{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,25]],"date-time":"2026-08-25T11:20:47Z","timestamp":1787656847968,"version":"build-2736575974"},"reference-count":28,"publisher":"Springer Science and Business Media LLC","issue":"9","license":[{"start":{"date-parts":[[2026,3,3]],"date-time":"2026-03-03T00:00:00Z","timestamp":1772496000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.springernature.com\/gp\/researchers\/text-and-data-mining"},{"start":{"date-parts":[[2026,3,3]],"date-time":"2026-03-03T00:00:00Z","timestamp":1772496000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/www.springernature.com\/gp\/researchers\/text-and-data-mining"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Int Urol Nephrol"],"DOI":"10.1007\/s11255-026-05074-8","type":"journal-article","created":{"date-parts":[[2026,3,3]],"date-time":"2026-03-03T14:57:45Z","timestamp":1772549865000},"page":"3863-3871","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["A qualitative study on treatment decision-making experiences of primary caregivers of children with difficult-to-treat nephrotic syndrome"],"prefix":"10.1007","volume":"58","author":[{"given":"Cuicui","family":"L\u00fc","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Chunhui","family":"Zhang","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Xiaoxiao","family":"Luan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nini","family":"Sun","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Li","family":"Liu","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2026,3,3]]},"reference":[{"issue":"2","key":"5074_CR1","doi-asserted-by":"publisher","first-page":"87","DOI":"10.1542\/pir.2020-001230","volume":"43","author":"E Rodriguez-Ballestas","year":"2022","unstructured":"Rodriguez-Ballestas E, Reid-Adam J (2022) Nephrotic syndrome. Pediatr Rev 43(2):87\u201399","journal-title":"Pediatr Rev"},{"issue":"6","key":"5074_CR2","doi-asserted-by":"publisher","first-page":"1193","DOI":"10.1681\/ASN.2021111472","volume":"33","author":"EY-h Chan","year":"2022","unstructured":"Chan EY-h, Ellen L, Angeletti A, Arslan Z, Basu B, Boyer O et al (2022) Long-term efficacy and safety of repeated rituximab to maintain remission in idiopathic childhood nephrotic syndrome: an international study. J Am Soc Nephrol 33(6):1193\u20131207","journal-title":"J Am Soc Nephrol"},{"issue":"3","key":"5074_CR3","doi-asserted-by":"publisher","DOI":"10.1111\/petr.13955","volume":"25","author":"LT Weber","year":"2021","unstructured":"Weber LT, T\u00f6nshoff B, Grenda R, Bouts A, Topaloglu R, G\u00fclhan B et al (2021) Clinical practice recommendations for recurrence of focal and segmental glomerulosclerosis\/steroid\u2010resistant nephrotic syndrome. Pediatr Transplant 25(3):e13955","journal-title":"Pediatr Transplant"},{"key":"5074_CR4","unstructured":"Abdou A, Lakha A. Nursing intervention for children 0\u20135 years needing intensive care for respiratory infection. 2024."},{"issue":"10404","key":"5074_CR5","doi-asserted-by":"publisher","first-page":"809","DOI":"10.1016\/S0140-6736(23)01051-6","volume":"402","author":"M Vivarelli","year":"2023","unstructured":"Vivarelli M, Gibson K, Sinha A, Boyer O (2023) Childhood nephrotic syndrome. Lancet 402(10404):809\u2013824","journal-title":"Lancet"},{"issue":"7","key":"5074_CR6","doi-asserted-by":"publisher","first-page":"1644","DOI":"10.1016\/j.pec.2020.11.031","volume":"104","author":"C Riffin","year":"2021","unstructured":"Riffin C, Wolff JL, Butterworth J, Adelman RD, Pillemer KA (2021) Challenges and approaches to involving family caregivers in primary care. Patient Educ Couns 104(7):1644\u20131651","journal-title":"Patient Educ Couns"},{"key":"5074_CR7","doi-asserted-by":"publisher","DOI":"10.1177\/2054358119898016","volume":"7","author":"CI Esezobor","year":"2020","unstructured":"Esezobor CI, Solarin AU, Olagunju AT (2020) Significant burden and psychological distress among caregivers of children with nephrotic syndrome: a cross-sectional study. Can J Kidney Health Dis 7:2054358119898016","journal-title":"Can J Kidney Health Dis"},{"issue":"1","key":"5074_CR8","doi-asserted-by":"publisher","first-page":"28","DOI":"10.3329\/icmj.v11i1.58702","volume":"11","author":"R Tahshin","year":"2021","unstructured":"Tahshin R, Shimul SN, Akter F, Islam SI (2021) Health-related quality of life, financial and psychosocial impact on parents having children with nephrotic syndrome. Ibrahim Card Med J 11(1):28\u201334","journal-title":"Ibrahim Card Med J"},{"issue":"7","key":"5074_CR9","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2024-097602","volume":"15","author":"A Okpere","year":"2025","unstructured":"Okpere A, Samuel S, King-Shier K, Hamiwka L, Elliott M (2025) Patient and caregiver perspectives on treatment strategies and care priorities of childhood steroid-sensitive nephrotic syndrome: a qualitative study. BMJ Open 15(7):e097602","journal-title":"BMJ Open"},{"key":"5074_CR10","doi-asserted-by":"publisher","DOI":"10.1177\/20543581221139025","volume":"9","author":"A Okpere","year":"2022","unstructured":"Okpere A, Samuel S, King-Shier K, Hamiwka L, Elliott MJ (2022) The diagnostic journey of childhood idiopathic nephrotic syndrome: perspectives of children and their caregivers. Can J Kidney Health Dis 9:20543581221139025","journal-title":"Can J Kidney Health Dis"},{"key":"5074_CR11","doi-asserted-by":"publisher","DOI":"10.1016\/j.ebr.2023.100619","volume":"24","author":"R Salom","year":"2023","unstructured":"Salom R, Aras LM, Pi\u00f1ero J, Dunabeitia JA (2023) The psychosocial impact of caring for children with Dravet syndrome. Epilepsy Behav Rep 24:100619","journal-title":"Epilepsy Behav Rep"},{"key":"5074_CR12","doi-asserted-by":"publisher","DOI":"10.1016\/j.yebeh.2024.109932","volume":"158","author":"M LoPresti","year":"2024","unstructured":"LoPresti M, Igarashi A, Sonohara Y, Bowditch S (2024) The emotional burden of caring for patients with Lennox-Gastaut syndrome, Dravet syndrome, and tuberous sclerosis complex-associated epilepsy: a qualitative study in Japan. Epilepsy Behav 158:109932","journal-title":"Epilepsy Behav"},{"issue":"1","key":"5074_CR13","doi-asserted-by":"publisher","first-page":"379","DOI":"10.1186\/s13023-023-02980-3","volume":"18","author":"D Walkowiak","year":"2023","unstructured":"Walkowiak D, Domaradzki J (2023) Parental experiences and needs of caring for a child with 22q11. 2 deletion syndrome. Orphanet J Rare Dis 18(1):379","journal-title":"Orphanet J Rare Dis"},{"key":"5074_CR14","unstructured":"Okpere AN. Patient experience and healthcare priorities in childhood steroid sensitive nephrotic syndrome. 2021."},{"issue":"2","key":"5074_CR15","doi-asserted-by":"publisher","first-page":"234","DOI":"10.25259\/IJN_5_2024","volume":"35","author":"J Shukla","year":"2025","unstructured":"Shukla J, Gupta A, Kalra R (2025) Quality of life of children with idiopathic nephrotic syndrome. Indian J Nephrol 35(2):234","journal-title":"Indian J Nephrol"},{"issue":"2","key":"5074_CR16","doi-asserted-by":"publisher","first-page":"191","DOI":"10.1177\/0272989X221125408","volume":"43","author":"S Ozdemir","year":"2023","unstructured":"Ozdemir S, Ng S, Chaudhry I, Teo I, Malhotra C, Finkelstein EA et al (2023) Caregiver-reported roles in treatment decision making in advanced cancer and associated caregiving burden and psychological distress: a longitudinal study. Med Decis Making 43(2):191\u2013202","journal-title":"Med Decis Making"},{"issue":"9","key":"5074_CR17","doi-asserted-by":"publisher","first-page":"826","DOI":"10.1177\/01939459231186900","volume":"45","author":"JY Shin","year":"2023","unstructured":"Shin JY, Pohlig R, Habermann B (2023) Impacts of perceived choice on physical strain, emotional stress and health among caregivers. West J Nurs Res 45(9):826\u2013832","journal-title":"West J Nurs Res"},{"key":"5074_CR18","doi-asserted-by":"crossref","unstructured":"Matthews M, Reid J, McKeaveney C, Noble H, editors. Knowledge requirements and unmet needs of informal caregivers of patients with end-stage kidney disease (ESKD) receiving haemodialysis: a narrative review. Healthcare; 2021: MDPI.","DOI":"10.3390\/healthcare10010057"},{"key":"5074_CR19","unstructured":"Fan W, Ganesan I, Leow EH, Jia Ying YAPC, Yong Hong NG (2023) Exploring the health-seeking behaviours, care and support needs of caregivers of children with idiopathic nephrotic syndrome: a mixed-methods study. Singapore Nursing J 50(1)"},{"issue":"3","key":"5074_CR20","first-page":"333","volume":"3","author":"Y Herien","year":"2020","unstructured":"Herien Y, Gamayanti IL, Nurjannah I (2020) Mothers\u2019 experience in caring children with nephropatic syndrome during relapse: a phenomenological study. Int J Nurs Health Serv (IJNHS) 3(3):333\u2013343","journal-title":"Int J Nurs Health Serv (IJNHS)"},{"issue":"5","key":"5074_CR21","doi-asserted-by":"publisher","first-page":"621","DOI":"10.1053\/j.ajkd.2024.03.030","volume":"84","author":"S Alasfar","year":"2024","unstructured":"Alasfar S, Koubar SH, Gautam SC, Jaar BG (2024) Kidney care in times of crises: a review. Am J Kidney Dis 84(5):621\u2013631","journal-title":"Am J Kidney Dis"},{"issue":"3","key":"5074_CR22","doi-asserted-by":"publisher","DOI":"10.3390\/kidneydial5030032","volume":"5","author":"CT Faldu","year":"2025","unstructured":"Faldu CT, Knicely DH (2025) Advanced chronic kidney disease and patient education. Kidney Dial 5(3):32","journal-title":"Kidney Dial"},{"issue":"3","key":"5074_CR23","doi-asserted-by":"publisher","first-page":"438","DOI":"10.1002\/jimd.12209","volume":"43","author":"MT Gerstein","year":"2020","unstructured":"Gerstein MT, Markus AR, Gianattasio KZ, Le Mons C, Bartos J, Stevens DM et al (2020) Choosing between medical management and liver transplant in urea cycle disorders: a conceptual framework for parental treatment decision\u2010making in rare disease. J Inherit Metab Dis 43(3):438\u2013458","journal-title":"J Inherit Metab Dis"},{"key":"5074_CR24","unstructured":"Graves G. Treatment Decision Regret in End Stage Kidney Disease Patients Choosing Medical Management With No Dialysis, In-Home Dialysis or In-Center Dialysis: Insights for Shared Decision-Making Improvement: Thomas Jefferson University; 2024."},{"issue":"7","key":"5074_CR25","doi-asserted-by":"publisher","first-page":"1465","DOI":"10.1111\/apa.15111","volume":"109","author":"E Lo Cao","year":"2020","unstructured":"Lo Cao E, Amir N, McKay A, Durkan AM (2020) Parental understanding of relapsing idiopathic nephrotic syndrome\u2014where are the knowledge gaps? Acta Paediatr 109(7):1465\u20131472","journal-title":"Acta Paediatr"},{"issue":"11","key":"5074_CR26","doi-asserted-by":"publisher","first-page":"3423","DOI":"10.1007\/s00467-025-06862-7","volume":"40","author":"N Lan","year":"2025","unstructured":"Lan N, Zhao C, Wang L, Tang H, Zhou W, Zhu H et al (2025) Parental perspectives on the effectiveness and safety of rituximab in treating pediatric nephrotic syndrome: a nationwide multi-center survey study. Pediat Nephrol 40(11):3423\u20133436","journal-title":"Pediat Nephrol"},{"issue":"6","key":"5074_CR27","doi-asserted-by":"publisher","first-page":"S41","DOI":"10.1016\/j.anai.2024.08.151","volume":"133","author":"V Hernandez-Trujillo","year":"2024","unstructured":"Hernandez-Trujillo V, Ramirez N, Sumino K, Williams D, Patel M, Gardner D (2024) Perceptions of biologic treatment for children with asthma in a survey of US caregivers. Ann Allergy Asthma Immunol 133(6):S41","journal-title":"Ann Allergy Asthma Immunol"},{"issue":"8","key":"5074_CR28","doi-asserted-by":"publisher","first-page":"883","DOI":"10.1080\/14737167.2024.2383406","volume":"24","author":"EE Duru","year":"2024","unstructured":"Duru EE, Ben-Umeh KC, Mattingly TJ (2024) Cost of long-term care and balancing caregiver wellbeing: a narrative review. Expert Rev Pharmacoecon Outcomes Res 24(8):883\u2013897","journal-title":"Expert Rev Pharmacoecon Outcomes Res"}],"container-title":["International Urology and Nephrology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s11255-026-05074-8.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s11255-026-05074-8","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s11255-026-05074-8.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,8,25]],"date-time":"2026-08-25T10:40:17Z","timestamp":1787654417000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s11255-026-05074-8"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,3,3]]},"references-count":28,"journal-issue":{"issue":"9","published-online":{"date-parts":[[2026,9]]}},"alternative-id":["5074"],"URL":"https:\/\/doi.org\/10.1007\/s11255-026-05074-8","relation":{},"ISSN":["1573-2584"],"issn-type":[{"value":"1573-2584","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,3,3]]},"assertion":[{"value":"4 September 2025","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"25 February 2026","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"3 March 2026","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"The authors declare no competing interests.","order":1,"name":"Ethics","label":"Conflict of interests","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"All procedures involving human participants were conducted in accordance with the ethical standards of the institutional and\/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards. The study was approved by the Bioethics Committee of the Medical University of Qingdao University (Approval No. QFELLQFELL-YJ-2025\u201391).","order":2,"name":"Ethics","label":"Ethics approval","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"Written informed consent was obtained from the parents. Verbal informed consent was obtained prior to the interview.","order":3,"name":"Ethics","label":"Consent to participate","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"Not applicable.","order":4,"name":"Ethics","label":"Consent to publish","group":{"name":"EthicsHeading","label":"Declarations"}}]}}