Conference Agenda

Background

The Death Literacy Index (DLI) was developed to address the need to demonstrate one aspect of community-based outcomes in the field of public health palliative care. The DLI was developed in 2019 in Australia, and validated versions have been published in the UK, China, Turkey and Sweden with learning and refinement of the survey tool. As such, this research presentation provides a revised DLI and the 9-item short form.

Objectives

This presentation reports on the development and psychometric properties of the DLI-Revised and a shorter version of the tool the DLI-9.

Design

Quantitative Research, survey development.

Methods

Online panel representative of 1202 Australian adults, based on age, gender, and location. The items on the scale were revised by a team of death literacy experts and a Confirmatory Factor Analysis (CFA) was conducted on the revised DLI using the model outlined in previous research. To develop a shorter version, 16 items were initially selected based on face validity. An Exploratory Factor Analysis (EFA) was run to reduce the number of items with factor loadings less than 0.65 and to identify the factor structure. The newly configured model was assessed for model fit using CFA. The invariance of the final model was tested across genders using multi-group CFA.

Scaled mean scores between the DLI-revised and the shorter version were assessed for statistical differences. The internal reliability of the DLI-revised and shorter version was assessed using Cronbach’s alpha.

Results

Twenty questions were modified in the revised scale. A CFA on the 29-item revised DLI indicated a good model fit [TLI .93; CFI .93, RMSEA .06; SRMR 0.06], with 6 latent variables and an underlying latent variable “death literacy”.

For the shorter version, an EFA identified a 9-item, two-factor structure model. The model demonstrated an excellent fit with TLI and CFI values exceeding 0.95 and SRMR less than 0.05. The measurement invariance showed a comparable means between males and females. The DLI-9 and DLI-29 were strongly correlated (0.98).

Cronbach’s alpha coefficients for both revised DLI scales and subscales and the shorter version of the DLI exceeded 0.8, indicating high internal consistency.

Conclusion

The DLI-revised and the DLI-9 were found to have good psychometric properties. The development of a shorter version of the DLI, provides a valid shorter tool for community organisations. Recommendations for using the DLI-9 will be discussed in the presentation.

Background - Birmingham has been a Compassionate City for two years. A group of people from over 15 organisations form the committee for Compassionate Birmingham Network (CBN). A key focus for 2023, was the use of the Death Literacy Index (DLI).

Objectives - to contribute to evaluating outcomes of CBN Activities, to inform discussions around community capacity building and to support improvements at system level. The target number for statistical significance was 386.

Design - The validated DLI tool was used. Two extra sets of questions were added: I) demographics including level of experience. II) their top three priorities in situations regarding serious illness and bereavement.

Methods - The link to the survey was sent to the CBN and distributed to citizens and organisations. The survey was also sent out on social media. The survey results were analysed in a variety of ways; i) reporting on individual question results, ii) using the standard evaluation tool designed as part of the DLI. iii) Analysis of the demographic and experience questions. iv) Analysis from the priority questions

Results - 391 people completed the survey. It was accepted that in this phase diversity of participants would be limited. One of the concerns about the method of data collection was that a high number of participants would be health and care professionals. This wasn’t the case and the number of people who had significant or limited personal experience was evenly distributed.

Based on the participants, the questions related to ‘talking confidence’ and ‘practical hands on support’ scored well. However, when the questions started to ask about factual knowledge and access the results were reversed. This demonstrated that how information has been shared has not been effective. On the questions related to priorities, the data demonstrated the importance of emotional support, social connectedness and time with friends and family being of greater importance than other elements such as physical care or pain relief.

Conclusion - The results are feeding into strategic developments around how information is shared with citizens in a meaningful way. Whilst a significant number of people completed the survey, the data is not representative of the diversity of the City. The aim of phase one, was to gain broad understanding. The CBN is now focusing on smaller localities and marginalised communities. The next phase will include a specific neighbourhood and people identifying as LGBTQIA+.

Background

Also in German-speaking regions, there are various initiatives to strengthen the understanding of death, dying, and bereavement as a natural part of life. The goal is to raise social awareness and to provide equal access for all to dignified support and care at the end of life according to their individual needs. One underlying prerequisite for this goal is death literacy, as it helps to understand death, dying, and bereavement more as shared social processes than medical phenomena. Therefore, coordinated local networking between civil society, the health system and politics is necessary. In Germany, palliative support points are an example of such networking structures. Additionally, there are several initiatives to improve death literacy, including school projects and last aid courses. Currently, their effectiveness has not been systematically evaluated, and there are no validated instruments for measuring death literacy in German-speaking regions.

Objectives

Development of a German-language version of the Death Literacy Index (DLI-German) to assess awareness and competence in dealing with dying, death, and bereavement within and outside the German health and social care system. The Index is also intended to be used for the evaluation of measures to improve death literacy.

Design and Methods

Translation and validation of the Death Literacy Index, as well as adaption to the health and social system in German-speaking regions. The applicability of the DLI-German for the evaluation of measures to improve death literacy is to be tested. Additionally, we plan to develop an internet-based tool for calculating the Index, including information on regional support services on death, dying, and bereavement.

Expected results and conclusion

An instrument for measuring death literacy in German-speaking regions is intended to map death literacy in society and to evaluate measures to increase it. The provision of the instrument as an online tool in combination with information on regional support services can contribute to improving death literacy.

Background: Death literacy is a multidimensional construct conceptualizing broad non-professional competence and preparedness for engaging in end-of-life care and support. It is operationalized in the Australian self-report instrument Death Literacy Index (DLI), which has gained international interest as a potential outcome measure for end-of-life competence-building interventions but has hitherto not been adapted for mainland European contexts.

Objectives: The aim of this study was to translate, adapt, and establish the content and cognitive validity for the DLI in Flemish Belgium (FL), the Netherlands (NL), and Sweden (SE), and to examine the impact of health system characteristics on the DLI and challenges in adapting it to national contexts.

Design: International multi-step validation study.

Methods: Content validity was determined using a digital survey questionnaire among palliative care experts and by calculating the Content Validity Index for the whole instrument (S-CVI). Cognitive validity was determined using qualitative stakeholder interviews. Differences and challenges in adapting the DLI to each country were compared and discussed during international team workshops.

Results: In total, 33 experts (FL: N=15; NL: N=8; SE: N=10) participated in the content validation survey, and cognitive validity interviews were held with 31 stakeholders (FL: N=12; NL: N=9; SE: N=10). Translated items were considered relevant, clear, linguistically and culturally equivalent by experts, resulting in high S-CVI scores (FL=0.938; NL=0.864; SE=0.926). Challenges identified in the surveys and cognitive interviews centred around semantics (e.g., ‘community’, ‘the law’), the variation in legal and regulatory systems and the different services involved in death care in the different death systems, and differences in perceptions of who is responsible for care provision.

Conclusion: Comparing findings between the three countries emphasised how the nation-specific DLI’s are rooted in their death systems and problematised tacit knowledges embedded in the instruments. DLI adaptation remains a balancing act between instrument specificity and flexibility to allow comparison and maintain validity over time.