Abstract
Objective
To develop a scientifically sound and feasible death education program tailored to the needs of family caregivers of patients with advanced cancer, aimed at guiding clinical practice and enhancing the effectiveness of death education.
Background
Family caregivers serve as crucial social support for patients with advanced cancer. Beyond bearing heavy caregiving responsibilities, they must also manage negative emotions arising from the patients’ advanced illness or death. Family caregivers’ levels of death anxiety may even exceed those of the advanced cancer patients themselves. Death education can transform individuals’ attitudes toward death, alleviate death anxiety, reduce fear of death, and promote awareness and understanding of life. Currently, death education for family caregivers of patients advanced cancer receives limited attention, and comprehensive death education programs tailored to this group are lacking.
Methods
An initial draft of a death education program, specifically tailored to address the needs of family caregivers providing care for patients with advanced cancer, was systematically developed through a quantitative survey, semi-structured interviews and literature review. The program was then refined through two rounds of Delphi expert consultation and pilot testing.
Results
The two rounds of Delphi expert surveys distributed 18 and 15 questionnaires, respectively. The valid response rates were 83% and 100%, with expert authority coefficients of 0.858 and 0.870, and Kendall’s coefficient of concordance of 0.234 and 0.272 (P < 0.001). After Delphi expert consultation and pilot testing, the final program comprised 5 primary items, 17 secondary items, and 54 tertiary items. In the pilot test, the recruitment rate was 83% and the completion rate was 70%, providing preliminary evidence of the program’s acceptability and feasibility.
Conclusion
By systematically integrating quantitative survey findings, qualitative interview findings, literature review evidence, Delphi expert consultation, and pilot testing, this study developed a death education program specifically designed to meet the needs of family caregivers of patients with advanced cancer. The program development process was scientifically sound and reliable, and the program content was comprehensive and targeted. The pilot test provided preliminary evidence of acceptability and feasibility; however, further validation in larger samples and real-world clinical settings is needed.
Supplementary Information
The online version contains supplementary material available at https://doi.org/10.1186/s12904-026-02260-4.
Keywords: Delphi method, Advanced cancer, Family caregivers, Death education, Program development
Introduction
According to statistics from the International Agency for Research on Cancer (IARC), global cancer incidence exceeded 19.29 million new cases in 2022, with 9.97 million deaths [1]. Advances in cancer diagnosis and treatment technologies, coupled with the widespread adoption of early screening, have significantly improved patient survival outcomes [2]. However, patients with advanced cancer commonly face prolonged disease progression, multi-system complications, and declining physiological function, with the burden of daily care often falling on family caregivers [3]. Previous studies have reported that cancer not only impacts patients’ quality of life but also adversely affects the physical and mental health of their family caregivers [4].
Family caregivers (FCs) [5] are unpaid family members or close friends who provide daily care to patients and play a crucial social support role for advanced cancer patients. Beyond the burdens of caregiving responsibilities and social role transitions [6], FCs must confront the impending death of their loved ones, frequently experiencing negative emotions such as death anxiety, fear of death, and concerns about the future [7]. Research indicates that family caregivers experience higher levels of death anxiety than advanced cancer patients themselves [8]. During the patients’ advanced phase, open communication about death can reduce the risk of negative emotions such as grief and guilt among family caregivers [9].
Death education serves both medical practice and society. It encompasses educational activities exploring the nature of death, end-of-life care, and grief phenomena, aiming to help individuals scientifically confront death and explore life’s meaning [10]. Death education has been proven effective in helping family caregivers reduce negative emotions, transform attitudes toward death, and enhance death cognition [11]. One study indicates that family caregivers of cancer patients lacking death education tend to experience higher levels of death anxiety [12].
While research on death education is growing, studies primarily focus on healthcare professionals and cancer patients [13, 14]. Information specifically addressing death education for family caregivers remains scarce [15], and systematic intervention programs are currently lacking. Furthermore, death education involves individual perceptions and attitudes toward death [16], with needs varying across different groups. Therefore, this study aims to develop a death education program tailored to the needs of family caregivers of patients with advanced cancer, with the goal of providing guidance for death education practices among family caregivers.
Research methods
Developing a preliminary draft of death education program based on the needs of family caregivers for patients with advanced cancer
Quantitative research
A quantitative survey was first conducted to identify the current level of death education needs among family caregivers of patients with advanced cancer and to explore associated factors. Convenience sampling was used to recruit family caregivers of patients with advanced cancer from a tertiary Class A hospital in Guizhou Province between September 1 and December 31, 2024. Eligible family caregivers were approached by the researchers, informed about the purpose and procedures of the study, and invited to participate voluntarily. Written informed consent was obtained before data collection.
The survey tools included the general demographic questionnaires, the Anticipatory Gried Scale [17], the Chinese version of the Death Attitude Profile Scale [18], and the revised Death Education Needs Questionnaire. (Supplementary Materials 1). Inclusion criteria for family caregivers: (1) Caregivers of patients with pathologically confirmed malignant tumors at TNM stage III-IV; (2) Total caregiving duration ≥ 3 months with daily caregiving ≥ 4 h [5]; (3) Age ≥ 18 years; (4) No language communication barriers, capable of communication; (5) Informed consent, voluntary participation in this study, and signed informed consent form. Exclusion criteria: (1) Patients with concurrent severe comorbidities; (2) History of mental illness, cognitive impairment, or non-cooperative individuals.
Univariate analysis, correlation analysis, and multiple stepwise linear regression analysis were used to identify factors associated with death education needs. The quantitative findings were used to identify priority content areas for the program, particularly dimensions with higher need scores and factors significantly associated with death education needs. This study was approved by the Ethics Committee of the Affiliated Hospital of Zunyi Medical University (Ethics Approval Number: KLLY-2024-048).
Semi-structured interviews
After the quantitative survey, semi-structured interviews were conducted to further explore family caregivers’ specific experiences, difficulties, emotional concerns, and preferences regarding death education. A semi-structured interview guide was developed in accordance with the research objectives. (Supplementary Materials 2).
Using purposive sampling and guided by information saturation, family caregivers of patients with advanced cancer were recruited from a tertiary Grade A hospital in Zunyi City, Guizhou Province, between January 1 and March 31, 2025. The inclusion and exclusion criteria were consistent with those used in the quantitative survey. Eligible caregivers were invited to participate voluntarily, and informed consent was obtained before the interviews.
Data were analyzed using Colaizzi’s seven-step method [19]. Four themes and 15 subthemes were identified: (1) End-of-Life Information and Caregiving Skills (disease-related information, end-of-life care techniques, end-of-life decision dilemmas, cognitive biases regarding end-of-life services); (2) Communication and Expression Regarding Death (difficulty delivering bad news, active avoidance of death topics, defensive expressions about death, latent communication willingness); (3) Psychological and Emotional Aspects Related to Death (anticipatory grief, fear of disease progression, anxiety about the future, guilt); (4) Preferences for Specific Implementation of Death Education (practical educational content, diverse delivery formats, respect for individual differences).
Literature review
A literature review was conducted as a supplementary evidence source to enrich the specific educational content, intervention strategies, and delivery formats of the program. Using a combination of subject headings and keywords, we searched English-language databases including PubMed, Web of Science, Cochrane Library, Embase, and CINAHL, as well as Chinese databases including CNKI, Wanfang Database, VIP Database, and China Biomedical Literature Service System. The search period spanned from database inception to August 20, 2024, with language restrictions to Chinese and English.
Chinese search terms included: “tumor/cancer/malignant tumor,” “terminal/end-of-life/dying,” “family caregiver/relative/spouse,” and “death education/life education/end-of-life education/dying education.” English search terms: “neoplasms/advanced cancer/end stage cancer/malignant tumor,” “caregivers/family caregiver/informal caregiver/spouse caregiver,” “death education/life education/end of life education/dying education/death talk/life talk.”
Inclusion criteria were as follow: (1) Family caregivers of advanced cancer patients as research subjects; (2) Application of death education or related interventions with detailed descriptions of intervention content; and (3) Original research types, including randomized controlled trials, quasi-experimental studies, cohort studies, cross-sectional studies, etc. Exclusion criteria were as follows: (1) Reviews, letters, conference abstracts, etc.; (2) Incomplete content or inaccessible full texts; and (3) Duplicate publications with identical content. The entire literature search and screening process was independently conducted by Z.R.Y. and F.S.J. Disagreements were resolved through third-party adjudication.
Sixteen studies were ultimately included. Analysis and synthesis of the literature revealed intervention themes including emotional relief, death preparation, self-care, death-related knowledge, hospice care, and life meaning reflection. These findings were used to supplement the specific activities, educational materials, and delivery approaches within each program module.
Development and integration process of the preliminary program
The preliminary death education program was developed by integrating evidence from the quantitative survey, qualitative interviews, and literature review. The quantitative survey first identified the level of death education needs among family caregivers of patients with advanced cancer and explored associated factors. The qualitative interviews were then used to further explore caregivers lived experiences, practical difficulties, emotional concerns, and preferences regarding death education. The literature review served as a supplementary evidence source to enrich the specific educational content, intervention activities, and delivery strategies of the program.
In developing the preliminary program, the qualitative findings served as the main framework because they directly reflected caregivers’ actual needs and lived experiences. The quantitative findings were used to identify priority content areas, particularly dimensions with higher death education needs and factors associated with death education needs, such as anticipatory grief and death attitude. The literature review was then used to supplement concrete educational activities, educational materials, and delivery approaches within each module.
The researcher first integrated the findings from these three evidence sources and drafted the preliminary program. The research team then conducted two rounds of group discussions to evaluate whether the program dimensions comprehensively reflected caregivers’ needs, whether the content under each dimension was consistent with the corresponding theme, and whether the intervention content was feasible in clinical practice.
The preliminary draft program included six core dimensions: End-of-life knowledge and caregiving skills, Death awareness and meaning reconstruction, Death topic communication and expression, Aftercare planning and funeral customs, Rights protection and ethical/legal considerations, Anticipatory grief management and bereavement counseling Table 1.
Table 1.
Integration of formative evidence into the death education program
| Evidence source | Main findings | How the findings informed the program |
|---|---|---|
| Quantitative survey | Family caregivers reported death education needs across multiple domains, with relatively higher needs in end-of-life care, attitudes toward death across different age groups, funeral-related issues, concepts of death and death education, grief care, and death-related ethical and legal issues. Death education needs were also associated with anticipatory grief and death attitude. | These findings supported the inclusion of modules on end-of-life knowledge and caregiving skills, death awareness, life meaning reflection, advance care planning, post-death arrangements, ethical/legal considerations, and anticipatory grief management. |
| Qualitative interviews: end-of-life information and caregiving skills | Caregivers wanted disease-related information, practical end-of-life care skills, and support for end-of-life decision-making. | This theme informed the module on end-of-life knowledge and caregiving skills, including symptom management, nutritional care, psychological support, caregiver self-care, and assistance with end-of-life decisions. |
| Qualitative interviews: communication and expression regarding death | Caregivers reported difficulty delivering bad news, avoidance of death topics, defensive expressions about death, and latent willingness to communicate. | This theme informed the module on discussing and expressing death-related topics, including death conversations with patients and family members, role-play demonstrations, communication principles, and support for patient wishes. |
| Qualitative interviews: psychological and emotional aspects related to death | Caregivers described anticipatory grief, fear of disease progression, anxiety about the future, and guilt. | These findings informed the modules on death awareness, meaning of life, emotional support, mindfulness practice, and anticipatory grief management. |
| Qualitative interviews: preferences for implementation | Caregivers preferred practical educational content, diverse delivery formats, and respect for individual differences. | These findings informed the use of individual guidance, group lectures, workshops, online/offline options, videos, templates, picture books, role-play, and mindfulness resources. |
| Literature review | Previous death education and related interventions included emotional relief, death preparation, self-care, death-related knowledge, hospice care, and reflection on life meaning. | The literature review supplemented specific intervention activities and educational materials, such as relaxation exercises, life review activities, advance directive resources, hospice-related information, and meaning-centered activities. |
| Research group discussions | The research team assessed the thematic relevance, clinical feasibility, and caregiver acceptability of the draft program. | The preliminary program structure and module content were refined before the Delphi expert consultation. |
Educational principles and delivery design of the program
Based on the integrated formative evidence and research group discussions, the preliminary program was developed according to the principles of caregiver-centeredness, practical usefulness, emotional acceptability, gradual exposure to sensitive death-related topics, flexibility, and clinical feasibility. The program was designed to start with practical and relatively acceptable content and then gradually move toward more emotionally sensitive topics.
The preliminary program began with end-of-life knowledge and caregiving skills because these topics were closely related to caregivers’ immediate responsibilities and were considered more acceptable to caregivers. This module was intended to build trust and engagement. Death-related communication was placed after the caregiving skills module because discussion of death requires a certain level of readiness and acceptance. Death awareness, meaning of life, advance care planning, and post-death arrangements were introduced after caregivers had been exposed to death communication and meaning-related content. Anticipatory grief management was placed toward the end of the program to help caregivers identify and cope with possible future emotional distress.
The preliminary program was designed to include 6–8 sessions over approximately 5–6 weeks. The duration of each session ranged from approximately 10 to 50 min. Session length was preliminarily determined according to the sensitivity and complexity of the content, caregivers’ expected attention span and availability, the need to reduce participant burden, and feasibility in the clinical setting. Shorter sessions, such as wish-list guidance or death-related concept introduction, were designed for relatively focused or emotionally sensitive content, whereas longer sessions, such as end-of-life caregiving skills and death perception exploration, were planned for content requiring explanation, demonstration, discussion, or practice. To improve adherence, the program was designed with multiple shorter sessions rather than fewer long sessions.
Most sessions were planned as individual guidance, while some components could be delivered through group lectures, workshops, peer sharing, or online formats depending on caregivers’ preferences and clinical feasibility. The preliminary program was intended to be delivered by the researcher and trained team members, with support from clinical nurses when needed.
Educational materials included selected existing publicly available videos, picture books, printed templates, wish-list cards, mindfulness audio/video resources, written information sheets, and resource links. These materials were selected or compiled according to the content of each module and caregivers’ acceptability.
Finalizing the death education program based on the needs of family caregivers for patients with advanced cancer
Delphi expert survey method
Development of the expert survey questionnaire
The expert survey questionnaire consists of three Sect. (1) Instructions for Completing the Expert Survey Questionnaire: A concise introduction to the research background, objectives, and completion guidelines for the questionnaire on the death education program tailored to the needs of family caregivers for patients with advanced cancer; (2) Expert Basic Information Survey: Collects expert background details, familiarity with the topic, and basis for judgment; (3) Program Design Expert Opinion Form: Includes sections for item levels, scoring, and remarks. A 5-point scale is used to rate each item’s importance from “Not Important” to “Very Important,” assigning scores from 1 to 5.
Expert selection and consultation
Purposeful sampling was employed to invite experts in oncology nursing, palliative care, clinical medicine, clinical nursing, nursing administration, and nursing education for consultation via letter from July to October 2025. Expert selection criteria: (1) At least 10 years of professional experience in their field with extensive expertise; (2) Bachelor’s degree or higher; (3) Associate senior or higher professional title; (4) Ability to complete the expert consultation questionnaire within the specified timeframe.
Implementation of expert consultation
This study conducted two rounds of consultation, both utilizing email and WeChat for questionnaire distribution and collection. The first round employed open-ended questions to gather expert opinions. Upon full return of the questionnaires, the collected expert opinions and revisions were categorized, organized, and synthesized. This structured feedback was then provided to each expert for re-evaluation, aiming to achieve a consistent expert consensus on all items. Each consultation round lasted two weeks. To prevent memory bias among experts, the interval between rounds was more than two weeks. Items were retained if their importance score mean exceeded 4.0 and their coefficient of variation (CV) was < 0.25. Consultation ceased when expert opinions converged.
Statistical methods
Data entry and verification were performed by two operators using Excel. Statistical analysis was conducted with SPSS 29.0 software. Count data are presented as frequency and proportion (%). Measurement data are expressed as mean ± standard deviation. Expert engagement was measured by the effective response rate. Expert authority was assessed using the expert authority coefficient (Cr). The degree of expert opinion coordination was evaluated using Kendall’s W and the coefficient of variation (CV). A P-value < 0.05 was considered statistically significant.
Pilot study method
Study participants
A pilot test was conducted to assess the acceptability, comprehensibility, and preliminary feasibility of the death education program among family caregivers of patients with advanced cancer. Convenience sampling was employed to recruit family caregivers of advanced cancer patients from the Oncology Department of a tertiary-level Class A hospital in Zunyi City between December 1 and 30, 2025. Inclusion and exclusion criteria were identical to those used in the quantitative research component.
Study design
After undergoing relevant training, the researcher and four team members implemented the program with the participating caregivers. During the pilot phase, the program was delivered individually rather than as a group intervention. All five modules were covered, but some components were implemented in a shortened format because the purpose of the pilot test was to refine the program rather than to evaluate intervention effectiveness.
Feasibility was assessed using recruitment rate, completion rate, module completion, participant withdrawal, and qualitative feedback. The recruitment rate was calculated as the proportion of eligible caregivers who agreed to participate. The completion rate was calculated as the proportion of participating caregivers who completed the pilot test [20] and post-intervention feedback [21]. After the pilot test, brief face-to-face feedback interviews were conducted with family caregivers to collect their experiences and suggestions regarding the program. Interview questions included: “How did you feel about this intervention?” “What benefits did you gain from this program?” and “What aspects of this intervention do you think need improvement?”
Results
Quantitative survey results
A total of 208 family caregivers of patients with advanced cancer completed the quantitative survey. The total death education needs score was 138.19 ± 17.99, indicating a moderate level of need. The three dimensions with the highest mean scores were death and end-of-life care, attitudes toward death across different age groups, and funeral-related issues.
Pearson correlation analysis revealed that the death education needs score of family caregivers for advanced cancer patients was positively correlated with anticipatory grief (r = 0.288, P < 0.001) and negatively correlated with attitudes toward death (r=-0.165, P = 0.017).
Multiple stepwise linear regression was performed to identify factors associated with death education needs. Variables that were significant in univariate analyses, together with anticipatory grief and death attitude, were entered into the model. The final model showed no evidence of autocorrelation or multicollinearity, with a Durbin–Watson value of 2.121, tolerance values greater than 0.1, and variance inflation factor values less than 5. The model was statistically significant (F = 5.798, P < 0.001), with an R² of 0.385 and an adjusted R² of 0.327. Anticipatory grief, death attitude, ethnicity, monthly income, relationship with the patient, patient disease stage, patient medical insurance type, and duration of illness collectively explained 32.7% of the variance in death education needs Table 2.
Table 2.
Multiple stepwise linear regression analysis of factors associated with death education needs among family caregivers of patients with advanced cancer (n = 208)
| Variable | Category | B | SE | Standardized β | t | P |
|---|---|---|---|---|---|---|
| Constant | 104.928 | 21.547 | 4.870 | < 0.001 | ||
| Anticipatory grief | 0.504 | 0.134 | 0.230 | 3.760 | < 0.001 | |
| Death attitude | -0.264 | 0.141 | -0.115 | -1.878 | 0.062 | |
| Ethnicity | Minority ethnic group | -8.450 | 3.697 | -0.142 | -2.286 | 0.023 |
| Han ethnicity | Ref | — | — | — | — | |
| Monthly income | > 6000 yuan | 5.981 | 2.683 | 0.131 | 2.230 | 0.027 |
| < 2000 yuan | Ref | — | — | — | — | |
| Relationship with patient | Parent | -7.526 | 3.402 | -0.127 | -2.212 | 0.028 |
| Child | 7.866 | 2.617 | 0.183 | 3.006 | 0.003 | |
| Spouse | Ref | — | — | — | — | |
| Patient disease stage | Stage IV | 4.568 | 1.785 | 0.148 | 2.559 | 0.011 |
| Stage III | Ref | — | — | — | — | |
| Patient medical insurance type | Resident medical insurance | -8.333 | 2.015 | -0.237 | -4.135 | < 0.001 |
| Employee medical insurance | Ref | — | — | — | — | |
| Duration of illness | 6–12 months | 5.336 | 2.228 | 0.170 | 2.395 | 0.018 |
| 13–24 months | 10.294 | 2.465 | 0.298 | 4.176 | < 0.001 | |
| > 24 months | 10.969 | 3.569 | 0.196 | 3.073 | 0.002 | |
| < 6 months | Ref | — | — | — | — |
Death attitude was retained in the final model because the stepwise removal criterion was set at α = 0.10
Delphi expert consultation results
General information of consulting experts
A total of 15 experts participated in two rounds of expert consultation. These experts were from general hospitals and cancer hospitals in Shaanxi, Guizhou, Shandong, Sichuan, and other regions. The average age of the experts was (49.33 ± 8.56) years, with an average work experience of (27.20 ± 11.32) years. Specific general information is shown in Table 3.
Table 3.
Expert general information form
| Characteristic | Number | Composition Ratio(%) |
|---|---|---|
| Gender | ||
| Male | 6 | 40 |
| Female | 9 | 60 |
| Education Level | ||
| Bachelor | 4 | 27 |
| Master | 6 | 40 |
| Doctorate | 5 | 33 |
| Years of Experience (Years) | ||
| 10–20 | 3 | 20 |
| 21–30 | 5 | 33 |
| > 30 | 7 | 47 |
| Professional Title | ||
| Associate Professor | 4 | 27 |
| Professor | 11 | 73 |
| Field of Work (Multiple Choices) | ||
| Palliative Care | 6 | 40 |
| Oncology Nursing | 8 | 53 |
| Clinical Nursing | 9 | 60 |
| Nursing Administration | 4 | 27 |
| Clinical Medicine | 1 | 7 |
| Nursing Education | 4 | 27 |
| Critical Care Nursing | 2 | 13 |
Expert engagement
In the first round of expert consultation, 18 questionnaires were distributed, yielding 15 valid responses, for an 83% response rate. The second round distributed 15 questionnaires, all of which were returned, achieving a 100% valid response rate. A total of 13 experts (87%) provided feedback in the first round, while 4 experts (27%) contributed in the second round.
Expert authority
Expert authority (Cr) is determined by the basis for judgment (Ca) and the expert’s level of understanding (Cs) regarding the indicators in the questionnaire items. The Cr calculation formula is: Cr = (Ca + Cs)/2. In this study, the basis for judgment (Ca) for the two rounds of expert consultations was 0.89 and 0.90, respectively, while the level of understanding (Cs) of the items was 0.826 and 0.84, respectively. The authority coefficients for the two rounds of expert consultations were 0.858 and 0.87, respectively.
Degree of expert opinion coordination
The coefficients of variation for the two rounds of expert consultation were 0.097–0.342 and 0.097–0.306, respectively, indicating that expert opinions on the intervention plan converged after both rounds. The Kendall’s coefficient of concordance for the two rounds of consultation was 0.234 and 0.272, respectively, both with P < 0.001, indicating statistical significance. This demonstrates a high degree of coordination among experts regarding the intervention plan, as shown in Table 4.
Table 4.
Expert agreement coefficients
| Rounds of Consultation | Number of Indicators | Kendall’s Harmonic Coefficient | Chi-Square Test | P-Value |
|---|---|---|---|---|
| First Round | 72 | 0.234 | 249.077 | < 0.001 |
| Second Round | 55 | 0.272 | 224.567 | < 0.001 |
Results of expert letter inquiry scheme revisions
Following the first round of expert letter inquiries, the scheme was revised based on expert feedback and entry screening criteria. (1) Level 1 entries: 1 deleted, 3 modified; (2) Level 2 entries: 6 deleted, 6 modified, 1 added; (3) Level 3 items: 14 deleted, 13 modified, 11 added. Following the second round of expert consultation, 2 Level 2 items and 5 Level 3 items were modified, with no net change in total item count. The final proposal comprises 5 Level 1 items, 17 Level 2 items, and 55 Level 3 items, as shown in Table 5.
Table 5.
Results of expert correspondence
| Content | Importance Score (± s, points) |
CV |
|---|---|---|
| I End-of-Life Knowledge and Care Skills. | 4.60 ± 0.50 | 0.10 |
| I-1 Symptom Management for advanced cancer patients. | 3.87 ± 0.52 | 0.13 |
| I-1-1 Explain primary symptoms in advanced cancer patients (pain, fatigue, gastrointestinal symptoms, etc.) and common manifestations during the dying process (dyspnea, altered consciousness, circulatory failure, etc.), along with methods for identification. | 4.67 ± 0.49 | 0.10 |
| I-1-2 Demonstrate end-of-life care techniques: pain relief (gentle massage, distraction), pressure ulcer prevention (turning demonstration, skin care), dyspnea management (elevating head of bed, back-tapping demonstration), elimination care (urinal device use, skin care). | 4.47 ± 0.52 | 0.12 |
| I-1-3 Medication education (common chemotherapeutic agents, analgesics, etc.) and usage precautions. | 4.53 ± 0.52 | 0.11 |
| I-1-4 Inviting caregivers to share their caregiving experiences and feelings. | 3.53 ± 0.74 | 0.21 |
| I-2 Nutritional care for advanced cancer patients. | 3.67 ± 0.62 | 0.17 |
| I-2-1Explain common nutritional assessment indicators: weight, BMI, albumin | 4.47 ± 0.83 | 0.19 |
| I-2-2 Explain common nutritional status assessment methods: skinfold thickness measurement, muscle wasting assessment, edema severity assessment. | 4.33 ± 0.72 | 0.17 |
| I-2-3 Explain common dietary issues (loss of appetite, nausea/vomiting, etc.) and management strategies (nutritious food selection, smaller frequent meals, environmental adjustments, etc.) | 4.60 ± 0.51 | 0.11 |
| I-2-4 Demonstration of feeding techniques for bedridden patients and oral care. | 4.67 ± 0.49 | 0.10 |
| I-3 Psychological Support for advanced cancer patients. | 4.13 ± 0.74 | 0.18 |
| I-3-1 Invite caregivers to share current communication barriers and difficulties with patients. | 4.67 ± 0.62 | 0.13 |
| I-3-2 Researcher provides summary, explaining common psychological reactions in advanced cancer patients (anger, depression, etc.) and coping strategies. | 4.60 ± 0.63 | 0.14 |
| I-3-3 Encourage caregivers to actively communicate with patients, providing scripts: “It’s perfectly normal to feel this way.” “I’m always here if you want to talk.” “The patient next door is drawing/listening to music/reading—would you like to try?” Emphasize the importance of nonverbal communication (touch, hand-holding). | 4.60 ± 0.51 | 0.11 |
| I-3-4 Introduce psychological counseling channels, provide counseling hotlines, and facilitate resource referrals based on individual circumstances. | 4.00 ± 0.76 | 0.19 |
| I-4 Caregiver Self-Care Techniques. | 4.33 ± 0.72 | 0.17 |
| I-4-1 Demonstrate quick relaxation techniques to caregivers: Inhale for 4 s, hold breath for 2 s, exhale for 6 s; repeat several times. | 4.47 ± 0.52 | 0.12 |
| I-4-2 Encourage caregivers to set aside daily alone time, choosing a quiet, private space for emotional release. | 4.33 ± 0.72 | 0.17 |
| I-4-3 Remind caregivers to prioritize their sleep. For those struggling to sleep, recommend white noise, pure music, or sleep-inducing meditation as improvement methods. Caregivers may choose to listen or practice these on their own. | 4.60 ± 0.51 | 0.11 |
| I-4-4 Introduce the basic content and access channels for local respite services. | 4.60 ± 0.63 | 0.14 |
| I-5 Assisting with End-of-Life Decisions. | 4.20 ± 0.56 | 0.13 |
| I-5-1 Explains the importance of end-of-life decisions and encourages caregivers to participate in these decisions together with the patient. | 4.60 ± 0.63 | 0.14 |
| I-5-2 Outlines key aspects of end-of-life decisions: refusal of resuscitation, life-sustaining treatment, location of death, advance directives, etc. | 4.67 ± 0.62 | 0.13 |
| I-5-3 Describes life-sustaining measures such as cardiopulmonary resuscitation (CPR), intubation, defibrillation, and ventilator support. | 4.47 ± 0.64 | 0.14 |
| II Discussing and Expressing Death-Related Topics. | 4.67 ± 0.49 | 0.10 |
| II-1 Discussing Death with Patients. | 3.39 ± 0.59 | 0.15 |
| II-1-1 Encourage caregivers to actively engage in death conversations with patients, inviting them to voice concerns and barriers to such discussions. | 4.33 ± 0.62 | 0.14 |
| II-1-2 Researchers collaborated with team members: one played the “patient,” one the “caregiver,” and one the “narrator” to conduct a role-play demonstration of death conversations. | 3.80 ± 0.68 | 0.18 |
| II-1-3 Researchers summarize emotional responses exhibited by the “patient” role during simulated death conversations: refusal to communicate, sudden crying, angry outbursts, calm acceptance, etc. | 4.27 ± 0.70 | 0.16 |
| II-1-4 Researchers summarize coping strategies employed by the “caregiver” role during simulated death conversations: ending the conversation, silent listening, physical reassurance, encouraging emotional release, etc. | 4.53 ± 0.52 | 0.11 |
| II-1-5 Researchers summarize principles for death conversations: patient-centered approach, non-judgmental attitude, appropriate timing, active listening, and empathy. | 4.40 ± 0.63 | 0.14 |
| II-2 Discussing Death with Family Members. | 4.13 ± 0.52 | 0.12 |
| II-2-1 Invite caregivers with experience discussing death with family members to share their process and insights. | 4.53 ± 0.64 | 0.14 |
| II-2-2 Play a 5-minute interview video with death education expert Professor Lu Guijun titled “How to Discuss the End of Life with Parents.” | 4.27 ± 0.59 | 0.14 |
| II-2-3 Recommend the death education children’s picture book “A Life Well Lived.” Content: Grandparents narrate their life stories to grandchildren, using exaggerated humorous language and illustrations to depict the journey from birth through growth to old age. | 4.40 ± 0.63 | 0.14 |
| II-3 Supporting Patient Wishes. | 3.67 ± 0.62 | 0.17 |
| II-3-1 Provide the “Wish List Grid” template card to family caregivers for the patient to complete. Content includes: most memorable event, person they most wish to see, most desired food, words they most wish to say, activity they most wish to do, program they most wish to watch, item they most desire, sport they most wish to play, place they most wish to visit. | 4.13 ± 0.74 | 0.18 |
| II-3-2 Encourage caregivers to fulfill the patients’ wishes within their capabilities and document the process; researchers provide clarification for any questions. | 4.73 ± 0.46 | 0.10 |
| II-3-3 Researchers track outcomes and gather feedback during the intervention period. | 4.07 ± 0.70 | 0.17 |
| III Perception of Death and Meaning of Life. | 4.67 ± 0.49 | 0.10 |
| III-1 Death-Related Concepts. | 4.13 ± 0.64 | 0.15 |
| III-1-1 Explain medical definitions of death: clinical death, brain death, biological death. | 4.47 ± 0.64 | 0.14 |
| III-1-2 Screen the video “Farewell to Professor Zhu Rui of Renmin University: His Reflections on Death,” covering: understanding death, life’s meaning, confronting mortality. | 4.40 ± 0.63 | 0.14 |
| III-2 Exploration of Death Perception. | 4.00 ± 0.65 | 0.16 |
| III-2-1 Initiate discussion as an introduction: What is the meaning of life? What is death? How do you view death? Invite 1–2 caregivers to share perspectives. | 4.47 ± 0.64 | 0.14 |
| III-2-2 Explain to caregivers the purpose of drawing the Tree of Life and Death: Using the tree as a symbol to express understanding of “growth” and “end”. | 4.60 ± 0.51 | 0.11 |
| III-2-3 Guide caregivers to draw a large tree, including roots, trunk, branches, and leaves. Roots represent the past; the trunk represents the present; branches represent the future; growing leaves symbolize blessings; fallen leaves symbolize those who have passed away or emotions/relationships that have been released. Write significant events or words from each stage in the corresponding location. | 4.47 ± 0.64 | 0.14 |
| III-2-4 The researcher shares their own “Tree of Life and Death” as an example, inviting 1–2 caregivers to voluntarily share their own. | 4.53 ± 0.64 | 0.14 |
| III-2-5 Explain the concepts of death with dignity and a good death, allowing caregivers to freely express their views. | 4.53 ± 0.64 | 0.14 |
| III-3 Alleviating Death Anxiety. | 4.07 ± 0.70 | 0.17 |
| III-3-1 Share creative death-related works through images and text, such as rainbow gravestones or glass ashes jewelry, encouraging caregivers to speak freely. | 4.33 ± 0.62 | 0.14 |
| III-3-2 Exposure Method: Facilitators proactively share their envisioned funeral arrangements, eulogies, wills, and burial preferences. | 4.47 ± 0.64 | 0.14 |
| III-3-3 Mindfulness Meditation: Guided practice using the video “The Art of Meditation - Embracing Death” (8 min). | 4.33 ± 0.72 | 0.17 |
| III-4 Life Meaning Reflection. | 4.40 ± 0.51 | 0.12 |
| III-4-1 Invite 1–2 caregivers to share their most unforgettable life experiences. | 4.53 ± 0.52 | 0.11 |
| III-4-2 Guide caregivers to complete the “ikigai” four-leaf clover life test: What do you love? What are you good at? What does the world need? What can bring you income? | 3.67 ± 0.72 | 0.20 |
| III-4-3 Researchers collect tests and randomly select 1–2 to read aloud, fostering peer connection among caregivers. | 4.73 ± 0.46 | 0.10 |
| IV End-of-Life Planning and Advance Directives. | 4.07 ± 0.59 | 0.15 |
| IV-1 Planning Farewells and Memorials. | 4.07 ± 0.59 | 0.15 |
| IV-1-1 Guide caregivers to practice the “Four Acts of Life” (apologizing, expressing gratitude, declaring love, saying goodbye). | 4.67 ± 0.49 | 0.10 |
| IV-1-2 Encourage caregivers to create tangible memorials: “Heartfelt Cards” recording patient wishes/blessings with fingerprint impressions. “Sound Capsules” capturing everyday sounds like laughter or coughs. “Memory Fragment Bottles” containing personal items like hospital wristbands, medication packaging, or fabric scraps. | 4.67 ± 0.49 | 0.10 |
| IV-2 Post-Death Arrangement Process. | 4.27 ± 0.59 | 0.14 |
| IV-2-1 Play video: “How to Handle Various Procedures After a Loved One’s Passing” (11 min). | 4.80 ± 0.41 | 0.09 |
| IV-2-2 Recommend resource post: “How Only Children Handle a Loved One’s Passing,” covering: timing of dressing the deceased, obtaining death certificates, contacting funeral homes, household registration cancellation, cremation and farewell ceremonies, urn storage, etc. | 3.60 ± 0.74 | 0.20 |
| IV-2-3 Address caregivers’ funeral-related questions (e.g., body handling, ashes disposal) based on local “Funeral Management Regulations”; provide consultation channels for unanswered queries. | 4.53 ± 0.64 | 0.14 |
| IV-3 Advance Directives. | 4.20 ± 0.68 | 0.16 |
| IV-3-1 Introduces the definition and content of advance directives. | 4.53 ± 0.64 | 0.14 |
| IV-3-2 Provides a link to the authoritative advance directive resource website “Choice and Dignity” for caregivers to access the latest information. | 3.53 ± 0.52 | 0.15 |
| IV-3-3 Interpret the “My Five Wishes” document developed by the Advance Directives Advocacy Association for dissemination. Provide printed copies for caregivers to discuss and complete with patients to understand their end-of-life choices (distinguishing this from unfinished business by emphasizing end-of-life preferences). | 4.60 ± 0.63 | 0.24 |
| V Anticipatory Grief Management. | 4.07 ± 0.70 | 0.17 |
| V-1 Self-Identification of Anticipatory Grief. | 3.87 ± 0.64 | 0.17 |
| V-1-1 Explain the concept of anticipatory grief, helping caregivers acknowledge and confront this emotion. | 3.60 ± 0.74 | 0.20 |
| V-1-2 Encourage caregivers to conduct a simple self-assessment: Are thoughts constantly focused on the patients’ condition? Do tears come uncontrollably when thinking of the patient? Is there a lack of future planning? Is there premature anxiety or sadness about events not yet occurring? | 3.53 ± 0.83 | 0.24 |
| V-2 Anticipatory Grief Management. | 3.60 ± 0.51 | 0.14 |
| V-2-1 Guide caregivers to maintain an emotional journal documenting: date, triggering events, physical reactions, emotional labels, and intensity levels. | 3.93 ± 0.88 | 0.22 |
| V-2-2 Encourage caregivers to engage in 1–2 “non-caregiving activities” weekly, such as socializing or pursuing hobbies. | 3.47 ± 1.06 | 0.31 |
| V-2-3 Caregivers watch “Grief Emotion First Aid” mindfulness meditation videos, selecting practice sessions independently. | 4.13 ± 0.83 | 0.20 |
Preliminary trial results
General information of family caregivers
A total of 7 family caregivers completed the pilot test. Their general information is presented in Table 6.
Table 6.
General Information of Family Caregivers in the Preliminary Trial
| ID | Gender | Age | Education Level | Employment Status | Monthly Income(¥) | Relationship to Patient | Have you discussed death with others? |
|---|---|---|---|---|---|---|---|
| 1 | Female | 28 | Junior College | Employed | 4000–6000 | Children | Yes |
| 2 | Female | 47 | High School | Unemployed | 2000–4000 | Children | No |
| 3 | Male | 55 | Junior High School | Unemployed | 2000–4000 | Spouses | No |
| 4 | Female | 36 | Bachelor | Employed | 4000–6000 | Children | Yes |
| 5 | Male | 51 | High School | Employed | 2000–4000 | Spouses | Yes |
| 6 | Male | 46 | Junior High School | Employed | 4000–6000 | Children | No |
| 7 | Female | 22 | Bachelor | Unemployed | < 2000 | Children | Yes |
Quantitative feasibility results
A total of 12 family caregivers met the inclusion and exclusion criteria. After explaining the study objectives, 10 caregivers agreed to participate, yielding a recruitment rate of 83%. During the intervention, 3 caregivers withdrew from the intervention. Seven caregivers completed all five intervention modules and post-intervention feedback, resulting in completion rate of 70%. All five modules were covered during the pilot test. However, the intervention was delivered individually rather than as a group intervention, and some components were implemented in a shortened format because the main purpose of the pilot test was to assess the acceptability, comprehensibility, and preliminary feasibility of the program rather than to evaluate intervention effectiveness. The three caregivers who withdrew showed good engagement during the first module on end-of-life knowledge and caregiving skills. However, during the second module on death-related communication, two caregivers reported that the content was relatively burdensome and less relevant to their immediate caregiving needs. One caregiver stated that although they could personally accept death-related topics, they were unwilling to discuss death directly with the patient. These findings suggested that death communication content should be delivered more flexibly and should take caregivers’ readiness and emotional acceptance into account.
Qualitative results
Based on feedback from the 7 pre-trial family caregivers, the intervention protocol was modified: 3 items were revised and 1 item was deleted. The revisions mainly involved simplifying overly technical content, removing content that caregivers were not yet ready to receive, and allowing more flexible delivery of sensitive activities. Specific suggestions and modifications are detailed in Table 7.
Table 7.
Pre-trial family caregiver feedback form
| Content Area | Family Caregiver Feedback | Program Revision |
|---|---|---|
| Common Nutritional Assessment Methods. | Assessment methods are overly complex. | Retain only skinfold thickness measurement; remove assessments for muscle wasting and edema severity. |
| Funeral Management Measures Q&A. | Currently unwilling to consider or receive such information | Remove this content. |
| Medical Definition of Death. | Too technical to want to understand. | Retain only the concept of clinical death; remove concepts of brain death and biological death. |
| Wish List Grid. | Too many concerns and hesitant to have patients complete it. | Modify to either completing the Wish List Grid or conducting a verbal inquiry. |
Overall, the pilot test provided preliminary evidence of the acceptability and feasibility of the program, while also indicating that several components required further simplification, flexible delivery, and adaptation to caregivers’ readiness.
Discussion
Necessity of death education programs tailored to the needs of family caregivers for advanced cancer patients
The Hospice Care Practice Guidelines (2025 Edition) [22] state that providing comprehensive support to family caregivers of cancer patients is one of the objectives of hospice care, with death education being a crucial component of palliative care. Although cultural attitudes that prioritize life over death persist [23], research indicates that family members of patients with advanced cancer desire death education [11]. A qualitative study further reveals that as patients enter the advanced stage with significantly diminished self-care abilities [8], family caregivers seek to learn symptom management techniques—such as pain relief and feeding assistance—while also requesting healthcare professionals to explain the dying process or its signs to help them prepare. This indicates that, with societal development and progress, people increasingly value the quality of life while living and are gradually embracing concepts such as “dying well” and “good death.” The demand for improving the quality of dying has also notably increased. Collins et al. [24]. pointed out that individuals’ lack of awareness and preparation regarding death and end-of-life issues is one factor hindering the attainment of a high-quality death. Inadequate family knowledge, poor care measures, and ineffective communication are also contributing factors [25]. Providing death education to family caregivers helps them confront the patients’ condition, understand the natural process of death, build courage to face bereavement, and better support the patient through the advanced phase, thereby improving the quality of the patients’ death [26]. Furthermore, family caregivers’ attitudes toward and demand for death education influence not only their own receptivity but also the patients’ willingness to engage with such education [27]. Therefore, providing scientifically sound and preliminarily feasible death education programs for family caregivers is crucial not only for this group but also for the patients’ quality of dying and the practice of death education.
The death education program based on the needs of family caregivers for advanced cancer patients demonstrates scientific validity and reliability
This study, guided by the needs of family caregivers of patients with advanced cancer patients, employed a literature review, quantitative surveys to assess caregivers’ death education needs, and semi-structured interviews to explore specific requirements. A preliminary draft was developed through group discussions. The program underwent revisions through two rounds of Delphi expert consultations and a pilot test to refine the final draft, ensuring scientific validity. The consulted experts came from multiple tertiary hospitals in Guizhou, Sichuan, Shanxi, and Shandong provinces, representing diverse disciplines including oncology nursing, palliative care, and clinical medicine. These experts possessed extensive theoretical knowledge and practical experience, ensuring strong representativeness. The authority coefficients for the two rounds of expert consultations were 0.858 and 0.87, respectively, indicating high expert authority. The Kendall’s coefficient of agreement for the two rounds was 0.234 and 0.272, respectively, with statistically significant differences (P < 0.001), demonstrating consistent expert evaluations. The response rates for the two rounds of expert questionnaires were 83% and 100%, respectively, and the expert opinion proposal rates were 87% and 27%, respectively. This indicates high expert engagement and the reliability of the expert consultation results. In summary, the process of constructing a death education program based on the needs of family caregivers of patients with advanced cancer was scientifically rigorous. The program content is scientifically valid and reliable, providing guidance for death education practices among family caregivers.
The death education program shows comprehensiveness and preliminary feasibility
Family caregivers undergo complex psychological changes throughout the progression of a cancer patient’s illness, experiencing heightened emotional distress from death-related events, particularly in the advanced stage [28]. Given the rapid and unpredictable nature of cancer progression, caregivers often find themselves inadequately prepared [18]. A qualitative study explored the dynamic shifts in guilt experienced by family caregivers of cancer patients, revealing that caregivers feel guilty for being unable to provide optimal care and cope with the patients’ suffering [11]. Open communication between family caregivers and patients about illness and death can alleviate caregiver burden and enhance personal relief [9]. The World Health Organization (WHO) and the World Hospice and Palliative Care Alliance (WHPCA) have designated death education as a key indicator for evaluating the quality of dying [29]. Current death education interventions suffer from fragmented information and limited formats [30], lacking consideration for group specificity, stage of illness, and actual needs. This program comprehensively addresses the needs of family caregivers of patients with advanced cancer. Its content incorporates end-of-life care information, caregiving techniques, and decision-making support to alleviate caregivers’ burdens related to caregiving, decision-making, and psychological stress. This aligns with the patient-centered psychological characteristics and practical needs of this group.
Additionally, the program includes a self-care module for family caregivers, reinforcing their roles beyond caregiving and supporting their exploration of personal life meaning. Formally, it integrates diverse strategies, such as role-playing, workshops, and mindfulness-based relaxation, to enhance caregivers’ acceptance of death education. It also guides caregivers in choosing online or offline participation based on their circumstances, thereby improving adherence. Regarding feedback mechanisms, the program integrates multiple pathways—including commemorative practices and emotional externalization—to help caregivers preserve emotional connections and receive sustained positive reinforcement. The pilot test provided preliminary evidence of the program’s acceptability and feasibility, with a recruitment rate of 83% and a completion rate of 70%. However, caregiver feedback also indicated that some components, especially death-related communication and technically complex content, should be delivered more flexibly and adapted to caregivers’ readiness and emotional acceptance. In summary, this program demonstrates comprehensiveness and preliminary practicality, offering valuable reference and guidance for death education practices among family caregivers, although further validation in larger-scale studies is still needed.
Conclusion
Guided by the needs of family caregivers of patients with advanced cancer, this study employed quantitative, qualitative research, literature reviews, Delphi expert consultation, and pilot testing to develop a death education program tailored to this population. The program’s development methodology is scientifically sound and reliable, with content that is comprehensive and targeted. The pilot test provided preliminary evidence of acceptability and feasibility; however, the program’s effectiveness and implementation feasibility require further validation in larger samples and real-world clinical settings.
Limitations and strengths
The strength of this study lies in its development process. The preliminary protocol was developed by integrating quantitative survey findings, qualitative interview findings, and literature review evidence from family caregivers of patients with advanced cancer. The protocol was then refined through a multidisciplinary Delphi expert consultation and pilot testing. This approach helped ensure the comprehensiveness and relevance of the protocol and allowed it to reflect family caregivers’ needs regarding death education.
However, several limitations must be acknowledged. First, the pilot test was conducted with a small number of family caregivers and was primarily intended to assess the acceptability, comprehensibility, and preliminary feasibility of the program rather than to evaluate its intervention effectiveness. Therefore, the program has not yet undergone extensive practical validation or effectiveness testing in a larger sample. Second, although all modules were covered during the pilot test, the intervention was delivered mainly in an individual format, and some components were implemented in a shortened form. The optimal delivery format, session duration, frequency, and total intervention period still require further evaluation in future studies. Third, although the Delphi panel included experts from nursing education and related clinical fields, the involvement of dedicated health education, health promotion, or curriculum design specialists was limited. Future studies should include such experts to further optimize the educational principles, content sequencing, and delivery strategies. Finally, the educational materials used in this program were mainly selected or compiled from existing resources. Further work is needed to develop standardized educational materials, evaluation tools, practitioner training procedures, and operational details tailored to different caregiver groups and clinical contexts.
Supplementary Information
Acknowledgements
We extend our deepest gratitude to all family caregivers of advanced cancer patients involved in this study, as well as to the panel of experts who participated in the Delphi consultation process, for their invaluable support and understanding throughout this research endeavor.
Problem or issue
Family caregivers of patients with advanced cancer often experience negative emotions and burdens related to death or end-of-life events, yet there is a lack of comprehensive and effective death education programs for intervention.
What is already known
Family caregivers of advanced cancer patients represent a critical domain in palliative care, yet death education practices tailored to this group have received insufficient attention.
What this paper adds
This study developed a comprehensive death education program based on the needs of family caregivers of terminally ill cancer patients through literature review, quantitative research, qualitative research, the Delphi method, and a pre-experiment.
Authors’ contributions
Ruoyue Zhou: Conceptualization, Methodology, Formal analysis, Investigation, Data curation, Writing original draft, Writing review & editing, Project administration.Yanzhe Wang: Conceptualization, Methodology, Writing -review & editing, Funding acquisition.Shaojuan Feng: Investigation, Data collation, Validation.Cheng Xu: Investigation, Writing review & editing.Binyang Hu: Methodology, Data curation.Yonghong Li: Conceptualization, Methodology, Validation, Formal analysis, Funding acquisition, curation, Writing -review & editing, Supervision, Project administration.Sisi He: Conceptualization, Methodology, Supervision, Writing -review & editing.
Funding
This work was supported by the 2023 Ministry of Education Humanities and Social Sciences Research Planning Project (No. 23XJA720002) and Guizhou Provincial Department of Education University Humanities and Social Sciences Research Project ( No. 24RWZX064).
Data availability
The data that support the findings of this study are not publicly available due to ethical considerations and privacy restrictions related to participant confidentiality. Data are available from the corresponding author upon reasonable request and with approval from the institutional ethics committee.
Declarations
Ethics approval and consent to participate
This study was conducted in accordance with the principles of the Helsinki Declaration. Approval was obtained from the Ethics Committee of Affiliated Hospital of Zunyi Medical University prior to data collection (Approval No. KLLY-2024-048).
All participants were informed about the aim, procedures, and voluntary nature of the study. Verbal and written informed consent was obtained from all participants prior to data collection.
Consent for publication
Not Applicable.
Competing interests
The authors declare no competing interests.
Footnotes
Publisher’s note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Contributor Information
Yonghong Li, Email: Liyonghong8990@163.com.
Sisi He, Email: Sisihe1219@163.com.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Data Availability Statement
The data that support the findings of this study are not publicly available due to ethical considerations and privacy restrictions related to participant confidentiality. Data are available from the corresponding author upon reasonable request and with approval from the institutional ethics committee.