Educational Needs for Nurses to Support Dialogue between Terminally Ill Patients with Cancer and Their Families ()
1. Introduction
When dialogue is facilitated between terminally ill cancer patients and their families, the relationship is strengthened [1], and the satisfaction of bereaved families increases [2]. Dialogue between patients and their families at the end of life (EOL) is important to achieve satisfactory EOL care for both the family and the bereaved. In Japan, a characteristic of such dialogue is that patients and families often cope with the terminal phase by denying that death is imminent [3]. Additionally, there is an underlying culture where it is believed patients and families should understand each other without speaking [4]. Therefore, nurses play an important role in supporting and deepening the relationship between the patient and family as a single care unit while respecting the unique culture of dialogue in Japan.
Conversely, nurses supporting dialogue between terminally ill cancer patients and their families feel troubled by their lack of skills, such as hesitation to engage in difficult cases and uncertainty in evaluating dialogue support [5]. In clinical practice, nurses often only suggest that patients “talk to the family” without facilitating deeper dialogue. This may be because nurses are not sufficiently educated in specific support situations, like dialogue support, and thus do not recognize its importance in connecting patients and their families. A previous survey reported that less than 40% of bereaved families of cancer patients were able to express gratitude and share their true feelings [6]. Not being able to share or hear parting words is a frequent regret of bereaved families [7]. Qualitative studies have found that strong regret over not having a dialogue with a dying patient can delay the bereaved family’s ability to rebuild their lives after loss [8].
To provide an overview of EOL education, the End-of-Life Nursing Education Consortium (ELNEC) developed the ELNEC-Core educational program for nurses in the USA [9]. ELNEC-Japan (ELNEC-J), the Japanese version of this program, is a standard for EOL care that generalist nurses should master. The program emphasizes communication skills among medical staff and improving information-sharing skills but does not focus on facilitating dialogue between patients and their families. Reports indicate a lack of training among nurses in family systems approaches to cancer care, with a tendency to view family responses to illness through a deficit lens [10]. The novelty of the present study is its focus on dialogue support, treating the patient and family as a single care unit and connecting them through dialogue. Recently, many training sessions have focused on palliative care and cancer nursing. To develop educational intervention programs for improving specific competencies from a continuing education perspective, it’s essential to understand the existing educational needs of nurses. For oncology nurses, adequate education effectively reduces stress and improves self-efficacy and work performance [11] [12]. Educational programs that enhance competence contribute to quality care and the systematization of nursing interventions [13], which are expected to improve quality EOL family nursing care.
Given this background, the present study aimed to identify the educational needs of nurses involved in dialogue support for terminally ill cancer patients and their families. Dialogue support is defined as assistance that helps terminally ill cancer patients and their families exchange thoughts and feelings they wish to convey to each other, thereby maintaining and strengthening their relationship through mutual responses [14].
2. Methods
2.1. Subjects and Data Collection
Fifty facilities in six prefectures in the Tohoku region of Japan were randomly selected from hospitals with more than 100 beds, registered in the Welfare and Health Information Network Project of the Japan Health and Welfare Organization. The study aimed to understand the actual conditions in specific regions and to develop an educational program incorporating regional and cultural characteristics regarding dialogue and the culture of death. Therefore, it was limited to the Tohoku region. Representatives of the nursing departments received a request letter, a consent form, and a return envelope, asking if they would participate in the study and, if so, how many subjects would be included. In total, 33 facilities agreed to participate in the survey.
The nursing department representative was asked to select wards with opportunities to care for terminally ill cancer patients suitable for the study. As a result, 607 nurses with at least two years of practical nursing experience from the selected wards were chosen as study subjects. First-year nurses were excluded because their priority was to learn general nursing tasks and acclimate to the work environment. Managers at the head nurse level or above were also excluded from the study population.
Data were collected through an online survey. A research description with a QR code was distributed to the subjects from February to March 2025 by a representative of the nursing department. Participation was voluntary, and responses were requested within two weeks of receiving the documents.
2.2. Survey Items
2.2.1. Personal Attributes
We asked about age, gender, years of nursing practice, and years of experience in caring for terminally ill cancer patients.
2.2.2. Educational Needs Regarding Support for Dialogue between
Terminally Ill Patients with Cancer and Their Families
It has been reported that when terminally ill cancer patients and their families communicate their thoughts and feelings, and experience a deepening of the conversation, both parties’ quality of life improves, and the relationship is strengthened. Therefore, we asked, “What would you like to learn to improve your ability to support dialogue between terminally ill cancer patients and their families?” The subjects were asked to respond in an open-ended format.
2.3. Analysis Methods
For the analysis, we organized the free descriptions of educational needs regarding dialogue support into codes, sub-categories, and categories based on the similarity of semantic units.
2.4. Reliability
To ensure reliability, one researcher categorized the results while another verified the analysis. Supervision included both cancer and family nursing perspectives. We received guidance from researchers specializing in family health care and cancer nursing who were familiar with qualitative research. To ensure accuracy, we continually returned to the raw data throughout the analysis process to review and refine interpretations.
2.5. Ethical Considerations
This study was approved by the Ethics Committee of the Japanese Red Cross Akita College of Nursing/Japanese Red Cross Akita Junior College (No. 2024-014). We informed all subjects in writing that participation was voluntary, refusal would not result in any disadvantages, and results would be published in academic conferences and articles without identifying individuals, as the survey was anonymous. Participants were asked to check items to confirm their consent to participate in the online survey and their agreement with the research.
3. Results
3.1. Characteristics of the Subjects
Responses were obtained from 293 subjects (response rate: 48.3%). Of these, 270 subjects (valid response rate: 44.9%) answered the educational needs question without omission and were included in the analysis. The mean age of the subjects was 37.8 years. The average number of years of practical nursing experience was 15.2, and the average years of experience with terminally ill cancer patients was 8.7.
3.2. Learning Opportunities and Educational Needs to Support
Dialogue Regarding End-of-Life Family Nursing
Table 1 shows the content respondents wanted to learn to enhance their ability to support dialogue between terminally ill cancer patients and their families. Based on 300 statements, the data were classified into 35 codes, 12 subcategories, and six categories. The categories are described below using ≪ ≫, subcategories using < >, and codes using “ ”.
The subjects desired “knowledge provision leading to dialogue support practice” and “educational support through sharing specific cases.” Additionally, they wanted guidance on “how to handle difficult cases for nurses.” Regarding technology, they sought to understand “how to deepen understanding of the subject based on trust” and improve “communication skills.” They also wanted “measures to increase team commitment” to enhance organizational support.
Table 1. What nurses want to learn to improve their ability to support dialogue between terminally ill cancer patients and their families.
Categories |
Subcategories |
Codes (number of semantic units) |
≪Knowledge
provision leading to dialogue support practice≫ |
<Theory as a Foundation for Supporting Dialogue Between Terminally Ill Patients and Their Families> |
“Concepts of Palliative Care (8)” “Family Nursing Concepts (2)” |
<Physical and Mental Characteristics and Approaches for Supporting Terminally Ill Patients and Their Families> |
“Desirable Ways to Interact with Terminally Ill Patients and Their
Families (17)” “Grief Reactions of Terminally Ill Patients and Their Families (13)” “Needs of Families of Terminally Ill Patients for Medical Care Providers (4)” |
<Basic dialogue assistance methods> |
“Concept of Dialogue Support Between Terminally Ill Patients and Their Families (4)” “Role of Nurses in Supporting Dialogue (4)” “When to Start Dialogue Support (4)” “Need to Support Patient-Family Dialogue at the End of Life (5)” “Content of Patient-Family Dialogue (2)” “How to Support Dialogue Between the Patient and Family (2)” “Assessment Perspectives Necessary for Dialogue Support (13)” |
≪Educational
support through sharing specific cases≫ |
<Educational support through sharing specific cases> |
“Tips on the decision-making process and support by presenting specific cases (30)” “Experiencing involvement through role-playing (5)” “Clinical knowledge of experts (4)” |
≪How to deepen understanding of the subject based on trust≫ |
<Building trusting relationships with
patients and families> |
“How to build trusting relationships with patients and their families (14)” |
<Understanding and respecting patient and family values> |
“Approaches to understanding patient and family values (7)” “How to support nurses without imposing their values (3)” |
≪Communication skills≫ |
<Creating opportunities for dialogue
support> |
“How to know when to intervene in support situations (30)” “Specific ways to talk to the person when initiating a conversation (19)” “How to set up an environment or place where dialogue can take place (5)” |
<Communication linking dialogue
between terminally ill patients and their families> |
“Communication techniques needed in dialogue support (30)” “How to elicit patient and family narratives (10)” “How to listen to the story (4)” “How to facilitate situations where the patient and family are together (3)” |
≪How to handle difficult cases for nurses≫ |
<Skills in dealing with family
relationships> |
“How to handle differences in values between the patient and family (13)” “How to engage with patients and families in discordant relationships (5)” “How to engage with patients and families when they are confused about relating to each other (2)” |
<Emotional coping skills> |
“How to respond to topics related to death (11)” “How to relate to grieving or angry patients and family members (10)” |
<Skills for managing the dying process> |
“How to interact with a patient whose general condition has deteriorated and who finds it difficult to communicate verbally (4)” “How to respond after delivering severe news (3)” |
≪Measures to
increase team
commitment≫ |
<Measures to increase team
commitment> |
“Raising awareness of connection among staff (6)” “Conflict management when allocating time and resources is difficult (4)” “Information to be recorded to support dialogue (1)” |
Table 2 shows the most common items that respondents wanted to learn to improve their ability to support dialogue between terminally ill cancer patients and their families (items correspond to codes). The most common items were “tips on the decision-making process and support by presenting specific cases,” “communication techniques necessary for dialogue support,” and “how to determine when to intervene in support situations.”
Table 2. Most desired items to be learned.
Rank |
Item (number of codes) |
1 |
“Tips on the decision-making process and support by presenting specific cases” (30) “Communication techniques needed in dialogue support” (30) “How to know when to intervene in support situations” (30) |
2 |
“Specific ways to talk to the person when initiating a conversation” (19) |
3 |
“Desirable ways to interact with terminally ill patients and their families” (17) |
4 |
“How to build trusting relationships with patients and their families” (14) |
5 |
“Grief reactions of terminally ill patients and their families” (13) “Assessment perspectives necessary for dialogue support” (13) “How to deal with differences in values between the patient and family” (13) |
4. Discussion
4.1. Characteristics of Educational Needs for Supporting Dialogue
between Terminally Ill Cancer Patients and Their Families
The nurses expressed their desire for ≪knowledge provision leading to dialogue support practice≫. Both <Theory as a foundation for supporting dialogue between terminally ill patients and their families> and <Basic dialogue assistance methods> were considered important learning content, as they are believed to lead to an understanding of the significance of dialogue support.
In the present study on ≪educational support through sharing specific cases≫ it became clear that many nurses wanted to learn about the decision-making process and tips for support. The end-of-life (EOL) dialogue support discussed in this study is challenging to quantify, as it lacks a clear goal such as “achieving this level of care.” Nurses probably do not want to hear, “You have taken very good care of me. I appreciate it” from patients, families, or bereaved family members. They may feel they have provided good care only when receiving feedback like, “You were very good to me, and I appreciate it.” Nurses felt they were not providing high-quality dialogue support and care to dying patients and their families because they wanted to do more for them. Consequently, their lack of experience in providing dialogue support with conviction was identified as an area they wanted to learn about.
In the present study, the category of “how to deepen understanding of the subject based on trust” was extracted, suggesting that nurses have difficulty building trusting relationships with patients and their families. Failure to establish trust early, taking sides in family conflicts, and giving advice prematurely were cited as common mistakes that nurses may make unknowingly [15]. Although nurses have described their relationships with families as rewarding, dealing with conflicting family dynamics can generate considerable stress [16]. Therefore, this study likely revealed the need for education on building trusting relationships, which is important as a precursor to direct intervention in support of dialogue.
With regard to technical aspects, a need for ≪communication skills≫ was found. Most importantly, this study included elements such as “How to facilitate in situations where the patient and family are together,” “How to elicit patient and family narratives,” and “How to listen to the story” to support the patient and family during the terminal stage. The study suggests the value of staying with the patient and family in their current situation rather than merely facilitating communication among family members. Instead of focusing solely on acquiring communication skills, there is a need for education that fosters a deeper understanding of the subject and encourages natural dialogue while enhancing the ability to stand with the patient and family.
The category ≪how to handle difficult cases for nurses≫ includes <Skills in dealing with family relationships>, <Emotional coping skills>, and <Skills for managing the dying process>. When nurses face unclear end-of-life situations, they must simultaneously understand conflicting emotions from both the patient and the family. To enhance nurses’ ability to handle events they find unclear, an empathetic attitude and tolerance for ideas and values different from their own are considered important skills and educational content.
In ≪measures to increase team commitment≫, the need for support continuity, such as raising awareness of connections among staff, was revealed. Conversely, from “conflict management when it is difficult to allocate time and resources,” it can be inferred that support is provided despite conflicts. Therefore, it is necessary to strengthen collaboration among multiple professions based on cooperation and trust, rather than having nurses alone support dialogue between patients and their families. Educational content that contributes to sentiment formation is also needed so that, in environments where various opinions can be expressed by the team, each profession’s viewpoints can be discussed without being restricted by a predetermined framework. This will transform the recognition and attitude of respecting expertise and ensure seamless involvement.
4.2. Top Items That Respondents Wanted to Learn More About
The most common topic respondents wanted to learn was “Tips on the decision-making process and support by presenting specific cases.” Analyzing cases is argued to be effective in training a thought process without correct answers, bridging the gap between nursing practice and theory, which cannot be acquired through traditional teaching methods [17] [18]. In end-of-life dialogue support, the ability to practice with flexibility according to the situation is vital. Thus, educational interventions that help nurses become aware of diverse values and cultivate their own thinking are necessary. In addition to case analyses, role-playing as patients, family members, and nurses is expected to help nurses gain awareness and understanding of values they do not possess, providing opportunities to learn lessons applicable to clinical practice. This is also important for understanding diverse families.
In the present study, there was a need to learn direct intervention skills such as “Communication techniques needed in dialogue support,” “How to know when to intervene in support situations,” and “Specific ways to talk to the person when initiating a conversation.” Nurses reported difficulties with communication techniques required for dialogue support and the timing of interventions. Previous studies have shown that nurses recognize existing communication barriers with oncology patients and their families [10] and acknowledge their shortcomings in effective active listening and empathy [19] [20]. Other studies have confirmed that empathy is essential in oncology patient care and emphasized the need to improve communication skills through education and continuing nursing education [21]. Therefore, educational programs should focus on introductory situations of situational dialogue support where nurses feel unskilled, structuring them to help nurses learn communication skills, including empathy.
Next were “Desirable ways to interact with terminally ill patients and their families” and “Grief reactions of terminally ill patients and their families” (i.e., physical and mental characteristics and approaches for supporting terminally ill patients and their families). It is understandable that there was a high demand for basic knowledge about the physical and mental reactions of terminally ill patients and their families and desirable ways to interact with them, as the nurses have faced and provided support to grieving patients and their families while being perplexed. According to a previous study [22] that identified the status of dialogue support practices and related factors, learning about care for loss and grief was found to be essential for understanding the subject and recognizing the need for a team approach. The instrumental content of care for loss and grief identified in the present study is considered educational content that provides a foundation for dialogue support.
The ways nurses perceive things and conduct assessments significantly impact dialogue support. Avoiding preconceptions, “Assessment perspectives necessary for dialogue support” represents important educational content. Educational interventions should deepen awareness of perceiving phenomena from multiple perspectives and cultivate assessment skills that enable nurses to view phenomena positively, focusing on the family’s strengths and capabilities. This approach helps avoid one-sided labeling by nurses.
Nurses feel stuck when trying to facilitate dialogue between terminally ill patients and their families. In the section “How to deal with differences in values between the patient and family,” it is evident that nurses involved in end-of-life support understand their goals, which is why they feel pain. The ability to endure this suffering is considered a necessary skill in nursing because rushing to find a solution can inhibit the nurse’s empathy for the patient and family. Therefore, it is thought that nurses need education to endure the uncertainty of differing values between patients and families and to understand the importance of accepting these differences, not avoiding them, but rather, addressing and resolving them.
4.3. Implications for the Construction of Educational Programs
That Contribute to Improving Dialogue Support Practices
Keats (1818) [23] described negative capability as follows: “...I mean Negative Capability, that is, when a man is capable of being in uncertainties, mysteries, doubts, without any irritable reaching after fact and reason.” This term now refers to abilities that people possess. The results of the present study suggest that educational needs for dialogue support are based on the idea of negative capability, which is the ability to endure unclear situations. There is value in staying with the patient and family in their current situation rather than merely supporting communication between family members. According to Hancock et al. [24], low tolerance for uncertainty leads to high stress levels. Therefore, along with acquiring knowledge and skills in dialogue support, it is important for nursing professionals to develop the ability to endure the suffering and distress of others in difficult situations without rushing to find answers or solutions or being in a state of uncertainty.
These findings suggest that an ideal educational program should present and share specific cases, link content to knowledge and clinical understanding, and incorporate flexible values through role-playing and other experiences. The findings also highlight the importance of fostering the ability to engage with patients and their families with tolerance and empathy, rather than focusing solely on providing one-way dialogue support or improving only technical skills.
5. Limitations
This study has some limitations. First, to our knowledge, this is the first report to examine the educational needs of nurses in hospitals in the Tohoku region of Japan regarding support for dialogue between terminally ill cancer patients and their families. However, the representativeness of the sample in terms of this specific region is considered a limitation. Nonetheless, the findings provide an important resource for developing community-based educational programs. The findings also offer direction for educational content that more effectively supports dialogue between terminally ill cancer patients and their families. Further development of educational programs reflecting the specific skills and knowledge required by nurses could lead to the provision of high-quality care.
6. Conclusion
The following educational topics were identified as desired by nurses to support dialogue between terminally ill cancer patients and their families: ≪knowledge provision leading to dialogue support practice≫, ≪educational support through sharing specific cases≫, ≪how to deepen understanding of the subject based on trust≫, ≪communication skills≫, ≪how to handle difficult cases for nurses≫, and ≪measures to increase team commitment≫.
Nurses have educational needs that focus not only on acquiring communication skills but also on enhancing their ability to remain present with patients and their families. They should develop a deep understanding of the subject and introduce natural dialogue.
Funding
This study was supported by JSPS KAKENHI Grant Number JP24K20332.