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Many people with kidney failure feel distressed and need psychological support, research shows. The findings may prompt professionals to recognise distress in people with the condition, and encourage discussion. Simply asking how they are feeling could make a difference.

Chronic kidney disease is common in the UK. It can worsen over time and the kidneys may stop working (kidney failure, or end-stage kidney disease). People then either need a kidney transplant, or dialysis (regular treatment to filter waste products from the blood).

Having kidney failure increases the chance of developing anxiety and depression, especially among those having dialysis. But many more experience feelings of distress that are overlooked.

This study explored the distress experienced by people waiting for, or having dialysis, or who had received a transplant. Interviews highlighted 5 main themes: the emotional burden of the disease, having mixed feelings about treatment, strategies for coping, interactions with staff, and the impact of the treatment environment.

Further information on kidney disease is available on the NHS website.

What’s the issue?

Around 3 million people in the UK have chronic kidney disease, a long-term condition in which the kidneys do not work well. It is often caused by uncontrolled diabetes or high blood pressure. People in Black, Asian and minority ethnic communities are 5 times more likely to develop chronic kidney disease than others.

Chronic kidney disease can get worse over time. If the kidneys stop working, people with kidney failure either need a transplant, or to have dialysis several times a week. Dialysis takes over some of the kidneys' functions and filters waste products from the blood. Around 30,000 people in the UK have this ongoing treatment.

More than 1 in 5 people with kidney failure are diagnosed with anxiety and depression. This is most common among those having dialysis. The National Institute for Health and Care Excellence (NICE) recommends psychological support for people with end-stage kidney disease.

Most research to date has focused on anxiety and depression. But studies suggest that around 1 in 3 people with kidney failure have mild to moderate distress. Researchers wanted to understand their experience of distress while undergoing treatment.

What’s new?

The study was carried out at 4 hospital Trusts in the West Midlands. Researchers interviewed 46 adults with kidney failure and mild to moderate distress. Participants were either receiving dialysis, waiting to start dialysis, or had a kidney transplant. Just over 1 in 4 (28%) were from Black, Asian and minority ethnic groups and 61% were male.

People described their distress, the support they needed, their relationships with staff, and how kidney units could better manage their emotional challenges.

Five main themes emerged from the interviews.

1. The emotional burden

Most people said their illness created a substantial emotional burden. They had lost some of their identity and experienced a rollercoaster of emotions. They felt helpless, out of control and angry, frustrated, and distressed.

One woman said: “. . . the reality is that I’ve just got to deal with it. And what I mean by deal with it is that whether I get angry, upset, or you know, downright rude… And I guess the anger is just that I don’t feel like it was my fault.”

2. Mixed views on treatment

People understood that dialysis was lifesaving, and were grateful for it, but many resented its limiting effects. Dialysis sessions restrict normal activities. People have to monitor their medications, fluid intake and diet, and may be fatigued. Some would have liked more information about the possible emotional impact on them.

3. Strategies for coping

A few people had coping strategies. Most strategies were passive (suppressing distressing thoughts, for example). But one person spoke of getting help with housework when it became overwhelming. Those who did have strategies felt better able to cope with the emotional challenges they faced. These people described close relationships with staff members, a strong support network, and feelings of control over their condition and its treatment,

An older man said: “Knowing you’ve got a good team of people behind you. When I go to the hospital it’s not only the transplant team, it’s also I see regular nurses. . .I’ve seen the same faces for years now. . . they’re your little rocks to lean on. And that helps a lot.”

4. Not wanting to complain

Many people hid their emotional state from both staff and family members. Some, especially men, were too embarrassed to talk about feelings. Sessions with a renal psychologist were available in 2 of the 4 sites, but they were not routinely offered to people who were distressed (rather than anxious or depressed).

Most people felt staff were too busy to listen - or to do anything beyond provide treatment. They did not think staff members would be able to address their emotional needs.

One woman said: “I don’t feel I could just phone them up and say ‘well I’m feeling really down today and feel really bad and had enough and I just want to give up the dialysis for good’. . . They’ve not been trained for counselling and things like that, they’ve been trained for doing the dialysis.”.

However, several people appreciated the support they had received from kidney unit staff. This was especially when staff noticed changes in their behaviour that indicated emotional issues. Many felt better when staff listened to them, even if nothing could be done to resolve an issue.

5. The treatment environment

Some people said that a lack of private rooms made it difficult to discuss emotional issues with staff. Others described staff members’ attempts to create a light-hearted and jovial atmosphere. Some enjoyed this, but for others, it made it harder to discuss emotional problems. They did not want to bring down the mood in the unit.

Why is this important?

Distress was a significant problem for people with kidney failure but was often overlooked or missed altogether. People’s experiences point to the support they need. More education could help them prepare emotionally for their condition and its treatment. This could help them to manage their expectations and develop coping strategies.

Half of the kidney units had an on-site renal psychologist. But sessions were limited and not routinely offered to people expressing distress. People showing signs of distress could benefit from sessions with a psychologist. Other staff members could benefit from training to recognise and respond to distress and to help the people they are caring for manage their treatment.

People felt staff did not have the time to listen to them. Many said it was helpful to have someone on the kidney unit they could talk to about their distress. This was true even when there were no solutions. Staff should be encouraged to talk about distress as a normal part of the care they provide. They should try to remove barriers to talking about emotional issues.

What’s next?

This study was carried out among people with kidney failure in the West Midlands only. This may make findings less generalisable in other regions. However, they may be relevant to people with other long-term conditions linked with distress.

The NHS recommends peer support, which means that people with chronic kidney disease help each other. They can share coping strategies that have worked for them with others who may be struggling. Units could look for ways of encouraging peer support.

Some of the Trusts that took part in the study have made changes to their kidney units as a result. For example, some have internal staff meetings in which anxiety and depression are discussed. Staff in some units now ask people on these units directly about their emotional state, rather than waiting for them to volunteer the information.

You may be interested to read

This NIHR Alert is based on: Sein K, and others. Emotional distress and adjustment in patients with end-stage kidney disease: A qualitative exploration of patient experience in four hospital trusts in the West Midlands, UK. PLoS One 2021;15:11

Further research from the same team:

Damery S, and others. The challenge of managing mild to moderate distress in patients with end stage renal disease: results from a multi-centre, mixed methods research study and the implications for renal service organisation. BMC Health Services Research 2019;19:989

Combes G, and others. Distress in patients with end-stage renal disease: staff perceptions of barriers to the identification of mild-moderate distress and the provision of emotional support. PLoS One 2019;14:11

Damery S, and others. The prevalence of lower level emotional and psychological support needs in patients with end stage renal disease: results from a multi-centre patient survey. BMJ Open 2019;9:e027082


Funding: This research was funded by the NIHR Collaboration for Leadership in Applied Health Research and Care West Midlands, now recommissioned as the NIHR Applied Research Collaboration (ARC) West Midlands.

Conflicts of Interest: The study authors declare no conflicts of interest.

Disclaimer: NIHR Alerts are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that views expressed in NIHR Alerts are those of the author(s) and reviewer(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.


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Commentaries

Study author

End-stage kidney disease (kidney failure) is a life-altering condition; people experience multiple emotional and psychological problems. While UK guidelines mandate that psychological and emotional support are provided, it seems that support is targeted at severe issues. People with mild to moderate distress may have their needs unrecognised and go untreated.

This study was exploratory and indicates the extent of the distress in this population. More research is needed to build on these insights before practice can change. However, the NHS Trusts which took part have made some changes to their practice in response to feedback from the research team.

Sarah Damery, Research Fellow, Institute for Applied Health Research, University of Birmingham

Lived experience 

I have received a transplant and was interested in this research. It highlights the emotional impact of end-stage kidney disease and will widen the discussion about it.

The paper stresses the need for an interdisciplinary approach to treatment. The authors recognise that the sample is too small to make generalisations; further and more detailed research is needed.

Alan Hancock, Public Contributor, Milton Keynes

Specialist doctor 

I have decades of experience in looking after people with end-stage kidney disease and am very aware of the emotional trauma many people experience. I am frustrated by the lack of support available within my own unit, and the low priority given to discussions about the need for such support.

This study is well-conducted and the comments from patients are powerful. Most renal professionals are already aware that end-stage kidney disease creates psychological and socioeconomic trauma; but access and funding for psychosocial support in renal units are patchy.

People making decisions about, or already having, dialysis or a kidney transplant, need psychosocial support.

Management of long-term conditions is not just about measurable biomedical factors. The person has to live with their condition and care should be for the whole person.

Edwina Brown, Consultant Nephrologist and Professor of Renal Medicine, Imperial College Renal & Transplant Centre and Imperial College London  

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