Introduction
Palliative care has been associated with relieving suffering and optimizing the quality of life among patients with poor disease prognoses and their families [
1]. Existing studies suggest that most people prefer to receive care and to die at home, and a majority of patients do not change their opinion as their disease progresses [
2]. The focus of hospice and palliative care should not only be on controlling physical symptoms but also on meeting the patient’s preference for their place of death [
3,
4]. The Cochrane systematic review showed that home-based hospice and palliative care (HBHPC) increased the odds of dying at home [
5]. Previous evidence has shown that patients who received HBHPC had lower symptom burdens, lower health care costs, and higher care satisfaction [
6,
7]. Care at home fulfilled patients’ wishes to avoid excessive medical treatment and to achieve a dignified death [
8,
9].
There are two main systems of providing HBHPC in China. One functions through hospitals, and the other relies on community health centers (CHCs) [
10]. The former requires more hospital resources and time, and incurs higher patient costs that are not covered by health insurance [
10]. Home-based hospice and palliative care offered by CHCs are a potential solution for easing current pressures on hospitals. HBHPC teams are composed of community nurses, general practitioners, and rehabilitation physicians who provide high-quality care for patients in residential communities with populations of around 30,000 people [
11,
12]. A few healthcare professionals from each CHC are often selected to attend short training on hospice and palliative care [
13].
In the past few years, some CHCs have begun to launch HBHPC services, which are often organized by nurses, general practitioners, rehabilitation therapists, and pharmacists. The municipal government has assisted communities in certifying eligibility for HBHPC recipients. Despite this progress, HBHPC programs have been difficult to implement due to insufficient legislation and policy, as well as a lack of financial, educational, and training resources [
14]. Furthermore, most patients and their families have a low degree of knowledge and acceptance of hospice and palliative care, mostly due to the influence of traditional Chinese culture—discussing death remains taboo [
15‐
17].
Home-based hospice and palliative care programs put higher demand on community nurses’ skills, because HBHPC moves specialized caring out of CHCs into the home environment [
18]. The role of HBHPC community nurse is a relatively new phenomenon. The profession is not well-known, and neither are the challenges faced by these nurses. This lack of knowledge hinders efforts to evaluate how HBHPC can reach its full potential and support the national government’s public health goals. Understanding specific challenges experienced by community nurses when delivering patient and family-centered hospice and palliative care in home-based conditions may allow us to improve HBHPC quality and guide future healthcare delivery. Therefore, we aimed to explore the challenges faced by community nurses when providing HBHPC.
Methods
Aim
This study explored the challenges faced by community nurses who provide HBHPC.
Study design
We used a descriptive phenomenology approach to explore the obstacles experienced by community nurses who provided HBHPC [
19]. We conducted semi-structured, in-depth, face-to-face interviews to collect data between October 2018 and February 2019.
Setting/participants
The study was conducted through two CHCs in Jinan, China. Shandong Province is the second-most populous province in China and its population faces a high disease burden [
20]. The city of Jinan in Shandong Province is also home to a large elderly population with prominent features of aging and disability. Home-based patients present a substantial demand for hospice and palliative care [
20].
We used purposive sampling for nurse selection. The eligibility criteria for study participation included: 1) registered nurses who have worked in the CHC for at least 1 year; 2) provided home-based care within 6 months of the study for patients who had a diagnosis of cancer, heart failure, or other life-limiting, progressive, or disabling diseases; 3) ability to speak Mandarin. Exclusion criteria were as follows: 1) nursing interns; 2) declined to participate in the interview. Each nurse was interviewed in a private room during their work time. No new themes emerged from participants’ experiences when the number of community nurses reached 14.
Ethical approval
The Ethics Review Board of Shandong University’s School of Nursing and Rehabilitation approved this study (No. 2016-e-23). Participants gave fully informed consent by signing a consent form, and all documents were kept private and confidential. All audio-recorded interviews were reviewed by the transcriber and the principal investigator only, and each participant was identified by a specific code number rather than by name.
Data collection
Two interviewers with qualitative research and interview skills conducted the entire interview process. Before data collection, the researcher visited the targeted CHCs. She gained the support of the CHCs’ leadership, established a trusting relationship with nurses, and learned about HBHPC.
The primary researcher then explained the purpose, methods, and significance of the study to potential participants; collected general demographic data; assured the interviewees of the anonymity and confidentiality of their information; and promised that the collected data would not affect participants’ work performance evaluations. After obtaining participants’ informed consent, interviews were conducted and recorded. Data collection involved semi-structured, personalized, face-to-face interviews with nurses performed in Mandarin Chinese by the primary researcher, who had background experience in nursing, allowing for better understanding of the participants’ perspectives. The other researcher took notes during the interview, which were used to provide contextual information concerning the interview for future reference.
The interview outline was developed through literature review and consulting professionals, and our research group discussed the question outline in advance. The interview started with two open-ended questions, and then follow-up questions were asked to clarify participants’ viewpoints.
The interview’s two main questions were as follows:
1)
What are your experiences of providing home-based hospice and palliative care?
2)
Based on your experiences, what are the challenges, difficulties, confusions, and conflicts you have faced when providing home-based hospice and palliative care?
Data analysis
The researcher used a thematic analysis approach to analyze the interview data [
21]. Within 24 h after the end of each interview, the researcher listened to the recording, referred to the on-site notes, and transcribed the recording verbatim. The “conformity method” was adopted for data analysis [
21]. The researcher carefully read the data; deliberated on the recording and text content; coded, classified, reasoned, and analyzed the recurring content; and finally extracted the theme. She consulted another researcher about uncertainties regarding themes, and disagreements were discussed until consensus was reached among the research team. Finally, initial themes were communicated with participants in one-on-one face-to-face meetings [
21]. Our reporting adhered to the consolidated criteria for reporting qualitative research (COREQ) guidelines [
22].
Discussion
This research used a descriptive qualitative approach to explore the challenges faced by community nurses when providing HBHPC in the prefecture-level city of Jinan in China’s Shandong Province. This study found that major challenges included nurses’ inadequate self-preparation to provide HBHPC, patients and their families’ non-cooperation in HBHPC, and community health service career drawbacks. Some of the negative experiences may be related to institutional barriers. Moreover, according to participants’ responses, we noticed that external problems that arose from the patients and institutions involved in HBHPC exacerbated the internal challenges, such as low motivation, faced by the nurses themselves.
The first central theme was related to nurses’ personal issues, and was subdivided into low job motivation and professional inability to provide HBHPC. The results were similar to those of published studies [
24‐
26]—a lack of HBHPC knowledge and skills among health specialists was a common challenge when delivering primary care. HBHPC is a new form of nursing practice that nurses felt they were not sufficiently prepared for. According to organization theory [
27,
28], new approaches to HBHPC likely entailed organizational changes. These variations subsequently created feelings of insecurity and confusion among the nurses involved related to care coordination, multidisciplinary collaboration, and expectations about their own and other specialists’ roles [
27,
28]. Previous studies have shown that educating nurses about the benefits of HBHPC could increase their understanding and motivation to serve [
29]. Knowledge of and belief in the benefits of HBHPC are major predictors and explanatory variables that affect nurses’ willingness to provide HBHPC [
29]. Improved HBHPC teaching materials, provision of ongoing in-service training opportunities, and regular supervision could improve community nurses’ confidence when providing HBHPC [
29‐
31].
Community nurses faced difficulties related to some instances of non-cooperation from patients and their families. Home care nurses are entering a family-centered care system. In HBHPC, nurses do not solely tend to patients—families are often significant participants in patients’ care, and family involvement should be encouraged [
18]. One critical strategy for providing patient and family-centered care is sharing decision-making [
32,
33]. The patient or their families and nurses should share essential information, discuss risks versus benefits of various nursing options, and express their preferences [
32,
33]. Effective patient-nurse communication that permits collaborative patient and family-centered care improves adherence to medical advice, leading to better palliative care outcomes [
32,
33].
Patients and their families’ potential biases exacerbated nurses’ lack of motivation and confidence when providing HBHPC. Public biases tend to favor physicians over nurses, as many believe that nursing simply entails executing doctors’ orders, and lacks credibility [
34,
35]. Besides enhancing nurses’ abilities of HBHPC [
36,
37], HBHPC requires that providers have service-oriented motivations [
38], which include altruism, humanitarian respect, seeking new experiences, wanting to help others, and personal growth [
39]. Altruism and humanitarianism often are influential factors that drive one to volunteer to make a difference in others’ lives [
40]. However, regardless of whether nurses embodied these characteristics, many felt unmotivated to provide HBHPC, as the increased stress and effort required to deliver psychological care and family-centered care to patients were not reflected in their salaries.
Palliative care is typically a heavily multidisciplinary practice; however, home-based services only involved nurses, general practitioners, rehabilitation specialists, and pharmacists. Effective HBHPC requires the support of additional professionals, such as hospice and palliative care volunteers and social workers, who can assist with chores and tasks in the home setting [
41]. Hospice palliative care volunteers can collaborate with nurses [
41‐
43]. They positively influence quality of care for patients and their families by reducing stress, and by offering practical assistance, emotional support, and companionship [
41‐
43]. Integrating these volunteers into the home setting would increase the number of individuals providing perspectives on care interventions, leading to more holistic, effective care [
41‐
43], especially when it is inconvenient for nurses to participate in the patient’s family affairs.
Many community nurses mentioned that providing HBHPC increased their workload compared to their previous jobs with CHCs. They highly valued jobs with bianzhi, as bianzhi for them meant being considered an employee of the state administration, which is viewed as a more stable career. Participants were dissatisfied with their current career development opportunities and benefits; this feeling eventually decreased their motivation and willingness to provide HBHPC. The pay-return imbalance model suggests that providing more energy and effort than received in return produces a sense of psychological imbalance, which leads to negative emotions and sustained stress responses [
44]. Increased effort-reward imbalance is an incremental predictor of burnout [
45]. The public government should increase the financial support provided to CHCs and improve performance assessment indicators. Additionally, nurses’ job performance relied on incentive mechanisms to a certain extent. Incentive management is an essential part of the field, and incentives create benefits including retention of employees and higher motivation levels from nurses. Effective incentives can ensure the continued vitality of organizational development and promote organizational goals. Community nurses should receive external rewards (wage income, fringe benefits, etc.) and internal rewards (encouragements, praise, training, evaluation, etc.) commensurate with their work responsibilities.
The World Health Organization (WHO) suggests that community nurses and other CHWs can be guided to provide palliative care education to homebound patients and their families [
46]. Hospice and palliative care courses should be part of continuing education available to community health workers (CHWs,) and the availability and accessibility of HBHPC education and training must be improved [
46]. Chinese health authorities can focus on developing a public health care system involving nurse-led palliative home care teams with supervision by hospice-based palliative care units thereby improving the efficiency and effectiveness of education on palliative care. The Chinese government can design a policy system that considers HBHPC part of community-oriented primary health care, based on the Essential Package of palliative care for Primary Health Care (EP PHC,) to eliminate institutional barriers to the development and availability of HBHPC [
47].
Strengths and limitations
In our study, purposeful sampling was used to ensure inclusion of community nurses of differing ages, lengths of nursing service, and varying levels of education. Although all participants were female, this does somewhat reflect the typical gender composition of nurses with HBHPC experiences. Our study produced a wealth of data that deepened our understanding of the HBHPC experience and challenges nurses faced when providing this form of care. Another limitation is that all participants were recruited from two CHCs in Jinan. Thus, participants’ challenges when providing HBHPC might not represent community nurses’ experiences in other cities. Exploration of the experiences and challenges of community nurses in different, more diverse settings is needed.
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