Chair: Helen Callanan
a. Addressing death illiteracy: Findings from the evalution of a death and grief eduction programme for children
Background: The function of education in developing health, and death, literacy, is as a key tool in health promotion. In Scotland, schools are identified as an important target for health promoting palliative care to ensure that children develop the skills and capacity to talk about, and cope with death and bereavement; yet, death is not included in the curriculum and teaching about death and grief is not common practice. Aims: This presentation discusses the evaluation of a death and grief education programme for children, aged 9 to 12, in one Scottish school. The programme was designed as part of an action research study, in response to children’s questions about death, which they, and school staff, determined the school had a role in answering. Written evaluations, focus groups and interviews were facilitated with children and teachers post teaching to: understand experiences of the programme, identify key areas of learning; and ascertain opportunities and challenges for integrating death and grief into the curriculum. Findings: The evaluation revealed that despite initial reticence, staff enjoyed teaching the programme and were surprised by how readily the children engaged with the learning. Likewise, the children revealed that it was usual to talk about death in class yet they enjoyed the programme and described how it supported them to share personal stories and develop their understanding of organ donation, funeral customs and grief. Conclusion and application to PHPC: The research suggests that a short and targeted education programme, led by the questions of children, can develop knowledge of death and grief and that this impacts on children’s ability to understand and engage with these experiences: thus building death literacy. This is significant as, whilst the experience of caring, dying, death and grief impacts on everyone, children’s experiences of and relationship to health promoting palliative care remains under-explored.
b. Developing the Death Literacy Index: Early findings from practice examples in Australia
Dr Kerrie Noonan
Background Despite growth in public health approaches to palliative care, there is limited research demonstrating its impact. In particular, how community development programs may contribute to transforming current service dominant approaches to end of life care. The death literacy index (DLI) is being developed to address this gap. We define Death Literacy as knowledge about, and understanding of the death system to strengthen community capacity to take action on caring at end of life. Aims 1.To develop a rigorous, comprehensive, useful and generalizable DLI; 2.As a tool to measure the impact of interventions; and 3.Determine the state of death literacy in Australia Methods 1)Extensive qualitative research had been conducted with carers, communities, and service providers across Australia 2)Focus groups and interviews with national and international experts were conducted to develop DLI items. 3)A representative sample of Australian adults completed an online survey. Exploratory and confirmatory factor analyses, structural equation modelling and regression analyses were used to identify the DLI and its relationship to demographic variables and people's previous experience with death, dying and bereavement. Results The analysis showed that death literacy has conceptual validity. That is, it can be reasonably measured. The snapshot of Australians death literacy challenged some assumptions regarding how people learn about death and dying and how many people are able and willing to contribute to caring for people at end of life. These have implications on the development of social interventions and programs we will further discuss these in this paper. Conclusion The death literacy index is a promising development in our understanding of community knowledge and know-how related to dying, death and loss. The DLI can provide baseline measurements for assessing change and cross cultural understandings of death literacy.
c. Developing a Death Literacy Index
Death Literacy forms part of the new public health framework in which citizens are central to decision-making about, and access to, end of life and death care options. Death literacy is knowledge and understanding of the death system. The resulting skills strengthen individual and community capacity to take action and care for one another at times of dying, death, loss and grief. In this way, it contributes to compassionate communities. The present research aimed to develop a rigorous, comprehensive, and generalizable death literacy index in such a manner that it can be used to measure the impact of interventions to increase death literacy. It used a mixed method approach with qualitative methods for content development followed by a national survey and quantitative analyses, including exploratory and confirmatory factor analyses and structural equation modelling. The final Death Literacy Index (DLI) had 29 observed variables and four latent variables (Practical Knowing; Knowledge from Experience; Factual Knowledge; and Community Capacity) and an underlying latent variable “Death Literacy”. The Practical Knowing subscale consisted of two subscales: Talking Support and Hands on Caring. The Community Capacity subscale consisted of two subscales: Accessing Help and Support Groups. All measures had high reliability (Chronbach’s alpha) and validity as demonstrated by their correlations with respondents’ experiences with death, dying, and bereavement. The moderate correlations suggest that the DLI is more than just a measure of people’s experience. As the Knowledge from experience subscale illustrates, people need to learn from their experiences to become death literate. The DLI will have the capability to measure impact due the range of topics covered by the subscales. Because within the Index, each subscale’s reliability is good, they can be used independently to match the appropriate subscale with a particular intervention.
d. Developing death competence online: Is it possible?
Prof. Jennifer Tieman
For many Australians, talking about death and dying is experienced as uncomfortable at best, or offensive at worst. Death can be seen as a medical event, instead of the natural conclusion to every life. As a result, people often avoid discussing death, which may impair their ability to cope and make good decisions when facing their own death or that of a loved one. We designed a Massive Open Online Course called Dying2Learn, aiming to provide a safe space for the general public to learn about and discuss death and dying. The course was constructivist, encouraging participants to collaborate and learn from one another. We investigated whether participating in Dying2Learn could increase participants’ death competence, measured in an optional online survey at the beginning and end of the course so that change over time could be detected. Over the three years that Dying2Learn ran, 529 participants provided death competence data at both time points. Most Dying2Learn participants already demonstrated high death competence at the beginning of the course, perhaps reflecting the significant representation of health professionals (73.9% of all students) or their self-selection into the course. Nonetheless, students reported a further statistically significant increase in death competence, which was of a small to medium size. The high rate of participation by health professionals suggests that this was an attractive activity for this group, serving a need to discuss their social rather than medical experiences of death and dying, which is perhaps not met elsewhere and ultimately improved their capacity to cope with this aspect of their work. Further investigation is needed to determine if the type of discussion fostered by Dying2Learn could be equally beneficial in general community populations with low baseline levels of death competence.