Abstract
Purpose:
This study explores the use of nursing support among nurses for caregiver burden in family caregivers of terminally ill patients with cancer in palliative care units (PCUs).
Methods:
Requests were sent to 389 institutions, and cooperation was received from 162 PCUs. Nurses at 162 PCUs were asked to participate in an Internet survey regarding nursing practices for caregiver burden in Japan. The frequency of six nursing support practices (extracted in a scoping review) was reported using a 5-point Likert scale.
Results:
The response rate was 22.3% (539/2448). Support for reducing caregiver stress was the most frequently provided nursing support (mean Likert score: 2.41 for monthly prognosis and 2.42 for weekly prognosis). Psychological and educational support was mainly provided via non-face-to-face (telephone) (mean Likert score: 2.26 for monthly prognosis and 2.21 for weekly prognosis) and face-to-face methods (mean Likert score: 2.32 for monthly prognosis and 2.29 for weekly prognosis).
Conclusion:
Nursing support was provided through telephone support and face-to-face interactions and aimed at reducing caregiver stress among nurses and family caregivers of patients with terminal cancer in PCUs. In this study, the trends in nursing support were similar for patients with a prognosis of weeks or months.
Introduction
Family members of patients with terminal cancer experience stress associated with the deterioration of the patient’s condition,1–3 leading to the need for caregiver support. Due to the nature of terminal cancer, treatment of the underlying disease or pathology can be challenging, with palliative care often serving as the mainstay of support. Previous studies have reported an increased burden on family caregivers due to the progression of symptoms in patients with cancer 4 and the emergence of symptoms in the terminal stage, contributing to caregiver burden. 5 Therefore, support focusing on caregiver burden is important.
In palliative care, nursing support, also known as nursing interventions, is a prominent nonpharmacological intervention. Despite extensive research regarding family caregivers of patients with cancer has been conducted, no guidelines exist. Palliative care literature reviews have highlighted the importance of family support. 6 Moreover, previous studies have highlighted the importance of caregiver burden in palliative care and palliative care units (PCUs).7–9 However, research regarding nursing support for caregiver burden to family caregivers of terminally ill patients with cancer in PCUs is insufficient.
In clinical practice, the best available research evidence is integrated with family preferences, the practice knowledge of care environments, and care providers to deliver optimal health care. The provision of nursing support to family caregivers of terminally ill patients with cancer is primarily guided by the demands of family caregivers and the practice knowledge of care providers due to the limited availability of relevant research. A previous study explored the impact of nursing support on caregiving burden by conducting a comprehensive scoping review. 10 However, the specific support provided by nurses and the extent of the support remain unclear. While extensive evidence has been presented, revealing the discrepancy between the evidence and its use of nursing support is crucial for effectively translating the evidence into practice.
Study Purpose
This study explores the use of nursing support among nurses for caregiver burden in family caregivers of terminally ill patients with cancer in PCUs.
Materials and Methods
Participants and study design
Specialized palliative care in Japan includes palliative care wards and teams, 11 and this survey specifically targeted nurses working in specialized palliative care. In recruiting the participants, out of all 389 facilities in Japan that have filed notifications for PCUs (as of September 14, 2023), this study requested participation from 389 facilities and obtained cooperation from 162 facilities. This study involved nurses from 162 PCUs in Japan. Research explanation documents and participation request letters were mailed to the directors of nursing in PCUs, requesting the cooperation of their nurses. During October 2023–March 2024, the nurses completed an anonymous Internet survey.
Measurements
The Internet survey was conducted based on the results of a scoping review. The scoping review, conducted prior to this study, aimed to extract evidence regarding nursing support provided to family caregivers of terminally ill patients with cancer. 10 Seven components of nursing support and caregiver burden for family members were identified. 10 In addition, using the results of the Delphi method 12 as a reference, we conducted a preliminary survey with nine experienced PCU nurses to extract the different components of nursing support. The result of the survey identified nursing support components: psychological and educational support using mainly non-face-to-face methods (ICT; Information and Communication Technology), psychological and educational support mainly using non-face-to-face methods (telephone), face-to-face psychological and educational support, support for reducing caregiver stress, mindfulness to support both patients and caregivers, and support for both patients and caregivers. The use of these support methods for family caregivers of patients with cancer, with a prognosis of weeks or months, was assessed using a 5-point Likert scale (1: rarely, 2: seldom, 3: sometimes, 4: frequently/often, and 5: very frequently/very often). Demographic data, such as sex, age, years of nursing experience, years of PCU experience, educational background, and qualifications, were collected from the survey respondents.
Statistical analyses
The outcome was the frequency of the use of nursing support for caregivers of patients with a monthly and weekly prognosis. Demographic information and nursing support data are summarized using descriptive statistics. Mean scores and standard deviations were calculated for Likert scale responses to summarize both demographic information and nursing support data. All statistical analyses were performed using EZR, a component of R software (Saitama Medical Center, Jichi Medical University, Saitama, Japan) that includes statistical functions frequently used in biostatistics. 13
Research ethics
This research was approved by the Clinical Research Ethics Review Committee of Mie University Hospital (U2023-011). All participants provided consent to participate in the study.
Results
The survey response rate was 22.3% (539/2448). The respondents were predominately female (n = 511; 94.8%) with a mean age of 42.4 years (standard deviation [SD]: 9.8 years) (Table 1). Most respondents had attended nursing vocational school (including junior college) (n = 456; 84.6%). The mean number of years of nursing experience was 18.6 years (SD: 9.6 years), and the mean number of years of experience in the PCU was 4.8 years (SD: 4.3 years). The majority of participants with specialty certifications were palliative care nurses (n = 29; 5.3%).
Participant Characteristics (n = 539)
SD, standard deviation.
Support for reducing caregiver stress was the most frequently provided nursing support (mean Likert score: 2.41 for monthly prognosis and 2.42 for weekly prognosis) (Table 2). Psychological and educational support was mainly provided via non-face-to-face (telephone) (mean Likert score: 2.26 for monthly prognosis and 2.21 for weekly prognosis) and face-to-face methods (mean Likert score: 2.32 for monthly prognosis and 2.29 for weekly prognosis). Psychological and educational support was provided using mainly non-face-to-face methods (ICT) (mean Likert score: 1.96 for monthly prognosis and 1.93 for weekly prognosis), and support for both patients and caregivers (mean Likert score: 2.04 for monthly prognosis and 2.05 for weekly prognosis) was occasionally provided to family caregivers. Mindfulness was not frequently used to support both patients and caregivers (mean Likert score: 1.47 for monthly prognosis and 1.46 for weekly prognosis).
Nursing Support to Family Caregiver of Patients with Terminal Cancer (n = 539)
Discussion
This study investigated the use of nursing support among nurses for caregiver burden in family caregivers of patients with terminal cancer in PCUs. This study provided nursing telephone support and face-to-face interactions, with the aim of reducing caregiver stress. Family caregivers did not often receive support through mindfulness. This study’s results differ from those of a previous scoping review regarding caregiver burden. 10
In this study, support provided to family caregivers included telephone support, face-to-face interactions, and interventions aimed at reducing caregiver stress. A previous study found high applicability results for telephone support and interventions aimed at reducing caregiver stress. 12 Non-face-to-face methods and mindfulness were used less frequently, which is consistent with the results of a previous study. 12 These results may be due to the need for appropriate equipment and preparation for such support methods, reflecting the convenience highlighted in previous studies. 14 Meaningful support using non-face-to-face methods is dependent on the supporter’s experience. 15 The importance of mindfulness training has been reported in a previous study. 16 Support through mindfulness is beneficial; however, this knowledge may not be adequately disseminated at the practical level. Considering caregiver burden on caregivers and advancements in technology, we believe that ICT and telephone support can be further developed to support caregiver burden. Therefore, support mechanisms that are currently being underutilized must be investigated in the future to facilitate the use of nursing support. Additionally, we believe that it is imperative to consider research on the implementation of evidence-based nursing support.
In this study, the trends in nursing support were similar for patients with a prognosis of weeks or months. This is consistent with a previous study that reported no significant difference in the treatment and terminal phases of illnesses. 10 Caregivers often demand continuous support to acquire the necessary knowledge and skills for each stage of cancer care, 17 which may be because caregiver burdens do not directly affect the terminal phase.
Limitations
This study is not without limitations. First, the response rate was low and the respondents could have been more enthusiastic about using nursing support. Therefore, the generalizability of our results is limited. Studies using postal methods with individual nurses may be effective in improving response rates. Second, the use of nursing support may be generalized in other countries. Third, since this study was a self-administered survey, there could be self-reporting bias. Our findings may differ from the actual nursing support provided. Future research investigating the actual nursing support provided for caregiver burden is warranted.
Conclusions
The primary method of nursing support was telephone support and face-to-face interactions and aimed at reducing caregiver stress for family caregivers of patients with terminal cancer. The trends in nursing support were similar for patients with a prognosis of weeks or months. Further research is necessary to develop and implement nursing support strategies. Moreover, subsequent research should prioritize the development and evaluation of structured nursing support programs that integrate both ICT and telephone interactions to alleviate caregiver stress.
Footnotes
Acknowledgments
Authors’ Contributions
All authors (K.K., M.K., K.N., Y.K., M.M., Y.M., and J.K.) contributed to the preparation, drafting, and editing of this article. K.K. and M.K. conceived the idea for this research, followed by discussions with the other authors (K.N., Y.K., M.M., Y.M., and J.K.), which contributed to the final research idea. K.K. contributed to the preparation and editing of the article. All authors contributed to editing of the article and read and approved the final version of this article.
Data Availability Statement
The data are registered in the individual case data repository of the UMIN (University Hospital Medical Information Network) in Japan.
Ethics Approval
This research was approved by the Clinical Research Ethics Review Committee of Mie University Hospital (U2023-011). All participants provided written informed consent.
Author Disclosure Statement
The authors declare that they have no conflict of interests.
Funding Information
This study was supported by JSPS KAKENHI (Grant Number JP21H03236, JP23K21541). The funders had no role in the study design, data collection and analysis, decision to publish, or article preparation.