Socio-demographic characteristics
A total of 13 nurses from the two CHCs participated in our research. The nurses’ mean age was 37.2 years old, and their ages ranged from 25 to 53 years old. Their experience in providing medical care before these interviews ranged from 3-29 years, and their HBHPC experiences ranged from 3-12 months. 3 community nurses had been offered bianzhi (lifelong tenure) and 10 were not tenured [22]. Table 1 summarizes the characteristics of the participants.
Table 1
Participant characteristics (N = 13)
Characteristics of participants
|
Descriptions
|
N
|
Age range
|
25-29
|
3
|
Gender
Highest educational level
Bianzhi*
Length of nursing service (years)
Length of home-based hospice and palliative care service (months)
|
30-39
40-49
50-53
Female
Male
Junior college degree holder
Bachelor degree holder
Master degree holder
Yes
No
3-10
11-20
21-30
<6
≥6
|
5
3
2
13
0
7
5
1
4
9
4
5
4
2
11
|
*Bianzhi is similar to the concept of lifelong tenure guaranteed by government funding.
Analysis results
Analysis of the data using a phenomenological research method and thematic analysis method revealed the following three themes: 1) Community nurses’ inadequate self-preparation for providing HBHPC; 2) Patients and their families’ non-collaboration in HBHPC; 3) Community health service career disadvantages (Table 2).
Table 2
Summary of all primary and sub-themes extracted from the interviews
Main themes
|
Subthemes
|
Community nurses’ inadequate self-preparation for providing HBHPC
Patients and their families’ non-cooperation in HBHPC
Community health service career disadvantages
|
(i) Community nurses’ low job motivation toward providing HBHPC
(ii) Community nurses’ inadequate professional ability to provide HBHPC
(i) Patients and their families’ behaviors of poor adherence to HBHPC
(ii) Patients and their families’ unaccepting attitudes toward HBHPC
(i) Lack of career development opportunities
(ii) Inadequate benefits
|
HBHPC=home-based hospice and palliative care
Community nurses’ inadequate self-preparation for providing HBHPC
Community nurses’ low job motivation
While nurses considered HBHPC critical for patients with incurable diseases, it was recognized as a new form of nursing and a practice that nurses did not feel they were adequately prepared for. Most of them said that they only passively accepted the work tasks assigned by superiors.
“I just passively complete my work [home-based hospice and palliative care]. It is just a job for me. I am only here to make money.” (N3)
Some nurses described that, compared with nurses in hospitals, home care nurses had lower social status. They were rejected by patients and their family members due to a societal emphasis on medical treatment over nursing care, which made them less motivated to work.
“When I went to visit patients in a white coat, they would think that I was a doctor and they would welcome me, but when I went in a nurse uniform, I felt discriminated against.” (N6)
Community nurses’ inadequateprofessional ability to provide HBHPC
Community health centers offered courses in nursing theory regularly, but the nurses considered these courses superficial. Many nurses identified particular challenges in providing HBHPC, such as being unable to deliver highly individualized patient and family-centered care. It was difficult for nurses to identify their patients’ psychological challenges at different phases of their illness (e.g., soon after being diagnosed with an incurable disease, when living with the terminal illness, and at or near the terminal stage). Thus, it was difficult for them to take the initiative to prevent and relieve patients’ anxiety, depression, and distress. Community nurses were supposed to address families’ cultural preferences and requirements in their practice, but t. Nurses could only build on their prior personal experiences working in CHCs, as they lacked advanced training.
“It is hard for me to provide family-centered care for home-bound patients with more complex needs. For example, some family caregivers are rude to patients and do not practice good domestic hygiene… We did not know much about the patient’s religious beliefs and cultural preferences.” (N3)
“It is undeniable that I lack the experience and knowledge of psychological care. In addition, I worry that patients and caregivers may think I am weird if I talk about spiritual care (since nurses don’t do that in China).” (N12)
Patients and their families’ non-collaboration in HBHPC
Patients and their families’ behavior of poor adherence to HBHPC
The participants stated that patients’ actual health behaviors might not conform to their medical team’s recommendations. Sometimes, patients and their families even refused to accept treatment because they didn’t understand what was wrong with them or how the medical staff could help them.
“After a professional assessment of the patient, we wanted to give him some traditional Chinese medicine treatment for his persistent lower extremity edema and constipation, but he did not think he needed it.” (N8)
“It was time to replace the nasogastric tube, but family members were unwilling to let us perform this operation. They asked me to come again next Wednesday.” (N5)
Participants found that some patients’ families were not heavily involved in basic illness management and could not provide adequate affection or support. Relatives might be unable or unwilling to care for their home-bound elderly family members for a long time, and family members may rationalize their behavior by blaming others. However, nurses felt like these issues were private affairs of the patient’s family, and it was inconvenient to mediate between patients and families regarding these conflicts. This tension affected nurses’ willingness to continue visiting these patients.
“It is difficult for clinicians to intervene in family conflicts. Adult children normally take turns to care for the homebound parent, but some may be reluctant to do that. They are also not willing to pay the medical and living expenses of their elderly parent for an extended time. They use the excuse that they have a demanding, stressful job, so they do not want to take their turn to care for their parents.” (N1)
“This home-bound patient has always been taken care of by his youngest son. I asked the patient’s other son to buy some cotton swabs to help the patient moisturize his lips and mouth, but he was playing game on a smartphone and said he didn't have time.” (N2)
Patient and their families’ unaccepting attitudes toward HBHPC
Community nurses believed that the nurse-family relationship mainly depended on the patient and their family’s attitude towards palliative care. Although the nurse's place in the home setting has the potential to become well-established through multiple visits, nurses were often rejected by patients and their families, especially in their first visits to patients’ homes. Nurses felt like they were disturbing the patients and their families.
“When I knocked, they refused to open the door because they thought I was an unsolicited salesperson, I do not understand them, and they do not understand me… they did not trust us.” (N5)
“Before, I introduced myself at the door. The nurse-patient relationship was full of uncertainty at the initial visit; I didn’t know if patients and their families would let me in, or believe me, I just don’t know.” (N9)
Community health service career disadvantages
Lack of career development opportunities
Participants desired the same career development and training opportunities offered to public hospital nurses. Compared with public hospital nurses, who are usually required to have a bachelor’s or master’s degree, Community nurses only need to have a junior college degree. Community nurses are rarely given time to obtain an advanced degree or achieve higher academic qualifications. Community nurses were very rarely offered bianzhi. Some nurses stated that there are only 1 or 2 new bianzhi per year within one CHC. Senior nurses who have been employed the longest, typically older nurses, are generally given priority, so there are limitations in career development and promotion for young community nurses.
“[Compared to hospital nurses,] we [community nurses] have fewer opportunities to receive continuing education and obtain a higher professional nursing title. I just want to finish my job.” (N10)
“They [community nurses] thought of themselves as workers who were not offered bianzhi (lifelong tenure), so they lacked a sense of belonging. It was easy for them to deliver task-centered rather than patient-centered care in the process of providing home-based care. It affected the quality of home-based hospice and palliative care.” (N11)
Inadequate benefits
Many nurses had stated that they were not satisfied with their current salaries and the additional subsidies they received for providing HBHPC. More importantly, CHCs had not provided them with the necessary transportation and communication equipment needed to deliver home care. All nurses had to buy these materials at their own expense. Fringe benefits, such as transport and communication allowances, were the most frequently mentioned factor negatively affecting nurses’ motivation and intention to provide HBHPC.
“HBHPC is not a task to be taken lightly and will take a tremendous amount of time and effort to achieve, but I received minimal fringe benefits from the community health service center. We don’t charge the family for psychological care. It’s hard not to lose my motivation.” (N4)
“We have to use our own electric bikes, mobile phones, and data plans. These were all paid for by ourselves… If I use my personal phone number to contact them, I worry the patient and family would call me too often.” (N7)