The majority of people with a terminal illness spend most of their final year at home being cared for by family, friends, neighbours and community members.
Research shows, that people caring for their dying at home can have more positive experiences when supported by informal networks of community members. In fact participating in such an informal network has been shown to be transformational at individual and collective levels, improving a community’s capacity to care.
Community capacity building at end of life can contribute to models of care that provide greater community self-sufficiency and sustainability within the context of an ageing society.
Caring at end of life hopes to further develop our knowledge and understanding of informal care networks; how they work, what impact they have on the people involved and their community, does being involved affect our capacity to care and how do formal and informal supports interact?
Our research methods include photovoice and network mapping, as well as focus groups and interviews cross nationally. Refocusing end of life care to a social approach emphasising relationships and community capacity will inform national palliative and public health policy with the aim of positively impacting carers and caring practices at end of life.
Bringing our dying home, the previous 2-year study conducted by UWS Social Justice Social Change Research Group in conjunction with HOME Hospice and Cancer Council NSW documents these findings. Click here to read the full report.