Ģ��tv��Ƶ

Chronic kidney disease (CKD) is a long-term illness where the kidneys slowly stop working. People with CKD and their healthcare team make decisions about which type of treatment will fit best into a person’s everyday life and protect their kidneys, manage symptoms, and slow down damage to their body from losing kidney function. When CKD gets worse it is called ‘kidney failure.’

Treatments for kidney failure include transplant, dialysis, and conservative care. Some people successfully adjust to treatments whilst others find them difficult to cope with. People undergoing dialysis report distress, anxiety, depression, and may regret starting treatment.^1-6 Kidney transplant recipients can experience frustration and disillusionment when post-transplant recovery and quality of life do not match expectations^7-9.

Health professionals provide information to help people prepare and make decisions about kidney treatments, however it may be that people who have lived experience of treatment could provide more easily understood and relevant information. This is called ‘peer support’ – when people are helped by others with the same illness to understand the lived experience of illness and treatment, that may not be appreciated or conveyed by healthcare professionals.

¹⁰ Peer support can happen formally when organised by a health service or charity, or informally when talking with a relative, patient or family member. It can be part of a one-to-one conversation, as part of a group, and in face-to-face or on-line communications. Peer support can happen at home, at hospital, or in community settings and is valued by people with CKD, providing encouragement, empathy, confidence, reassurance, and hope^10-12.

Many people with kidney disease like to learn from peer supporters and feel more hopeful and confident after doing so, however, we do not fully understand what it is about peer support that makes it a useful intervention.

Dr Anna Winterbottom, Senior Health Services Researcher at the Ģ��tv��Ƶ Renal Unit, is Principal Investigator on a new research project which explores how learning from peer supporters might improve a patient’s lived experience of dialysis and transplantation, by helping them to better understand what to expect from the treatment.

¹³ Supported by the renal research team at St James University Hospital and King’s College Hospital, London, we will survey people’s views using interviews and questionnaires and ask about their expectations and experiences of kidney treatments both before and after they start them. We will particularly ask if they learned anything from peer supporters, and if so, how this experience affected them. To develop the study we talked to a small group of people with lived experience of kidney disease; they told us the following,

“As a kidney dialysis patient and then transplant recipient I found some elements of my treatment to be almost overwhelming. Having someone else who had experienced the same situation to talk with and listen to would, I feel, have been really helpful in several ways; from giving support in coming to terms with the life shortening condition I now had, the assimilation of lots of new information, managing my condition day to day, as well as being able to help understand how I might feel.” G.D., PPI team member.

“Many kidney patients regret not having enough knowledge about their illness until their condition becomes severe. I would like to see more resources put into patient education to raise awareness for kidney health. An efficient peer support system requires the involvement of the NHS, private sectors, and charities. They should be provided early. Prevention is always better than treatment.” M.B., PPI team member.

A report of our findings will help kidney units better help patients prepare for kidney treatments. For more information please contact, Dr Anna Winterbottom.

References

1. Stringer S & Baharani J. Why did I start dialysis? A qualitative study on views and expectations from an elderly cohort of patients with end-stage renal failure starting haemodialysis in the United Kingdom. International Urolology & Nephrology. 2012; 44:295–300
2. Goh ZS, Griva K. Anxiety and depression in patients with end-stage renal disease: impact and management challenges – a narrative review. Int J Nephrol Renovasc Dis. 2018;11:93-102.
3. Sein K, Damery S, Baharani J, et al. 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. 2020;15(11): e0241629.
4. Frontini R, Sousa H, Ribeiro Ó, et al. “What do we fear the most?”: Exploring fears and concerns of patients, family members and dyads in end-stage renal disease. Scandinavian Journal of Caring Science. 2021;35(4):1216-1225.
5. Hounkpatin HO, Leydon GM, Veighey K, et al. Patients’ and kidney care team’s perspectives of treatment burden and capacity in older people with chronic kidney disease: a qualitative study BMJ Open 2020;10:e042548.
6. Alsing J. Hayes Bauer, E. Brandt, F. et al. Expectations and Experiences of Patients Recently Initiated to Centre-Based Dialysis Treatment. Healthcare 2022; 10: 897.
7. Jamieson NJ, Hanson CS, Josephson MA, et al. Motivations, Challenges, and Attitudes to Self-management in Kidney Transplant Recipients: A Systematic Review of Qualitative Studies. Am J Kidney Dis. 2016;67(3):461-78.��
8. Pinter J,  Hanson CS,  Chapman JR, et al.  Perspectives of Older Kidney Transplant Recipients on Kidney Transplantation CJASN. 2017; 12(3); 443-453.
9. Pinter J, Hanson CS, Craig JC, et al. ‘I feel stronger and younger all the time’-perspectives of elderly kidney transplant recipients: Thematic synthesis of qualitative research. Nephrol Dial Transplant 2016;31: 1531–1540.
10. Hughes J, Wood E, Smith G. Exploring kidney patients’ experiences of receiving individual peer support. Health Expectations. 2009;12(4):396-406.
11. Billington E, Simpson J, Unwin J, et al. Does hope predict adjustment to end-stage renal failure and consequent dialysis? British Journal of Health Psychology. 2008;13(Pt 4):683-99.
12. Rahimipour M, Shahgholian N, Yazdani M. Effect of hope therapy on depression, anxiety, and stress among the patients undergoing hemodialysis. Iran Journal of Nursing & Midwifery Research. 2015;20(6):694-9.
13. Winterbottom A, Wood E, Mooney A, Bucknall K, Bekker HL. The role of peer support in coping and adjustment to dialysis and transplantation: study protocol. PLOS One. (Accepted for publication 22/01/2025)