What's it like starting out on home haemodialysis (HHD)? A team in London have been visiting HHD patients and their families to better understand their experiences of HHD. Their focus has been on how the design of the haemodialysis machine helps or hinders patients and carers, and how people stay safe at home. Although every individual and family is different, and may have received different training and be using any one of several different machines, there were many common themes that emerged across all 19 participating families.
The first step, of course, is starting to use the machine at home. Although people had been trained extensively before starting to dialyse at home, this was a challenging time. Training did not cover everything in detail: there is too much to learn (and some things only crop up occasionally). Everyone received home visits, particularly in the early weeks of dialysing at home, and both a specialist nurse and technician were available at the end of the phone, at least during working hours. Most people faced teething issues and many reported making mistakes: for example, one patient reported being unable to work out what was wrong with his machine: "I had one right at the beginning where it kept alarming and it, I couldn't fathom out why".
Nearly everyone reported feeling scared or worried in the early months of dialyzing at home, particularly when something unfamiliar happened. 12 of the 19 families used the term 'scared' or 'panic' to describe feelings early on. For example: "We had no clue and it was really worrying. We were in a right old panic." But importantly everyone got through this stage and developed confidence in their abilities to manage their own care.
People keep on learning from their own experiences, particularly when they encounter something that had not been covered in training, such as dealing with unfamiliar machine alarms. People learn a lot by trial and error. One patient explained: "It's all by mistakes that you learn the machine, by the machine telling you." Both patients and staff agree that the machines are, to quote one, "pretty idiot proof". It's important to pay attention, particularly while connecting and disconnecting, but the machines are designed with safety as a high priority.
People were also able to learn more from their home therapies nurse and their renal technician. Some of them reported that they felt stupid at times when they couldn't solve problems on their own, but over time they developed strategies for dealing with most situations. Many patients found it helpful to make a note of these things and of the procedure for solving each new problem so that they built up an understanding of the machine and how to troubleshoot it.
Over time, things came to make sense, and eventually the patient and their family became experts in using the technology. People drew analogies with following a recipe and with learning to drive: "when you start driving you're very slow and… but after a few years driving, everything comes naturally and that's the same with this". As people gained confidence, they also felt better able to fit dialysis into their lives: dialyzing at times to fit around other activities rather than letting dialysis dominate their lives. One of the technicians described the benefits of dialyzing at home as: "it brings their life back".