Developing an Index to measure Death Literacy

Western Sydney University (WSU) and The Groundswell Project (GSP) have partnered to build on existing research and practice relationships to develop a benchmarking tool (index) to measure Death Literacy (Noonan, Horsfall, Leonard and Rosenberg 2016). We will use the health literacy development model provided by Osborne (2013) to inform our developmental process. This is a well-respected and widely used questionnaire and the process of the questionnaire development is well described and validated.  The death literacy index will provide a population based measure of death literacy which will enable us to a) determine current levels of death literacy at a whole of population and local level and b) measure the impact of local and wide-scale initiatives. This research has the potential to make a significant contribution to understanding the impact of interventions designed to increase the death literacy of communities, organisations and even whole nations thus contributing to scholarly, policy, practice and public knowledge of and debate on successful strategies and interventions in the end of life field. We anticipate that the index will be generalizable internationally and will enable evidence based decision making regarding best practice in increasing death literacy in a whole of community approach.

Despite the growing interest in public health approaches to palliative care, there is limited research demonstrating the impact of these initiatives (Sallnow et al 2016). In particular, we are still learning how end-of-life knowledge and information are transmitted through community development programmes and how these initiatives contribute to transforming current, service dominant approaches to health care. In 2009, the caring at end of life research team began a research project that sought to develop greater understanding of how communities come together to care (Horsfall et. al 2015; Horsfall 2013; Horsfall 2012) and we invited carers and their networks to come together to talk about the experience of caring for someone who was dying at home. At the conclusion of 6 years of research, 308 people participated, providing in-depth personal and collective narratives about the function and effects of informal caring networks and how they interface, or not, with formal service providers. A key finding of this ongoing research has been a deeper understanding of how caregivers care at home when someone is dying. We have noted that despite the dominance of medical knowledge and strategies in our healthcare system the carers have the ability to 'do it their way' and step outside of institutionalized dying. With no prior knowledge or special set of skills, they showed an ability to care for a person at the end of their life at home. Carers demonstrated they could seek out information and learn the complex physical and emotional end-of-life caring skills. The act of end-of-life caregiving provides a deeply personal connection to death and dying and is a catalyst to developing death literacy. In keeping with new public health approaches (refs) death literacy draws on a community development framework which suggests that if a community is to develop its capacity to support the caring of those at EOL, it needs knowledge and experience, a sense of empowerment and supportive social structures. These aspects are reflected in four features of death literacy – knowledge, skills, experiential learning, and social action. The features of death literacy, as outlined here, are informed by critical health literacy, in particular Laverack's (2014) notion that health literacy is a repackaging of the relationship between health education and empowerment. Health literacy has been described as having three levels: basic/functional literacy, communicative/ interactive literacy, and critical literacy. The critical health literacy model reinforces the need for genuine community development and engagement practices (Sallnow and Paul 2015; Nutbeam 2000). Within the context of a caring network, becoming death literate did not occur via traditional modes of health education alone, instead the caring role was the main catalyst to learning. This is distinctly at odds with the current trend toward carer training and formal death education programmes for people facing end of life. Because death education programmes are typically not designed to mobilize networks or create social action they may actually promote compliance with the dominant medical approach by reinforcing the primacy of professional knowledge. As such these traditional models of education rarely recognize, mobilize or develop the existing knowledge within communities (Chinn 2011). While further research is required, our research suggests that the concept of 'death literacy' appears to capture, in an accessible and useful way, the social change outcomes of public health and palliative care (Barry and Patel 2013; Rosenberg 2011; Matthiesen 2014; Richardson 2011). What is now needed is a useable and comprehensive way of measuring both this concept and interventions claiming to further death literacy development.

Research aims:

  • To develop a rigorous, comprehensive, useful and generalizable death literacy index.
  • To design the index in such a manner that it can be used to measure the impact of interventions and strategies aimed at increasing death literacy of individuals, an organisation, a community or a nation.
  • Using the developed index to determine the current state of death literacy in Australia.