You are being invited to take part in a discussion with some researchers about a study we carried out to look at how patients engage and understand fluid management in haemodialysis. Before you decide whether to take part it is important for you to understand why we are doing this and what it will involve. Please take time to read the following information carefully and discuss it with others if you wish. Please contact us (details below) if there is anything that is not clear, or if you would like further information.
What does this involve?
We are conducting 2 meetings with people who have experience of haemodialysis (HD) to support the dissemination and interpretation of our study results which have already been collected and analysed. We recognise the expertise you will bring, and therefore you will be paid £100 in total (£75 for meeting 1 and £25 for meeting 2) for your time and effort.
What was the study about?
The study was a self-report survey which was completed by 1189 people who have haemodialysis at their renal unit (termed incentre HD) and 99 people who have haemodialysis at home (termed home HD). Topics covered included patients’ perception of:
- Their understanding of a target weight
- Their understanding of possible long-term impacts of poor fluid management
- Their involvement in decision making about how much fluid is removed during HD
- Their knowledge and reporting of common symptoms that can occur during HD
- How well they believe staff understand their own unique fluid management
What will I have to do?
The aim of these meetings is to discuss the survey results and their implications, and then together create a key summary of the results which will be disseminated to HD patients. You will therefore be asked for your opinions and contributions about this. The meetings would take place at a time most suitable to the majority of the group and would involve:
- Meeting 1 (up to 3 hours): discuss and reflect upon the survey results. Together identify the results which other patients may find most interesting and should therefore be included in the summary of results which will be disseminated to HD patients. After the meeting, the research team will then develop the draft based upon the discussions in the meeting.
- Meeting 2 (up to 1 hour): Discuss the draft summary of results and make any final changes. Briefly discuss what could be the best way to educate HD patients about their fluid management. This will be brief because there are no firm plans in place to conduct future educational work, but this could help us or other researchers, plan the best direction to go in.
Who will be involved in the meetings?
The meetings would involve up to 4 members of the main research team (see below) and a patient advocate who has worked with us already on the project (depending upon everyone’s availability) and hopefully 3-5 patients from the Kidney Patient Involvement Network, all meeting via Microsoft Teams.
Will the information collected about me be kept confidential?
The meetings will be recorded for note-taking purposes only so that the research team can properly listen to and be involved in discussions during the meeting. The recordings will not be transcribed, and any individual contributions will be anonymised. After the meetings, you will have a final opportunity to say if you want to withdraw any of your comments before notes are taken. Once the notes have been taken, any contributions will then not be able to be withdrawn due to anonymisation. We will not directly ask you about your experiences, involvement, or understanding of HD, but we will ask you to reflect upon the study results.
What will happen to the results of these meetings?
These meetings will be discussed in university work (a PhD thesis), and possibly briefly referred to in publications, but any contributions will remain anonymous. We will send the summary of results we develop during the meetings to English renal units and ask them to display it in an appropriate manner so that patients can access this.
Who has reviewed these meetings?
These patient involvement meetings have been approved by the School of Psychology Ethics Committee ref: PSYC-92 on 15/09/20.
We will ask you to sign a consent form that states you understand the nature of the meetings and that you have had the opportunity to ask any questions. This is due to university ethical procedures.
If you’re interested in taking part in this opportunity, please email us for further information.