Experiences of home haemodialysis

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.

Compliance, adherence, and quality of life

My father-in-law used to refuse presents on the principle that all he wanted was a "bucket full of good health". And that was something that no one is really in a position to give. Fortunately for him (and us!) he remained pretty healthy and active until his last few weeks. And this is true for many of us: that we have mercifully little experience of chronic ill health. But not everyone is so lucky.

My team has been privileged to work with people suffering from chronic kidney disease, and with their families, to better understand their experiences and their needs when managing their own care. Some people with serious kidney disease have a kidney transplant. Others have dialysis (which involves having the blood 'cleansed' every couple of days). There is widespread agreement amongst clinicians that it's best for people if they can do this at home. And the people we worked with (who are all successful users of dialysis technology at home) clearly agreed. They were less concerned, certainly in the way they talked with us, about their life expectancy than about the quality of their lives: their ability to go out (for meals, on holiday, etc.), to work, to be with their families, to feel well. Sometimes, that demanded compromise: some people reported adopting short-cuts, mainly to reduce the time that dialysis takes. And one had her dialysis machine set up on her verandah, so that she could dialyse in a pleasant place. Quality of life matters too.

The health literature often talks about "compliance" or "adherence", particularly in relation to people taking medication. There's the same concern with dialysis: that people should be dialysing according to an agreed schedule. And mostly, that seemed to be what people were doing. But sometimes they didn't because other values dominated. And sometimes they didn't because the technology didn't work as intended and they had to find ways to get things going again. Many of them had turned troubleshooting into an art! As more and more health management happens at home, which means that people are immediately and directly responsible for their own welfare, it seems likely that terms like "compliance" and "adherence" need to be re-thought to allow us all to talk about living as enjoyably and well as we can – with the conditions we have and the available means for managing those conditions. And (of course) the technology should be as easy to use and safe as possible. Our study is hopefully of interest: not just to those directly affected by kidney disease or caring or designing technology for managing it, but also for those thinking more broadly about policy on home care and how responsibility is shared between clinicians, patients and family.