Coping with a life-limiting illness is a challenging time, for patients, their families, and healthcare staff. In this qualitative research project, we use a participatory co-design methodology and creative arts-based research methods to:

  1. explore the palliative care journey at St Vincent’s Brisbane (both community and inpatient) and
  2. identify ways to potentially improve it – from the perspective of patients, their families, volunteers, and staff, focussing on both current and future practice.

The project addresses the following key research questions:

  1. What is ‘good palliative care’ from the perspective of the patient, carer/family member and staff – and what changes should be made?
  2. How might arts-based research and participant generated/produced visual images inform hospital palliative service improvements?
  3. How might arts-based research and participant generated/produced visual images engage staff and transform the palliative care experience?

Service improvements to health care depend on engaging patients and their families as equal partners;  this project will provide them with an opportunity to contribute to the development of palliative care at an individual, community and service system level, through adopting qualitative participatory methods including videos, workshops, and participatory visual activities, with the aim to understand the palliative care experience, expectations, and ideas for improvement – now and into the future.  A detailed understanding of participants’ lived experiences will enhance the experience and delivery of palliative care at St Vincent’s Hospital.

Alongside a public exhibition of the findings, knowledge about what works well and what can be improved (in relation to admission process and information, communication, and interactions with health professionals) will inform changes in service delivery, and we anticipate implementing and testing one intervention.

This website will act as a collection point for perspectives on the palliative care experience from patients, carers, family members, and staff working in palliative care. We will also use this website to share information and outcomes of the research as it progresses.

 

This research is funded by St Vincent’s Private Hospital Brisbane and Northside (2020 – 2021).