An open letter to study participants:
You generously shared your experiences of managing your care on home haemodialysis (HHD), and of using the dialysis machine. You were one of 19 patients and families, or members of care teams, across four NHS Trusts who took part in the study. There were lots of common themes in what you told us:
- about the challenges of learning to do dialysis in the first place (and how scary it was in the first few weeks at home), but how it became routine (“like driving a car”) over time;
- about the challenges of troubleshooting, particularly when the problem was an unfamiliar one;
- about the ways your home care team support you – and might be able to support you better if you had more seamless data exchange with your team;
- about the common difficulties, such as clearing bubbles from the system and remembering to open and close all clamps at the right time; and
- about the various strategies you have discovered for keeping yourselves safe.
The project has now finished, and we’ve been reporting the findings as widely as possible:
- We’ve published a paper in a nephrology journal (http://www.biomedcentral.com/1471-2369/15/195/) on patients’ and carers’ experiences of interacting with home haemodialysis technology, and identified implications for quality and safety. A couple of short articles based on that paper have been published on the Shared Care website on home dialysis (https://shareddialysis-care.org.uk/home-therapies).
- A second paper has been published in a biomedical informatics journal (http://www.sciencedirect.com/science/article/pii/S1532046415001124). This focuses on a theoretical approach called Distributed Cognition. This helped to better understand the social structures that support people’s interactions with the dialysis machine.
- A further paper reflecting on how people cope with the demands of HHD has been accepted by the Journal of Renal Nursing. A draft can be seen at http://www.chi-med.ac.uk/research/bibdetail.php?PPnum=PP328 .
- We’ve given talks on the work at various events attended by clinicians, patients and manufacturers.
We hope that this project can ‘make visible’ your experiences and practices in managing care at home, and that this will help manufacturers to design next-generation systems, and nephrology services in planning effective home care support.
Thank you to everyone (patients, carers and professionals) who made the study possible.