Background and purpose:
Fear of transplant rejection is a persistent concern among people who receive a kidney transplant that can get in the way of life. In a review of qualitative studies that use in-depth interview data to describe people’s experiences, fear of transplant rejection was illustrated by the following quote from a participant: “I do think we walk on a knife-edge all the time and you can just fall off it” (https://doi.org/10.1053/j.ajkd.2015.07.030). Currently, little is known on how this fear affects living with a kidney transplant and no support is available. Managing uncertainty has, in fact, been raised as a research priority for people living with kidney transplant by the James Lind Alliance.
At King’s College London, Professor Rona Moss-Morris, Dr Joseph Chilcot, and Dr Federica Picariello are developing a research proposal to address this.
We are setting up a small PPI group (3 to 4 people) to help develop a research proposal for a PhD funding application for Kidney Research UK (due in December 2020) focused on understanding fear of transplant rejection and identifying ways to help people manage it.
Members of the PPI group will be asked to offer their perspective of living with a kidney transplant and feedback to guide the methodology of the research proposal. Feedback will be collected via email and in meetings over the phone or zoom according to what works best for all involved.
Members of the PPI group will be expected to read and provide feedback on any materials circulated via email, join phone or zoom meetings where possible, participate in the discussion during meetings, and treat all materials as confidential.
If funding is secured, members of the PPI group will have the opportunity to continue being involved throughout the project, from preparation of materials to contributing to data analysis, and dissemination of findings at the end.
During the proposal development stage, the main contact for the PPI group will be Federica. She is a researcher and health psychologist. She will be available to answer any questions about the project and help members prepare and feel confident to be involved. If funding is secured, the PhD student (who will be recruited) will be the main point of contact for the PPI group. Training will be provided as necessary, for example, on qualitative data analysis to ensure the PPI group feels confident and comfortable to contribute.
We are hoping to receive funding for a 3-year PhD project, and the PPI group will have the opportunity to continue their involvement throughout the project if they wish. If the project receives funding, meetings will take place every three to five months. Again, the format of the meetings will be decided by the group.
During the proposal development stage, we anticipate that involvement will consist of 2 to 3 one-hour meetings and email communication.
Expenses and Reimbursement:
If funding is secured, travel and time costs will be reimbursed in line with the rates recommended by INVOLVE. The current budget estimate for PPI is 3 days a year at £120 per day per person. There will be no travel costs during the proposal development stage and unfortunately at this stage we will not be able to remunerate for the time and effort invested.
If you are interested in participating in this opportunity or would like any further information, please contact Federica Picariello by email (firstname.lastname@example.org) before October 2nd 2020.
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