{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,3]],"date-time":"2026-06-03T18:22:57Z","timestamp":1780510977306,"version":"3.54.1"},"reference-count":77,"publisher":"Public Library of Science (PLoS)","issue":"6","license":[{"start":{"date-parts":[[2026,6,3]],"date-time":"2026-06-03T00:00:00Z","timestamp":1780444800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100001631","name":"University College Dublin","doi-asserted-by":"publisher","award":["The student received funding to complete their doctoral studies (of which this study is a component) from University College Dublin (UCD) PhD Scholarship (Children\u2019s Nursing) 2022."],"award-info":[{"award-number":["The student received funding to complete their doctoral studies (of which this study is a component) from University College Dublin (UCD) PhD Scholarship (Children\u2019s Nursing) 2022."]}],"id":[{"id":"10.13039\/501100001631","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["www.plosone.org"],"crossmark-restriction":false},"short-container-title":["PLoS One"],"abstract":"<jats:sec id=\"sec001\">\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Rare renal disorders are a group of complex conditions that can lead to progressive kidney failure and lifelong multi-system complications. Upon reaching young adulthood, adolescents and young adults must navigate the healthcare transition between paediatric and adult services. This process serves to bridge the gap between health services and provide adolescents and young adults with developmentally appropriate support to manage adult life with their condition. However, this process can prove challenging for adolescents and young adults with rare renal disorders, a research area that is currently\u00a0under explored.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"sec002\">\n                    <jats:title>Aim<\/jats:title>\n                    <jats:p>To explore the experiences of adolescents and young adults and parents living with a rare renal disorder and undergoing healthcare transition.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"sec003\">\n                    <jats:title>Design<\/jats:title>\n                    <jats:p>Qualitative descriptive study, using reflexive thematic analysis. Results reported according to the COnsolidated Criteria for REporting Qualitative research (COREQ) checklist.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"sec004\">\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Twenty eight in-depth interviews were conducted, with 17 parents and 11 adolescents and young adults with rare renal disorders.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"sec005\">\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Five themes were developed: 1. the complex and ever-changing nature of rare renal disorders, 2. preparing to move on, 3. understanding the person, 4. building support networks, and 5. care coordination, consistency, and communication. Adolescents and young adults and their parents recognised the need for individualised, collaborative, and holistic approaches to healthcare transition, emphasising the need for comprehensive support that acknowledges other areas of adolescents and young adults lives, including educational transitions, peer connection and psychological support.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"sec006\">\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>This study emphasises the dynamic interplay between health and social systems when planning healthcare transition. This study offers valuable insights into healthcare transition in rare renal disorders. Findings provide a foundation for future research and can inform practice, policy and the development of future healthcare transition interventions.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"sec007\">\n                    <jats:title>Patient or Public Contribution<\/jats:title>\n                    <jats:p>Two adolescents and one parent from a rare-disease advisory group provided input on the study materials.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1371\/journal.pone.0348445","type":"journal-article","created":{"date-parts":[[2026,6,3]],"date-time":"2026-06-03T17:54:01Z","timestamp":1780509241000},"page":"e0348445","update-policy":"https:\/\/doi.org\/10.1371\/journal.pone.corrections_policy","source":"Crossref","is-referenced-by-count":0,"title":["The river meeting the sea: A qualitative exploration of the healthcare transition experiences of adolescents and young adults living with rare renal disorders and their parents"],"prefix":"10.1371","volume":"21","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-6147-8572","authenticated-orcid":true,"given":"Melissa","family":"Kinch","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Thilo","family":"Kroll","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Suja","family":"Somanadhan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"340","published-online":{"date-parts":[[2026,6,3]]},"reference":[{"issue":"1","key":"pone.0348445.ref001","doi-asserted-by":"crossref","first-page":"251","DOI":"10.1186\/s13023-021-01872-8","article-title":"The European Rare Kidney Disease Registry (ERKReg): objectives, design and initial results","volume":"16","author":"G Bassanese","year":"2021","journal-title":"Orphanet J Rare Dis"},{"issue":"9931","key":"pone.0348445.ref002","doi-asserted-by":"crossref","first-page":"1844","DOI":"10.1016\/S0140-6736(14)60659-0","article-title":"Rare inherited kidney diseases: challenges, opportunities, and perspectives","volume":"383","author":"Board of the Working Group for Inherited Kidney Diseases of the European Renal Association and European Dialysis and Transplant Association","year":"2014","journal-title":"Lancet"},{"issue":"4","key":"pone.0348445.ref003","doi-asserted-by":"crossref","first-page":"528","DOI":"10.2215\/CJN.0000000000000374","article-title":"Rare kidney diseases: children being left out in the cold","volume":"19","author":"A Iyengar","year":"2023","journal-title":"Clin J Am Soc Nephrol"},{"issue":"10","key":"pone.0348445.ref004","first-page":"1700","article-title":"Unraveling the Complexity of Childhood Polycystic Kidney Disease: A Case Study of Three Sisters","volume":"10","author":"I Trutin","year":"2023","journal-title":"Children (Basel)"},{"key":"pone.0348445.ref005","doi-asserted-by":"crossref","DOI":"10.1016\/j.pedn.2024.07.026","article-title":"Interventions to support young adults and families with the healthcare transition between paediatric and adult nephrology health services: A systematic scoping review","volume":"78","author":"M Kinch","year":"2024","journal-title":"J Pediatr Nurs"},{"issue":"4","key":"pone.0348445.ref006","doi-asserted-by":"crossref","first-page":"602","DOI":"10.1111\/j.1365-2214.2012.01399.x","article-title":"\u201cIt is life threatening but I don\u2019t mind\u201d. A qualitative study using photo elicitation interviews to explore adolescents\u2019 experiences of renal replacement therapies","volume":"39","author":"F Wells","year":"2013","journal-title":"Child Care Health Dev"},{"issue":"1","key":"pone.0348445.ref007","doi-asserted-by":"crossref","first-page":"165","DOI":"10.1186\/s13023-022-02303-y","article-title":"Consequences of rare diagnoses for education and daily life: development of an observation instrument","volume":"17","author":"G Jaeger","year":"2022","journal-title":"Orphanet J Rare Dis"},{"issue":"1","key":"pone.0348445.ref008","doi-asserted-by":"crossref","first-page":"102","DOI":"10.1080\/09687599.2025.2498412","article-title":"Invisible barriers: the educational and social exclusion of children with chronic diseases in Denmark","volume":"41","author":"L Bjerregaard","year":"2025","journal-title":"Disability & Society"},{"issue":"5","key":"pone.0348445.ref009","doi-asserted-by":"crossref","first-page":"272","DOI":"10.12968\/bjon.2021.30.5.272","article-title":"Adolescence: physical changes and neurological development","volume":"30","author":"O Best","year":"2021","journal-title":"Br J Nurs"},{"issue":"1","key":"pone.0348445.ref010","doi-asserted-by":"crossref","first-page":"130","DOI":"10.1037\/dev0000067","article-title":"Developmental change in social responsibility during adolescence: An ecological perspective","volume":"52","author":"L Wray-Lake","year":"2016","journal-title":"Dev Psychol"},{"issue":"4","key":"pone.0348445.ref011","doi-asserted-by":"crossref","first-page":"174","DOI":"10.1016\/j.paed.2012.12.009","article-title":"Transition in diabetes: young people move on \u2013 we should too","volume":"23","author":"G Dovey-Pearce","year":"2013","journal-title":"Paediatrics and Child Health"},{"key":"pone.0348445.ref012","doi-asserted-by":"crossref","first-page":"160","DOI":"10.1016\/j.pedn.2017.05.003","article-title":"SPN Position Statement: Transition of Pediatric Patients Into Adult Care","volume":"35","author":"CL Betz","year":"2017","journal-title":"J Pediatr Nurs"},{"issue":"7","key":"pone.0348445.ref013","doi-asserted-by":"crossref","first-page":"704","DOI":"10.1038\/ki.2011.209","article-title":"Transition from pediatric to adult renal services: a consensus statement by the International Society of Nephrology (ISN) and the International Pediatric Nephrology Association (IPNA)","volume":"80","author":"AR Watson","year":"2011","journal-title":"Kidney Int"},{"issue":"6","key":"pone.0348445.ref014","doi-asserted-by":"crossref","first-page":"996","DOI":"10.1016\/j.jpedsurg.2015.03.021","article-title":"Outcome differences between young children and adolescents undergoing kidney transplantation","volume":"50","author":"ID Bobanga","year":"2015","journal-title":"J Pediatr Surg"},{"key":"pone.0348445.ref015","doi-asserted-by":"crossref","DOI":"10.1136\/bmj.e3718","article-title":"Bridging the gap: an integrated paediatric to adult clinical service for young adults with kidney failure","volume":"344","author":"PN Harden","year":"2012","journal-title":"BMJ"},{"issue":"10","key":"pone.0348445.ref016","doi-asserted-by":"crossref","first-page":"556","DOI":"10.1038\/nrneph.2013.166","article-title":"Transplantation: Risk of graft loss in adolescent kidney allograft recipients","volume":"9","author":"SJ Allison","year":"2013","journal-title":"Nat Rev Nephrol"},{"issue":"6","key":"pone.0348445.ref017","doi-asserted-by":"crossref","first-page":"1326","DOI":"10.1097\/TP.0000000000003445","article-title":"Loss to Follow-up in Adolescent and Young Adult Renal Transplant Recipients","volume":"105","author":"TA Melanson","year":"2021","journal-title":"Transplantation"},{"key":"pone.0348445.ref018","doi-asserted-by":"crossref","first-page":"1584257","DOI":"10.3389\/fped.2025.1584257","article-title":"Transition from pediatric to adult nephropathic cystinosis care: the structure, challenges and lessons learned","volume":"13","author":"B Borsheim","year":"2025","journal-title":"Front Pediatr"},{"issue":"1","key":"pone.0348445.ref019","doi-asserted-by":"crossref","first-page":"186","DOI":"10.1186\/s40359-022-00893-7","article-title":"The psychosocial needs of adolescent and young adult kidney transplant recipients, and associated interventions: a scoping review","volume":"10","author":"F Wurm","year":"2022","journal-title":"BMC Psychol"},{"issue":"7","key":"pone.0348445.ref020","doi-asserted-by":"crossref","DOI":"10.1136\/bmjopen-2020-042856","article-title":"Acceptance and commitment therapy meets peer-support. Development of a supportive self-care intervention for patients with rare diseases: a multistage development process","volume":"11","author":"MK Depping","year":"2021","journal-title":"BMJ Open"},{"issue":"2","key":"pone.0348445.ref021","doi-asserted-by":"crossref","first-page":"421","DOI":"10.1007\/s11845-025-03902-x","article-title":"Psychological supports for people living with a rare disease in Ireland: an online survey-based study","volume":"194","author":"D Nerney","year":"2025","journal-title":"Ir J Med Sci"},{"issue":"5","key":"pone.0348445.ref022","doi-asserted-by":"crossref","first-page":"443","DOI":"10.1177\/1744987119880234","article-title":"An overview of the qualitative descriptive design within nursing research","volume":"25","author":"L Doyle","year":"2020","journal-title":"J Res Nurs"},{"issue":"1","key":"pone.0348445.ref023","doi-asserted-by":"crossref","first-page":"77","DOI":"10.1002\/nur.20362","article-title":"What\u2019s in a name? Qualitative description revisited","volume":"33","author":"M Sandelowski","year":"2010","journal-title":"Res Nurs Health"},{"issue":"6","key":"pone.0348445.ref024","doi-asserted-by":"crossref","first-page":"349","DOI":"10.1093\/intqhc\/mzm042","article-title":"Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups","volume":"19","author":"A Tong","year":"2007","journal-title":"Int J Qual Health Care"},{"key":"pone.0348445.ref025","article-title":"Patient and public involvement in research (PPI) [Internet].","author":"Health Service Executive HSE."},{"issue":"4","key":"pone.0348445.ref026","doi-asserted-by":"crossref","first-page":"216","DOI":"10.1080\/01944366908977225","article-title":"A Ladder Of Citizen Participation","volume":"35","author":"SR Arnstein","year":"1969","journal-title":"Journal of the American Institute of Planners"},{"key":"pone.0348445.ref027","doi-asserted-by":"crossref","first-page":"21","DOI":"10.1186\/s12874-016-0114-6","article-title":"The use of purposeful sampling in a qualitative evidence synthesis: A worked example on sexual adjustment to a cancer trajectory","volume":"16","author":"C Benoot","year":"2016","journal-title":"BMC Med Res Methodol"},{"issue":"13","key":"pone.0348445.ref028","doi-asserted-by":"crossref","first-page":"1753","DOI":"10.1177\/1049732315617444","article-title":"Sample Size in Qualitative Interview Studies: Guided by Information Power","volume":"26","author":"K Malterud","year":"2016","journal-title":"Qual Health Res"},{"issue":"2","key":"pone.0348445.ref029","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":"Qualitative Research in Sport, Exercise and Health"},{"issue":"11","key":"pone.0348445.ref030","doi-asserted-by":"crossref","first-page":"1632","DOI":"10.1177\/1049732309350879","article-title":"Protecting respondent confidentiality in qualitative research","volume":"19","author":"K Kaiser","year":"2009","journal-title":"Qual Health Res"},{"issue":"11","key":"pone.0348445.ref031","doi-asserted-by":"crossref","DOI":"10.1136\/bmjopen-2017-018291","article-title":"Qualitative study to understand the barriers to recruiting young people with cancer to BRIGHTLIGHT: a national cohort study in England","volume":"7","author":"C Kenten","year":"2017","journal-title":"BMJ Open"},{"key":"pone.0348445.ref032","doi-asserted-by":"crossref","first-page":"105888","DOI":"10.1016\/j.ypmed.2019.105888","article-title":"Challenges recruiting diverse youth for physical activity research","volume":"131","author":"N Botchwey","year":"2020","journal-title":"Prev Med"},{"issue":"4","key":"pone.0348445.ref033","doi-asserted-by":"crossref","first-page":"213","DOI":"10.1093\/swr\/svx016","article-title":"Adolescent Recruitment Strategies lessons learned from a university-based study of social anxiety","volume":"41","author":"DE Parrish","year":"2017","journal-title":"Social Work Research"},{"issue":"1","key":"pone.0348445.ref034","first-page":"3","article-title":"The health care transition research consortium health care transition model: a framework for research and practice","volume":"7","author":"CL Betz","year":"2014","journal-title":"J Pediatr Rehabil Med"},{"key":"pone.0348445.ref035","author":"Health Service Executive HSE","year":"2018"},{"issue":"2","key":"pone.0348445.ref036","doi-asserted-by":"crossref","first-page":"6","DOI":"10.7748\/nr2012.01.19.2.6.c8902","article-title":"The effects of the presence or absence of parents on interviews with children","volume":"19","author":"H Gardner","year":"2012","journal-title":"Nurse Res"},{"key":"pone.0348445.ref037","doi-asserted-by":"crossref","DOI":"10.4135\/9781446249420","volume-title":"Researching Young People\u2019s Lives","author":"S Heath","year":"2009"},{"key":"pone.0348445.ref038","doi-asserted-by":"crossref","DOI":"10.4135\/9781526419439","volume-title":"Interviewing Children and Young People for Research","author":"M O\u2019Reilly","year":"2017"},{"key":"pone.0348445.ref039","doi-asserted-by":"crossref","DOI":"10.1007\/978-3-319-69909-7_3470-2","volume-title":"Thematic analysis: a practical guide","author":"V Braun","year":"2022"},{"key":"pone.0348445.ref040","doi-asserted-by":"crossref","DOI":"10.1016\/0147-1767(85)90062-8","volume-title":"Naturalistic Inquiry","author":"YS Lincoln","year":"1985"},{"issue":"3","key":"pone.0348445.ref041","doi-asserted-by":"crossref","first-page":"100415","DOI":"10.1016\/j.xkme.2022.100415","article-title":"Polycystic kidney disease\u2013related disease burden in adolescents with autosomal dominant polycystic kidney disease: an international qualitative study","volume":"4","author":"D Oberdhan","year":"2022","journal-title":"Kidney Medicine"},{"issue":"4","key":"pone.0348445.ref042","doi-asserted-by":"crossref","DOI":"10.1093\/ckj\/sfaf067","article-title":"Patient and caregiver perspectives on mental health in children and adolescents with chronic kidney disease","volume":"18","author":"LG Torrisi","year":"2025","journal-title":"Clin Kidney J"},{"issue":"5","key":"pone.0348445.ref043","doi-asserted-by":"crossref","first-page":"222","DOI":"10.3345\/cep.2021.01004","article-title":"Psychological aspects in children and parents of children with chronic kidney disease and their families","volume":"65","author":"A Aier","year":"2022","journal-title":"Clin Exp Pediatr"},{"issue":"1","key":"pone.0348445.ref044","doi-asserted-by":"crossref","first-page":"242","DOI":"10.1186\/s13023-023-02837-9","article-title":"Living with a rare disease - experiences and needs in pediatric patients and their parents","volume":"18","author":"S Witt","year":"2023","journal-title":"Orphanet J Rare Dis"},{"issue":"1","key":"pone.0348445.ref045","doi-asserted-by":"crossref","first-page":"138","DOI":"10.1186\/s13023-016-0521-0","article-title":"Parents\u2019 experiences of living with, and caring for children, adolescents and young adults with Mucopolysaccharidosis (MPS)","volume":"11","author":"S Somanadhan","year":"2016","journal-title":"Orphanet J Rare Dis"},{"key":"pone.0348445.ref046","doi-asserted-by":"crossref","first-page":"31","DOI":"10.1016\/j.pedn.2025.01.003","article-title":"Assessing the supportive care needs of parents of children with rare diseases in Ireland","volume":"81","author":"S Somanadhan","year":"2025","journal-title":"J Pediatr Nurs"},{"issue":"12","key":"pone.0348445.ref047","doi-asserted-by":"crossref","first-page":"1783","DOI":"10.1038\/s41431-019-0460-z","article-title":"Current management of transition of young people affected by rare renal conditions in the ERKNet","volume":"27","author":"M Kreuzer","year":"2019","journal-title":"Eur J Hum Genet"},{"key":"pone.0348445.ref048","doi-asserted-by":"crossref","first-page":"689758","DOI":"10.3389\/fped.2021.689758","article-title":"Multidisciplinarity in transition pathways for patients with kidney disease: the current state of play","volume":"9","author":"D Scarponi","year":"2021","journal-title":"Frontiers in Pediatrics"},{"issue":"8","key":"pone.0348445.ref049","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pone.0201098","article-title":"Why is transition between child and adult services a dangerous time for young people with chronic kidney disease? A mixed-method systematic review","volume":"13","author":"DJ Dallimore","year":"2018","journal-title":"PLoS One"},{"issue":"6","key":"pone.0348445.ref050","doi-asserted-by":"crossref","first-page":"973","DOI":"10.1007\/s00467-017-3728-y","article-title":"Moving on: transitioning young people with chronic kidney disease to adult care","volume":"33","author":"A Francis","year":"2018","journal-title":"Pediatr Nephrol"},{"key":"pone.0348445.ref051","doi-asserted-by":"crossref","first-page":"27","DOI":"10.1016\/j.pedn.2022.07.015","article-title":"Improved health care transition for young adults with developmental disabilities referred from designated transition clinics","volume":"67","author":"E Fremion","year":"2022","journal-title":"J Pediatr Nurs"},{"issue":"3","key":"pone.0348445.ref052","doi-asserted-by":"crossref","first-page":"295","DOI":"10.1016\/j.jadohealth.2010.07.009","article-title":"Readiness to transfer to adult care of adolescents with chronic conditions: exploration of associated factors","volume":"48","author":"A van Staa","year":"2011","journal-title":"J Adolesc Health"},{"issue":"6","key":"pone.0348445.ref053","doi-asserted-by":"crossref","first-page":"821","DOI":"10.1111\/j.1365-2214.2011.01261.x","article-title":"Crossing the transition chasm: experiences and recommendations for improving transitional care of young adults, parents and providers","volume":"37","author":"AL van Staa","year":"2011","journal-title":"Child Care Health Dev"},{"issue":"6","key":"pone.0348445.ref054","doi-asserted-by":"crossref","first-page":"435","DOI":"10.1089\/pop.2016.0167","article-title":"Impact of a Complex Care Management Model on Cost and Utilization Among Adolescents and Young Adults with Special Care and Health Needs","volume":"20","author":"DD Maeng","year":"2017","journal-title":"Popul Health Manag"},{"key":"pone.0348445.ref055","doi-asserted-by":"crossref","first-page":"20543581231191836","DOI":"10.1177\/20543581231191836","article-title":"Transition From Pediatric to Adult Nephrology Care: Program Report of a Single-Center Experience","volume":"10","author":"AV Cybulsky","year":"2023","journal-title":"Can J Kidney Health Dis"},{"issue":"1","key":"pone.0348445.ref056","doi-asserted-by":"crossref","first-page":"406","DOI":"10.1186\/s12882-025-04225-w","article-title":"Predictors of failure to transition from pediatric to adult nephrology care","volume":"26","author":"L Nishi","year":"2025","journal-title":"BMC Nephrol"},{"key":"pone.0348445.ref057","article-title":"P1820the development of transition services in renal care in synergy with young patients, parents and pediatric and adult health care providers: a co-creation approach","volume":"35","author":"H Els","year":"2020","journal-title":"Nephrology Dialysis Transplantation"},{"issue":"7","key":"pone.0348445.ref058","doi-asserted-by":"crossref","first-page":"865","DOI":"10.1007\/s00431-010-1364-7","article-title":"Transition from pediatric to adult health care: expectations of adolescents with chronic disorders and their parents","volume":"170","author":"C Rutishauser","year":"2011","journal-title":"Eur J Pediatr"},{"issue":"2","key":"pone.0348445.ref059","doi-asserted-by":"crossref","first-page":"756","DOI":"10.1111\/jan.15860","article-title":"Transition readiness and anxiety among adolescents with a chronic condition and their parents: A cross-sectional international study","volume":"80","author":"A Tornivuori","year":"2024","journal-title":"J Adv Nurs"},{"issue":"4","key":"pone.0348445.ref060","doi-asserted-by":"crossref","first-page":"1919","DOI":"10.1111\/hex.13549","article-title":"Shifting responsibilities: A qualitative study of how young people assume responsibility from their parents for self-management of their chronic kidney disease","volume":"25","author":"R Nightingale","year":"2022","journal-title":"Health Expect"},{"issue":"2","key":"pone.0348445.ref061","doi-asserted-by":"crossref","first-page":"305","DOI":"10.1177\/1367493520936422","article-title":"\u201cA confident parent breeds a confident child\u201d: Understanding the experience and needs of parents whose children will transition from paediatric to adult care","volume":"25","author":"KL Shaw","year":"2021","journal-title":"J Child Health Care"},{"key":"pone.0348445.ref062","first-page":"9392040","article-title":"Parental Involvement in the Transition from Paediatric to Adult Care for Youth with Chronic Illness: A Scoping Review of the North American Literature","author":"B Badour","year":"2023","journal-title":"Int J Pediatr"},{"key":"pone.0348445.ref063","doi-asserted-by":"crossref","DOI":"10.1016\/j.pedn.2022.10.014","article-title":"Children and young people\u2019s experiences of living with rare diseases: An integrative review","volume":"68","author":"S Somanadhan","year":"2023","journal-title":"J Pediatr Nurs"},{"issue":"1","key":"pone.0348445.ref064","doi-asserted-by":"crossref","first-page":"19","DOI":"10.1093\/pch\/13.1.19","article-title":"Adherence to treatment in adolescents","volume":"13","author":"D Taddeo","year":"2008","journal-title":"Paediatr Child Health"},{"key":"pone.0348445.ref065","doi-asserted-by":"crossref","DOI":"10.1016\/j.pedn.2024.06.001","article-title":"Peer support in adolescents and young adults with chronic or rare conditions in northern America and Europe: Targeted literature review","volume":"78","author":"S Dave","year":"2024","journal-title":"J Pediatr Nurs"},{"issue":"1","key":"pone.0348445.ref066","doi-asserted-by":"crossref","first-page":"65","DOI":"10.1007\/s40271-014-0085-9","article-title":"Peer support and mentorship in a us rare disease community: findings from the cystinosis in emerging adulthood study","volume":"8","author":"M Doyle","year":"2015","journal-title":"Patient"},{"key":"pone.0348445.ref067","doi-asserted-by":"crossref","first-page":"88","DOI":"10.1186\/s12875-016-0488-x","article-title":"The supportive care needs of parents with a child with a rare disease: results of an online survey","volume":"17","author":"LJ Pelentsov","year":"2016","journal-title":"BMC Fam Pract"},{"key":"pone.0348445.ref068","doi-asserted-by":"crossref","DOI":"10.2196\/71140","article-title":"Quality and misinformation about health conditions in online peer support groups: scoping review","volume":"27","author":"BM Treadgold","year":"2025","journal-title":"J Med Internet Res"},{"issue":"5","key":"pone.0348445.ref069","doi-asserted-by":"crossref","first-page":"903","DOI":"10.1093\/fampra\/cmac004","article-title":"The benefits and challenges of established peer support programmes for patients, informal caregivers, and healthcare providers","volume":"39","author":"JH Joo","year":"2022","journal-title":"Fam Pract"},{"issue":"6","key":"pone.0348445.ref070","doi-asserted-by":"crossref","first-page":"100451","DOI":"10.1016\/j.xkme.2022.100451","article-title":"Psychiatric Diagnoses in Children With CKD Compared to the General Population","volume":"4","author":"JL Stahl","year":"2022","journal-title":"Kidney Med"},{"issue":"7","key":"pone.0348445.ref071","first-page":"933","article-title":"Psychosocial Considerations for the Child with Rare Disease: A Review with Recommendations and Calls to Action","volume":"9","author":"LT Belzer","year":"2022","journal-title":"Children (Basel)"},{"issue":"1","key":"pone.0348445.ref072","doi-asserted-by":"crossref","first-page":"49","DOI":"10.1186\/s13023-022-02190-3","article-title":"Development of models of care coordination for rare conditions: a qualitative study","volume":"17","author":"H Walton","year":"2022","journal-title":"Orphanet J Rare Dis"},{"issue":"2","key":"pone.0348445.ref073","doi-asserted-by":"crossref","first-page":"14","DOI":"10.5334\/ijic.5464","article-title":"Defining coordinated care for people with rare conditions: a scoping review","volume":"20","author":"H Walton","year":"2020","journal-title":"Int J Integr Care"},{"issue":"5","key":"pone.0348445.ref074","doi-asserted-by":"crossref","DOI":"10.1542\/peds.2017-3168","article-title":"Perceptions of health care transition care coordination in patients with chronic illness","volume":"141","author":"M Lemke","year":"2018","journal-title":"Pediatrics"},{"issue":"5","key":"pone.0348445.ref075","first-page":"710","article-title":"The Transition to Adulthood for Youth Living with Rare Diseases","volume":"9","author":"M Sandquist","year":"2022","journal-title":"Children (Basel)"},{"issue":"4","key":"pone.0348445.ref076","doi-asserted-by":"crossref","DOI":"10.1177\/21582440221140098","article-title":"A comparative analysis of data quality in online zoom versus phone interviews: an example of youth with and without disabilities","volume":"12","author":"S Lindsay","year":"2022","journal-title":"Sage Open"},{"issue":"6","key":"pone.0348445.ref077","doi-asserted-by":"crossref","first-page":"642","DOI":"10.1016\/j.pedn.2011.07.003","article-title":"Explicating caregiving by mothers of children with complex needs in ireland: a phenomenological study","volume":"27","author":"HM Nicholl","year":"2012","journal-title":"J Pediatr Nurs"}],"container-title":["PLOS One"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0348445","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,6,3]],"date-time":"2026-06-03T17:54:13Z","timestamp":1780509253000},"score":1,"resource":{"primary":{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0348445"}},"subtitle":[],"editor":[{"given":"Folusho Mubowale","family":"Balogun","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"editor"}]}],"short-title":[],"issued":{"date-parts":[[2026,6,3]]},"references-count":77,"journal-issue":{"issue":"6","published-online":{"date-parts":[[2026,6,3]]}},"URL":"https:\/\/doi.org\/10.1371\/journal.pone.0348445","relation":{},"ISSN":["1932-6203"],"issn-type":[{"value":"1932-6203","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,6,3]]}}}