
67]. Such interventions can be adapted for community-based care settings. Family members are more likely to provide a larger share of caregiving tasks in community settings compared to nursing home settings [
35,
68].
In light of the implications of the findings of this study, future research could further advance this field by developing interventions to enhance interactions between home caregivers and community nurses to help them to effectively collaboration and support each other. Besides, government and social organizations should create and provide a suitable environment where family caregivers and community nurses can focus on strengthening their interactive relationships to bring the highest quality of care to older adults with disabilities.
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