A multidisciplinary research team has developed and validated a structured death education program tailored specifically to address the emotional, cognitive, and practical challenges faced by family caregivers of patients diagnosed with advanced cancer. While modern oncological interventions have extended overall patient survival, individuals diagnosed with stage III and IV malignancies frequently encounter prolonged physical deterioration, multi-system physiological complications, and diminished functional capacity, shifting substantial daily management responsibilities directly onto unpaid family relatives. Although death education serves an established clinical role in reframing death attitudes, mitigating fear, and supporting bereavement preparation, prior interventions have predominantly targeted professional medical personnel or cancer patients rather than household supporters. To resolve this critical gap in supportive oncology, the authors integrated quantitative survey evaluations, qualitative caregiver interviews, systematic literature syntheses, two rounds of Delphi expert consensus consultations, and a hospital-based pilot feasibility trial to formulate a standardized 54-item death education framework.
The investigative workflow commenced with an observational cross-sectional survey designed to assess the precise baseline levels of death education needs and determine their associated sociodemographic and psychological determinants among caregiving family members. Between September 1 and December 31, 2024, the study recruited 208 eligible family caregivers from a tertiary Class A hospital located in Guizhou Province through convenience sampling protocols. Eligible candidates were required to be at least 18 years of age without cognitive impairments, psychiatric histories, or communication barriers, providing unpaid daily care for at least four hours daily over a minimum duration of three months for a relative diagnosed with pathologically confirmed stage III or IV malignant tumors. Participating caregivers completed a comprehensive battery of validated psychometric instruments, including general sociodemographic inventories, the Anticipatory Grief Scale, the Chinese version of the Death Attitude Profile Scale, and a specialized Death Education Needs Questionnaire approved under institutional ethics protocol KLLY-2024-048 from the Affiliated Hospital of Zunyi Medical University. The survey cohort generated a mean total death education need score of 138.19 with a standard deviation of 17.99, demonstrating a moderate overall need for targeted educational intervention across the clinical sample.
Detailed analytical breakdowns of the quantitative assessment revealed notable differences in the priority areas highlighted by family caregivers, showing that the highest mean need scores were concentrated in death and end-of-life care techniques, attitudes toward death across diverse developmental age cohorts, and funeral-related planning matters. Pearson correlation analyses established that caregiver death education demand correlated positively with measured anticipatory grief levels (correlation coefficient 0.288, P < 0.001) while displaying a statistically significant inverse correlation with positive death attitudes (correlation coefficient -0.165, P = 0.017). A multiple stepwise linear regression model was subsequently constructed to identify the independent predictors of caregiver educational need, integrating variables identified as significant during univariate screenings. The resulting multivariable model was statistically significant with an F-statistic of 5.798 (P < 0.001), yielding a coefficient of determination of 0.385 and an adjusted R-squared value of 0.327. Diagnostic testing verified model reliability, showing a Durbin-Watson statistic of 2.121, tolerance values exceeding 0.1, and variance inflation factor scores below 5. Collectively, eight specific predictors explained 32.7 percent of the observed variance in educational need: anticipatory grief, baseline death attitude, ethnic background, monthly household income, familial relationship to the patient, patient disease staging, medical insurance categorization, and total duration of illness.
The researchers analyzed caregiver narratives using Colaizzi seven-step phenomenological methodology, extracting four overarching themes encompassing 15 distinct subthemes. The first theme, end-of-life information and caregiving skills, highlighted persistent needs for disease-related updates, specialized home nursing techniques, navigation of complex end-of-life decision dilemmas, and the correction of cognitive misconceptions surrounding terminal care services. The second theme, communication and expression regarding death, captured the emotional strain of delivering bad medical news, reflexive protective avoidance of mortality topics, defensive dialogue patterns, and latent willingness to engage in structured end-of-life discussions. The third theme addressed psychological and affective distress, revealing pronounced anticipatory grief, fear of clinical disease progression, future-oriented anxiety, and feelings of caregiving guilt. The fourth qualitative theme outlined explicit structural preferences for program delivery, demanding practical learning materials, versatile presentation formats, and deep respect for idiosyncratic caregiver coping styles.
Supplementing the empirical field data, the research team conducted a systematic literature review encompassing English and Chinese electronic databases from their inception dates up to August 20, 2024, searching PubMed, Web of Science, Cochrane Library, Embase, CINAHL, CNKI, Wanfang, VIP, and the China Biomedical Literature Service System. Independent dual screening of original interventional studies evaluating death or life education among cancer caregivers yielded 16 eligible publications. Synthesized thematic content from these published trials identified vital instructional components, including emotional relief practices, death preparation activities, informal caregiver self-care regimens, terminal disease knowledge, hospice philosophy, and structured reflections on personal existential meaning. By synthesizing qualitative interview frameworks with priority quantitative regression indicators and supplementary interventional evidence from the literature review, the team drafted a preliminary curriculum organized across six core structural dimensions: end-of-life knowledge and caregiving skills, death awareness and meaning reconstruction, death topic communication and expression, aftercare planning and funeral customs, legal and ethical rights protection, and anticipatory grief management paired with bereavement counseling.
The curricular architecture followed core pedagogical principles prioritizing caregiver-centeredness, immediate practical utility, emotional receptivity, gradual exposure to sensitive mortality themes, scheduling flexibility, and clinical feasibility within hospital environments. Recognizing that immediate immersion into mortality concepts can provoke distress, designers sequenced practical symptom management and daily caregiving skills as the initial entry point to foster mutual therapeutic trust and engagement. Sensitive death-related communication strategies were placed after practical training, requiring participants to achieve basic readiness before examining meaning reconstruction, advance care planning, and post-death logistical arrangements. Anticipatory grief coping tools were positioned near the conclusion to support impending emotional adaptation. Educational delivery relied primarily on personalized one-on-one sessions complemented by workshops, group lectures, peer exchanges, and digital resources, utilizing picture books, instructional videos, mindfulness recordings, printed wish-list cards, written educational sheets, and community reference links compiled by trained clinical researchers.
To refine the educational content and establish professional validity, the investigators executed a formal Delphi expert inquiry spanning two successive consultation rounds between July and October 2025. The multidisciplinary expert panel comprised 15 clinical and academic specialists selected from tertiary general and specialized cancer hospitals across Shaanxi, Guizhou, Shandong, and Sichuan provinces, representing oncology nursing, palliative medicine, clinical healthcare practice, nursing administration, and nursing education. The consulting specialists had a mean age of 49.33 years (standard deviation 8.56) and an average professional working tenure of 27.20 years (standard deviation 11.32), with inclusion criteria requiring at least a bachelor degree, associate senior professional rank or higher, and a minimum of a decade of relevant clinical or academic experience. Consensus rules dictated that curriculum items were preserved only when achieving an arithmetic mean importance score exceeding 4.0 alongside a coefficient of variation below 0.25.
The Delphi consultation demonstrated high panel engagement and convergence of professional judgment across both inquiry iterations. In the opening round, 18 questionnaires were distributed and 15 completed instruments were retrieved, generating an initial response rate of 83 percent, with 13 specialists (87 percent) providing detailed qualitative revisions. The second consultation achieved a 100 percent completion rate across all 15 distributed questionnaires, with four panelists (27 percent) submitting further commentary. Objective assessments of expert authority yielded composite coefficients of 0.858 in round one and 0.870 in round two, derived from judgment basis scores of 0.89 and 0.90 combined with subjective familiarity ratings of 0.826 and 0.840, respectively. Coordination of expert opinions was confirmed by Kendall coefficient of concordance values of 0.234 in round one and 0.272 in round two (P < 0.001 for both rounds), with overall coefficients of variation stabilizing between 0.097 and 0.306. Following substantive round-one modifications that reorganized primary, secondary, and tertiary items, round two stabilized the curriculum into a refined structure comprising five Level 1 dimensions, 17 Level 2 categories, and 55 Level 3 operational items.
A subsequent hospital-based pilot study evaluated the practical acceptability, comprehensibility, and implementation feasibility of the five-module educational curriculum between December 1 and December 30, 2025, within the Oncology Department of a tertiary Class A medical center in Zunyi City. Twelve prospective family caregivers met the established inclusion criteria, of whom 10 consented to participate, yielding an initial recruitment rate of 83 percent. A team of five trained investigators administered the curriculum through shortened individual instruction sessions rather than group classrooms to pilot operational feasibility rather than measure therapeutic efficacy. During implementation, three participants discontinued participation, leaving seven family caregivers who completed all five modules and subsequent feedback interviews, establishing an overall study completion rate of 70 percent. Participant attrition occurred primarily during module two, which focused on death-related communication. Departing caregivers reported that confronting death dialogues felt emotionally burdensome and less directly applicable to immediate bedside caregiving, with one participant explicitly noting that while they accepted mortality concepts internally, they remained entirely unwilling to discuss impending death openly with their terminally ill family member.
Post-trial qualitative feedback obtained from the seven completing caregivers led the researchers to remove one tertiary item and modify three others, finalizing the program at five primary dimensions, 17 secondary categories, and 54 specific operational items. The final refinements prioritized simplifying technical terminology, excising emotionally premature content, and granting facilitators greater latitude to modulate the pace and delivery format of sensitive topics in response to individual caregiver readiness. While the trial verified preliminary clinical feasibility and demonstrated high recruitment potential, the authors acknowledged distinct structural limitations, including the small exploratory sample size, the abbreviated delivery format restricted to individual rather than group modalities, and the reliance on existing non-standardized instructional media. Furthermore, the Delphi expert panel lacked dedicated professional curriculum design and health promotion specialists.
Subject of Research: Development and preliminary feasibility testing of a tailored death education program for family caregivers of patients with advanced cancer
Article Title: Developing a death education program based on the needs of family caregivers for advcaned cancer patients: a Delphi study
Article References: Zhou, R., Wang, Y., Feng, S., Xu, C., Hu, B., Li, Y., & He, S. (2026). Developing a death education program based on the needs of family caregivers for advcaned cancer patients: a Delphi study. BMC Palliative Care, 25(1), Article 228. https://doi.org/10.1186/s12904-026-02260-4
Image Credits: AI Generated
DOI: 10.1186/s12904-026-02260-4
Keywords: death education, family caregivers, advanced cancer, Delphi technique, palliative care, oncology nursing, anticipatory grief, death anxiety, clinical feasibility, end-of-life care, expert consensus, caregiver burden, caregiving skills, communication barriers, pilot study, Zunyi Medical University
News Source: Nathaniel Bowman. (November 11, 2026). Delphi Study Establishes Five Module Death Education Program for Cancer Caregivers. Scienmag.
