Researchers from the University of Technology Sydney are inviting people who are currently receiving palliative care or caring for someone who is receiving palliative care to participate in a research project auspiced by the NSW Bureau of Health Information (BHI).
The research will contribute to the BHI’s Patient Survey Program and aims to develop survey questions that can be used in hospitals and community healthcare to measure the experience and satisfaction of patients with palliative care needs and their carers. Such surveys are routinely used by the BHI to identify aspects of healthcare that can be approved, but their suite of surveys does not yet include any for patients with palliative care needs and their carers. The purpose is to identify the best combination of survey questions to ask patients with palliative care needs and their carers to understand their experience of care and identify areas for improvement within NSW hospitals and community healthcare services.
Participants will be invited to help choose the best survey questions for measuring: 1) respectful and compassionate care; 2) effective communication and shared decision making; 3) effective teamwork; 4) enabling family involvement; 5) maintaining role, meaning and identity; 6) excellence in physical care; 7) impeccable assessment and care planning; 8) effective symptom management; 9) technical competence; 10) patient safety; 11) supported access to senior clinicians; 12) patient-focused structural factors; 13) family-focused structural factors; and 14) cleanliness to support infection control.
Participants will be asked to:
- Complete an anonymous online survey taking about 30-45 minutes, in which participants give brief details about themselves and rate candidate survey questions on their importance, relevance and ease of understanding.
- Attend a 1-hour consumer workshop via video-conference in which project team will discuss the survey questions to identify which ones most people think are best. Participants will also be asked about their preferences for when and how people with palliative care needs and their carers should be asked about their experience of care in hospitals and the community.
- Complete a second anonymous online survey taking about 15-20 minutes, in which participants again rate the importance, relevance and ease of understanding of survey questions, this time focusing on a smaller number identified as ‘best bets’ by the consumer workshop.
For further information or to participate in the study, please contact Domenica Disalvo at [email protected].
The project has received ethical approval from South East Sydney Local Health District Human Research Ethics Committee (2020/ETH03036).
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