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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: 1 July 2025 | Viewed by 1617

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 (3 papers)

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Research

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16 pages, 596 KiB  
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 232
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 KiB  
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 661
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

Jump to: Research

9 pages, 174 KiB  
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 159
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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