Presented by: Merryn Gott
This presentation showcases a new book written by Ros Capper, who cared at home for her husband, Mike, while working part time prior to his death from cancer. Ros identified a significant gap in the current available support for palliative home carers. She decided to address this gap by writing a book drawing on her own experience and inviting four other families who had also provided palliative home care to contribute. The book addresses many issues which have been overlooked by the ‘professional’ palliative care literature. These include tips for how to build a ‘home care team’ and when to have honest conversations about care choices; Ros, for example, identifies periods of temporary respite from symptoms following palliative treatments such as chemotherapy as a good time to embark on these.
The need to share knowledge amongst palliative home carers was identified in a participatory project led by Lisa Williams. The Te Arai Palliative Care and End of Life Research Group provided support for the project, including some of the production costs of the book. As such, this project also provides an example of how researchers can work collaboratively with the people who hold the real knowledge and expertise regarding palliative home caring to create practical resources to support their vital work.
Ros is not able to attend the conference in person, but will appear via video to describe the project and her plans to use the book as a foundation for a larger community initiative.