Death, dying and digital stories

March 21 2019

We have a chapter in Peter Beresford and Sarah Carr’s new book, Social policy first hand: An international introduction to participatory social welfare. As the title indicates, Social policy first hand rejects paternalistic and controlling approaches to social policy. It looks to the people affected by policy to have a ‘real say’ in the shaping of it – ‘instead of having someone else’s moral, ideological, economic, policy or social solutions imposed on them.’

As a result, Peter and Sarah’s book introduces new voices into the discussion, service users reporting on their lived experiences, their experiential knowledge often derived from being on the receiving end of social policy outcomes. Grassroots activists, human rights campaigners, practitioners and citizens all participate in the discussion.

Our chapter, Death, dying and digital stories, makes its contribution by offering a new perspective on palliative care as part of the life course. We argue that at present many voices are underrepresented in palliative care, such as the disability sector, LGBTQI people and indigenous groups, and that gender issues are not sufficiently addressed. To remedy this, new methods are needed, and we offer one by explaining our work with Māori using digital stories. In particular, we explored Māori whānau experiences of providing care at the end of life for kaumātua and offered implications for social policy research. In essence, we believe that digital stories can be an effective way to bolster community involvement in social policy issues. They offer a means for marginalised groups to explore their own views as well as a way to present them to wider audiences, thereby challenging, and altering, mainstream discourse.