{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,18]],"date-time":"2026-08-18T16:07:14Z","timestamp":1787069234789,"version":"build-2736575974"},"reference-count":49,"publisher":"Public Library of Science (PLoS)","issue":"2","license":[{"start":{"date-parts":[[2025,2,10]],"date-time":"2025-02-10T00:00:00Z","timestamp":1739145600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100000291","name":"Kidney Research UK","doi-asserted-by":"crossref","award":["KS_RP_005_20221130"],"award-info":[{"award-number":["KS_RP_005_20221130"]}],"id":[{"id":"10.13039\/501100000291","id-type":"DOI","asserted-by":"crossref"}]}],"content-domain":{"domain":["www.plosone.org"],"crossmark-restriction":false},"short-container-title":["PLoS ONE"],"abstract":"<jats:sec id=\"sec001\">\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>People with kidney failure receiving dialysis or kidney transplantation find it difficult to adapt to treatment related routines and restrictions, and feel frustrated when their expectations aren\u2019t matched by their lived experience. Health professionals provide information to help people prepare for kidney treatments, but it may be that \u2018peer supporters\u2019 - people who live with kidney disease - can provide more easily understood and relevant information. This study will explore how learning from peer supporters might improve the experience of treatment, after dialysis initiation and post-transplantation, by helping them to better understand what to expect from treatments.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"sec002\">\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Two mixed methods studies including in-depth interviews and questionnaires. In each study, participants will be recruited at two timepoints, before commencing dialysis or transplantation, and 6 months later. Questionnaires and interviews will explore expectations and the lived experience of treatment, and if peer support impacts on adjustment and coping with treatment. Participants will be recruited from two large teaching hospitals in the North and South of England, where one has access to a formal kidney peer support program.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"sec003\">\n                    <jats:title>Discussion<\/jats:title>\n                    <jats:p>Delivering peer support in kidney units is increasingly popular, yet provision is inconsistent and generally low quality. Providing an evidence base for it\u2019s use will help guide the optimal development of peer support programmes and efficient allocation of peer resources. A report will be produced to summarise the our findings, which will help kidney units better help people with kidney failure prepare for kidney treatments.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1371\/journal.pone.0318124","type":"journal-article","created":{"date-parts":[[2025,2,10]],"date-time":"2025-02-10T13:35:57Z","timestamp":1739194557000},"page":"e0318124","update-policy":"https:\/\/doi.org\/10.1371\/journal.pone.corrections_policy","source":"Crossref","is-referenced-by-count":4,"title":["The role of peer support in coping and adjustment to dialysis and transplantation: Study protocol"],"prefix":"10.1371","volume":"20","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-1206-9430","authenticated-orcid":true,"given":"Anna","family":"Winterbottom","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Eleri","family":"Wood","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andrew","family":"Mooney","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Keith","family":"Bucknall","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hilary L.","family":"Bekker","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"340","published-online":{"date-parts":[[2025,2,10]]},"reference":[{"issue":"1","key":"pone.0318124.ref001","doi-asserted-by":"crossref","first-page":"153","DOI":"10.1016\/j.transproceed.2018.04.083","article-title":"Return to work and quality of life: a psychosocial survey after kidney transplant","volume":"51","author":"C De Pasquale","year":"2019","journal-title":"Transplant Proc"},{"issue":"6","key":"pone.0318124.ref002","doi-asserted-by":"crossref","first-page":"548","DOI":"10.1177\/0896860819896219","article-title":"Patients\u2019 experiences of transitioning between different renal replacement therapy modalities: a qualitative study","volume":"40","author":"E Holvoet","year":"2020","journal-title":"Perit Dial Int"},{"issue":"12","key":"pone.0318124.ref003","doi-asserted-by":"crossref","first-page":"2307","DOI":"10.1093\/ndt\/gfab342","article-title":"Smoothing transition to dialysis to improve early outcomes after dialysis initiation among old and frail adults \u2013 a narrative review","volume":"37","author":"E Schaeffner","year":"2021","journal-title":"Nephrol Dial Transplant"},{"issue":"1","key":"pone.0318124.ref004","doi-asserted-by":"crossref","first-page":"295","DOI":"10.1007\/s11255-011-0045-4","article-title":"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","volume":"44","author":"S Stringer","year":"2012","journal-title":"Int Urol Nephrol"},{"key":"pone.0318124.ref005","doi-asserted-by":"crossref","first-page":"93","DOI":"10.2147\/IJNRD.S126615","article-title":"Anxiety and depression in patients with end-stage renal disease: impact and management challenges - a narrative review","volume":"11","author":"ZS Goh","year":"2018","journal-title":"Int J Nephrol Renovasc Dis"},{"issue":"11","key":"pone.0318124.ref006","doi-asserted-by":"crossref","first-page":"e0241629","DOI":"10.1371\/journal.pone.0241629","article-title":"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","volume":"15","author":"K Sein","year":"2020","journal-title":"PLoS One"},{"issue":"4","key":"pone.0318124.ref007","doi-asserted-by":"crossref","first-page":"1216","DOI":"10.1111\/scs.12940","article-title":"\u201cWhat do we fear the most?\u201d: exploring fears and concerns of patients, family members and dyads in end-stage renal disease","volume":"35","author":"R Frontini","year":"2021","journal-title":"Scand J Caring Sci"},{"issue":"12","key":"pone.0318124.ref008","doi-asserted-by":"crossref","first-page":"e042548","DOI":"10.1136\/bmjopen-2020-042548","article-title":"Patients\u2019 and kidney care team\u2019s perspectives of treatment burden and capacity in older people with chronic kidney disease: a qualitative study","volume":"10","author":"HO Hounkpatin","year":"2020","journal-title":"BMJ Open"},{"issue":"5","key":"pone.0318124.ref009","doi-asserted-by":"crossref","first-page":"897","DOI":"10.3390\/healthcare10050897","article-title":"Expectations and experiences of patients recently initiated to centre-based dialysis treatment","volume":"10","author":"JFL Alsing","year":"2022","journal-title":"Healthcare (Basel)"},{"issue":"3","key":"pone.0318124.ref010","doi-asserted-by":"crossref","first-page":"461","DOI":"10.1053\/j.ajkd.2015.07.030","article-title":"Motivations, challenges, and attitudes to self-management in kidney transplant recipients: a systematic review of qualitative studies","volume":"67","author":"NJ Jamieson","year":"2016","journal-title":"Am J Kidney Dis"},{"issue":"3","key":"pone.0318124.ref011","doi-asserted-by":"crossref","first-page":"443","DOI":"10.2215\/CJN.05890616","article-title":"Perspectives of older kidney transplant recipients on kidney transplantation","volume":"12","author":"J Pinter","year":"2017","journal-title":"CJASN"},{"issue":"9","key":"pone.0318124.ref012","doi-asserted-by":"crossref","first-page":"1531","DOI":"10.1093\/ndt\/gfv463","article-title":"\u2018I feel stronger and younger all the time\u2019-perspectives of elderly kidney transplant recipients: thematic synthesis of qualitative research","volume":"31","author":"J Pinter","year":"2016","journal-title":"Nephrol Dial Transplant"},{"key":"pone.0318124.ref013","unstructured":"National Institute for Health and Care Excellence. Renal replacement therapy and conservative management NICE guideline. 2018. Available from: www.nice.org.uk\/guidance\/ng107"},{"issue":"1","key":"pone.0318124.ref014","doi-asserted-by":"crossref","first-page":"12","DOI":"10.7182\/pit2013249","article-title":"Completeness and satisfaction with the education and information received by patients immediately after kidney transplant: a mixed-models study","volume":"23","author":"A Haspeslagh","year":"2013","journal-title":"Prog Transplant"},{"issue":"8","key":"pone.0318124.ref015","doi-asserted-by":"crossref","first-page":"2291","DOI":"10.1093\/ndt\/gfm095","article-title":"Evaluating the quality of patient leaflets about renal replacement therapy across UK renal units","volume":"22","author":"A Winterbottom","year":"2007","journal-title":"Nephrol Dial Transplant"},{"issue":"5","key":"pone.0318124.ref016","doi-asserted-by":"crossref","first-page":"653","DOI":"10.1037\/a0012647","article-title":"Mispredicting and misremembering: patients with renal failure overestimate improvements in quality of life after a kidney transplant","volume":"27","author":"D Smith","year":"2008","journal-title":"Health Psychol"},{"issue":"5","key":"pone.0318124.ref017","doi-asserted-by":"crossref","first-page":"710","DOI":"10.1111\/j.1369-7625.2012.00798.x","article-title":"Choosing dialysis modality: decision making in a chronic illness context","volume":"17","author":"A Winterbottom","year":"2014","journal-title":"Health Expect"},{"issue":"6","key":"pone.0318124.ref018","first-page":"225","article-title":"Regret about the decision to start dialysis: a cross-sectional Dutch national survey","volume":"75","author":"N Berkhout-Byrne","year":"2017","journal-title":"Neth J Med"},{"issue":"3","key":"pone.0318124.ref019","doi-asserted-by":"crossref","first-page":"117","DOI":"10.5414\/CN109030","article-title":"Do patients receiving hemodialysis regret starting dialysis? A survey of affected patients","volume":"87","author":"EA Gilman","year":"2017","journal-title":"Clin Nephrol"},{"issue":"7","key":"pone.0318124.ref020","doi-asserted-by":"crossref","first-page":"957","DOI":"10.2215\/CJN.13781119","article-title":"Dialysis regret: prevalence and correlates","volume":"15","author":"F Saeed","year":"2020","journal-title":"Clin J Am Soc Nephrol"},{"issue":"3","key":"pone.0318124.ref021","doi-asserted-by":"crossref","first-page":"321","DOI":"10.1016\/S0020-7489(02)00092-5","article-title":"Peer support within a health care context: a concept analysis","volume":"40","author":"CL Dennis","year":"2003","journal-title":"Int J Nurs Stud"},{"key":"pone.0318124.ref022","volume-title":"You\u2019re not alone: peer support for people with long term conditions","author":"NHS Kidney Care","year":"2013"},{"issue":"2","key":"pone.0318124.ref023","doi-asserted-by":"crossref","first-page":"128","DOI":"10.1111\/jorc.12394","article-title":"Barriers and facilitators to implementing and sustaining peer support in kidney care","volume":"48","author":"E Wood","year":"2022","journal-title":"J Ren Care"},{"issue":"4","key":"pone.0318124.ref024","doi-asserted-by":"crossref","first-page":"396","DOI":"10.1111\/j.1369-7625.2009.00568.x","article-title":"Exploring kidney patients\u2019 experiences of receiving individual peer support","volume":"12","author":"J Hughes","year":"2009","journal-title":"Health Expect"},{"issue":"Pt 4","key":"pone.0318124.ref025","doi-asserted-by":"crossref","first-page":"683","DOI":"10.1348\/135910707X248959","article-title":"Does hope predict adjustment to end-stage renal failure and consequent dialysis?","volume":"13","author":"E Billington","year":"2008","journal-title":"Br J Health Psychol"},{"issue":"6","key":"pone.0318124.ref026","doi-asserted-by":"crossref","first-page":"694","DOI":"10.4103\/1735-9066.170007","article-title":"Effect of hope therapy on depression, anxiety, and stress among the patients undergoing hemodialysis","volume":"20","author":"M Rahimipour","year":"2015","journal-title":"Iran J Nurs Midwifery Res"},{"issue":"3","key":"pone.0318124.ref027","doi-asserted-by":"crossref","first-page":"617","DOI":"10.1111\/hex.12348","article-title":"Peer support for CKD patients and carers: overcoming barriers and facilitating access","volume":"19","author":"F Taylor","year":"2016","journal-title":"Health Expect"},{"issue":"5","key":"pone.0318124.ref028","doi-asserted-by":"crossref","first-page":"e057518","DOI":"10.1136\/bmjopen-2021-057518","article-title":"\u2018It\u2019s the empathy\u2019-defining a role for peer support among people living with chronic kidney disease: a qualitative study","volume":"12","author":"MJ Elliott","year":"2022","journal-title":"BMJ Open"},{"issue":"8","key":"pone.0318124.ref029","doi-asserted-by":"crossref","first-page":"20543581211046078","DOI":"10.1177\/20543581211046078","article-title":"Patient, caregiver, and provider perspectives on improving information delivery in hemodialysis: a qualitative study","volume":"26","author":"P Ferreira da Silva","year":"2021","journal-title":"Can J Kidney Health Dis"},{"issue":"7","key":"pone.0318124.ref030","doi-asserted-by":"crossref","first-page":"838","DOI":"10.1089\/jpm.2018.0439","article-title":"Peer navigator intervention for Latinos on hemodialysis: a single-arm clinical trial","volume":"22","author":"L Cervantes","year":"2019","journal-title":"J Palliat Med"},{"issue":"1","key":"pone.0318124.ref031","doi-asserted-by":"crossref","first-page":"111","DOI":"10.1053\/j.ajkd.2005.03.018","article-title":"Peer mentoring: a culturally sensitive approach to end-of-life planning for long-term dialysis patients","volume":"46","author":"E Perry","year":"2005","journal-title":"Am J Kidney Dis"},{"issue":"7","key":"pone.0318124.ref032","doi-asserted-by":"crossref","first-page":"1070","DOI":"10.2215\/CJN.12921216","article-title":"A systematic review of the prevalence and associations of limited health literacy in CKD","volume":"12","author":"DM Taylor","year":"2017","journal-title":"Clin J Am Soc Nephrol"},{"issue":"1","key":"pone.0318124.ref033","doi-asserted-by":"crossref","first-page":"196","DOI":"10.1186\/s12882-018-0988-0","article-title":"Association between health literacy and self-care behaviors among patients with chronic kidney disease","volume":"19","author":"KK Wong","year":"2018","journal-title":"BMC Nephrol"},{"issue":"1","key":"pone.0318124.ref034","doi-asserted-by":"crossref","first-page":"4","DOI":"10.1111\/jorc.12395","article-title":"Healthcare systems and professionals are key to improving health literacy in chronic kidney disease","volume":"48","author":"HTT Dinh","year":"2022","journal-title":"J Ren Care"},{"issue":"2","key":"pone.0318124.ref035","doi-asserted-by":"crossref","first-page":"113","DOI":"10.1016\/j.nefroe.2022.05.001","article-title":"Kidney health for all: bridging the gap in kidney health education and literacy","volume":"42","author":"RG Langham","year":"2022","journal-title":"Nefrologia (Engl Ed)"},{"issue":"2","key":"pone.0318124.ref036","doi-asserted-by":"crossref","first-page":"32","DOI":"10.61658\/jnsw.v39i2.53","article-title":"Improving health literacy in kidney patients: nephrology social workers as leaders","volume":"39","author":"L Peace","year":"2015","journal-title":"J Nephrol Soc Work"},{"issue":"5","key":"pone.0318124.ref037","doi-asserted-by":"crossref","first-page":"429","DOI":"10.1093\/abm\/kax008","article-title":"On the usefulness of narratives: an interdisciplinary review and theoretical model","volume":"52","author":"VA Shaffer","year":"2018","journal-title":"Ann Behav Med"},{"issue":"7","key":"pone.0318124.ref038","doi-asserted-by":"crossref","first-page":"897","DOI":"10.1177\/0272989X211011100","article-title":"Do personal stories make patient decision aids more effective? an update from the international patient decision aids standards","volume":"41","author":"VA Shaffer","year":"2021","journal-title":"Med Decis Making"},{"issue":"5","key":"pone.0318124.ref039","doi-asserted-by":"crossref","first-page":"895","DOI":"10.1016\/j.kint.2022.01.027","article-title":"Mixed-methods research in nephrology","volume":"101","author":"PK Bailey","year":"2022","journal-title":"Kidney Int"},{"issue":"2","key":"pone.0318124.ref040","doi-asserted-by":"crossref","first-page":"92","DOI":"10.1258\/jhsrp.2007.007074","article-title":"The quality of mixed methods studies in health services research","volume":"13","author":"A O\u2019Cathain","year":"2008","journal-title":"J Health Serv Res Policy"},{"issue":"2","key":"pone.0318124.ref041","doi-asserted-by":"crossref","first-page":"201","DOI":"10.1080\/2159676X.2019.1704846","article-title":"To saturate or not to saturate? Questioning data saturation as a useful concept for thematic analysis and sample-size rationales","volume":"13","author":"V Braun","year":"2019","journal-title":"Qual Res Sport Exerc Health"},{"issue":"5","key":"pone.0318124.ref042","doi-asserted-by":"crossref","first-page":"533","DOI":"10.1007\/s10488-013-0528-y","article-title":"Purposeful sampling for qualitative data collection and analysis in mixed method implementation research","volume":"42","author":"LA Palinkas","year":"2015","journal-title":"Adm Policy Ment Health"},{"key":"pone.0318124.ref043","doi-asserted-by":"crossref","first-page":"11357","DOI":"10.3389\/ti.2023.11357","article-title":"Decisional needs of people from minority ethnic groups around living donor kidney transplantation: a UK healthcare professionals\u2019 perspective","volume":"36","author":"A Ahmed","year":"2023","journal-title":"Transpl Int"},{"issue":"1","key":"pone.0318124.ref044","doi-asserted-by":"crossref","DOI":"10.1177\/1609406917733847","article-title":"Thematic analysis: striving to meet the trustworthiness criteria","volume":"16","author":"LS Nowell","year":"2017","journal-title":"Int J Qualitative Methods"},{"issue":"2","key":"pone.0318124.ref045","doi-asserted-by":"crossref","first-page":"67","DOI":"10.4103\/npmj.npmj_19_20","article-title":"Sample size estimation for health and social science researchers: the principles and considerations for different study designs","volume":"27","author":"OA Bolarinwa","year":"2020","journal-title":"Niger Postgrad Med J"},{"issue":"6","key":"pone.0318124.ref046","doi-asserted-by":"crossref","first-page":"e026712","DOI":"10.1136\/bmjopen-2018-026712","article-title":"Assessment of patients\u2019 expectations: development and validation of the expectation for treatment scale (ETS)","volume":"9","author":"J Barth","year":"2019","journal-title":"BMJ Open"},{"issue":"5","key":"pone.0318124.ref047","doi-asserted-by":"crossref","first-page":"329","DOI":"10.1007\/BF00451725","article-title":"Development of the kidney disease quality of life (KDQOL) instrument","volume":"3","author":"RD Hays","year":"1994","journal-title":"Qual Life Res"},{"issue":"4","key":"pone.0318124.ref048","doi-asserted-by":"crossref","first-page":"e019413","DOI":"10.1136\/bmjopen-2017-019413","article-title":"Development and validation of the multimorbidity treatment burden questionnaire (MTBQ)","volume":"8","author":"P Duncan","year":"2018","journal-title":"BMJ Open"},{"key":"pone.0318124.ref049","unstructured":"Henwood A. York hospital kidney patient peer support network. [cited 2022 Nov 29]. Available from: https:\/\/www.crowdfunder.co.uk\/p\/york-hospital-kidney-peer-support-network"}],"container-title":["PLOS ONE"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0318124","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,2,10]],"date-time":"2025-02-10T13:36:12Z","timestamp":1739194572000},"score":1,"resource":{"primary":{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0318124"}},"subtitle":[],"editor":[{"given":"Jennifer","family":"Tucker","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"editor"}]}],"short-title":[],"issued":{"date-parts":[[2025,2,10]]},"references-count":49,"journal-issue":{"issue":"2","published-online":{"date-parts":[[2025,2,10]]}},"URL":"https:\/\/doi.org\/10.1371\/journal.pone.0318124","relation":{},"ISSN":["1932-6203"],"issn-type":[{"value":"1932-6203","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,2,10]]}}}