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Type and Title of Submission


Title:

'Realising Life Goes on' Creating a slide show of life on home dialysis to inspire and encourage new patients

Description:

It is hard for pre-dialysis patients to imagine life on dialysis. We have collected home dialysis patients' photographs of their life experiences while living with this treatment for many years. We created a simple slide show in order to educate, inspire and provide hope to pre-dialysis patients and their carers, and to enable them to make a more informed choice about their future dialysis treatment. We use the slide show during patient education sessions, and also to inform new staff joining our unit.

Category:

Clinical

Does the submission relate to the general implementation of all NICE guidance?

No

Does the submission relate to the implementation of a specific piece of NICE guidance?

Yes

Full title of NICE guidance:

CG73 - Chronic kidney disease

Category(s) that most closely reflects the nature of the submission:

Patient Support/ Education

Is the submission industry-sponsored in any way?

No


Description of submission


Aim

Our overall aim is to support and inform patients who are approaching established renal failure, (meaning patients would have to choose a dialysis treatment soon). We wanted to help them to have a clear view of all the treatment options available to them, including home haemodialysis and peritoneal dialysis, together known as home dialysis. Previously, despite the various educational materials available, it was quite difficult for patients to imagine themselves on home dialysis and how it would impact their everyday life. The slide show provides this information in an easy to use format. If shows 'real people' from all walks of life enjoying life on home dialysis. This gives potential patients the confidence to realise that 'if he can do that, I can do that'

Objectives

1) Help pre- dialysis patients and their carers to be fully informed about their choices in an easy to understand way, to enhance the information sessions already in place. 2) Raise awareness of this modality to existing patients on Haemodialysis, or patients whose kidney transplants are beginning to fail. These patients may be unaware of other options available to them 3) Raising awareness about the benefits and flexibility of home dialysis to new and existing renal staff, who rarely meet our patients, and perhaps have less experience in this area.

Context

Prior to the slide show being developed, it was quite difficult for future patients to envisage themselves on home dialysis. The pre dialysis education sessions sometimes included patients who spoke about their life on home dialysis, but one person's point of view is not always useful to a room containing people from a wide range of ages and backgrounds. Also, while it is easy for potential patients to visit a haemodialysis unit to observe dialysis, it less easy or appropriate to arrange visits to patients homes to watch home dialysis "in action". We were aware that the home dialysis modality was being under-represented, despite our best efforts during the teaching sessions, simply because it was harder to see what it is like, and we felt people might benefit from gaining a better understanding.

Methods

It was very simple to implement this change. 1)We had been asking patients to collect photos of their life on dialysis for years, so had a good selection. 2)Through a chance collaboration with a teacher, I was shown the computer application 'photostory3' which is freely available on the internet. 3)I scanned and arranged the photographs of our patients on home dialysis, creating a photostory of my own. 3)The patients gave their consent to use the photos, and signed the Trust's consent forms. Any patients who could not be contacted had their identity discretely obscured. 4)After showing the photostory to key members of the renal team, I approached the nurses who coordinate the pre dialysis education. They agreed to trial the photostory, and updated the patients' feedback forms to include this. 5)Since June 2009 126 patients, carers and staff have formally attended the education sessions and seen the slide show. Others have viewed it on a laptop. It has been exceptionally well received and has had positive feed back. The photostory is now on the shared computer drive of the renal department, so it is available to all staff members. It will be shown on a large information screen in the outpatients waiting area, so reaching an even wider audience. The technology to enable this last part to happen has taken longer to arrange, but the first trials should be in October. Results: 1)Pre dialysis patients and carers say they are inspired and encouraged, and have more insight into what home dialysis is about 2)We are gradually raising awareness of Home Dialysis to patients who are currently on Haemodialysis, using group teaching sessions and one to one education. Patients who are approaching the end of their kidney transplant will be able to view the slide show on the screen in the renal outpatients waiting area. 3)All renal staff members have access to the shared drive and many have already viewed the slide show, although its promotion is on-going.

Results and evaluation

As mentioned above, we monitored the impact of the photostory by collating patients comments. All the feedback was very positive, with comments such as 'realising life goes on' and 'inspirational and uplifting.' It has made me realise that it is essential to give hope to our patients, at this frightening time, and a good way to achieve this is to see pictures of 'real' patients getting on with their lives. I have shown this presentation at a couple of seminars, with very positive feedback from pre-dialysis nursing staff, who hope to develop something similar themselves. I am considering publishing or presenting my results, perhaps at the International Society of Peritoneal Dialysis conference. So far I have only 3 months experience of the photostory.

Key learning points

1)Understandably, patients are inspired by and encouraged to see others in their own situation doing well and living their lives. 2) A simple way of achieving this is to use photos from a large range of patients' experiences (age range and background). 3) The patients who donate the photos are so pleased to have been able to help and support others, and enjoy seeing the show. This is an easy to arrange form of peer support. 4)It's simple to make the show yourself, and update as new photos become available. You can make the show specific to your own needs, and not rely on perhaps more 'corporate' productions from dialysis providers. 5) One patient in her early twenties commented that the people shown in the photostory are all 'old' (the youngest being about 32!). We now mention the age range at the beginning of the show, to highlight that the youngest patients on home dialysis tend to get transplanted very rapidly, so we don't get photos of them. 6) Since the slideshow's introduction, our patient referrals have noticeably increased, which could at least in part be attributed to increased awareness of home dialysis, although it is impossible to measure.

View the supporting material

Contact Details

Name:Caroline Judge
Job Title:Lead Nurse Home Dialysis
Organisation:East Kent Hospitals University NHS Foundation Trust
Address:Ethelbert Road,
Town:Canterbury
County:Kent
Postcode:CT1 3NG
Phone:01227 864124
Email:caroline.judge@ekht.nhs.uk

 

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This page was last updated: 02 October 2009

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Accessibility | Cymraeg | Freedom of information | Vision Impaired | Contact Us | Glossary | Data protection | Copyright | Disclaimer | Terms and conditions

Copyright 2014 National Institute for Health and Care Excellence. All rights reserved.

Accessibility | Cymraeg | Freedom of information | Vision Impaired | Contact Us | Glossary | Data protection | Copyright | Disclaimer | Terms and conditions

Copyright 2014 National Institute for Health and Care Excellence. All rights reserved.