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Abstract

Background:

Death literacy can act as a public health asset that enables individuals and communities to navigate end-of-life care with confidence and competence. It encompasses knowledge, skills, experiential learning, and social action. In the United Kingdom, low levels of death literacy may hinder equitable care and contribute to avoidable harms.

Aims:

The study had three aims: (i) to assess death literacy in the East of England using the Death Literacy Index (DLI) to inform applied policy research; (ii) to explore sociodemographic and experiential factors associated with DLI scores; and (iii) to examine how various knowledge domains function as community assets or indicate areas in need of targeted intervention.

Methods:

We conducted a cross-sectional survey with adults aged 18 years and over across six areas in the East of England. The survey included sociodemographic questions, the 29-item DLI, and free-text responses. Quantitative analysis used ordinary least squares regression to identify associations between DLI scores and covariates. Qualitative data were analysed using a framework approach, integrating the Quintuple Aim for health care improvement and DLI domains, including an added Relational Knowledge domain to the death literacy framework dimension for the purposes of the analysis.

Results:

Of 1725 respondents, 1224 completed the survey. The mean DLI score was 5.8/10. Experiential Knowledge was the highest scoring DLI domain (mean = 7.3/10); Factual Knowledge scored lowest (mean = 4.7/10). End-of-life training and recent bereavement were strong predictors of higher DLI scores. Qualitative themes highlighted under-resourced support systems, need for improved coordination of statutory services, and importance of Relational and Community Knowledge.

Conclusion:

The DLI can act as a pragmatic tool for guiding civic action and informing public health strategy. Mobilising death literacy requires relational approaches, community engagement, and equity-focused commissioning. Recognising death literacy as both a public health asset and a civic capability can contribute to population health and support sustainable end-of-life care systems. Social capital and collective action are essential to mobilising death literacy at scale.

Plain language summary

Building confidence and community support for end-of-life care: Insights from the Death Literacy Index survey across the East of England

Death literacy means having the knowledge and confidence to make informed choices about end-of-life care, both for ourselves and others. This research used the Death Literacy Index to survey adults in the East of England, aiming to understand how well communities are equipped to handle issues around dying, death, and bereavement.

Results show that while many people have valuable personal experience, there are still significant gaps in knowledge and community support. Those who have received training or have cared for someone at the end-of-life tend to feel more confident and capable. The study linked improved community connections, clear communication with health and care professionals, and easy-to-access information to better death literacy.

Participants called for better resources, more public education, and easier access to support services. These findings can help local health teams and community groups design practical support, training, and education programmes that build confidence and understanding around end-of-life care. The research recommends that health services work closely with communities to build trust, share knowledge, and create supportive environments for people facing end-of-life situations. By strengthening death literacy, we can help ensure that everyone receives compassionate, informed care when it matters most. However, it is important to note that most participants were women and from White British backgrounds, which may limit how well the findings reflect the views and experiences of the wider population.

Keywords

death literacy Death Literacy Index survey population health management public health palliative care end-of-life care bereavement support Quintuple Aim social capital collective action community engagement compassionate communities

Introduction

Death literacy is defined as, ‘a set of knowledge and skills that make it possible to gain access to, understand, and act upon end-of-life and death care options’ (p. 32).¹ When viewed through a public health lens,^2–5 promoting death literacy is a necessary component of population health management.⁶

Conceptually, death literacy is analogous to health literacy. Death literacy is dynamic and interactive, emphasising the sharing of experiential knowledge across networks of care.^7,8 This sharing serves relational and emotional functions by reducing avoidable harms that can accompany dying and grieving, such as loneliness and social isolation.⁹ Death literacy acts as a public health asset with social value.^10,11

Death literacy represents action-focused ‘know how’ that is socially situated (embedded in specific cultures and places) and operates at both individual and population levels.¹ Understanding its impact therefore requires evaluating both of these contexts. For example, context-specific death literacy attuned to local needs can promote social cohesion (strong social connectedness) and salutogenesis (promotion of health). Since the emergence of the term death literacy, several related concepts have evolved, most notably grief literacy, which elaborates on addressing social understanding and responses to grief and bereavement.¹²

Death Literacy Index

Death literacy can be measured with the internationally validated Death Literacy Index (DLI), a 29-item scale. It covers four knowledge domains: Factual, Practical (including Talking support and Hands-on care subscales), Experiential, and Community (including Accessing help and Community support subscales). Each domain is scored separately and then aggregated. Knowledge domain scores along with the total death literacy score are calculated using a scaled mean out of 10.¹³ A maximum score denotes high levels of confidence and competence across all four knowledge domains. There have been subsequent iterations of the DLI with adjustments to language and length,¹⁴ and international translations.^15–17

International studies report average DLI scores ranging from 4.8 to 6.9 out of 10,^15–20 with the first UK survey (2022) showing a mean of 4.76.¹⁸ Higher death literacy has been associated with older age^16,18,21 and with end-of-life (EoL) experiences such as providing EoL care, working in health care/palliative care, or volunteering in EoL support roles.^{14,16,18–20,22,23}

Global context

Globally, ageing populations are increasing EoL care needs, with annual deaths projected to rise by over 50% from 61 million in 2023 to 92 million by 2050.²⁴ Public engagement is essential to sustaining progress in EoL care,^25,26 particularly as health systems struggle to meet needs of older people with complex chronic conditions.^27,28 The Lancet Commission on the Value of Death highlighted over-medicalisation of dying, especially in high-income countries, where families and communities have been marginalised.³ It called for a ‘realistic utopia’ in which death literacy empowers individuals and communities to navigate complex death systems and support population well-being.^3,10,25,29

Known challenges to mobilising death literacy at a population level

Despite growing need, significant barriers remain. Global uncertainties following the COVID pandemic, international conflict, economic instability, climate change, and declining trust in institutions have formed an ‘uncertainty complex’ that undermines cooperation and preparedness for collective action.^30–32 Societies that are reluctant to engage with death create a social dilemma, echoing Ostrom’s concept of balancing self-interest with collective good.^33,34 Individuals may avoid EoL discussions or contributing to caregiving in a community context, despite benefiting from community support.^33,34 Health systems must address avoidant behaviours and increase opportunities for meaningful participation to enable collective engagement and community action.

National context

UK health policy aims to shift care from hospital to community, analogue to digital, and reactive to preventative.³⁵ This aligns with the Quintuple Aim for population health management (Figure 1): (i) improve the health and well-being of the population; (ii) improve resource use; (iii) enhance experience of receiving care; (iv) increase well-being and engagement of the workforce (including volunteers); and (v) advance health and care equity.³⁶ Enhancing death literacy supports all five aims and highlights the societal cost of low preparedness versus the benefits of confident, informed communities.²⁹ National guidance, including the Ambitions for Palliative and EoL Care framework, promotes community partnerships, particularly through Ambition Six: Each community is prepared to help.^37,38 This ambition encourages local systems to build capacity by improving public understanding, confidence, and participation in EoL and bereavement care.³⁸ It frames EoL care as a shared responsibility.

Figure 1.

The Quintuple Aim for health care improvement.³⁶

Building social capital through bonding, bridging, and linking networks that foster trust, reciprocity, and reputation is essential to realising Ambition Six.^{33,34,39–41} National guidelines reinforce this ambition through Integrated Care Systems (ICSs), regional partnerships of National Health Service (NHS) bodies, local authorities, and community groups.^42,43 ICSs are expected to ‘contribute to and encourage public involvement in developing compassionate, understanding communities’ (p.14),⁴² yet many have struggled to implement this, underscoring the social dilemma (balancing public value with perceived individual cost) of community engagement around EoL care.^34,44

Regional context

This study was conducted in the East of England (EoE) as part of a funded research initiative. The EoE has approximately 6.4 million residents and one of the UK’s oldest populations.^45,46 Life expectancy is above average (84 for women, 80 for men),⁵⁰ and the population is predominantly White British (85%), with urban pockets of increased diversity.⁴⁷ In 2024, the region accounted for over 60,800 deaths: more than 10% of all deaths in England and Wales.⁴⁸ Despite relative affluence, the EoE faces persistent inequalities, particularly in rural and coastal areas where poor transport and digital access limit service availability and social cohesion.^49,50

Aims

This cross-sectional survey with supplementary qualitative component had three aims: (i) to assess death literacy across the EoE using the DLI to inform applied policy research; (ii) to explore sociodemographic and experiential factors associated with DLI scores; and (iii) to examine how various DLI knowledge domains function as community assets or indicate areas in need of targeted health-promotion and harm-reduction strategies.

Methods

Study design, population, and setting

We employed a cross-sectional survey design with a supplementary qualitative component. Adults aged 18 years or over residing in the six NHS ICS localities in the EoE region were eligible to participate: (i) Bedford, Luton, and Milton Keynes; (ii) Cambridgeshire and Peterborough; (iii) Hertfordshire and West Essex; (iv) Mid and South Essex; (v) Norfolk and Waveney; and (vi) Suffolk and North-east Essex. People under the age of 18 years and those living outside of the EoE region were excluded from the study.

The survey comprised 40 questions divided into three sections. The first 10 questions gathered participant characteristics, including sociodemographic, geographic, cultural, health, and socioeconomic information. They also included questions exploring personal and professional experiences with bereavement and EoL care. These were followed by the 29-item DLI (DLI-29), validated in a UK context,¹⁸ structured into four knowledge domains. As an optional supplementary qualitative component, participants were invited to suggest ways to enhance EoL care knowledge and skills locally using a free-text response. At the end of the survey, participants were presented with their total DLI score and each domain score. All scores were presented alongside UK benchmark data to allow the participant to make a comparison.¹⁸ Participants were then directed to further death literacy information resources. An abridged copy of the survey is given in Supplemental File 1. The survey was piloted with support from the NHS EoE Strategic Clinical Network (n = 5 pilot responses). We prepared the article in accordance with the CROSS (Consensus-Based Checklist for Reporting of Survey Studies) guidelines.⁵¹

Data collection, sampling, and reporting

An invitation to the web-based survey was advertised via social media (X, formerly Twitter). The survey was hosted using Qualtrics XM (Qualtrics, Provo, UT, USA) between 20th October 2023 and 16th August 2024. An extended duration was chosen to allow all ICS areas time to meaningfully participate. Data were collected anonymously. A convenience sample was used with no formal sample size calculation. Anyone accessing the survey self-assessed their eligibility criteria. The home page introduced the study. Participants were asked to read the linked information sheet that was approved in the ethical review process (further details below) before providing their consent to begin the survey using a checkbox. Each survey response was assigned a unique Response Identification code. Qualtrics included a Q_RecaptchaScore to detect possible automated responses.

Statistical analysis

Univariate associations and ordinary least squares regression models were used to examine associations between death literacy and covariates. Within the regression models, bootstrapping with 5000 replications was used to produce 95% confidence intervals and associated p values. Outcomes analysed included the total DLI score and the four knowledge domain scores, all rescaled out of 10.

Covariates included: sociodemographic data (age, gender, sexual orientation), living area, main language, ethnicity, education, and employment; health status (current status and presence of long-term/life-limiting conditions); and EoL experience (through training, or personal experience with others at EoL). Cross-tabulations, and associated measures of association, were used to select between covariates expected to have high correlations to reduce potential for collinearity in the regressions (see Supplemental File 2). Consequently, ‘volunteering or professional experience in EoL care’ was excluded from the analysis; all other variables were included. However, as a sensitivity analysis, we repeated the total DLI regression, replacing the training variable with a form of this variable. We utilised a complete-case statistical analysis conducted in Stata MP 18.⁵²

Framework approach to qualitative data analysis

We applied framework analysis to the free-text responses due to its systematic and adaptable approach and relevance to applied policy research.⁵³ It incorporates both deductive reasoning (applying a pre-existing or developed framework to code data) and inductive reasoning (generating new themes or patterns through data-driven analysis and interpretation).⁵³ It was used here to determine salience and connections in the qualitative data to guide contextual and strategic policy design for population health. The framework approach is not aligned with a particular epistemological viewpoint and takes a broadly realist ontological stance.⁵⁴ The five-stage process involves: (i) Familiarisation; (ii) Identifying and developing a conceptual framework; (iii) Indexing data according to the framework; (iv) Charting (presenting evidence summaries); and (v) Interpretation (drawing associations between key themes and concepts identified in the dataset).⁵³

Familiarisation and identifying a conceptual framework

The first two stages of the framework approach occurred iteratively. Initially, we assessed how well the data fit with the separate elements of the Quintuple Aim.³⁶ The data mapped adequately with strongest alignment with ‘Enhancing the experience of care’ and ‘Improving population health’. We then explored how well the data mapped onto the four knowledge domains in the DLI: Practical, Factual, Experiential, and Community. The qualitative data mapped onto all DLI knowledge domains.

To improve the fit of the framework, we added a further death literacy domain for the purposes of the analysis: Relational Knowledge. Relational Knowledge acted as a cross-cutting domain reflecting the relevance of death literacy at an individual and collective level. It captured emotional, interpersonal, and communicative understandings about navigating death and dying with others. The justification for adding Relational Knowledge was to highlight the social action feature of death literacy more explicitly.¹ There was a connection with other knowledge domains in the DLI, especially Practical Knowledge involving ‘Talking support’ and ‘Hand-on care’, and Community knowledge involving ‘Accessing support’ and ‘Community groups’. However, Relational Knowledge reflected the dynamic features of death literacy mobilisation involving interdependent human relationships and social interaction.¹

We synthesised the final analytical framework by integrating the Quintuple Aim with the death literacy dimension (including Relational Knowledge), developing a cross-tabulated structure that enabled us to systematically examine the intersection between knowledge, skills, capabilities and values, with internationally accepted aims for health system improvement.³⁶ The synthesised framework was judged as a good fit for the objectives of the study and provided a clear construct to code the qualitative data.

Indexing and charting

Using a deductive approach, one member of the research team (G.P.) reviewed the dataset multiple times and then indexed using the synthesised framework. Responses ineligible for analysis were quantified and excluded (Figure 2). A second member of the research team (J.B.) independently coded a subset (25%) of transcripts. We compared codes to ensure consistency in the interpretation. We generated evidence summaries using a frequency matrix, and a cross-tabulated chart illustrating the intersection between death literacy domains and Quintuple Aim domains using RAWGraphs.⁵⁵ Table 1 lists the indexing framework dimensions and domains. Participant comments that contained references to multiple indexing domains were categorised accordingly.

Figure 2.

Participant flow diagram for statistical analysis.

Table 1.

Indexing framework.

Framework dimension	Framework domain	Indexing description
Quintuple Aim	Improve population health	Improving the overall health and well-being of individuals and communities, including early identification, prevention, and support for end-of-life care and bereavement needs
	Enhance experience of receiving care	Quality, comfort, dignity, emotional support, or meaningful engagement in care from the person or family/caregiver perspective
	Improve resource use/reduce costs	Financial inefficiencies, duplication, delays, or burdens that could be avoided with better processes or systems
	Improve staff/volunteer experience	Workload, work-related stress, system pressures, or training gaps from the perspective of staff or volunteers
	Advance equity	Inequities in access, outcomes, or resources due to location, income, culture, age, gender, illness, or ability
Death literacy	Practical knowledge	Know-how about what to do with ‘Hands-on care’ and ‘Talking support’ for palliative and end-of-life care and bereavement
	Experiential knowledge	Knowledge and skills gained through lived experience of death, dying, caregiving, or bereavement.
	Factual knowledge	Legal, medical, procedural, and institutional knowledge about end-of-life care and processes following a death
	Community knowledge	Awareness of and access to local networks, support services, and community care resources
	Relational knowledge (connecting, communicating, and collaborating)	Emotional, interpersonal, and communication details relating to navigating death, dying, and loss with others

Thematic analysis and interpretation

To complement and enhance the interpreted meaning across the dataset, two members of the research team (J.B. and G.P.) coded free-text responses independently within NVivo software (QSR International: Burlington, Massachusetts, USA). After comparing coding matrices, we generated themes inductively from the data.⁵⁶ We created a visual summary of the thematic analysis using the Flourish data visualisation platform (Canva, London, UK). Participant comments that applied to more than one of the generated themes were categorised accordingly. We then generated recommendations for contextually sensitive, strategic, localised action at a policy and community level in line with population health management and Ambition Six: Each community is prepared to help.^6,38

Results

Participant characteristics

We first explored the characteristics of the survey participants, followed by an analysis of DLI scores and their relationship to key demographic and experiential variables. Among the 1725 participants who initiated the survey, 1224 (71%) completed it and formed the focus of our analysis. Unless otherwise specified, percentages take 1224 as their denominator. Figure 2 details exclusions and missing data.

Table 2 summarises participant characteristics: most were women (84%), and the majority were aged 41–70 years (69%). The most selected ethnicity was ‘White’ (90%), and English was the main language for the vast majority of participants (98%). The largest group of respondents were from Norfolk and Waveney (38%); mapping of response rate by outward code of the postcode is shown in Figure 3. Most participants did not have formal training (58%) and just under half had no personal experience with EoL care (45%).

Table 2.

Participant characteristics (n = 1224).

Participant characteristics	n	%
N	1224	100
Gender
Man or other gender^a	192	16
Woman	1032	84
Age (years)
18–30	88	7
31–40	149	12
41–50	254	21
51–60	334	27
61–70	260	21
71–80	119	10
Over 80	20	2
Area
Bedfordshire, Luton, and Milton Keynes	93	8
Cambridgeshire and Peterborough	115	9
Hertfordshire and West Essex	127	10
Mid and South Essex	147	12
Norfolk and Waveney	469	38
Suffolk and North-east Essex	273	22
Main language
English	1201	98
Other language^b	23	2
Sexual orientation
Straight or heterosexual	1083	88
Other sexual orientation^c	141	12
Ethnic group
White	1103	90
Other ethnic group^d	121	10
Highest educational qualification achieved by parent(s)^e
No qualifications	273	22
Below degree-level qualification	438	36
Degree-level qualification or above	513	42
Employment status
Employed^f	852	70
Unemployed or other employed status^g	302	25
Retired	70	5
General health status
Very poor	16	1
Poor	54	4
Fair	269	22
Good	598	49
Very good	287	23
Diagnosed long-term or life-limiting condition(s)
No	789	64
Yes	435	36
End-of-life training experience
No	716	58
Yes	508	42
Volunteering or professional experience^h
No experience	537	44
Experience with grief and loss support only	109	9
Experience with EoL care only	104	9
Experience with both grief and loss, and EoL support	470	39
EoL personal experience
No personal experience	545	45
Personal experience with someone who died in the past 2 years only	349	29
Personal experience with someone currently at EoL only	151	12
Personal experience with both someone currently at EoL and someone who died in the past 2 years	179	15

EoL: end-of-life.

Due to small sample sizes, participants: ^aIdentifying as a gender other than man or women were grouped together with men; ^bReporting their main language as any language other than English were grouped together under ‘Other main language’; ^cIdentifying with sexual orientations other than ‘Heterosexual/straight’ were grouped together under ‘Other sexual orientation’; ^dReporting ethnicities other than ‘White’ were grouped together under ‘Other ethnicity’; ^eHighest educational qualification achieved by either or both parent(s); ^fIncludes those in self-, part-time, and full-time employment; ^gIncludes students and those unable to work due to illness; ^hSample size reduces to n = 1220 due to missing data.

Figure 3.

East of England map showing number of respondents (n = 1224) by area ‘outward code’ of respondent postcode.

Table 3 summarises participants’ unadjusted DLI knowledge domain and total DLI scores. The mean total DLI score across the sample, rescaled to a score out of 10, was 5.8 (SD: 2.0). On average, the sample performed best in the Experiential Knowledge (mean: 7.3; SD: 2.0) domain, and least well in the Factual Knowledge domain (mean: 4.8; SD: 3.0).

Table 3.

Descriptive statistics for unadjusted total DLI scores and its knowledge domains (n = 1224).

Knowledge domain	Mean score	Median score	Min	Max	SD	% with score = 0	% with score = 10
Factual (7 items)	4.8	4.6	0.0	10.0	3.0	6.0	4.7
Practical (8 items^a)	6.5	6.3	0.3	10.0	2.1	0.0	4.0
Experiential (5 items)	7.3	7.5	0.0	10.0	2.0	0.3	14.4
Community (9 items^b)	5.2	5.3	0.0	10.0	2.7	3.3	4.0
Total DLI score (29 items)	5.8	5.8	0.3	10.0	2.0	0.0	0.6

SD: standard deviation; DLI: Death Literacy Index.

All scores are scaled between 0 and 10.

Over two subscales: Talking Support (four items) and Hands-on Support (four items).

Over two subscales: Accessing Help (five items) and Community Support Groups (four items).

Univariate associations

We next explored univariate associations between participant characteristics and DLI scores. Supplemental File 2, Table S2.1 shows univariate tests of association between the covariates and total DLI and the individual knowledge domains. On average, women scored higher than men or other genders (means: 5.9 vs 5.4; p = 0.002). Scores generally increased with age to 51–60 and declined thereafter (significant differences – p < 0.001). There was significant (p = 0.011) variation in scores by area, with highest scores in Hertfordshire and West Essex (mean = 6.4), followed by Suffolk and North-east Essex (6.0), and the other area means ranging 5.5–5.8. However, due to uneven regional representation, this result should be interpreted with caution. Figure 4 shows geographical variation in mean total DLI at a more granular level (participants grouped by outward code of their postcode). Scores broadly increased with improving general health status (significant differences – p < 0.001). EoL formal training was associated with the largest and significant difference in average scores (means: 7.0 vs 4.9; p < 0.001).

Figure 4.

East of England map showing total DLI scores by area for n = 1224 participants.

EoL personal experience was significantly associated with total DLI score (p < 0.001). Intuitively, those experiencing someone dying in the last 2 years had on average higher scores (means = 6.0 and 6.4). However, individuals with no personal EoL experience had higher scores (mean = 5.7) than those whose experience was limited to being with someone at EoL who had not yet died (mean = 5.2). Mean differences between levels on main language, sexual orientation, highest parental qualification, and long-term/life-limiting conditions were small (<0.3) and non-significant (all p > 0.1). Differences in ethnicity were larger, but only significant at the 10% level (p = 0.085).

Analysis of the separate knowledge domains revealed similar patterns of mean level differences and statistical significance as observed for the total DLI score. However, differences by area were not significant for Practical Knowledge (p = 0.205) or Experiential Knowledge (p = 0.426). In contrast to the total DLI score, stronger and statistically significant associations were found between Factual Knowledge and both sexual orientation (p = 0.022) and highest parental qualification (p = 0.033).

Adjusted associations between total DLI and covariates

We conducted multivariable regression analyses to examine adjusted associations between participant characteristics and total DLI scores. Table 4 summarises the regression model relating covariates to total DLI score. After adjusting for other covariates, 6 of the 12 covariates had statistically significant associations with total DLI: (i) gender (χ²(1) = 4.8, p = 0.028); (ii) age (χ²(6) = 40.0, p < 0.001); (iii) ethnic group (χ²(1) = 7.9, p = 0.005); (iv) general health status (χ²(4) = 12.8, p = 0.012); (v) EoL training experience (χ²(1) = 407.1, p < 0.001); (vi) EoL personal experience (χ²(3) = 32.8, p < 0.001).

Table 4.

Adjusted total DLI score, OLS regression (n = 1224; r² = 0.32; adjusted r² = 0.31).

Variable	Category	Coefficient	95% confidence interval		p
Constant		2.01
Gender (reference: man or other gender^a)	Woman	0.31	0.03	0.59	0.028
Age (reference: 18–30 years)	31–40 years	0.42	−0.02	0.86	0.063
	41–50 years	0.77	0.37	1.17	<0.001
	51–60 years	1.00	0.62	1.38	<0.001
	61–70 years	1.27	0.81	1.72	<0.001
	71–80 years	1.41	0.80	2.01	<0.001
	Over 80 years	1.23	0.21	2.25	0.018
Area (reference: Bedfordshire, Luton, and Milton Keynes)	Cambridgeshire and Peterborough	0.00	−0.48	0.47	0.989
	Hertfordshire and West Essex	0.47	0.01	0.94	0.047
	Mid and South Essex	0.26	−0.21	0.73	0.274
	Norfolk and Waveney	0.17	−0.23	0.57	0.410
	Suffolk and North-east Essex	0.33	−0.09	0.74	0.119
Main language (reference: other main language^b)	English	−0.22	−1.12	0.67	0.623
Sexual orientation (reference: other sexual orientation^c)	Straight or heterosexual	0.02	−0.32	0.36	0.896
Ethnic group (reference: other ethnic group^d)	White	0.53	0.16	0.90	0.005
Highest educational qualification achieved by parent(s)^e (reference: degree-level qualification or above)	No qualifications	0.13	−0.16	0.41	0.377
	Below degree-level qualification	0.06	−0.17	0.28	0.622
Employment status (reference: employed^f)	Unemployed or other^g	−0.03	−0.46	0.40	0.889
Employment status (reference: employed^f)	Retired	−0.37	−0.74	−0.01	0.044
General health status (reference: very poor)	Poor	0.74	−0.35	1.83	0.183
	Fair	0.87	−0.14	1.88	0.090
	Good	1.11	0.09	2.12	0.033
	Very good	1.35	0.31	2.38	0.011
Diagnosed long-term or life-limiting condition(s) (reference: no)	Yes	0.19	−0.05	0.43	0.121
EoL training experience (reference: no)	Yes	2.09	1.88	2.29	<0.001
EoL personal experience (reference: no personal experience)	Experience with someone dying in the past 2 years only	0.48	0.25	0.72	<0.001
	Experience with someone currently at EoL only	−0.27	−0.59	0.06	0.105
	Experience with both someone currently at EoL and someone who died in the past 2 years	0.49	0.20	0.79	0.001

OLS: ordinary least squares; DLI: Death Literacy Index.

Due to small sample sizes, participants: ^aIdentifying as a gender other than man or woman were grouped together with men; ^bReporting their main language as any language other than English were grouped together under ‘Other main language’; ^cIdentifying with sexual orientations other than ‘Heterosexual/straight’ were grouped together under ‘Other sexual orientation’; ^dReporting ethnicities other than ‘White’ were grouped together under ‘Other ethnic group’; ^eAchieved by either or both parent(s); ^fIncludes those in self-, part-time, and full-time employment; ^gIncludes students and those unable to work due to illness irrespective of current personal experience (0.48 vs 0.49). Only personal experience of someone currently dying was associated with a non-significant reduction in DLI score of 0.3 (95% CI: −0.6, 0.1; p = 0.105).

On average, women scored higher by 0.3 (95% CI: 0.03, 0.6) compared to men or other genders. Broadly, DLI scores increased with increasing age group, barring the oldest age group (over 80 years), for whom it declined. However, with only 20 respondents over 80, the latter result should be interpreted cautiously. Compared to other ethnic groups, those identifying as White had 0.5 higher DLI score (95% CI: 0.2, 0.9). As general health status improved, DLI score also improved. EoL formal training experience improved DLI score by 2.1 (95% CI: 1.9, 2.3). This was the largest association observed. Personal experience of someone dying in the past 2 years improved DLI scores by similar amounts,

In the sensitivity analysis, we replaced the binary training variable with professional or volunteering experience (see Supplemental File 2, Table S2.2 for levels): missing data on this variable reduces sample size to n = 1220. Professional or volunteering experience is significantly associated with total DLI (χ²(3) = 494.1, p < 0.001). Compared to no experience, any experience is associated with increased scores: grief and loss experience increased scores by 0.5 (95% CI: 0.2, 0.9; p = 0.002); experience with care of people at EoL increased scores by 1.3 (95% CI: 0.9, 1.6; p < 0.001); experience with both increased scores by 2.5 (95% CI: 2.3, 2.7; p < 0.001).

Adjusted analysis of separate knowledge domains and their association with covariates

To further understand how different factors influence specific aspects of death literacy, we examined adjusted associations across the individual knowledge domains. Summaries of the regression models relating covariates to each of the knowledge domains are reported in Supplemental File 2, Tables S2.3–S2.6, with a simplified presentation of statistically significant associations across these models given in Supplemental File 2, Table S2.7. Generally, where a covariate had a significant association with a knowledge domain, the covariate also had a significant association with total DLI score. Age, EoL training experience, and EoL personal experience were significantly associated across all knowledge domains and have similar differences as seen with the total DLI score.

Broadly, scores increased with age, but for some knowledge domains scores start declining in older age groups.

Gender was only significantly associated with Experiential Knowledge: women scored on average 0.5 points higher than men and other genders (95% CI: 0.2, 0.8; p = 0.003; Supplemental File 2, Table S2.5). Ethnicity was significantly associated with Factual Knowledge (p = 0.009) and Community Knowledge (p = 0.004): individuals identifying as White scored on average 0.7 points higher for Factual Knowledge (Supplemental File 2, Table S2.3) and 0.8 points higher for Community Knowledge (Supplemental File 2, Table S2.6) compared to other ethnicities. General health was not significantly associated with Factual Knowledge (χ²(4) = 4.1, p = 0.383) but was on the other knowledge domains, in which scores increased with improved health status. Geographical area/Integrated Care Board (ICB) locality (χ²(5) = 13.1, p = 0.024) and Employment status (χ²(2) = 8.5, p = 0.014) were not significantly associated with total DLI but were with Community Knowledge.

Qualitative findings

We received 267 free-text comments on ways to enhance EoL care knowledge and skills in the participant’s area in the EoE. A total of 14 comments were excluded from the analysis (n = 6 were ineligible, and n = 8 could not be indexed against the framework), leaving 253 for further analysis (Figure 2). We generated a word cloud and tree map illustrating the frequency of words with a length of four letters or more across the dataset, see Supplemental File 3, Figures S3.1 and S3.2. The word that occurred most frequently in the responses was ‘support’, which occurred 106 times across the data set and in 77/253 (30%) individual responses.

Indexing and charting

The synthesised framework represented a good fit to the data. Free-text responses included in the analysis were indexed against the Quintuple Aim dimension 470 times, and the death literacy dimension 611 times. The indexing frequency distribution is given in Table 5 along with example quotations. Figure 5 illustrates how Relational and Community Knowledge had the strongest mapping against the Quintuple Aim dimension. The chart depicts Relational Knowledge as a fundamental cross-cutting domain. Relational Knowledge indexed comments involved connecting, collaborating, and communicating between people and institutions.

Table 5.

Indexing frequency across framework dimensions and domains with example quotes (Quintuple Aim n = 470, DLI n = 611).

Framework dimension	Framework domain	Frequency (%)	Example quotes
Quintuple Aim	Enhance experience of care	178 (37.9)	• ‘My Dad died last year and there’s no help . . . basically, we were on our own. My mum and my siblings and I did it all until the very last day when we finally got carers and then he died the next day. The level of help is criminally small, and the information out there is poor’.• ‘It seems to be luck rather than right to be able to obtain support at the end-of-life. We really need community support agencies to fill the NHS gaps / caverns. Community support will also increase individual and community knowledge and a willingness to be more open about death and dying’.
Quintuple Aim	Improve population health	133 (28.3)	• ‘I think Death Literacy should be taught or offered to patients and carers at the point of a terminal diagnosis, in the same way NCT classes are offered to expectant parents’.• ‘As soon as someone is diagnosed with a terminal illness a pack of information should be provided signposting relatives to available help and relevant information’.
Quintuple Aim	Improve resource use and reduce costs	75 (16.0)	• ‘Having a booklet available from the GP [General Practitioner] surgery about local support. Web resources are too overwhelming as you don’t know where to start and get hits for things that are not available locally. We should be digital first but not digital only’.• ‘Would prefer to have a link GP who understood my plan rather than seeing so many different ones. It’s exhausting keep explaining to every GP in a huge, confederated group’.
Quintuple Aim	Advance health equity	54 (11.5)	• ‘It depends on where you live as to what support is available.’• ‘I believe there is a need for better social support for younger adults 18–35/40. A lot of the services are only attended by much older people, so when people in this age bracket attempt to engage they feel that they do not fit or it isn’t for them’.
Quintuple Aim	Improve staff and volunteer experience	30 (6.4)	• ‘Dying and death would improve significantly if hospices communicated with community services more effectively. In my experience, the local hospice give the impression that they are at the top of the hierarchical triangle, that it’s is beneath them to ask for help or support from surrounding services. I strongly feel that if they were encouraged from commissioning and a public viewpoint to engage with District nurses, GPs therapy OOH [Out of hours] teams more effectively, then dying at home would be an easier process’.• ‘I think supporting end-of-life care has hardened me – I used to be quite an emotional, heart-on-my-sleeve kind of person, but now [I’m] very guarded about my emotions and approach death/dying very differently to others. Support for staff [might] be appropriate here’.
Death literacy	Relational knowledge	155 (25.4)	• ‘Support for family members to have open conversations about wishes of their older relatives at an earlier stage of life before it becomes too late’.• ‘I am really lucky because I am very knowledgeable . . . Others are really not and are frightened to ask or to talk about it. I include professionals that I come across who do not probe, ask appropriate questions, or pick up cues from people’.
Death literacy	Community knowledge	147 (24.1)	• ‘It would be good to have a live directory of what exists in terms of community provision – what the hospices offer seems to change frequently some projects close and others start so hard to keep up’.• ‘I work in a hospice so have better knowledge and understanding over what is available in the area I work in. I’m less sure for the area I live in. However, even with this knowledge I don’t feel confident I’d be able to access the support I needed if I was going through it. I have had to fight to advocate for my patients to access support at times, and I have friends recently who have hit multiple brick walls when trying to access support when their dad was dying – I’ve been able to intervene to access the support. The main barrier seems to be getting referrals accepted by specialist palliative care as a professional has to refer, but if there is no professional involved willing or able to make the referral in a timely manner the person is stuck without being able to get the support needed’.
Death literacy	Practical knowledge	131 (21.4)	• ‘Trying to navigate the health care system to support a dying person to receive care is very difficult. So many different NGO’s [Non-governmental Organisation] doing some great work but very confusing for patients to know exactly who to access for and for what kind of support. Every NHS region should have a ‘one-stop shop’ website which like a directory lists all services available, what support they can give and exactly how they can be accessed. This Regional Directory of Palliative/End-of-life Services would make it so much easier for front-line clinicians to signpost patients and their relatives to the right support at the right time’.• ‘I would hope that local GP has a booklet with information for people in this situation which provides contact details for support organisations and has practical suggestions. Perhaps care homes could give practical courses on how to lift/feed/wash a person at end-of-life’.• ‘Carers need more factual and practical guidance on what the last 12 months of life look like. There is a lot on last day/hours, not much around 12-2 months (counting backward with ‘1’ being the last days/hours)’.
Death literacy	Experiential knowledge	108 (17.7)	• ‘I had a very bad experience when my husband died (9 weeks from diagnosis to death). Nothing seemed to work, and I (his carer) was not included in discussion. I was given a leaflet about dying, funeral homes, what to do as he was dying – by a hospice nurse I had just met for the first time. Very bad lack of information and support. Somehow, communication needs to be improved in many ways’.• ‘From my own personal experience, there is not one central place to find a good range of information and you find you are having to navigate multiple agencies/organisations who, particularly in the NHS and local authorities, do not talk to each other. You find yourself having to say the same thing over and over again’.• ‘My dad died 4 years ago of a life limiting illness that he had for 18 months we were given no support at home. My dad had a short stay In hospital he was then discharged to come home to die, but unfortunately the hospital or the community services hadn’t arranged for any care and he passed away within 24 hrs of being at home. He was sent home with lots of end-of-life drugs, I’m assuming, and we had to keep phoning the community nurses. Eventually, one came out, but it was just the worst experience for my family and especially my mum’.
Death literacy	Factual knowledge	70 (11.5)	• ‘There needs to be much more support & education. We had no idea the number of hoops we had to jump through to get a death cert, for example: it took a week, for an end-of-life 95 yr old heart attack patient! Plus, even googling probate doesn’t explain what it is’.• ‘Within the hospital on the wards – knowing and having the understanding when there is no need to be carrying out observations such as BP [blood pressure], HR [heart rate], SATS [oxygen saturation levels in the blood]. A pack would be good for staff and NOK’s [next of kin] as a reference for all the things a person would need to know in the event, so the process runs smoothly, i.e. Death certificates, where to collect belongings, Funerals, etc.’• ‘It would be really useful to have a simple flowchart showing what services are available at each stage and explaining what support each provides. This could be linked to local contact details by postcode’.

DLI: Death Literacy Index.

Figure 5.

Cross-tabulated indexing frequency of free-text comments mapped across the Death Literacy and Quintuple Aim framework dimensions (Quintuple Aim dimension n = 470, Death Literacy Dimension n = 611).

In parallel, ‘Enhancing experiences of care’ and ‘Improving population health’ were the Quintuple Aim domains that mapped most prevalently against all death literacy knowledge domains (Figure 5). This observation reflects the perceived individual as well as collective benefits to increasing death literacy at a population level.³

The indexing frequency data and example quotations (Table 5) demonstrate the importance of cohesive community networks and the provision of family-centred support. Responses relating to the Quintuple Aim domains: ‘Improve resource use and reduce costs’, ‘Advance health equity’, and ‘Improve staff and volunteer experience’ were indexed less. This should not be interpreted as diminished importance. Instead, it is more reflective of the subjective and experiential nature of participant comments, and the self-selecting nature of the participant sample.

Thematic analysis and interpretation

We generated four overarching themes with a series of sub-themes within each. An example quotation is given for each sub-theme.

1: Resourcing care appropriately

Current community infrastructure was described as under-developed, under-resourced, and under-promoted. Members of the public described a chronic lack of structured support, and a lack of recognition of the role of family carers in the EoL care system.

Sub-theme 1a: Improving care resources and availability

“When looking for help and support in the past regarding this issue all I got was ‘we don’t deal with that, you need to contact blah, blah’ and I’d get the same response from blah blah, so I gave up.”

Sub- theme 1b: Supporting family caregivers and peer networks

“I know the systems, I also know how stretched those systems are. There is a difference between theoretical knowledge and ability to access support at the time of need. And support groups are of no help to carers who cannot get respite to attend them.”

2: Lost in the system

Participants reported feeling excluded, confused, overwhelmed, and unsupported when trying to navigate a complex system of care.

Sub-theme 2a: Improving awareness of services and access points

“Not enough publicity in terms of what support there is – you have to search for it when you are at your most vulnerable.”

Sub-theme 2b: Connecting fragmented services

“It is a mine field, involving different services who do not talk to each other, with lack of funding, compassion and support.”

3: Cultural readiness for death

This theme highlighted a cultural readiness to discuss death and dying that health and care systems may not match. Participants frequently suggested adopting a narrative approach to expanding death literacy: one that goes beyond simply providing factual information.

Sub-theme 3a: Promoting death literacy in everyday life

“I think it should be covered in schools regard[ing] care, hospice, community, etc. as this teaches the child and the parent and opens discussion on life and death.”

Sub-theme 3b: We need to talk about dying, death, and loss

“Encourage people to accept that [death] is a natural end to life rather than a failing of the medical profession.”

4: Communication, care, and dignity

This theme demonstrated communication failures, where a lack of clarity from clinicians had a negative influence on EoL experiences. Participants reported experiences of clinician discomfort with holding EoL care conversations and system pressures that resulted in a person’s wishes not being discussed or not being followed. The role of hospices was discussed frequently. They were portrayed as needed institutions for EoL and bereavement care infrastructure, offering important support services beyond the confines of their physical premises. Participants commented that after death care needs equitable access with enhanced factual and practical support.

Sub-theme 4a: Dignified, family centred dying

“I have supported both parents as they approached end-of-life. [The] GP did not listen to care home advice that my mother was dying that night and was insistent on giving further meds. Mother had [a] LPA [Lasting Power of Attorney] with her with capacious [made with full mental capacity] decision that she should not be resuscitated. [The] GP for [the] care home absolutely refused to accept it.”

Sub-theme 4b: Supporting bereavement and after death care

“I work as a social prescriber within [a rural area]. I have had quite a few patients who are suffering bereavement and quite frankly the services are inadequate within this area of [rural area]. Services that do exist are mainly online and this is not helpful for anybody with learning disabilities or of an older age who cannot access the internet. Since the pandemic more and more services have become telephone based, this is not acceptable. People, especially those grieving, need the human touch and this is severely lacking.”

Sub-theme 4c: Highlighting hospice expertise and role

“Promote hospice services as experts in E of L [end-of-life] skills rather than dying. A wide range of services are available, but as it’s all funded by charity – it needs strengthening!”

Sub-theme 4d: Training professionals for sensitive conversations

“As a student (nurse, paramedic, etc.) I think we need more training on dealing with end-of-life patients – one 1hr skills session isn’t enough to prepare for practice!!!”

Detailed results from the thematic analysis and how themes mapped onto the Quintuple Aim and death literacy framework domains are presented in Supplemental File 3, Table S3.1 along with a short interpretation. Theme titles and descriptions alongside additional example quotations are listed in Supplemental File 3, Table S3.2, and a scaled visual summary of the themes is presented in in Supplemental File 3, Figure S3.3.

Discussion

Death literacy encompasses knowledge, skills, experiential learning, and social action.^1,21 This study explored death literacy across six NHS ICS areas in the EoE, using the DLI as a pragmatic tool to inform public health strategies aligned with the Quintuple Aim.³⁶ We evaluated sociodemographic and experiential factors associated with DLI scores and examined whether certain death literacy knowledge domains function as community assets or indicate areas in need of targeted intervention.

Quantitative findings summary

Current findings echo existing literature and previous UK benchmarking.^{14,15,18,19,22} Experiential Knowledge consistently scores highest, reflecting how prior experiences prompt self-reflection and influence future approaches to EoL care.^{1,15,16,18–20,57} Factual Knowledge is frequently lowest scoring, highlighting the need for greater public awareness of, and easy access to, legal, bureaucratic, and pragmatic aspects of palliative and EoL care to reduce current levels of system complexity.^16,18,20 Practical Knowledge, involving hands-on care and support, generally scores second highest, especially in cultures with strong family involvement or where training supports confidence and self-efficacy.^{1,15,16,18–20} Community Knowledge is often low scoring in systems with strong institutional health care or where there is limited peer-led support structures.^15,17,18

Demographic, experiential, and training-related associations with death literacy

Higher death literacy was observed among older adults, females, individuals of White ethnic background, those with better self-rated health, and those with formal training or personal experience in EoL care. Structured and experiential learning showed the strongest associations with higher DLI scores. However, the predominance of female and White British participants, and uneven regional representation, limits generalisability. Nevertheless, these findings are consistent with existing literature and highlight the need for inclusive, targeted knowledge mobilisation strategies that actively harness and share learning gained through caregiving or bereavement experiences, or professional exposure to EoL care. While demographic factors are sometimes associated with DLI scores, the evidence indicates that experiential learning and exposure are more consistently predictive of higher DLI scores across diverse populations.^{14,16,18–23}

Qualitative analysis summary

‘Support’ was the word that occurred most frequently in participant responses, emphasising the communal nature of dying and the need for collaboration among individuals, families, and communities (Supplemental File 3, Figures S3.1 and S3.2). Mapping Quintuple Aim elements to DLI domains bridged individual, public, professional, and system-level factors, showing death literacy as both a prerequisite and pathway to improved population health, equity, and resource use.

Adding Relational Knowledge to the analysis framework illustrated the dynamic, action-oriented nature of death literacy (Table 5).¹ Relational Knowledge reflected how death literacy is enacted, acting as a composite across DLI and Quintuple Aim domains (Figure 5). Its prevalence demonstrates the need to mobilise death literacy primarily through human interaction, stimulating social capital and collective action via horizontal associations between policy, practice, and family-centred care.^34,58,59

Support needs

Findings indicate that informational resources alone were insufficient for participants navigating the death system. That said, a need to improve Factual Knowledge surrounding a person’s localised death system is a key finding from the survey data. The quantitative results indicate that participants who had received formal palliative and EoL care training were associated with higher levels of death literacy. This suggests training methods are effective in improving death literacy. However, to mobilise death literacy at both individual and collective levels, health and care systems should prioritise supportive relationships across care networks.²⁹ Four overarching themes generated from participant responses provide insight into how death literacy operates across personal, social, and systemic levels (Supplemental File 3, Tables S3.1, S3.2, and Figure S3.3).

Implications for practice

Principles for mobilising death literacy

Mobilising death literacy knowledge and skills is fundamentally a process and product of social action and social exchange, requiring a system perspective that recognises the complexity, dynamism, and contextual sensitivity of EoL care.⁶⁰ Death literacy is shaped iteratively by experience, feedback, and learning within local and cultural contexts.^1,20 Health and care policies should therefore prioritise the development of social learning capabilities that enable communities to adapt and respond to the evolving needs around dying, death, and bereavement.⁶¹

While the DLI-29 and its derivations offer a robust and validated means of measuring aspects of death literacy,^1,19,20,23 the concept itself extends beyond what any single metric can capture. The DLI provides a valuable framework for assessing knowledge and capability, yet death literacy also encompasses relational, cultural, and civic dimensions that are not easily quantified.^34,38 As with many complex social constructs, there is a risk (as cautioned by Goodhart’s Law) that when a measure becomes a target, it may lose its value as a measure. Death literacy mobilisation requires collective community action and the integration of diverse forms of knowledge, including lived experience, practical skills, and emotional insight.

Implementation and system-level recommendations

The recommendations presented in Table 6 are designed to guide a coordinated, equity-driven approach to death literacy mobilisation, aligned with the Quintuple Aim.⁴⁰ They are underpinned by a salutogenic ethos to foster confidence, coherence, and capacity within communities, and to reduce stigma and uncertainty around palliative and EoL care. Social capital theory and Ostrom’s framework for collective action highlight the importance of trust, reciprocity, and relationship-building in sustaining cooperation across the death system.^38,43 These principles are embedded in the recommended actions, which span community engagement, education, workforce development, and culturally responsive practices.

Table 6.

Recommendations to mobilise death literacy in accordance with the Quintuple Aim.

Recommendation	Actions	Death Literacy Knowledge domains	Quintuple Aim domains
1. Establish a locally coordinated system to enhance and mobilise death literacy as a public health strategy	• Create a local death literacy coordination hub for signposting, convening stakeholders, and embedding death literacy into existing health and well-being strategies• Build capacity through accessible workshops, school and workplace programmes, and peer-to-peer knowledge exchange opportunities• Offer professional development for frontline staff (e.g. GP receptionists, housing officers, librarians) to increase awareness and confidence	• Factual• Practical• Experiential• Community• Relational	• Improve population health• Enhance experience of receiving care• Advance equity
2. Expand and coordinate community connector/navigator roles to help bridge gaps between people, services, and EoL support systems	• Involve trained staff and volunteers to improve access, build trust, and guide individuals and families through palliative, end-of-life care, and bereavement experiences⁶³	• Community• Relational	• Enhance experience of receiving care• Improve staff/volunteer experience• Advance equity
3. Integrate relational training into health and social care workforce development programmes	• Equip staff with skills in compassionate communication• Involve people with lived experience in staff development programmes	• Practical• Experiential• Relational	• Enhance experience of receiving care• Improve staff/volunteer experience
4. Invite people with lived experience to participate in local advisory panels to inform continuous service improvement and commissioning	• Establish structured feedback loops with families and advisory groups• Ensure EoL services are responsive, family-centred, and shaped by those with direct experience of care and loss	• Experiential• Relational	• Enhance experience of receiving care• Improve staff/volunteer experience
5. Support peer-led grief and remembrance initiatives to strengthen social cohesion and community action	• Enable culturally relevant community remembrance and grief support opportunities• Reduce stigma, increase collective resilience, and mobilise experiential knowledge	• Experiential• Relational	• Enhance experience of receiving care• Improve staff/volunteer experience
6. Standardise and localise practical skills workshops and accessible learning opportunities for unpaid family caregivers to strengthen confidence and capability in home-based EoL care	• Equip unpaid caregivers with essential skills to build confidence and competence in supporting friends or family experiencing serious illness (e.g. illness trajectories, manual handling, personal care, recognising signs of dying, relevant paperwork) to help bridge the gaps between statutory services and home-based EoL care	• Factual• Practical• Relational	• Improve population health• Improve resource use/reduce costs• Enhance experience of receiving care• Improve staff/volunteer experience• Advance equity
7. Embed death, dying, and bereavement in school curricula and intergenerational public education to normalise conversations and build death literacy over the life course	• Co-produce education programmes in schools and communities that foster openness and intergenerational engagement and involvement to encourage continuous development of death literacy over the life course and across society	• Factual• Practical• Experiential• Community• Relational	• Improve population health• Advance equity
8. Leverage, integrate, and disseminate hospice knowledge and skills through community education, open house events, and expert-led forums to build understanding and trust in EoL care	• Support hospices to lead accessible education sessions• Collaborate on public health palliative care initiatives• Demystify end-of-life care to strengthen community confidence and engagement	• Factual• Practical• Experiential• Community• Relational	• Improve population health• Enhance experience of receiving care• Improve staff/volunteer experience
9. Partner with diverse community groups to co-create and translate EoL materials that reflect local languages, cultures, and need	• Co-produce culturally appropriate information and resources• Improve inclusivity, understanding, trust, and access• Ensure public health palliative care messaging is relevant to all communities	• Factual• Practical• Community• Relational	• Improve population health• Enhance experience of receiving care• Advance equity
10. Support local community-based palliative and EoL and bereavement care evaluations that span the Circles of Care to track impact consistently²⁹	• Embed meaningful evaluation frameworks using agreed methods to enable communities and service providers to understand local impact, identify gaps, and improve EoL support through evidence-informed decision-making	• Factual• Practical• Community• Relational	• Improve population health• Improve resource use/reduce costs• Advance equity

EoL: end-of-life.

Implementation should be embedded within local and regional ICS health and well-being strategies, with health care infrastructure, local authorities, hospices, voluntary organisations, and educational institutions playing key roles in delivery through partnerships, training, and public education. Framing death literacy as a generative and actionable public health asset enables a complexity-informed response to dying, death, loss, and long-term caregiving. By investing in death literacy mobilisation, stakeholders can enhance preparedness, reduce avoidable harms, and advance equity in EoL care. Embedding these recommendations into practice offers a timely and feasible opportunity to improve outcomes, reduce pressure on formal services, and ensure that each community is better prepared to support its members through death and bereavement.

Two domains of the Quintuple Aim featured less in participant responses: Advancing equity and Improving resource use.⁴⁰ It is important to acknowledge that social inequities shape dying.⁶² How resources are deployed to reduce structural barriers that limit choice and access to support for people experiencing dying, death, and loss is a key priority.⁶³ There is a need to bolster peer-based navigation capacity.⁶³ Death literacy initiatives attuned to the local context are shaped by socioeconomic realities of the present day, as reflected in the UNDP reports.^30,31

There is a wealth of death literacy experiential knowledge in the public domain that could be incorporated more systematically to support death literacy mobilisation. In this context, knowledge gained through lived experience can be regarded as a community asset. Facilitating targeted knowledge exchange through social events, community gatherings, intergenerational exchanges contribute to Ambition Six: Each community is prepared to help.³⁸

In parallel, local authority directories of services enable people at home to know what support opportunities are available in their neighbourhood. In the survey, there were multiple requests for a ‘one stop shop’ to help equip people with what they need in a palliative, EoL, and bereavement context to foster social cohesion and reduce the risk of families feeling overwhelmed or reaching crisis point. Non-clinical infrastructures, such as libraries or community centres can act as resource hubs to support death literacy mobilisation. To monitor progress, a robust systematic evaluation framework is needed that is meaningful to communities and service providers alike.

Strengths and limitations

As a cross-sectional tool, we provide useful data across a large region of England to stimulate collective action in a public health context. By employing supplementary qualitative methods, we incorporated lived experiences to explore interrelated influences of death literacy at personal, social, and systemic levels. The quantitative and qualitative analyses reinforced each other. The framework approach involving deductive and inductive analysis added granularity to the interpretation. The integration of the Quintuple Aim with the DLI domains provided a robust analytical framework. Use of social media enabled access to geographically dispersed populations (Figure 3) suggesting that participant responses are likely to reflect EoE regional views. There are some generic strategic suggestions that could be applied in areas that are deemed culturally similar. However, generalisability and transferability of the results should be treated with caution.

We acknowledge limitations of the study:

(i) The cross-sectional design limits causal inference. Future studies seeking to evaluate death literacy implementation should involve prospective longitudinal designs or experimental designs to strengthen understanding of causal pathways.

(ii) Our regression model accounted for 31% of the variance (Table 4) suggesting there are additional factors needed to further explain determinants of DLI scores.

(iii) A convenience sample may have excluded certain individuals, limiting broader applicability.

(iv) The sample was predominantly female and White British, limiting gender and ethnic diversity.

(v) There was underrepresentation of foreign-born individuals and culturally and linguistically diverse communities.

(vi) The use of an online convenience sample may have limited representation of individuals from certain socioeconomic backgrounds.

(vii) There may have been self-selection bias. Participants more open to discussing death may have been more interested in completing the survey.

(viii) Despite extending the opportunity to participate some postcodes in the EoE were not represented (Figure 3).

(ix) The analysis was conducted on a complete-case dataset (n = 1224), excluding incomplete responses (n = 501). While this approach ensures internal consistency, it does not address potential non-response bias from individuals who did not complete the survey or chose not to participate.

More research is needed to explore how levels of death literacy relate to advancing health equity and improving staff/volunteer experience. These areas require more explicit attention in future evaluations.

Conclusion

This study demonstrates the value of the DLI as a practical, theory-informed tool for identifying community assets and informing public health strategy. Mapping death literacy across the EoE led to 10 actionable recommendations aligned with the Quintuple Aim, providing a clear framework for enhancing EoL care. While improving factual knowledge is important; our findings suggest that informational resources alone are insufficient. Supportive relationships and care networks are essential for meaningful change. Aligning knowledge mobilisation strategies with specific DLI domains enables a more effective, theory-driven response across policy and community sectors. These findings lay the groundwork for collaborative efforts to make death literacy a core component of compassionate, equitable, and sustainable care.

Supplemental Material

sj-docx-1-pcr-10.1177_26323524261443547 – Supplemental material for Mapping death literacy in the East of England: A cross-sectional survey with qualitative insights to inform public health strategy

Supplemental material, sj-docx-1-pcr-10.1177_26323524261443547 for Mapping death literacy in the East of England: A cross-sectional survey with qualitative insights to inform public health strategy by Guy Peryer, Krishnan Puri Sudhir, Adam P. Wagner and Jessica Blake in Palliative Care and Social Practice

Supplemental Material

sj-docx-2-pcr-10.1177_26323524261443547 – Supplemental material for Mapping death literacy in the East of England: A cross-sectional survey with qualitative insights to inform public health strategy

Supplemental material, sj-docx-2-pcr-10.1177_26323524261443547 for Mapping death literacy in the East of England: A cross-sectional survey with qualitative insights to inform public health strategy by Guy Peryer, Krishnan Puri Sudhir, Adam P. Wagner and Jessica Blake in Palliative Care and Social Practice

Supplemental Material

sj-docx-3-pcr-10.1177_26323524261443547 – Supplemental material for Mapping death literacy in the East of England: A cross-sectional survey with qualitative insights to inform public health strategy

Supplemental material, sj-docx-3-pcr-10.1177_26323524261443547 for Mapping death literacy in the East of England: A cross-sectional survey with qualitative insights to inform public health strategy by Guy Peryer, Krishnan Puri Sudhir, Adam P. Wagner and Jessica Blake in Palliative Care and Social Practice

Supplemental Material

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Supplemental material, sj-docx-4-pcr-10.1177_26323524261443547 for Mapping death literacy in the East of England: A cross-sectional survey with qualitative insights to inform public health strategy by Guy Peryer, Krishnan Puri Sudhir, Adam P. Wagner and Jessica Blake in Palliative Care and Social Practice

Footnotes

Acknowledgements

We would like to thank: Beverley Pickett, Professor Stephen Barclay, and Dr Eva Lew from the NHS East of England Strategic Clinical Network; Professor Morag Farquhar and Dr Caroline Barry at NIHR ARC East of England; Dr Allan Clark at UEA Medical School; the East of England Macmillan Palliative and End-of-life Transformation Leads, Francesca Light at St Christopher’s Hospice, and the Norfolk and Waveney Compassionate Communities group for supporting the study and enabling manuscript submission.

ORCID iDs

Guy Peryer

Krishnan Puri Sudhir

Adam P. Wagner

Jessica Blake

Ethical considerations

Ethical approval for the study was obtained from the Faculty of Medicine and Health Sciences Research Ethics Committee at University of East Anglia on 14 February 2023 (ETH2223-1343).

Consent to participate

Participants were provided informed consent to participate prior to commencing the survey.

Author contributions

Guy Peryer: Conceptualisation; Data curation; Formal analysis; Funding acquisition; Methodology; Project administration; Visualisation; Writing – original draft; Writing – review & editing.

Krishnan Puri Sudhir: Data curation; Formal analysis; Writing – original draft; Writing – review & editing.

Adam P. Wagner: Formal analysis; Supervision; Visualisation; Writing – original draft; Writing – review & editing.

Jessica Blake: Formal analysis; Writing – original draft; Writing – review & editing.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: K.P.S., A.P.W., G.P., and J.B. were supported by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration East of England (NIHR ARC EoE) at Cambridgeshire and Peterborough NHS Foundation Trust. J.B. was also supported by NHS Norfolk Community Health and Care Trust. In addition, G.P. was supported by NIHR via a Knowledge Mobilisation Advanced Fellowship (Award ID: NIHR302539). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.

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 reported in this article are available from the corresponding author* upon reasonable request.

Supplemental material

Supplemental material for this article is available online.

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