Living well on Haemodialysis
The Brief
Working alongside a team made up of researchers from the Universities of Derby and Nottingham and health professional I assist with the ongoing development of specially designed materials to help people live better on haemodialysis. Psychological support is essential for people adjusting to the treatment and to the mental health challenges they face.
As someone who has experience of both hospital and home haemodialysis for chronic kidney disease (CKD) I act as an advocate for those people in the kidney community receiving haemodialysis.
You can learn more about the project in the article below.
‘Living Well on Haemodialysis’: a version of Acceptance and Commitment Therapy for people receiving haemodialysis
‘Living Well on Haemodialysis’ is an online psychological support programme funded by Kidney Care UK and the British Renal Society.
Author(s) : TBC, TBC, TBC
What the project involved
The project involved a team including medical experts in kidney disease, an Acceptance and Commitment Therapy (ACT) therapist based in a dialysis unit, and health psychology researchers. However, the most important contribution came from people with personal experience of haemodialysis, who acted as expert advisors.
First, 18 people with experience of haemodialysis helped to ensure the content of the programme was relevant and useful, and the mode of delivery was suitable for people receiving haemodialysis. We then ran a small pilot trial with another 13 people with experience of haemodialysis. This showed that participant recruitment, retention and engagement were all good, with no adverse events. Participant feedback and changes in measured outcomes were also good.
Why we did the research
Haemodialysis extends the lives of people with kidney failure, but it is an unpleasant, disruptive treatment that many people struggle to adjust to. Interviews with people with long-term experience of haemodialysis showed that successful adjustment involved reaching acceptance and building emotional resilience. Psychological support in dialysis units is limited and many people find their lives so disrupted that attending traditional counselling or psychotherapy is difficult, even when offered online, so people need psychological support that can be accessed in a flexible way when they need it.
What is Acceptance and Commitment Therapy (ACT)?
ACT is a mindfulness-based therapy to help people adjust to persistent challenging circumstances. Whereas cognitive behavioural therapy (CBT) aims to change what people think about themselves and their circumstances, ACT recognises that for some people, changing negative and distressing thoughts is not realistic. Instead, ACT helps people to stop being distressed by their thoughts and feelings and to focus on things in their lives they truly value. This approach is especially useful for people experiencing difficult and challenging circumstances that are unlikely to change. ACT promotes ‘psychological flexibility,’ which means being open, in touch with the present moment, and doing things that are consistent with one’s goals and values. It does this through stories using metaphor and paradox, and through mental exercises. There is a generic version of ACT, but it is important to adapt both the content and delivery of ACT to ensure it addresses the specific challenges faced by the intended users.
What came out of it
‘Living Well on Haemodialysis’ is a 4-week programme of 19 short films using Toonly©, comprising four ‘story’ films (with fictional patients represented by cartoon figures and scripted audio recorded by real haemodialysis patients) and 12 ‘explainer’ films (short presentations of ACT techniques with audio recorded by a qualified ACT therapist), plus introduction and overview films at the beginning and end, and an Urgent Help film with signposting to sources of human support. The introduction video above gives an idea of the overall approach.
With a further small grant from Kidney Care UK, we are improving the sound quality and hosting the programme on a web platform to make it more easily accessed. We are also applying for funding for a larger, randomized controlled trial.
What we learnt and how it can be used in practice
The project illustrates the value of co-production, as professionals and people with personal experience of haemodialysis worked together to produce the programme. We need to conduct a further trial but the work so far shows that it helps people to know that others share their feelings of frustration, anger and resentment about needing haemodialysis, for the feedback in the pilot trial included many comments like these:
“The program […] made me aware that I’m not on my own with the feelings I have towards dialysis.”
“I found it very comforting that all the issues I was experiencing with haemodialysis were very normal and were being experienced by other people. It helped me to feel less lonely.”
The project also showed that haemodialysis is easier to live with if people can remember what they truly value in their lives and continue with activities that are consistent with those values, as well as using their time on haemodialysis in constructive ways, for example by studying, learning new skills or pursuing interests.