1 Parents' Experiences of Shared Decision-Making During Decision-Making for Pediatric LVAD Implantation: A Qualitative Study https://brieflands.com/journals/ijp/articles/171241 10.5812/ijpediatr-171241 1 Background :Pediatric left ventricular assist device (LVAD) implantation is a life-sustaining yet complex decision for children with end-stage heart failure. Parents must engage in shared decision-making (SDM) under conditions of uncertainty, time pressure, and emotional distress. However, evidence regarding how parents experience and navigate this process remains limited. Objectives :This study aimed to explore parents’ experiences of SDM during decision-making for pediatric LVAD implantation. Methods :A qualitative study using semi-structured interviews was conducted with the parents of children who underwent LVAD implantation at the Cardiopulmonary and Extracorporeal Life Support Department of a tertiary children's hospital in China. Participants were recruited using purposive sampling. Interviews were transcribed verbatim and analyzed using inductive qualitative content analysis. Results :Twelve parents participated. Four themes emerged: emotional shock after disrupted disease recognition; navigating unfamiliar technology through understanding and trust; multidimensional value deliberation with survival as the priority; and support gaps and ongoing needs during decision-making. Parents’ decisions were shaped not only by clinical information but also by emotional responses, relational trust, value priorities, and perceived support. Conclusions :SDM in pediatric LVAD implantation occurs within a complex context characterized by emotional distress, technological uncertainty, and relational dynamics. These findings underscore the critical role of nurses in providing emotional support, facilitating clear communication, and supporting parents throughout complex pediatric treatment decisions. 1 11 Hongmei Zhu Children’s Hospital, National Clinical Research Center for Children and Adolescents’ Health and Diseases, Zhejiang University School of Medicine, Hangzhou, Zhejiang, China China 6299021@zju.edu.cn Peiying Wang Children’s Hospital, National Clinical Research Center for Children and Adolescents’ Health and Diseases, Zhejiang University School of Medicine, Hangzhou, Zhejiang, China China 6523348@zju.edu.cn Jihua Zhu Children’s Hospital, National Clinical Research Center for Children and Adolescents’ Health and Diseases, Zhejiang University School of Medicine, Hangzhou, Zhejiang, China China jihuazhu@zju.edu.cn No Keyword 1.pdf [0]Irving C, Azeka E, Adorisio R, Blume ED, Bogle C, Chubb H, et al.The International Society for Heart and Lung Transplantation Guidelines for the Management of Pediatric Heart Failure (Update From 2014). J Heart Lung Transplant. 2025;44(10):e21-71. [PubMed ID: 40838915]. doi: 10.1016/j.healun.2025.06.003.##[1]Shaddy RE, George AT, Jaecklin T, Lochlainn EN, Thakur L, Agrawal R, et al.Systematic Literature Review on the Incidence and Prevalence of Heart Failure in Children and Adolescents. Pediatr Cardiol. 2018;39(3):415-36. [PubMed ID: 29260263]. [PubMed Central ID: PMC5829104]. doi: 10.1007/s00246-017-1787-2.##[2]Watanabe K, Shih R.Update of Pediatric Heart Failure. Pediatr Clin North Am. 2020;67(5):889-901. [PubMed ID: 32888688]. doi: 10.1016/j.pcl.2020.06.004.##[3]Ahmed H, VanderPluym C.Medical management of pediatric heart failure. Cardiovasc Diagn Ther. 2021;11(1):323-35. [PubMed ID: 33708503]. [PubMed Central ID: PMC7944205]. doi: 10.21037/cdt-20-358.##[4]Murni IK, Wirawan MT, Patmasari L, Sativa ER, Arafuri N, Nugroho S, et al.Delayed diagnosis in children with congenital heart disease: a mixed-method study. BMC Pediatr. 2021;21(1). 191. [PubMed ID: 33882901]. [PubMed Central ID: PMC8059230]. doi: 10.1186/s12887-021-02667-3.##[5]Gill G, Rowe G, Chen Q, Malas J, Thomas J, Peiris A, et al.Bridging with surgically placed microaxial left ventricular assist devices: a high-volume centre experience. Eur J Cardiothorac Surg. 2023;63(6). ezad116. [PubMed ID: 36975609]. [PubMed Central ID: PMC10257579]. doi: 10.1093/ejcts/ezad116.##[6]Hollander SA, Murray JM, Dykes JC, Duganiero T, Thompson JS, Hunter T, et al.iDECIDE-VAD-PEDIATRIC: Development of a Decision Aid to Assist Children and Their Caregivers When Considering a Ventricular Assist Device. ASAIO J. 2026;72(3):e37-8. [PubMed ID: 40928086]. doi: 10.1097/MAT.0000000000002552.##[7]Brenner M, Lombard J, Quirke M, Cassidy L, Alexander D.Navigating healthcare decision-making for children requiring life-sustaining medical treatment in Ireland: exploring clinician perspectives through the lens of the Irish legal system. BMC Med Ethics. 2025;26(1). 72. [PubMed ID: 40481514]. [PubMed Central ID: PMC12144792]. doi: 10.1186/s12910-025-01237-x.##[8]Lynch Á, Jeewa A.Mechanical Circulatory Support in Congenital Heart Disease. Children. 2025;12(3):306. [PubMed ID: 40150589]. [PubMed Central ID: PMC11941418]. doi: 10.3390/children12030306.##[9]Phillips KA, Lancaster E, Tuckett S, Galyean P, Zickmund SL, Molina KM, et al.Decision Making in Pediatric Heart Failure and Transplant: A Qualitative Analysis of Parental Decision Making. Pediatr Transplant. 2025;29(8). e70229. [PubMed ID: 41272338]. [PubMed Central ID: PMC12638273]. doi: 10.1111/petr.70229.##[10]Elwyn G, Frosch D, Thomson R, Joseph-Williams N, Lloyd A, Kinnersley P, et al.Shared decision making: a model for clinical practice. J Gen Intern Med. 2012;27(10):1361-7. [PubMed ID: 22618581]. [PubMed Central ID: PMC3445676]. doi: 10.1007/s11606-012-2077-6.##[11]Hoang K, Halpern-Felsher B, Brooks M, Blankenburg R.Shared Decision-making With Parents of Hospitalized Children: A Qualitative Analysis of Parents' and Providers' Perspectives. Hosp Pediatr. 2020;10(11):977-85. [PubMed ID: 33037030]. doi: 10.1542/hpeds.2020-0075.##[12]Verwijmeren D, Grootens KP.Shifting Perspectives on the Challenges of Shared Decision Making in Mental Health Care. Community Ment Health J. 2024;60(2):292-307. [PubMed ID: 37550559]. [PubMed Central ID: PMC10821819]. doi: 10.1007/s10597-023-01170-6.##[13]Koutsavli D, Kalogianni A, Misouridou E, Souvatzi EB, Timmins F, Parissopoulos S.A Thematic Qualitative Synthesis on the Lived Experiences of Patients With Left Ventricular Assist Devices: A Journey From Vulnerability to Resilience. Nurs Crit Care. 2026;31(1). e70295. [PubMed ID: 41510592]. [PubMed Central ID: PMC12784241]. doi: 10.1111/nicc.70295.##[14]Glenn T, Smith C, Miller VA, Wolfe J, Blume ED, Lumeng J, et al.From worries to resilience: a qualitative study of the psychosocial experiences of diverse adolescents and young adults with heart failure and their caregivers. Cardiol Young. 2025;35(1):136-43. [PubMed ID: 39431786]. doi: 10.1017/S1047951124026660.##[15]Graneheim UH, Lundman B.Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today. 2004;24(2):105-12. [PubMed ID: 14769454]. doi: 10.1016/j.nedt.2003.10.001.##[16]Vaismoradi M, Turunen H, Bondas T.Content analysis and thematic analysis: Implications for conducting a qualitative descriptive study. Nurs Health Sci. 2013;15(3):398-405. [PubMed ID: 23480423]. doi: 10.1111/nhs.12048.##[17]Polakova K, Ahmed F, Vlckova K, Brearley SG.Parents' experiences of being involved in medical decision-making for their child with a life-limiting condition: a systematic review with narrative synthesis. Palliat Med. 2024;38(1):7-24. [PubMed ID: 38053373]. [PubMed Central ID: PMC10798032]. doi: 10.1177/02692163231214414.##[18]Bogetz JF, Trowbridge A, Lewis H, Shipman KJ, Jonas D, Hauer J, et al.Parents Are the Experts: A Qualitative Study of the Experiences of Parents of Children With Severe Neurological Impairment During Decision-Making. J Pain Symptom Manage. 2021;62(6):1117-25. [PubMed ID: 34147578]. [PubMed Central ID: PMC8648906]. doi: 10.1016/j.jpainsymman.2021.06.011.##[19]Koch A, Albrecht T, Kozhumam AS, Son H, Brandon D, Docherty SL.Crossroads of parental decision making: Intersections of hope, communication, relationships, and emotions. J Child Health Care. 2023;27(2):300-15. [PubMed ID: 34967680]. [PubMed Central ID: PMC10155486]. doi: 10.1177/13674935211059041.##[20]Jacobs S, Davies N, Butterick KL, Oswell JL, Siapka K, Smith CH.Shared decision-making for children with medical complexity in community health services: a scoping review. BMJ Paediatr Open. 2023;7(1):e001866. [PubMed ID: 37012004]. [PubMed Central ID: PMC10083859]. doi: 10.1136/bmjpo-2023-001866.##[21]Boland L, Graham ID, Légaré F, Lewis K, Jull J, Shephard A, et al.Barriers and facilitators of pediatric shared decision-making: a systematic review. Implement Sci. 2019;14(1). 7. [PubMed ID: 30658670]. [PubMed Central ID: PMC6339273]. doi: 10.1186/s13012-018-0851-5.##[22]Jonas D, Scanlon C, Bogetz JF.Parental Decision-Making for Children With Medical Complexity: An Integrated Literature Review. J Pain Symptom Manage. 2022;63(1):e111-23. [PubMed ID: 34363953]. doi: 10.1016/j.jpainsymman.2021.07.029.##[23]Mitchell S, Spry JL, Hill E, Coad J, Dale J, Plunkett A.Parental experiences of end of life care decision-making for children with life-limiting conditions in the paediatric intensive care unit: a qualitative interview study. BMJ Open. 2019;9(5). e28548. [PubMed ID: 31072863]. [PubMed Central ID: PMC6528052]. doi: 10.1136/bmjopen-2018-028548.##[24]Pearson H H, Bryan G, Kayum C, Gibson F, Darlington AS.Parent values and preferences underpinning treatment decision-making in poor-prognosis childhood cancer: a scoping review. BMC Pediatr. 2022;22(1). 595. [PubMed ID: 36229792]. [PubMed Central ID: PMC9563461]. doi: 10.1186/s12887-022-03635-1.##[25]Hirata M, Kobayashi K.Experiences with the end-of-life decision-making process in children with cancer, their parents, and healthcare professionals: A systematic review and meta-ethnography. J Pediatr Nurs. 2023;69:e45-64. [PubMed ID: 36586777]. doi: 10.1016/j.pedn.2022.12.004.##