This project is looking for people to be part of the patient and public involvement and engagement (PPIE) group to refine and shape the design, analysis, and sharing of results.
The project examines conversations between healthcare professionals and patients with advanced heart failure talking about the course of the disease, future care, and the end of life. The research wants to find out where these conversations happen, how doctors/nurses and patients talk together, and how patients feel afterwards. By finding out what helps these conversations or what makes them more difficult, the results may lead to more effective training for doctors and nurses about how to improve the quality of these discussions.
The research is being conducted by Dr Christina Chu who is completing a PhD at the Marie Curie Palliative Care Research Department at University College London. This project is funded by the National Institute for Health and Care Research (NIHR).
They are looking for:
For the PPIE group, I am looking for people who:
Have a diagnosis of heart failure that:
- Marked limitation of physical activity. Less than ordinary activity (for example, walking less than 100m) causes fatigue, palpitation, shortness of breath or chest pain
- Causes symptoms at rest
OR
Currently care for, or previously cared for, someone with the above condition
Expected commitment from participants:
It is understood there may be periods where you are unable to attend a meeting or continue to be part of the group.
Meeting dates are not yet set but the first meeting is expected to be in April or May 2024.
- Meetings take place virtually appropriately 2 times per year over the course of the project (currently 3 years)
- Each meeting is expected to be around 1.5 to 2 hours and there will be around 1 hour of preparation needed beforehand
- Review documents (for example, for ethics submission or patient information leaflets) and provide feedback on these
- Contribute towards the analysis by exploring what they mean for patients and their loved ones
- Share findings in your networks
- Provide feedback on how meetings are conducted and run
Commitment to inclusion:
- Materials and introductory guidance documents provided, as well as support to access specific training resources if required.
- Support to join meetings remotely or to join via dialling a standard telephone number
- Reimbursement for time and expenses are covered.
- Documents can be sent by post and in large font or script if necessary
- Payment required to cover carer costs can be discussed.
Closing date to apply: Sunday 24th March 2024, end of the day
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