News

Biography writing is an approach that holds much promise for the paediatric palliative care context to support patients and family members. In this special guest blog written by Sarah Potter, we are excited to read about how data from her biography program has been published in an international journal.

I have had the privilege of working with a group of dedicated volunteers and clinicians at the Sydney Children’s Hospital Network (SCHN) Palliative Care team to establish a biography writing program, known as The Story Project. This program, which began about 7 years ago, is run thanks to our excellent team of volunteer biographers. We have now publicly shared details of the program and some early pilot data about the experiences of our volunteers in an international journal, Children.

When we first conceived the idea for The Story Project, Rachel Simpson (from Bear Cottage), who was my original partner in this project, and I discovered that there was nothing in the literature about volunteer-run, biography programs in the paediatric palliative care literature. So we tried to learn from experiences in the adult palliative care context.

The article acknowledges the support of Julie Gissing and Robyn Swanson from Sacred Heart Biography Service during the set-up time and throughout.  The NSW Network of Managers of Palliative Care Volunteers is a true gift in the support and advice we are able to provide each other.  I know the process of establishing the Story Project would have been so much more difficult without the support of Julie, Robyn, and now other services with biography programs.

The Story Project is a tool that may be used with patients, caregivers and siblings, and is therefore a very different model to what has been used in the adult biography context. Biography books may be created especially for siblings, potentially providing them with a communication tool or helping consolidate memories in very young siblings. The role of biography books for caregivers and siblings in the bereavement process is yet to be formally studied, but anecdotally there may be value.

We look forward to continuing our learning in how biography can benefit patients and their families from each and every biography we complete.

Sarah Potter (Volunteer Manager, SCHN Palliative Care Services)

Please click here to read the full article in the international journal, Children.

Reference: Potter, S., Coombs, S., & Jaaniste, T. (2025). Biography writing in the pediatric palliative care context: Review and feasibility data. Children, 12(1), 4.

Photo: (L-R) Two of the three journal article authors Tiina Jaaniste and Sarah Potter.