Exploring death literacy with allied health professionals: A cross-sectional survey in Australia

Abstract

Background

Allied health clinicians need strong death literacy to navigate loss, grief, dying, and death. Their roles include system navigation, advocacy, and psychosocial support, often bridging healthcare, community, and social services. Adequate death literacy is essential for holistic, compassionate care. This study assessed death literacy among allied health clinicians in the Central Coast region of New South Wales, Australia.

Methods

An anonymous, cross-sectional online survey conducted between February and March 2025 collected demographic, professional, and 29-item Death Literacy Index–Revised (DLI-R) data. Subsequent analyses compared overall and subscale death literacy scores across Central Coast allied health disciplines and against published Australian norms for the (a) general population, (b) health professionals, and (c) end-of-life and bereavement care volunteers.

Results

A total of 144 allied health clinicians completed the survey, including nutrition and dietetics, physiotherapy, podiatry, psychology, occupational therapy, speech pathology, social work, oral health, counselling, allied health assistants, and other disciplines. There were significant differences in the overall death literacy scores across allied health disciplines, with differences in mean scores ranging from 0.280 to 1.238 (p < 0.01). These differences extended to most subscales; however, after adjusting for potentially confounding characteristics, only social work remained significantly different from the “other” group in overall scores. Subscale differences persisted, including higher hands-on care scores in physiotherapy and occupational therapy, and higher factual and community knowledge scores in social work, compared with the “other” group. Overall, allied health clinicians’ death literacy (mean = 5.671) was significantly higher than Australian Online Research Panel norms for the general population (mean = 4.830; p < .001); and lower than health professionals (mean = 6.510; p < .001); end of life care volunteers (mean = 6.640; p < .001); and grief and bereavement care volunteers (mean = 6.590; p < .001).

Conclusion

Allied health clinicians appear to hold some discipline-specific strengths in death literacy subscales. Although overall death literacy was higher than that of the general population, it remained lower than that of health professionals, end-of-life care volunteers, and volunteers in grief and bereavement. These findings highlight gaps in allied health workers’ ability to understand, access, and act on end-of-life care options.

Plain Language Summary

This study focuses on allied health clinicians, a group that plays an important role in everyday health and palliative care but has rarely been included in research on death literacy. It offers new information about who makes up this workforce and the roles they perform. By providing what is believed to be the first benchmarked death literacy profile for this group, the study shows where allied health workers feel confident and where they need more support and training. It also highlights gaps in clinical practice, tertiary allied health education programs, and ongoing professional development, while providing a clear starting point for future research and workforce planning to improve death literacy, end-of-life, and bereavement care.

Keywords

allied health death dying palliative care conversations discussion death literacy Australia participatory action professionals

Introduction

The construct of death literacy refers to the understanding of death and dying, in addition to the skill set that enables people to access, interpret, and act on end-of-life and death-care options.¹ Engaging in open discussions about death and dying has been shown to positively influence individuals’ attitudes toward death and dying.^2,3 There is a need for community and clinical education surrounding death and dying, including how to initiate a conversation on end-of-life care.⁴ Park et al.⁵ described the progress made towards this goal in Australia, with peak health and social care bodies (i.e., Services Australia, the Australian Seniors) developing a range of resources to provide practical guidance on steps to take when someone dies at home. Other aged care agencies, such as Hammond Care, as well as general health information services like Healthdirect, are providing education on how to prepare for the death of a loved one,^6,7 and what to expect during the dying process.⁸ There is some limited coverage of death and dying in tertiary health-professional training^9,10 and ongoing clinician education.¹¹ Despite growing public awareness and increased access to resources,¹² death literacy in Australia and globally remains low among the general population and health professional samples.^13,14

Global health agencies echo these concerns. The World Health Organisation reports that the need for palliative care is rising rapidly due to ageing populations and the increasing prevalence of chronic, life-limiting illness, yet most people worldwide lack the knowledge or confidence to access appropriate end-of-life care.¹⁵ International evidence further demonstrates that low levels of public preparedness, limited understanding of palliative and end-of-life care, and discomfort discussing death are not unique to Australia.¹⁶ Population-level surveys across high-income countries consistently show low engagement with end-of-life planning and limited knowledge of available care options.^17–19 For example, A United Kingdom-wide survey of 8,077 adults found that although nearly 90% believed end-of-life planning was important, yet only 14% had made any formal plans.²⁰

The Death Literacy Index (DLI) has been applied internationally^21,22 to assess knowledge, skills, and engagement related to end-of-life care across populations,²³ providing empirical support for its use across diverse populations and settings, including study designs comparable to the present research. In the UK, the DLI was examined in a large cross-sectional online survey of a nationally representative panel of 41,000 participants. Participants were recruited via an online crowd-sourcing platform and sampled to reflect age, sex, and ethnicity in alignment with Office for National Statistics data. This study established the psychometric properties of the DLI, including structural validity, construct validity, internal consistency, and interpretability. It also enabled the development of population-level benchmarks, confirming it as a reliable measure for researchers and practitioners.²¹ In cross-sectional research, benchmarking against established reference values provides a means of contextualising findings, allowing observed scores to be interpreted relative to broader population norms.^24,25 This approach supports descriptive analyses by identifying potential areas of relative strength or deficit within the study sample, while acknowledging inherent limitations in population comparability, particularly when applied to defined professional cohorts such as allied health clinicians.

Similarly, in a comparable cross-sectional study in Turkey,²⁶ the DLI was translated into Turkish and administered via an online cross-sectional survey of 200 healthcare professionals and 218 non-healthcare participants. Participants were recruited through snowball sampling. Data collection instruments were reviewed by a 10-person panel prior to distribution to ensure clarity and comprehensibility. Independent variables included demographic characteristics. Comparative analysis demonstrated significantly higher levels of death literacy among healthcare professionals. However, “talking support” was the lowest-scoring domain across all participants, indicating persistent challenges in end-of-life communication.²⁶ While in Canada, the DLI was examined for clinical utility in a mixed-methods study²⁷ involving end-of-life stakeholders. Participants included individuals from volunteer community organisations, a national palliative care nursing organisation, and medical students. Recruitment was conducted through professional networks and snowball sampling. Survey and qualitative findings indicated strong support for the tool, with 89.1% of participants endorsing its usefulness. Findings also identified areas for refinement, including cultural, spiritual, and terminology considerations, and the inclusion of minority groups.²⁷ Collectively, these studies demonstrate consistent application of the DLI across comparable study designs, participant groups, and recruitment approaches. This supports its applicability and adaptability in examining variation in death literacy across contexts and aligns with the present study. While these studies include larger and more diverse samples, the present study reflects a defined cohort and is appropriate for the scope and context of this research.

Allied health clinicians, including (but not limited to) the professions of physiotherapy, occupational therapy, social work, psychology, dietetics and speech pathology, make up Australia’s second-largest clinical workforce.²⁸ They provide person-centred diagnostic and therapeutic care, and their specialities span clinical and acute care settings, community and primary health, residential and aged care, justice, legal, and forensic systems, mental health services, and specialised and cross-sector roles.^29,30 Across these vast and intersecting spaces of practice, allied health clinicians often maintain ongoing clinical relationships that position them uniquely to shape patient experience and overall quality of care, including care related to death, dying, and bereavement. However, previous Australian research³¹ revealed low confidence among allied health clinicians in identifying dying, limited awareness of services, and challenges in providing culturally safe care.^32,33 International research echoes similar themes: Systemic gaps in education, role clarity, and cultural responsiveness relating to discussions about death and dying.^34,35

Developed in Australia in 2019, the Death Literacy Index (DLI) has since been refined through international validation and cross-cultural adaptation studies, which have supported its underlying structure while prompting minor contextual modifications to survey items.^27,36,37 The revised DLI, known as the DLI-R, was administered via an online survey to a nationally representative sample of Australian adults. Data were collected from two population groups: a national sample and a state-based sample from the Australian Capital Territory (ACT). Participants were recruited through the Online Research Unit (ORU), a national panel of over 300,000 Australians designed to reflect diversity across states and metropolitan and regional areas. A strategic sampling approach was employed, with quotas applied for age, gender, and geographic region, including equal representation of men and women across six age groups and state-level quotas to ensure inclusion of smaller jurisdictions. A target sample size of 1,200 was determined to achieve a 95% confidence level with a 3% margin of error, based on the Australian Bureau of Statistics sample size calculator. Participation was voluntary and based on an opt-in process, with incentives provided for survey completion and the option to withdraw at any time. The measures comprised demographic questions and the revised Death Literacy Index (DLI-R).^12,36

The study found that scaled mean DLI-R scores and subscale scores were significantly higher among health professionals, individuals with paid experience in end-of-life care, and those involved in grief and bereavement support, with the highest scores observed among bereavement workers.^12,36 These findings provide valuable benchmark data across the Australian community and the broader health workforce. However, the professions within the health profession group were not specified, and results were not reported by discipline, limiting insight into discipline-specific patterns of death literacy, specifically among allied health clinicians. Death literacy within the allied health workforce has attracted remarkably little scholarly attention,¹¹ highlighting an important gap in the literature and warranting further investigation.

Aims and objectives

This study aimed to examine allied health clinicians’ death literacy, compare it with national community and health professional death literacy benchmarks.

Methods

Study design

Cross-sectional survey.

Setting and participants

Convenience and snowball sampling were used to recruit allied health clinicians from the Central Coast region of New South Wales, Australia (population approximately 340,000).³⁸ Participants were drawn from both public and private healthcare sectors, and all provided informed consent.

Eligibility criteria

Eligible participants were allied health clinicians aged ≥18 years who lived and/or worked in the Central Coast region of New South Wales, Australia, and were employed in public healthcare settings (e.g., NSW Health, Department of Education) or private healthcare settings (e.g., general practice, private practice, or non-government organisation clinics).

Recruitment

A multi-modal recruitment strategy was employed to maximise reach across the target population. Recruitment channels included email invitations, flyer distribution, and direct contact achieved through in-person engagement with allied health clinicians across hospital and community settings. This was endorsed by Central Coast Local Health District Heads of Departments and disseminated through the Hunter New England and Central Coast Primary Health Network. Recruitment also included approximately 235 private-health practice visits and targeted social media promotion. A formal a priori power calculation was not undertaken due to the exploratory nature of the study and the absence of published DLI-R data for allied health clinicians from which to estimate an expected effect size. The study, therefore, aimed to recruit as many eligible participants as possible during the recruitment period. Based on workforce mapping, the target population included approximately 241 private allied health practices (including sole practitioners) and approximately 950 allied health clinicians employed by Central Coast Local Health District. Based on previous survey research involving allied health clinicians, healthcare professionals, and medical practitioners, response rates as low as 10% have been reported.^39,40 Accordingly, a response rate of 10–20% was anticipated.⁴¹ To enhance response rates, reminder emails were sent at two time points: midway through the recruitment period and three days before survey closure, distributed via the Central Coast Local Health District and the Hunter New England and Central Coast Primary Health Network.

Two recruitment posters, each featuring a unique QR code and survey link, were used to prevent ineligible or automated (bot-generated) submissions and to uphold data integrity.⁴² Posters displayed in public-facing areas employed a multi-stage recruitment process that directed individuals to an Expression of Interest (EOI) form with screening questions to confirm eligibility; eligible respondents were then emailed a direct survey link. A second poster, circulated within targeted professional networks, provided direct access to the survey. Participants were informed that by commencing the survey, they provided informed consent.

Data collection

Study data were collected and managed using Research Electronic Data Capture (REDCap),^43,44 a secure, web-based data capture tool hosted by the Central Coast Local Health District. This platform provides 1) an intuitive interface for validated data capture; 2) audit trails for tracking data manipulation and export procedures; 3) automated export procedures for seamless data downloads to common statistical packages; and 4) procedures for data integration and interoperability with external sources.^43,44 The online survey was open between February 13 and March 31, 2025.

Survey instrument

The survey commenced with a brief set of participant demographic and professional characteristics to contextualise the sample. Data captured included; age, gender, language, years living in Australia (for migrant participants), allied health profession, years in the profession, and employment sector. Participants were also asked about personal experience supporting someone at the end of life and supporting someone through grief. The DLI-R³⁶ was then administered as the primary measure. The DLI-R is a validated 29-item instrument assessing an individual’s ability to understand, access, and act on end-of-life care options.³⁶ Items are rated on a 5-point Likert scale and organised into four domains: Practical Knowledge (Talking Support and Hands-on Care), Experiential Knowledge, Factual Knowledge, and Community Knowledge (Informal Help-Bringing and Community Support Groups).³⁶ (see Table 1)

Table 1.

Death literacy index revised (DLI-R) survey questions

Domain	Item
Practical Knowledge: (two subscales)	Talking-Support (1) Conversations about dying, death or grief: ^a
	How able are you to:
	Talking about death, dying or grief to a close friend
	Talking about death, dying or grieving with a child
	Talking to a grieving person about their loss
	Talking to a health professional about getting support for a dying person where they live
	Providing Hands-on Care (2): ^a
	How able are you to:
	Feed or help a person to eat
	Wash a person
	Lifting a person or helping them move
	Administer injections
Experiential Knowledge:	Previous experiences of grief, losing someone, or other important life events have: ^b
	Made me more emotionally prepared to support others with death, dying and bereavement
	Made me think about what is important and not important in life
	Developed my wisdom and understanding
	Made me more compassionate toward myself
	Made me better prepared to face similar challenges in the future
Factual Knowledge:	To what extent do you agree with the following? ^b
	I know the rules and regulations when a person dies at home
	I know what documents are needed when planning for death
	I know enough about the healthcare system to find the support that a dying person needs
	I know enough to make decisions about funeral services and options
	I know how to access palliative care in my area
	I know enough about how illnesses progress to make decisions about medical treatments at end-of-life
	I know about the ways that cemetery staff can be of help around funerals
Community Knowledge: (two subscales)	Others can help me provide end-of-life-care (1) ^c
	If I were to provide end-of-life care for someone, I know people who could help me:
	To get support in the area where I live (eg from clubs, associations or volunteer groups)
	To get help with providing day-to-day care for a person at the end of life
	To get the equipment that is required for care
	To get support that is culturally appropriate for a person
	To get emotional support for myself
	Support groups in my community (2) ^c
	If I were to provide end-of-life care for someone, I know people who could help me:
	People with life-threatening illnesses
	People who are nearing the end of their lives
	People who are caring for a dying person
	People who are grieving

Noonan K, Grindrod A, Shrestha S, Lee S, Leonard R, Johansson T. Progressing the Death Literacy Index: the development of a revised version (DLI-R) and a short format (DLI-9). Palliat Care Soc Pract. 2024;18:26323524241274806. Doi: 10.1177/26323524241274806.

^aLikert response scale 1 = not at all able to 5 = very able.

^bLikert response scale 1 = do not agree at all to 5 = strongly agree.

^cLikert resonse scale 1 = strongly disagree to 5 = strongly agree.

These four domains collectively capture the multidimensional construct of death literacy, which encompasses knowledge, skills, and confidence in navigating death, dying, and bereavement.

The DLI-R³⁶ was selected for this study because it demonstrates strong psychometric properties, including high internal consistency (Cronbach’s α > 0.80) and robust construct validity confirmed through factor analysis and model fit indices (CFI ≈ 0.93, RMSEA ≈ 0.06).³⁶ It is sensitive to differences in training, experience, and demographic factors, making it suitable for benchmarking and subgroup comparisons, aligning with the study’s aim to explore preparedness among allied health clinicians.³⁶ By utilising the DLI-R, this research can identify knowledge gaps and inform targeted educational interventions to enhance end-of-life care practices.

Data analysis

Participant characteristics were reported as mean (SD) for continuous variables and n (%) for categorical variables, for the full sample and stratified by profession (physiotherapist, occupational therapist, psychologist, social worker, other). Group differences in baseline characteristics were evaluated with χ² tests for categorical variables, and t-tests (or Kruskal-Wallis rank sum test when normality was violated) for continuous variables using unadjusted p-values.

DLI-R overall and sub-scale scores were compared across professions using the Kruskal–Wallis test. To control the false-discovery rate across six sub-scales plus the total score, p-values were adjusted with the Benjamini–Hochberg procedure. To account for potential confounding, each sub-scale (dependent variable) was modelled with linear regression including: profession (five-level factor), practice setting (community/hospital/mixed), gender, public vs private health sector. From each model, we obtained adjusted marginal means for every profession, and all pairwise contrasts (difference ± 95%CI, BH-adjusted p-value). Model assumptions (normality, homoscedasticity) were checked with residual diagnostics; robust SEs were used when assumptions were marginal.

Mean (DLI-R) and sub-scale scores for each profession were benchmarked against published reference values from the Australian community survey.³⁶ Differences were expressed as mean (study) − mean (reference), and statistical significance was assessed by z-tests that incorporate both SEs. All analyses were performed in R 4.4.0⁴⁵ with the tidyverse, gt, and emmeans packages; two-sided α=0.05.

Results

Participant characteristics

A total of (n = 144) allied health clinicians participated in the study. Occupational therapists represented the largest professional group (n = 35, 24.3%), followed by social workers (n = 29, 20.1%), physiotherapists (n = 24, 16.7%), and psychologists (n = 9, 6.3%). For analysis, professional groups with fewer than 9 participants were combined into a single “Other” category alongside participants categorised as “Other” within the profession selection drop-down menu and those who did not specify their profession. This category included nutrition/dietetics (n = 5, 3.5%), podiatry (n = 5, 3.5%), speech pathology (n = 4, 2.8%), oral health (n = 1, 0.7%), counselling (n = 1, 0.7%), allied health assistants (n = 1, 0.7%), participants categorised as “Other” (n = 25, 17.4%), and participants who did not specify their profession (n = 5, 3.5%), giving a total of n = 47 (32.6%). Participants had worked in their current professional role for a median of 8 years (IQR: 3–18), typically entering the profession at age 32, and had a median age of 40 years (IQR: 31–48). Nearly half of participants (n = 68, 49%) had personally supported someone they knew at the end of life, while most (n = 109, 78%) had supported someone through grief. Detailed participant characteristics are presented in Table 2.

Table 2.

Participant demographics and professional characteristics (n = 144)

Variable:	Occupational therapy n = 35	Social work n = 29	Physiotherapy n = 24	Psychology n = 9	Other n = 47	Overall n = 144	P-value
	n (%)	n (%)	n (%)	n (%)	n (%)	n (%)
Employment Sector							<0.001
Public Sector, e.g. NSW Health, Dept Education	19 (54%)	26 (90%)	9 (39%)	1 (13%)	12 (29%)	67 (49%)
Private Sector e.g. General Practice (GP), Non-Government Organisation (NGO)	16 (46%)	3 (10%)	14 (61%)	7 (88%)	29 (71%)	69 (51%)
Gender							0.020
Male	3 (8.6%	2 (6.9%)	5 (21%)	0 (0%)	13 (32%)	23 (17%)
Female	32 (91%)	27 (93%)	19 (79%)	9 (100%)	28 (68%)	115 (83%)
Language							0.2
English	34 (97%)	29 (93%)	24 (100%)	9 (100%)	36 (86%)	130 (94%)
English & Other	1 (2.9%)	2 (6.9%)	0 (0%)	0 (0%)	6 (14%)	9 (6.5%)
	Median (IQR)	Median (IQR)	Median (IQR)	Median (IQR)	Median (IQR)	Median (IQR)
Number of years in profession	8 (5, 17)	5 (2, 13)	13 (4, 17)	7 (3, 15)	11 (4, 21)	8 (3, 18)	0.6
Age in years	36 (33, 44)	40 (31, 49)	37 (29, 44)	40 (34, 51)	44 (33, 51)	40 (31, 48)	0.3
Number of years living in Australia for migrants	24 (15, 31)	15 (9, 25)	12 (8, 30)	30 (30, 30)	19 (15, 26)	19 (10, 30)	0.7
Personal experience supporting someone at end of life	18 (51%)	20 (69%)	10 (42%)	4 (44%)	16 (38%)	68 (49%)	0.12
Personal experience supporting someone through grief	26 (74%)	28 (97%)	18 (75%)	8 (89%)	29 (69%)	109 (78%)	0.036

Notes.

Numbers in table may not add to total due to missing values.

Non-mutually exclusive categories.

Central Coast allied health clinicians’ death literacy

Death literacy scores differed across allied health disciplines in the Central Coast sample. Mean DLI-R scores and standard deviations are provided in Table 3 for overall death literacy and death literacy subscales (Practical Knowledge [Talking Support and Hands-on Care]; Experiential Knowledge; Factual Knowledge; and Community Knowledge [Informal Help-Bringing and Community Support Groups]).

Table 3.

Mean death literacy overall and subscale scores by allied health professional discipline (n = 144).

	DLI-R overall score Mean, SD	Practical knowledge Mean, SD	Practical knowledge 1. Talking support Mean, SD	Practical knowledge 2. Hands-on care Mean,SD	Experiential knowledge Mean, SD	Factual knowledge Mean, SD	Community knowledge Mean, SD	Others can help me provide end-of-life-care Mean, SD	Support groups in my community Mean, SD
Occupational Therapy n = 35	5.92, 1.49	6.37 (1.46)	6.39 (1.76)	6.34 (1.84)	7.68 (1.75)	3.91 (2.11)	5.68 (2.33	5.43 (2.43)	5.94 (2.67)
Social work n = 29	6.41, 1.68	5.81 (2.05)	8.02 (1.96)	3.59 (2.90)	7.84 (1.99)	5.65 (2.85)	6.35 (1.90)	6.41 (2.10)	6.29 (2.48)
Physiotherapy n = 24	5.55, 1.74	6.47 (1.55)	6.36 (2.15)	6.58 (1.91)	7.41 (1.72)	3.25 (2.66)	5.05 (2.05)	4.46 (2.64)	5.65 (2.12)
Psychology n = 9	6.15, 1.84	6.33 (1.56)	7.71 (1.13)	4.92 (2.53)	8.06 (1.95)	4.29 (2.76	6.08 (2.02)	6.00 (3.30)	6.16 (1.59)
Other n = 47	4.89, 1.44	5.49 (1.85)	6.40 (2.20)	4.50 (2.42)	6.99 (1.84)	2.78 (2.42)	4.45 (1.85)	3.53 (2.11)	5.38 (1.90)
Pairwise comparisons (adjusted for setting, gender and sector)
P¹	<0.001^^^*	0.2	0.002^^	< 0.001^^^*	0.2	< 0.001^^^*	0.004^^	< 0.001^^^*	0.5
FDR-adjusted p²	0.002^^	0.2	0.004^^	< 0.001^^^*	0.2	0.001^^	0.007^^	< 0.001^^^*	0.5

¹Kruskal-Wallis rank sum test.

²Benjamini & Hochberg correction for multiple testing.

*p < .05.

**p < .01.

***p < .001.

Comparisons of death literacy across allied health professional groups

There were statistically significant differences among the professional groups in the overall DLI-R score (p = 0.002), with mean scores ranging from 4.89 to 6.41. Significant differences were also observed between professional groups in the employment sector (p < 0.001), gender (p = 0.020), and grief/loss support experiences (p = 0.036), and these variables were adjusted for in the pairwise comparisons outlined below. However, findings should be interpreted cautiously, given the non-comparability of groups and variation in professional group sample sizes.

Table 4 presents all pairwise comparisons of differences in overall DLI-R and subscale scores among allied health professional groups, adjusted for setting, gender, and sector, using a linear regression model. The overall DLI-R score for the social worker group remained statistically significantly different from that of the “Other” group. No other differences between professional groups for the overall DLI-R score were statistically significant. As seen in Table 4, significant subscale differences included Practical Knowledge 2: Hands-on Care, where physiotherapy and occupational therapy had higher scores than social work and the “Other” allied health clinician category; Factual Knowledge and Community Knowledge, where social work had higher scores than the “Other” allied health clinician category; and Community Knowledge 1: Accessing Help, where occupational therapy and social work had higher scores than the “Other” allied health clinician category.

Table 4.

DLI-R overall and subscale pairwise comparisons, presenting adjusted mean differences, 95% confidence intervals and p-values.

Contrast pair	Difference	95% CI lower	95% CI upper	Raw p-value	Benjamini–Hochberg adjusted p-value
DLI-R overall scores
Occupational Therapy - Other	1.238	0.137	2.338	0.019	0.123
Occupational Therapy - Physiotherapy	0.423	−0.784	1.631	0.868	1.000
Occupational Therapy - Psychology	−0.280	−2.144	1.584	0.994	1.000
Occupational Therapy - Social Work	−0.475	−1.636	0.687	0.789	1.000
Other - Physiotherapy	−0.814	−2.011	0.383	0.331	1.000
Other - Psychology	−1.517	−3.382	0.347	0.167	0.685
Other - Social Work	−1.712	−2.946	−0.479	0.002	0.023*
Physiotherapy - Psychology	−0.703	−2.640	1.234	0.852	1.000
Physiotherapy - Social Work	−0.898	−2.215	0.419	0.329	1.000
Psychology - Social Work	−0.195	−2.187	1.797	0.999	1.000
Practical knowledge
Occupational Therapy - Other	1.098	−0.068	2.263	0.075	0.376
Occupational Therapy - Physiotherapy	−0.078	−1.399	1.242	1.000	1.000
Occupational Therapy - Psychology	0.119	−1.931	2.169	1.000	1.000
Occupational Therapy - Social Work	0.431	−0.842	1.703	0.882	1.000
Other - Physiotherapy	−1.176	−2.473	0.121	0.095	0.427
Other - Psychology	−0.979	−3.013	1.056	0.672	1.000
Other - Social Work	−0.667	−1.999	0.665	0.637	1.000
Physiotherapy - Psychology	0.197	−1.937	2.332	0.999	1.000
Physiotherapy - Social Work	0.509	−0.942	1.959	0.868	1.000
Psychology - Social Work	0.311	−1.881	2.504	0.995	1.000
Practical knowledge 1 (Talking Support)
Occupational Therapy - Other	0.112	−1.238	1.461	0.999	1.000
Occupational Therapy - Physiotherapy	0.096	−1.436	1.628	1.000	1.000
Occupational Therapy - Psychology	−1.306	−3.568	0.957	0.502	1.000
Occupational Therapy - Social Work	−1.722	−3.187	−0.258	0.012	0.102
Other - Physiotherapy	−0.015	−1.516	1.485	1.000	1.000
Other - Psychology	−1.417	−3.658	0.824	0.407	1.000
Other - Social Work	−1.834	−3.366	−0.302	0.010	0.093
Physiotherapy - Psychology	−1.402	−3.767	0.963	0.475	1.000
Physiotherapy - Social Work	−1.819	−3.491	−0.146	0.026	0.155
Psychology - Social Work	−0.417	−2.850	2.016	0.990	1.000
Practical knowledge 2 (Hands-on Care)
Occupational Therapy - Other	2.139	0.600	3.677	0.002	0.023*
Occupational Therapy - Physiotherapy	−0.266	−2.009	1.477	0.993	1.000
Occupational Therapy - Psychology	1.608	−1.098	4.313	0.472	1.000
Occupational Therapy - Social Work	2.601	0.921	4.281	0.000	0.010*
Other - Physiotherapy	−2.404	−4.116	−0.693	0.002	0.023*
Other - Psychology	−0.531	−3.216	2.154	0.982	1.000
Other - Social Work	0.463	−1.295	2.221	0.949	1.000
Physiotherapy - Psychology	1.874	−0.944	4.691	0.355	1.000
Physiotherapy - Social Work	2.867	0.953	4.782	0.001	0.013*
Psychology - Social Work	0.994	−1.901	3.888	0.876	1.000
Experiential knowledge
Occupational Therapy - Other	0.739	−0.538	2.017	0.499	1.000
Occupational Therapy - Physiotherapy	0.217	−1.195	1.629	0.993	1.000
Occupational Therapy - Psychology	−0.376	−2.555	1.803	0.989	1.000
Occupational Therapy - Social Work	−0.016	−1.374	1.341	1.000	1.000
Other - Physiotherapy	−0.522	−1.914	0.869	0.836	1.000
Other - Psychology	−1.115	−3.286	1.056	0.615	1.000
Other - Social Work	−0.755	−2.193	0.682	0.593	1.000
Physiotherapy - Psychology	−0.593	−2.857	1.672	0.950	1.000
Physiotherapy - Social Work	−0.233	−1.773	1.307	0.993	1.000
Psychology - Social Work	0.360	−1.969	2.688	0.993	1.000
Factual knowledge
Occupational Therapy - Other	1.371	−0.364	3.105	0.191	0.747
Occupational Therapy - Physiotherapy	0.690	−1.213	2.593	0.853	1.000
Occupational Therapy - Psychology	−0.473	−3.410	2.464	0.992	1.000
Occupational Therapy - Social Work	−1.674	−3.504	0.156	0.090	0.427
Other - Physiotherapy	−0.681	−2.567	1.206	0.855	1.000
Other - Psychology	−1.844	−4.783	1.095	0.415	1.000
Other - Social Work	−3.045	−4.988	−1.101	0.000	0.010*
Physiotherapy - Psychology	−1.163	−4.215	1.890	0.829	1.000
Physiotherapy - Social Work	−2.364	−4.440	−0.288	0.017	0.123
Psychology - Social Work	−1.201	−4.341	1.939	0.827	1.000
Community knowledge
Occupational Therapy - Other	1.470	0.049	2.892	0.039	0.218
Occupational Therapy - Physiotherapy	0.802	−0.758	2.361	0.614	1.000
Occupational Therapy - Psychology	−0.409	−2.816	1.997	0.990	1.000
Occupational Therapy - Social Work	−0.682	−2.182	0.818	0.716	1.000
Other - Physiotherapy	−0.669	−2.214	0.877	0.752	1.000
Other - Psychology	−1.880	−4.288	0.528	0.201	0.755
Other - Social Work	−2.152	−3.745	−0.560	0.003	0.029*
Physiotherapy - Psychology	−1.211	−3.713	1.290	0.666	1.000
Physiotherapy - Social Work	−1.484	−3.185	0.218	0.118	0.507
Psychology - Social Work	−0.273	−2.846	2.300	0.998	1.000
Community knowledge 1 (accessing help)
Occupational Therapy - Other	2.169	0.533	3.804	0.003	0.033*
Occupational Therapy - Physiotherapy	1.216	−0.579	3.010	0.336	1.000
Occupational Therapy - Psychology	−0.592	−3.361	2.178	0.976	1.000
Occupational Therapy - Social Work	−0.992	−2.717	0.734	0.506	1.000
Other - Physiotherapy	−0.953	−2.732	0.826	0.575	1.000
Other - Psychology	−2.760	−5.531	0.011	0.051	0.272
Other - Social Work	−3.160	−4.993	−1.328	0.000	0.004^^
Physiotherapy - Psychology	−1.807	−4.685	1.071	0.414	1.000
Physiotherapy - Social Work	−2.207	−4.165	−0.250	0.019	0.123
Psychology - Social Work	−0.400	−3.361	2.561	0.996	1.000
Community knowledge 2 (support groups)
Occupational Therapy - Other	0.772	−0.835	2.380	0.673	1.000
Occupational Therapy - Physiotherapy	0.388	−1.376	2.152	0.973	1.000
Occupational Therapy - Psychology	−0.227	−2.950	2.495	0.999	1.000
Occupational Therapy - Social Work	−0.372	−2.069	1.324	0.974	1.000
Other - Physiotherapy	−0.384	−2.133	1.364	0.973	1.000
Other - Psychology	−1.000	−3.724	1.725	0.847	1.000
Other - Social Work	−1.145	−2.946	0.657	0.402	1.000
Physiotherapy - Psychology	−0.615	−3.445	2.214	0.974	1.000
Physiotherapy - Social Work	−0.760	−2.685	1.164	0.809	1.000
Psychology - Social Work	−0.145	−3.056	2.766	1.000	1.000

*p < .05.

**p < .01.

***p < .001.

Comparison of Central Coast allied health clinicians’ death literacy with published norms

To provide context for interpretation of DLI-R scores, comparisons were undertaken with previously published Australian benchmark data (Table 5). These comparisons should be interpreted cautiously, as the benchmark populations differed from the current sample in participant characteristics, recruitment methods, and sampling approaches. Accordingly, the comparisons are intended to provide reference points rather than indicate direct population-level equivalence.

Table 5.

Comparison of current study sample (n = 144) with Australian population norms across subscales.

Study sample:	DLI-R overall score		Practical knowledge		Practical knowledge 1: Talking support		Practical knowledge 2: Hands-on care		Experiential knowledge		Factual knowledge		Community knowledge		Community knowledge 1: Others can help me provide end-of-life-care		Community knowledge 2: Support groups in my community
Study sample:	Mean, SE	Diff, p	Mean, SE	Diff, p	Mean, SE	Diff, p	Mean, SE	Diff, p	Mean, SE	Diff, p	Mean, SE	Diff, p	Mean, SE	Diff, p	Mean, SE	Diff, p	Mean, SE	Diff, p
Central Coast Allied Health Clinicians	5.671, 0.146	n/a	6.000, 0.152	n/a	6.816, 0.177	n/a	5.167, 0.221	n/a	7.485, 0.161	n/a	3.857, 0.235	n/a	5.377, 0.187	n/a	4.942, 0.226	n/a	5.812, 0.199	n/a
General Population^a	4.830, 0.060	0.841, p < 0.001^^^*	5.040, 0.060	0.960, p < 0.001^^^*	5.460, 0.07	1.356, p < 0.001^^^*	6.420, 0.070	-1.253, p < 0.001^^^*	5.900, 0.070	1.585, p < 0.001^^^*	3.790, 0.070	0.067, p = 0.784	4.600, 0.060	0.777, p < 0.001^^^*	4.150, 0.070	0.792, p = 0.001^^	5.060, 0.060	0.753, p < 0.001^^^*
Health Professionals^a	6.510, 0.200	-0.839, p < 0.001^^^*	6.740, 0.210	-0.740 p = 0.004^^	6.830, 0.210	-0.014, p = 0.960	6.900, 0.250	-1.733, p < 0.001^^^*	6.370, 0.210	1.115, p < 0.001^^^*	6.130, 0.260	-2.273, p < 0.001^^^*	6.290, 0.100	-0.913, p < 0.001^^^*	6.110, p = 0.120	-1.168, p < 0.001^^^*	6.460, 0.230	-0.647, p = 0.033^*
End of life volunteers^a	6.640, 0.180	-0.969, p < 0.001^^^*	6.730, 0.200	-0.730 p = 0.004^^	6.900, 0.220	-0.084, p = 0.776	6.560, 0.230	-1.393, p < 0.001^^^*	7.310, 0.200	0.175, p = 0.495	6.130, 0.260	-2.273, p < 0.001^^^*	6.410, 0.200	-1.033, p < 0.001^^^*	6.230, 0.230	-1.288, p < 0.001^^^*	6.590, 0.210	-0.777, p = 0.007^^
Bereavement volunteers^a	6.590, 0.160	-0.919, p < 0.001^^^*	6.610, 0.180	-0.610 p = 0.010^*	6.890, 0.190	-0.074, p = 0.776	6.330, 0.230	-1.163, p < 0.001^^^*	7.210, 0.170	0.275, p = 0.240	6.100, 0.240	-2.243, p < 0.001^^^*	6.420, 0.180	-1.043, p < 0.001^^^*	6.310, 0.210	-1.368, p < 0.001^^^*	6.530, 0.200	-0.718, p = 0.011^*

*p < .05.

**p < .01.

***p < .001.

^aNoonan K, Grindrod A Shrestha S, Lee S, Leonard R, Johansson T. Progressing the Death Literacy Index: the development of a revised version (DLI-R) and a short format (DLI-9). Palliat Care Soc Pract. 2024;18:26323524241274806. Doi: 10.1177/26323524241274806.

Death literacy among Central Coast allied health clinicians was significantly higher than Australian general population norms (mean = 5.671 vs 4.830, p < .001). However, scores were significantly lower than those reported for health professionals (mean = 6.510, p < .001), end-of-life care volunteers (mean = 6.640, p < .001), and grief and bereavement care volunteers (mean = 6.590, p < .001). At the subscale level, the Central Coast sample demonstrated higher scores across most DLI-R domains compared with general population norms, except for Hands-on Care, where scores were significantly lower. In contrast, scores across most subscales were generally lower than those reported for health professional and volunteer benchmark groups, except for the Talking Support and Experience subscales (Table 5).

Discussion

To our knowledge, this is the first cross-sectional survey to assess death literacy among allied health clinicians using the DLI-R.³⁶ The study found that allied health clinicians scored higher than the general population but lower than other health professionals and volunteers across most subscales, except Talking Support and Experiential Knowledge. Allied health clinicians work across diverse professional contexts where communication is central to providing comprehensive end-of-life care.⁴⁶ The gap observed in this study is therefore important, as lower death literacy may limit clinicians’ ability to recognise, initiate, or support the wide range of conversations required in end-of-life practice. Lower scores may indicate allied health clinician uncertainty about how far their responsibilities extend in initiating, supporting, or documenting conversations about death and dying.⁴⁷ This interpretation aligns with evidence showing that death literacy is strengthened through experiential learning and structured training,⁴⁸ suggesting that clearer role expectations and targeted education could address these gaps.

The Central Coast Local Health District’s Palliative Care and End of Life Care Review identified persistent structural barriers to effective end-of-life care,⁴⁹ underscoring the long-standing systemic conditions in which these constraints occur. Nor were they isolated to this district. Similarities have been documented across Australia⁵⁰ and internationally,¹⁹ where fragmented care pathways, workforce shortages, and inconsistent documentation processes also continue to undermine the quality and coordination of end-of-life care. For allied health clinicians, whether embedded in multidisciplinary teams or working more independently, clear communication pathways, coordination, and reliable documentation systems are critical.⁵¹ Constraints in these areas may have intensified uncertainties about scope, responsibility, and preparedness.

Despite the Central Coast sample’s overall lower benchmark scores in the DLI-R³⁶ domains compared to those of health professionals, end-of-life volunteers, and bereavement volunteers, several nuanced findings warrant attention. Discipline-specific patterns were evident. Social workers demonstrated significantly higher overall DLI-R scores than the grouped “Other” category following adjustment (mean difference = 1.712). However, the practical significance of this difference remains unclear. Although the finding suggests variation in death literacy between professional groups, no minimal important difference (MID) has been established for the DLI-R. Consequently, it is unknown whether a difference of this magnitude represents a meaningful difference in practice. These findings should therefore be interpreted with caution. Further research involving larger cohorts is needed to establish clinically meaningful thresholds for the DLI-R and to better understand the practical significance of observed differences in scores.

Professional subgroup sizes were uneven, reflecting both the exploratory nature of the study and the composition of the allied health workforce within a regional Australian setting. Furthermore, there is limited research examining death literacy among allied health clinicians, and little is known about profession-specific differences across the allied health workforce. As described in the Methods, professions with fewer than nine participants were combined into an “Other” category to facilitate statistical analysis and avoid unreliable estimates associated with very small cell sizes. While this approach enabled inclusion of a broader range of allied health professions, the resulting category was inherently heterogeneous and may have obscured profession-specific differences in death literacy. Accordingly, although social workers demonstrated significantly higher overall DLI-R scores than the “Other” category following adjustment, this finding should be interpreted cautiously. The heterogeneous composition of the grouped category limits the ability to determine whether the observed differences reflect a broad contrast between social work and other allied health professions, or variation among the individual professions within the category. Future research involving larger multi-site or statewide samples, as well as studies focused on individual allied health professions, is needed to better understand profession-specific patterns of death literacy across the allied health workforce.

A consistent weakness across the cohort was the Factual Knowledge domain,³⁶ where scores were lower than those of health professionals, end-of-life volunteers, and bereavement volunteers. This domain captures understanding of procedural, legal, and system-level requirements at end-of-life, including what must occur when a person dies at home, death-planning documentation, and how health and social care systems interact. The findings suggest that the factual and community knowledge domains may warrant particular attention, as they were among the lowest-scoring areas in the current study. Educational initiatives may benefit from greater emphasis on navigating local health and community services, understanding referral pathways, accessing palliative care and bereavement supports, and increasing familiarity with end-of-life documentation, care processes, and available resources. These gaps may reflect limited awareness of available services, inconsistent referral processes, or uncertainty when navigating local health and government systems during periods of care escalation. Simulation-based learning and case-based scenarios may provide opportunities for clinicians to practise recognising deterioration, initiating appropriate referrals, navigating care escalation pathways, and coordinating support across health and community settings.

In contrast, on the Experiential Knowledge subscale,³⁶ the current study sample scores exceeded all benchmark sample scores. Items within this subscale captured how prior experiences of grief, loss, and important life events have shaped emotional preparedness, compassion, and the ability to support others. These elevated scores suggest that allied health clinicians draw meaningfully on personal and relational experiences when engaging with death, dying, and bereavement, even when other death literacy skill levels may be underdeveloped, reinforcing the idea that experience plays a central role in shaping death literacy.⁵²

Scores in the Community Knowledge domain³⁶ were also lower than those of health professionals, end-of-life volunteers, and bereavement volunteers. This is noteworthy considering that allied health practice is grounded in community-based models of care.²⁸ Interestingly, this is a subscale where differences were noted across professions within our sample, with social workers, who typically work in community-based models of care, scoring significantly higher than some other allied health groups, and having a similar score to the benchmarked samples (i.e., current sample SW mean = 6.35; benchmark mean 6.29 - 6.42). The Community Knowledge domain assesses awareness of local support systems, referral pathways, culturally appropriate services, and sources of emotional and practical assistance. Participants reported limited confidence in knowing who could help them, suggesting that while allied health clinicians often work within the community in face-to-face roles,²⁸ they may not have the broader networks and supports that underpin effective end-of-life care. Death literacy evolves through lived experience and engagement with death and dying.³⁶

An interesting finding of this cohort was the relatively late mean age of entry into the allied health professions (32 years), suggesting that many clinicians commenced practice after substantial life experience. It is likely that many clinicians in this study had already been exposed to ageing, family caregiving, and the realities of chronic or terminal illness and possibly death.^29,53 This late-entry profile may align with broader research on mid-life career transitions,^54,55 suggesting that pathways into allied health may be shaped by flexible study options, shifts in career direction or meaning, changes in caregiving roles, or life-changing events such as illness, injury, or death.⁵⁶ Although national workforce data indicate that, in 2024, registered and employed allied health clinicians in Australia are typically in their late 30s to early 40s,⁵⁷ these figures cannot be used to infer years in practice because age at first registration is not reported. In contrast, the current sample includes the age of entry, allowing clearer insight into the timing of professional commencement. This age distinction matters conceptually: clinicians entering practice in their early 30s or later are more likely to have accumulated encounters with death and dying,⁵⁸ experiences that may contribute to the development of death literacy.

Strengths and limitations

This study had several limitations that should be considered when interpreting the findings. A total of 144 clinicians participated, representing roughly 15% of the estimated 980 eligible allied health professionals in the region. While no universally accepted benchmarks for allied health surveys exist, this response rate aligns with consistently reported rates for clinician-focused surveys and is considered appropriate. Physician survey response rates typically range from 10–20%, and although derived from medical practitioners, these benchmarks are commonly applied to other clinician surveys and provide a conservative guide.⁴¹

The use of convenience and snowball sampling enabled efficient recruitment across professional networks but limits the ability to determine a true response denominator or ensure representativeness, potentially introducing self-selection bias.⁵⁹ These findings should therefore be interpreted with caution rather than as population prevalence estimates. Participants who are comfortable discussing death and dying may have been more likely to complete the survey than those who find these conversations uncomfortable.⁶⁰ Benchmarking against national community survey data is also limited by differences in sampling frames and demographic composition, which restricts the comparability of mean scores. As a cross-sectional study, the design captures clinicians’ knowledge and attitudes at a single point in time and cannot establish causal relationships between variables. Additionally, all data were self-reported, which may be influenced by social desirability, recall limitations, or participants’ perceptions of their own competence.⁶¹ Professional subgroup sizes were uneven, and professions with fewer than nine participants were combined into an “Other” category for analysis. The heterogeneous nature of this grouped category may have obscured profession-specific differences and should be considered when interpreting profession-based comparisons. While benchmarking against national datasets provides valuable context, differences in sampling strategies, sample size, and demographic composition between the present study and the benchmark datasets may affect comparability.^59,62

In relation to the DLI-R measurement tool. The study utilised an Australian online research panel to develop national benchmark data, resulting in a non-probability sample with potential self-selection bias, particularly among individuals more comfortable with death-related topics. Although stratified sampling was used to mitigate this, and consistency between the 2019 and 2023 benchmarks provides some reassurance, the sample may still over-represent individuals with higher death literacy. Further research using alternative designs, including behavioural measures and case studies, is needed to strengthen the understanding of the construct. These considerations should be taken into account when interpreting the findings and applying them to policy or educational initiatives.³⁶

Future research directions/implications for professional education

These findings reinforce the need for targeted education and policy support to strengthen death literacy across allied health disciplines. Despite growing recognition, death literacy within allied health remains underdeveloped and under-evaluated.¹ This study provides a foundation for change by measuring current levels, benchmarking results, identifying influencing factors, and informing education that translates conversation into coordinated action. It sets the stage for co-designed programs that integrate practical skills, referral pathways, and cultural safety into both undergraduate curricula and ongoing professional development.

Conclusion

Overall, this study suggests that allied health clinicians bring meaningful discipline-specific strengths to death literacy, with scores higher than those reported in the general population. However, their scores remain lower than those of health professionals and volunteers working in end-of-life care, indicating ongoing gaps in confidence, role clarity, and system navigation when responsibilities extend beyond discipline-specific practice. These findings point to the value of targeted and practical death literacy education that builds on existing strengths while addressing areas of uncertainty. Strengthening this capability will likely require coordinated efforts across institutions and training pathways to better support both current and future allied health clinicians. While personal experience with death can shape understanding, it cannot replace clear role expectations, structured learning opportunities, and support for navigating integrated care pathways. Without continued investment in death literacy education, allied health clinicians may remain underprepared for the end-of-life responsibilities they increasingly encounter.

Footnotes

Acknowledgements

Central Coast Local Health District. University of Newcastle, The Australian Government, Hunter New England and Central Coast Primary Health Network. The authors would like to sincerely thank the allied health clinicians who generously contributed their time and experiences to participate in this study.

ORCID iDs

Erin Bonvino

Kerrie Noonan

Lisa Mackenzie

Ethical considerations

Ethics approval was obtained from the Central Coast Local Health District Research Office (1024-124C) and the University of Newcastle Human Research Ethics Committee (HREC R2024-0087).

Consent to participate

Informed consent was provided prior to survey commencement and obtained through voluntary participation in the online survey.

Consent for publication

Informed consent was provided prior to survey commencement and obtained through voluntary participation in the online survey. No identifiable participant data were collected or reported.

Author contributions

All authors made substantial scholarly contributions to the work and formally approved the final manuscript for submission. Erin Bonvino: Conceptualisation, Methodology, Investigation, Data curation, Formal analysis, Funding acquisition, Project administration, Resources, Writing – original draft, Writing – review & editing. Jacinta Hensby: Conceptualisation, Methodology, Investigation, Formal analysis, Funding acquisition, Project administration, Writing – review & editing. Zoi Triandafilidis: Conceptualisation, Methodology, Investigation, Formal analysis, Funding acquisition, Supervision, Writing – review & editing. Kerrie Noonan: Conceptualisation, Methodology, Investigation, Formal analysis, Writing – review & editing. Karen Hutchinson: Conceptualisation, Methodology, Investigation, Writing – review & editing. Michelle Kelly: Formal analysis, Supervision, Writing – review & editing. Christopher Oldmeadow: Formal analysis, Writing – review & editing. Jeanette Hurl: Investigation, Writing – review & editing. Amye Fraser: Investigation, Writing – review & editing. Charles Broadfoot: Funding acquisition, Investigation, Writing – review & editing. Lisa Mackenzie: Conceptualisation, Methodology, Investigation, Data curation, Formal analysis, Funding acquisition, Supervision, Writing – review & editing.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The work was supported by Central Coast Local Health District Caring for our Future Research Grant. New South Wales Regional Health Partners 2023 Consumer and Community Involvement (CCI) Grant. Hunter New England and Central Coast Primary Health Network Grant Funding. University of Newcastle Additional Funding, Statistical Support Grant. This research was supported by the Commonwealth support through an Australian Government Research Training Program Scholarship.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data availability statement

Data may be made available subject to appropriate ethical and legal considerations and approvals.*

References

Noonan

Horsfall

Leonard

, et al. Developing death literacy. Progress in Palliative Care 2016; 24: 160108221646007–160108221646035. https://doi.org/10.1080/09699260.2015.1103498

Rawlings

Winsall

Miller-Lewis

, et al.

Will voluntary assisted dying see new social rituals evolving?

Australian Nursing & Midwifery Journal 2021; 27: 16–19.

Tieman

Miller-Lewis

Rawlings

, et al. The contribution of a MOOC to community discussions around death and dying. BMC Palliative Care 2018; 17: 31. https://doi.org/10.1186/s12904-018-0287-3

Sutherland

Dying Well-Informed: The Need for Better Clinical Education Surrounding Facilitating End-of-Life Conversations. Yale Journal of Biology and Medicine 2019; 92: 757–764. 20191220.

Park

Kim

Jang

, et al. Community-based death preparation and education: A scoping review. Death Studies 2023; 47: 221–230. 20220311. https://doi.org/10.1080/07481187.2022.2045524

Direct

Health

. Preparing for death at home. https://www.healthdirect.gov.au/preparing-for-a-death-at-home

Services Australia . What to do when someone dies. https://www.servicesaustralia.gov.au/what-to-do-when-someone-dies?context=60101 (2025), accessed 20/05/2025.

HammondCare. Last Days . Navigating death and dying. https://www.hammond.com.au/resource-hub/demystifying-death-last-days (2023).

Deravin

Anderson

Croxon

. Are newly graduated nurses ready to deal with death and dying? - A literature review. Nursing and Palliative Care 2016; 1: 89–93. https://doi.org/10.15761/NPC.1000123

10.

The University of Melbourne . Death education prepares students for tough realities of working in the medical sector. https://www.unimelb.edu.au/newsroom/news/2024/august/death-education-prepares-students-for-tough-realities-of-working-in-the-medical-sector (2024).

11.

Fien

Plunkett

Fien

, et al. Challenges and facilitators in delivering optimal care at the End of Life for older patients: a scoping review on the clinicians’ perspective. Aging Clinical and Experimental Research 2021; 33: 2643–2656. https://doi.org/10.1007/s40520-021-01816-z

12.

Leonard

Noonan

Horsfall

, et al. Developing a death literacy index. Death Studies 2022; 46: 2110–2122. https://doi.org/10.1080/07481187.2021.1894268

13.

Death Literacy Institute . Death literacy helps us understand and act upon our end-of-life and deathcare options. https://www.deathliteracy.institute/ (2021), accessed 29/05/2024.

14.

Sallnow

Smith

Ahmedzai

, et al. Report of the Lancet Commission on the Value of Death: bringing death back into life. The Lancet (British edition) 2022; 399: 837–884. https://doi.org/10.1016/S0140-6736(21)02314-X

15.

Knaul

Farmer

Krakauer

, et al. Alleviating the access abyss in palliative care and pain relief—an imperative of universal health coverage: the Lancet Commission report. The Lancet 2018; 391: 1391–1454. https://doi.org/10.1016/S0140-6736(17)32513-8

16.

Zimmermann

Wong

Swami

, et al. Public knowledge and attitudes concerning palliative care. BMJ Supportive & Palliative Care 2024; 14: e1085–e1095. https://doi.org/10.1136/bmjspcare-2021-003340

17.

Kaiser Family Foundation . Serious Illness in Late Life: The Public's Views and Experiences: Kaiser Family Foundation Reports; 2019 SRI R5710-272.14091. 2019.

18.

Teixeira

Hanvey

Tayler

, et al. What do Canadians think of advanced care planning? Findings from an online opinion poll. BMJ Supportive & Palliative Care 2015; 5: 40–47. https://doi.org/10.1136/bmjspcare-2013-000473

19.

Hodge

Kallis

, et al. Exploring perceived barriers to palliative and end of life care provision in South-West England: bringing together the perspectives of professionals, patients, and families. Frontiers in Sociology 2024; 9: 1488688: 20250120. https://doi.org/10.3389/fsoc.2024.1488688

20.

Nelson

Byrne

Carson-Stevens

, et al. Public attitudes to death and dying in the UK, 2021.

21.

Graham-Wisener

Toner

Leonard

, et al. Psychometric validation of the death literacy index and benchmarking of death literacy level in a representative uk population sample. BMC Palliative Care 2022; 21: 145. https://doi.org/10.1186/s12904-022-01032-0

22.

Che

Zhu

, et al. The Death Literacy Index: translation, cultural adaptation, and validation of the Chinese version. Frontiers in Public Health 2023; 11: 1140475. https://doi.org/10.3389/fpubh.2023.1140475

23.

Leonard

Noonan

Horsfall

, et al. Death Literacy Index: A report on its development and implementation, 2020.

24.

Setia

. Methodology Series Module 3: Cross-sectional Studies. Indian Journal of Dermatology 2016; 61: 261–264. https://doi.org/10.4103/0019-5154.182410

25.

Grimes

Schulz

. Descriptive studies: what they can and cannot do. Lancet 2002; 359: 145–149. https://doi.org/10.1016/s0140-6736(02)07373-7

26.

Coşkun

Bağçivan

. Does Being a Healthcare Professional Affect Death Literacy? Balıkesir Sağlık Bilimleri Dergisi 2025; 14: 383. https://doi.org/10.53424/balikesirsbd.1653258

27.

Holland

McPherson

Busing

, et al. Clinical Utility of the Death Literacy Index in Canada: A Mixed-Methods Study. Omega (Westport) 2025; 2025: 302228251359371: 20250730. https://doi.org/10.1177/00302228251359371

28.

Australian Government Department of Health AD . Allied health care. https://www.health.gov.au/topics/allied-health-care (2025).

29.

Tieman

Morgan

Jones

, et al. Allied health professionals’ contribution to care at end of life in aged care settings. Australian Journal of Primary Health 2023; 29: 341–348. https://doi.org/10.1071/PY22178

30.

Pestaner

. End-of-Life Care: Forensic Medicine v. Palliative Medicine. The Journal of Law, Medicine & Ethics 2003; 31: 365–376. https://doi.org/10.1111/j.1748-720X.2003.tb00100.x

31.

Disler

Henwood

Luckett

, et al. Knowledge and Attitudes of Allied Health Professionals Towards End-Of-Life and Advance Care Planning Discussions With People With COPD: A Cross-Sectional Survey Study. American Journal of Hospice and Palliative Medicine® 2023; 40: 856–871. https://doi.org/10.1177/10499091221134777

32.

Lewis

Triandafilidis

Curryer

, et al. Models of care for people with dementia approaching end of life: A rapid review. Palliative Medicine 2023; 37: 915–930. https://doi.org/10.1177/02692163231171181

33.

Rebbeck

. Palliative care needs assessment report. Hunter New England and Central Coast Primary Health Network, 2023.

34.

McGlinchey

Early

Mason

, et al. Updating international consensus on best practice in care of the dying: A Delphi study. Palliative Medicine 2023; 37: 329–342. https://doi.org/10.1177/02692163231152523

35.

Zou

Song

Yao

. Chinese version of the nursing information literacy scale: translation, cultural adaptation, and validation. BMC Nursing 2025; 24: 1416–1419. https://doi.org/10.1186/s12912-025-04060-2

36.

Noonan

Grindrod

Shrestha

, et al. Progressing the Death Literacy Index: the development of a revised version (DLI-R) and a short format (DLI-9). Palliative Care and Social Practice 2024; 18: 26323524241274806, 26323524241274806. 20240917. https://doi.org/10.1177/26323524241274806

37.

Göktuna

Dağcan Şahin

Gürol Arslan

. Death Literacy and Related Factors Among Nursing Students in Turkey: The Role of Spiritual Well-Being. Journal of Religion and Health 2025; 64: 4278–4292. https://doi.org/10.1007/s10943-025-02421-4

38.

Australian BoS . Central Coast (NSW) Latest release 2021 Census All persons QuickStats. https://abs.gov.au/census/find-census-data/quickstats/2021/LGA11650 (2021).

39.

Kidd

Colley

Dennis

. Surveying Allied Health Professionals Within a Public Health Service: What Works Best, Evaluation & the Health Professions 2021; 44: 226–234. Paper or Online? 20190828. https://doi.org/10.1177/0163278719870568

40.

Bonevski

Magin

Horton

, et al. Response rates in GP surveys - trialling two recruitment strategies. Like Dislike The Australian Family Physician (AFP) 2011; 40: 427–430.

41.

VanGeest

Johnson

Welch

. Methodologies for improving response rates in surveys of physicians: a systematic review. Evaluation & the Health Professions 2007; 30: 303–321. https://doi.org/10.1177/0163278707307899

42.

Donkin

Henry

Kercher

, et al. Effective Recruitment or Bot Attack? The Challenge of Internet-Based Research Surveys and Recommendations to Reduce Risk and Improve Robustness. Interactive Journal of Medical Research 2025; 14: e60548. https://doi.org/10.2196/60548

43.

Harris

Taylor

Minor

, et al. The REDCap consortium: Building an international community of software platform partners. Journal of Biomedical Informatics 2019; 95: 103208. https://doi.org/10.1016/j.jbi.2019.103208

44.

Harris

Taylor

Thielke

, et al. Research electronic data capture (REDCap)—A metadata-driven methodology and workflow process for providing translational research informatics support. Journal of Biomedical Informatics 2009; 42: 377–381. https://doi.org/10.1016/j.jbi.2008.08.010

45.

R Core Team . R: A language and environment for statistical computing. : R Foundation for Statistical Computing, 2025.

46.

Aged Care Research & Industry Innovation Australia . Communication at end of life. https://www.ariia.org.au/knowledge-implementation-hub/palliative-care-and-end-of-life/palliative-care-and-end-life-evidence-themes/communication-end-life (2023).

47.

Standing

Patterson

Dalkin

, et al. A critical exploration of professional jurisdictions and role boundaries in inter-professional end-of-life care in the community. Social Science & Medicine 2020; 266: 113300. https://doi.org/10.1016/j.socscimed.2020.113300

48.

Reeves

O'Shea

M-C

Ash

, et al. Developing palliative care skills in undergraduate allied health students using an interprofessional simulation-based learning experience. Focus on Health Professional Education 2024; 25: 36–52. https://doi.org/10.11157/fohpe.v25i2.718

49.

Central Coast Local Health District . Palliative Care and End of Life Care Review. https://www.cclhd.health.nsw.gov.au/wp-content/uploads/CCLHD_PalliativeCareEndofLifeCareReview2017.pdf (2017).

50.

Australian Healthcare Associates . Exploratory Analysis of Barriers to Palliative Care – Literature Review. , 2019.

51.

Australian Commission on Safety and Quality in Health Care . Multidisciplinary collaboration 2025. https://www.safetyandquality.gov.au/publications-and-resources/resource-library/nsqpch-standards-guide-healthcare-services/clinical-safety-standard/comprehensive-care/multidisciplinary-collaboration (accessed 27/01/2026).

52.

Melekis

. Improving Death Literacy Through Interdisciplinary Research-Practice Partnerships and Experiential Learning. Innovation in Aging 2025; 9: igaf122.2096. https://doi.org/10.1093/geroni/igaf122.2096

53.

Marks

Jun

Song

. Death of Parents and Adult Psychological and Physical Well-Being: A Prospective U.S. National Study. Journal of Family Issues 2007; 28: 1611–1638. https://doi.org/10.1177/0192513x07302728

54.

Ferraro

Susan

Williamson

. Midlife Transition Decision Processes and Career Success: The Role of Identity, Networks and Shocks, 2006.

55.

Duberley

Carmichael

Szmigin

. Exploring Women's Retirement: Continuity, Context and Career Transition. Gender, work, and organization 2014; 21: 71–90. https://doi.org/10.1111/gwao.12013

56.

National Careers Institute (NCI) . Mid-Careerresearch. DoEaW

(ed). The Australian Government, 2021.

57.

Australian Government . Summary Statistics, Allied Health, State. https://hwd.health.gov.au/resources/data/summary-state.html (2025).

58.

Kippen

. By what age do people experience familial death, and how has that changed over time? Australian Population Studies 2022; 6: 31–36. https://doi.org/10.37970/aps.v6i1.102

59.

Groves

Fowler

Couper

, et al. Survey methodology. 2nd ed. Wiley, 2009.

60.

Keusch

. Why do people participate in Web surveys? Applying survey participation theory to Internet survey data collection. Management Review Quarterly 2015; 65: 183–216. https://doi.org/10.1007/s11301-014-0111-y

61.

Podsakoff

MacKenzie

Lee

J-Y

, et al. Common Method Biases in Behavioral Research: A Critical Review of the Literature and Recommended Remedies. Journal of Applied Psychology 2003; 88: 879–903. https://doi.org/10.1037/0021-9010.88.5.879

62.

Benchimol

Smeeth

Guttmann

, et al. The REporting of studies Conducted using Observational Routinely-collected health Data (RECORD) statement. Zeitschrift für Evidenz, Fortbildung und Qualität im Gesundheitswesen 2016; 33: pp. 115–116. https://doi.org/10.1016/j.zefq.2016.07.010