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Healthcare and Transition in Children with Special Needs, Complex Chronic...
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Healthcare and Transition in Children with Special Needs, Complex Chronic Illness, and Medical Technology Dependence

A special issue of Children (ISSN 2227-9067). This special issue belongs to the section "Pediatric Emergency Medicine & Intensive Care Medicine".

Deadline for manuscript submissions: 5 February 2026 | Viewed by 4271

Special Issue Editors

Dr. Monica L. Koncicki

E-Mail Website
Guest Editor
Department of Pediatrics, Section of Critical Care, Albert Einstein College of Medicine, Children's Hospital at Montefiore, Bronx, NY 10467, USA
Interests: medical education; chronic critical illness; chronic respiratory failure; tech-nology dependence; tracheostomy dependence
Dr. Jennifer Gillen

E-Mail Website
Guest Editor
Department of Pediatrics, Section of Critical Care, Icahn School of Medicine at Mount Sinai, Mount Sinai Kravis Children’s Hospital, New York, NY 10029, USA
Interests: medical education; disaster preparedness; technology dependence
Dr. Jeffrey D. Edwards

E-Mail Website
Guest Editor
Department of Pediatrics, Section of Critical Care, Columbia University Vagelos College of Physician and Surgeons, New York, NY 10032, USA
Interests: complex chronic conditions; technology dependence; home mechanical ventilation; ethics; palliative care

Special Issue Information

Dear Colleagues,

Illnesses that previously caused childhood mortality are now managed well into adulthood. More children are surviving with chronic, complex, or critical illnesses and are reliant on medical technology. Pediatric providers have traditionally continued to care for these children as they grow into young adults, yet more and more of these vulnerable patients are coming of age to transition to adult care. The point of transition remains fluid, and adult providers are familiarizing themselves with the nuances of childhood pathologies. Nonetheless, pediatric providers continue to face challenges in transitioning, not only their patients but also their families, out of the pediatric care system. These transitions not only include new providers, but often also come with changes in health insurance coverage, decision making capacity, independent living, social support networks, institutions, and equipment. Current pediatric trainees may benefit from additional training in navigating this transition process. We invite you to contribute your research, reviews, and commentaries in this Special Issue exploring the approach to transitioning children with special healthcare needs, complex chronic illness, and medicine technology dependence.

Dr. Monica L. Koncicki
Dr. Jennifer Gillen
Dr. Jeffrey D. Edwards
Guest Editors

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All submissions that pass pre-check are peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a single-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. Children is an international peer-reviewed open access monthly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 2400 CHF (Swiss Francs). Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

Keywords

  • special needs
  • chronic illness
  • technology dependence
  • tracheostomy
  • transitional care
  • medical education

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Published Papers (6 papers)

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Research

Jump to: Review

14 pages, 531 KB  
Article
Building Bridges: Developing and Implementing a New Transition to Adult Care Program for Youth with Complex Healthcare Needs at a Canadian Children’s Hospital
by Sara Santos, Julia Orkin, Dara Abells, Brooke Allemang, Bianca Arenas Rodriguez, Kimberly Colapinto, Nora Constas, Mackenzie Heath, Megan Henze, Tomisin John, Robyn Lippett, Susan Miranda, Joanna Soscia, Jessica Teicher, Donna Thomson, Jennifer Tyrrell, Eryn Vandepoele, Karla Wentzel, Darryl Yates, Eyal Cohen and Alène Toulanyadd Show full author list remove Hide full author list
Children 2025, 12(8), 1043; https://doi.org/10.3390/children12081043 - 8 Aug 2025
Viewed by 269
Abstract
Background/Objectives: Transitioning from pediatric to adult services can be challenging for youth with complex chronic health conditions, especially those with multi-morbidity. These youth often require extra coordination and support during this phase of their healthcare journey. Building upon existing provincial and national [...] Read more.
Background/Objectives: Transitioning from pediatric to adult services can be challenging for youth with complex chronic health conditions, especially those with multi-morbidity. These youth often require extra coordination and support during this phase of their healthcare journey. Building upon existing provincial and national initiatives for transitions from pediatric to adult healthcare services, we have developed a hospital-wide program within one of Canada’s largest children’s hospitals that incorporates an integrated care model aimed at better serving these patients and improving outcomes. Methods: Guided by provincial quality standards, an environmental scan and knowledge user engagement were conducted to develop the program, followed by an implementation phase, where the model was piloted. Ongoing learnings from the pilot continue to inform program implementation and evaluation. Results: The Transition to Adult Care (TAC) program offers disease-agnostic care to youth with complex needs for 1–3 years, including 1-year post-transfer, addressing the fragmentation of care across multiple services, organizations and providers. Our interdisciplinary team works in partnership with youth and caregivers to deliver transition navigation, easing the burden on patients and families by tailoring transition supports to each individual youth and caregiver. Preliminary data from the pilot revealed a lack of awareness about transition resources and timelines; however, with early engagement and flexible support beyond age 18, youth were able to complete their transition successfully. Conclusions: The TAC program demonstrates a systems-level approach to improving transition to adult care for youth with complex health needs by integrating individualized support, cross-sectoral collaboration, and continuous quality improvement. Early engagement, flexible post-transfer support, and close partnership with youth, caregivers, and providers are key to facilitating transition. These learnings can inform broader implementation efforts and help address persistent gaps in transitional care across healthcare systems. Full article
(This article belongs to the Special Issue Healthcare and Transition in Children with Special Needs, Complex Chronic Illness, and Medical Technology Dependence)
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18 pages, 228 KB  
Article
An Examination of Health Care Transition Experiences Through Parents’ Reflections About Their Sons or Daughters Who Have Intellectual and Developmental Disabilities
by Christine B. Mirzaian, Rowan Smith and Cecily L. Betz
Children 2025, 12(7), 886; https://doi.org/10.3390/children12070886 - 4 Jul 2025
Viewed by 593
Abstract
Background: As national and international reports reveal, significant health care transition (HCT) service disparities exist for youth and young adults with intellectual and developmental disabilities (YYAs with IDD). The development of the HCT model necessitates informed perspectives from a broad constituency, including consumers [...] Read more.
Background: As national and international reports reveal, significant health care transition (HCT) service disparities exist for youth and young adults with intellectual and developmental disabilities (YYAs with IDD). The development of the HCT model necessitates informed perspectives from a broad constituency, including consumers and families. Parents’ retrospective perspectives of their sons’ or daughters’ HCT experiences are presented to enlarge the understanding of the service need. Methodology: Eleven parents were recruited virtually from parent support/disability advocate groups via an email distribution list of the Children’s Hospital Los Angeles University Center for Excellence in Developmental Disabilities. Parents who consented to participate were interviewed by phone using an interview guide with 11 open-ended items. Three questions focused on the barriers and facilitators associated with the HCT experience are reported. Findings: Four major themes were generated from the analysis of data gathered from parents pertaining to their sons’ or daughters’ health care transition experiences, focusing on the transfer of care. Two major themes were related to HCT barriers—Pediatric Care Contrasted with Adult-Focused Care and Transfer of Care Barriers—and two were related to HCT facilitators—Transfer of Care Facilitators and Transfer of Care Recommendations. Each of the major themes included subthemes. Conclusions: Parents openly shared their sons’ or daughters’ HCT experiences, which illuminated the scope of their challenges and the assistance received. These insights provide rich descriptions of the barriers they and their adult children faced as they proceeded with navigating new systems of health care. The reported data find support in other previously conducted studies. Full article
(This article belongs to the Special Issue Healthcare and Transition in Children with Special Needs, Complex Chronic Illness, and Medical Technology Dependence)
16 pages, 596 KB  
Article
Experiences and Educational Needs of Hospital Staff Providing Care to Tracheostomy-Dependent Pediatric Patients
by Kathryn L. Palumbo, Desirae Smith, Adrianne Frankel, Laine DiNoto, Taylor Wheaton, Kimberly Buholtz and Rita Dadiz
Children 2025, 12(5), 552; https://doi.org/10.3390/children12050552 - 25 Apr 2025
Viewed by 676
Abstract
Objective: To assess the experience and educational needs of hospital staff who care for pediatric patients with tracheostomies. Study Design: Staff were surveyed and participated in semi-structured, facilitated focus groups regarding their experiences caring for children with tracheostomies and their educational needs. Survey [...] Read more.
Objective: To assess the experience and educational needs of hospital staff who care for pediatric patients with tracheostomies. Study Design: Staff were surveyed and participated in semi-structured, facilitated focus groups regarding their experiences caring for children with tracheostomies and their educational needs. Survey data were analyzed using descriptive statistics and Kruskal–Wallis nonparametric tests. Focus groups were transcribed verbatim and coded for thematic analysis. Results: Pediatric advanced practice providers, nurses, physicians, and respiratory therapists (152/353, 43%) completed the survey. Within the last year, 76% of staff had worked with a tracheostomy-dependent child. However, up to 59% of staff had not performed at least one tracheostomy skill (e.g., tracheostomy site assessment, tube change, etc.). Staff reported the least confidence in changing tracheostomy tubes and using home ventilators and rated these skills as most important for additional education. Forty-three staff members participated in 1 of 10 focus groups. Three themes were identified: building staff competencies in tracheostomy care, promoting the caregiver development of tracheostomy skills, and building caregiver preparedness for home life. Staff emphasized the need for participating in emergency simulations and developing their skills to better prepare caregivers for home life. They indicated a need to streamline the discharge process, gain knowledge of community resources, and develop a standardized team to provide discharge teaching. Conclusions: Hospital staff responsible for providing care to tracheostomy-dependent pediatric patients had limited opportunities to learn and maintain their skills. Survey and focus group findings can guide development of continuing education to optimize the care of tracheostomy-dependent children. Full article
(This article belongs to the Special Issue Healthcare and Transition in Children with Special Needs, Complex Chronic Illness, and Medical Technology Dependence)
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17 pages, 492 KB  
Article
Navigating the Healthcare System with a Complex Chronic Condition: Multidimensional Roles of Adolescents, Young Adults, and Parents
by Allison F. Wise, Emily J. Upham and Danielle D. DeCourcey
Children 2025, 12(3), 318; https://doi.org/10.3390/children12030318 - 28 Feb 2025
Viewed by 1249
Abstract
Background/Objective: Adolescents and young adults with complex chronic conditions and parents of children with complex chronic conditions interact frequently with the healthcare system. However, these groups have unique characteristics and needs. The objective of this qualitative study was to explore and compare the [...] Read more.
Background/Objective: Adolescents and young adults with complex chronic conditions and parents of children with complex chronic conditions interact frequently with the healthcare system. However, these groups have unique characteristics and needs. The objective of this qualitative study was to explore and compare the roles that adolescents and young adults with complex chronic conditions and parents of children with complex chronic conditions take on when engaging with the healthcare system. Methods: Semi-structured interviews were conducted with seven adolescents and young adults and nine parents at two pediatric centers from December 2018 to April 2019. The research team conducted thematic analysis. Transcripts were coded independently by two coders, achieving high interrater reliability (kappa > 0.85). We present findings related to illness experience and self-described roles within the healthcare context. Results: Informational roles described by both parents and adolescents and young adults included teacher, learner and researcher, and planner. Social-emotional roles common to both groups included source of strength, support, and hope and worrier, while the role of guardian was unique to parents. Action-oriented roles described by both groups included advocate, decision-maker, and communicator, while medical care provider was unique to parents and medical care manager was unique to adolescents and young adults. Conclusions: Adolescents and young adults with complex chronic conditions and parents of children with complex chronic conditions balance similarly complex roles within the medical system. However, their experiences within these roles can differ, presenting unique challenges. Understanding these multidimensional roles will better equip healthcare providers to support these patients and families, especially around times of healthcare transition. Full article
(This article belongs to the Special Issue Healthcare and Transition in Children with Special Needs, Complex Chronic Illness, and Medical Technology Dependence)
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Review

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17 pages, 560 KB  
Review
Navigating a New Normal: A Mixed-Methods Study of the Pediatric Tracheostomy Parent-Caregiver Experience
by Laine DiNoto, Adrianne Frankel, Taylor Wheaton, Desirae Smith, Kimberly Buholtz, Rita Dadiz and Kathryn Palumbo
Children 2025, 12(7), 956; https://doi.org/10.3390/children12070956 - 21 Jul 2025
Viewed by 416
Abstract
Objective: To explore the experiences and self-efficacy of parent-caregivers providing care for a child with a tracheostomy tube. Study Design: Parent-caregivers completed surveys and participated in semi-structured interviews about their experiences learning to care for their child with a tracheostomy tube. Survey data [...] Read more.
Objective: To explore the experiences and self-efficacy of parent-caregivers providing care for a child with a tracheostomy tube. Study Design: Parent-caregivers completed surveys and participated in semi-structured interviews about their experiences learning to care for their child with a tracheostomy tube. Survey data were analyzed using descriptive statistics. Interviews were transcribed verbatim and analyzed thematically through coding. Results: Fifteen parent-caregivers participated in the survey, 13 of whom completed an interview. After receiving a tracheostomy, children were hospitalized a median of 6 months prior to discharge home. At the time of our study, children had been home for a median of 3.5 years. Parent-caregivers felt more prepared to perform routine daily care compared to triaging a change in medical status. Parent-caregiver self-efficacy in performing tracheostomy care skills improved with experience at home. Four themes were identified from interviews: new identity formation, enduring education, child and family biopsychosocial support, and establishing normalcy. Parent-caregivers shared that education was more than just acquiring skills; it also involved discovering diverse ways of learning and building confidence in one’s own abilities to fulfill the many types of roles they serve to successfully care for and keep their child safe while supporting their social and emotional needs as parent-caregivers. Conclusions: Parent-caregivers’ reflections on their experiences provide critical insight into their psychosocial needs and challenges in providing care to children with tracheostomies. Further investigation of lived experiences is vital to shaping a community that can support families of medically complex children. Full article
(This article belongs to the Special Issue Healthcare and Transition in Children with Special Needs, Complex Chronic Illness, and Medical Technology Dependence)
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9 pages, 174 KB  
Review
Peri-Operative Care of Technology-Dependent Adolescents and Young Adults
by Jia Liu, Robert J. Graham and Shawn S. Jackson
Children 2025, 12(4), 417; https://doi.org/10.3390/children12040417 - 26 Mar 2025
Viewed by 336
Abstract
Caring for technology-dependent adolescents and young adults presents significant challenges, especially for procedural and peri-operative care. This review delves into the complexities of managing these patients before, during, and after major medical procedures or operations, highlighting the unique medical and psychosocial issues that [...] Read more.
Caring for technology-dependent adolescents and young adults presents significant challenges, especially for procedural and peri-operative care. This review delves into the complexities of managing these patients before, during, and after major medical procedures or operations, highlighting the unique medical and psychosocial issues that demand specialized attention. We address the intricacies of pre-procedural assessment and optimization, as well as post-procedural management, with a particular focus on the challenges associated with life-sustaining technologies such as chronic ventilator dependence. Additionally, we explore medicolegal factors such as guardianship and surrogate decision-making, which are often more complex in this population. The review also identifies key areas of uncertainty that merit further research and exploration, aiming to enhance the quality of care and improve outcomes for technology-dependent individuals transitioning to adult healthcare. Full article
(This article belongs to the Special Issue Healthcare and Transition in Children with Special Needs, Complex Chronic Illness, and Medical Technology Dependence)
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