Background and aim The concept of Death Literacy developed out of strengths based practitioner-led research examining the role that social networks play in home based end of life care. In this research we started by asking the questions: ‘How are ordinary people supporting each other to care for someone dying at home? What happens when they do? How can we capture their stories and illuminate the space of the possible?
Method Over the past 6 years the Caring at end of life research has spoken with over 300 end of life carers, their support networks and service providers in interviews and focus groups.
Results and conclusion While caring is often spoke about as a burden and a drain on social capital what emerged in this research was that caring for someone at the end of their life can be transformational for the carer and their caring network, provided they are well supported by a core group of friends, family neighbours, workplaces and service providers. It became clear that home, as place of dying, is where caring communities can learn about dying and death. Here, it is a community event where each person has a role to play. This engaged learning builds death literacy: an outcome of engagement in, and participation with, the care of the dying and each other. This experience is transformational at individual, network and community levels. It is this transformation which we define as ‘death literacy, or practice wisdom, which anyone can develop. People and communities with high levels of death literacy have context specific knowledge about the death system and the ability to put that knowledge into practice. Once this happens death literacy becomes a resource that people can use for the benefit of themselves, their networks and their communities.
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