The evolving landscape of home mechanical ventilation in children
Home mechanical ventilation (HMV) in children has undergone a substantial transformation over the past two decades, driven by advancements in technology and evolving clinical practices. Globally, the prevalence of HMV has reached an estimated 2.1 to 13.7 per 100,000 children and continues to rise.1 The onset of HMV exhibits a bimodal age distribution, characterized by peaks at 1 to 2 years and subsequently at 14 to 15 years.1 This includes both invasive mechanical ventilation (IMV) and noninvasive mechanical ventilation (NIV), with NIV used about 2.5 times more often than IMV.1
With increased HMV use, care has evolved toward the “medical home” model, which emphasizes coordinated, family-centered care through collaboration between general practitioners and pulmonologists.2–3 Within this framework, care is managed in partnership with families, ensuring continuity across health care settings and at home. Of utmost importance is ensuring safety in the home environment, which requires continuous monitoring systems, such as pulse oximetry, and readily available backup equipment. However, due to the limitations of ventilator alarms in detecting critical events, particularly in young children, the continuous presence of an awake caregiver remains vital.4 While an established multidisciplinary team and standardized discharge approach minimizes risks associated with transitioning from hospital to home care, caregivers often face several challenges in providing care for these medically complex children.3–4
Systemic barriers and inequities
Despite technological advances, the delivery of HMV care continues to be constrained by significant systemic barriers. One of the most prominent challenges is the persistent shortage of professional home nursing services, leaving many families unable to secure sufficient staffing to meet approved care hours and effectively forcing them to compensate for systemic gaps.3–4 Current data from 2025 indicate the first two years following the transition from hospital to home constitute the highest-risk safety period, with approximately 25% of deaths caused by preventable complications such as tracheostomy obstruction or accidental decannulation.5 These limitations place a considerable burden on primary caregivers, over 86% of whom are mothers, resulting in severe sleep deprivation, depression, and chronic health conditions affecting more than half of caregivers.6
The financial burden further exacerbates these disparities. Only 24.4% of caregivers can maintain full-time employment, while the majority face ongoing financial stress and substantial unmet medical expenses.4,6 Globally, insurance coverage inequities and regional resource limitations can also significantly delay access to essential equipment and prolong hospital discharge by months or even years.6 The standardization of caregiver education, alongside the integration of digital or simulation-based training modalities, represents a critical strategy to enhance caregiver competence, patient safety, and overall outcomes.2,4 However, advocating for additional support and resources remains crucial to ensuring overall safety for these complex patients.
Telemedicine as an emerging solution
To mitigate geographic and socioeconomic disparities, telemedicine and remote monitoring have been prioritized as essential innovations in the care of children requiring HMV.2,3 Beyond routine check-ups, telemedicine addresses the technical complexity of HMV by allowing providers to virtually “enter” the home to assess the environment and equipment setup.3 This can mitigate the risk of accidental mortality related to tracheostomy accidents or equipment failure by ensuring that caregivers are correctly utilizing monitors and ventilator settings.3,7 Advances in portable home ventilator technology now allow extensive remote data gathering, providing clinicians with longitudinal insights into patient adherence and physiological stability.2–3,8 By reducing the burden of frequent travel, which often results in missed work and financial strain, telemedicine ensures that high-level subspecialty oversight is accessible, regardless of a family’s location.2,6,9
However, the integration of remote monitoring platforms into routine practice introduces unresolved challenges regarding the clinician’s “duty to act.”2–3 This ambiguity stems from whether the accessibility of continuous data implies a mandate for constant surveillance, particularly when caregivers do not report acute clinical changes.2–3 For telemedicine to effectively serve as a tool for health equity, clinical frameworks must establish clear boundaries of responsibility between the medical team, the durable medical equipment company, and the family for optimal success.
Moving forward
The continued evolution of pediatric HMV necessitates a shift toward a standardized national infrastructure to ensure equitable and safe care. Future focus should be on establishing a national registry to track the epidemiology and outcomes of this growing population.2–3 Coupled with a national safety reporting system, such a registry would enable the identification of systemic failures in health care delivery and equipment performance.3 To address the critical nursing shortage—a primary barrier to discharge for underserved families—research must explore the efficacy of utilizing trained paraprofessional caregivers in the home.1–3 Finally, the transition to home care should be reinforced by standardized, simulation-based training that prepares caregivers for high-acuity emergency scenarios, such as accidental decannulation.2,4,8 By formalizing these educational and regulatory structures, the medical community can ensure that technological progress translates into the sustainable “normalization” of life for every child dependent on ventilation.1–2
References
1. Toussaint M, van Hove O, Leduc D, et al. Invasive versus non-invasive paediatric home mechanical ventilation: review of the international evolution over the past 24 years. Thorax. 2024;79(6):581-588. doi:10.1136/thorax-2023-220888
2. Henningfeld J, Friedrich AB, Flanagan G, et al. Transitioning children using home invasive mechanical ventilation from hospital to home: discharge criteria, disparities, and ethical considerations. Pediatr Pulmonol. 2024;59(8):2113-2130. doi:10.1002/ppul.26948
3. Sterni LM, Collaco JM, Baker CD, et al. An Official American Thoracic Society Clinical Practice Guideline: Pediatric Chronic Home Invasive Ventilation. Am J Respir Crit Care Med. 2016;193(8):e16-e35. doi:10.1164/rccm.201602-0276ST
4. Amin R, Agarwal A, Chiang J, et al. Care of infants and children with tracheostomies: an official American Thoracic Society clinical practice guideline. Am J Respir Crit Care Med. 2025;211(11):2001-2020. doi:10.1164/rccm.202508-2055ST
5. Scheller L, Mariano K, Staveski S, et al. Readmission and mortality among children requiring long-term mechanical ventilation via tracheostomy: a systematic review. BMC Pulm Med. 2025;25(1):385. doi:10.1186/s12890-025-03818-3
6. Seear M, Kapur A, Wensley D, Morrison K, Behroozi A. The quality of life of home-ventilated children and their primary caregivers plus the associated social and economic burdens: a prospective study. Arch Dis Child. 2016;101(7):620-627. doi:10.1136/archdischild-2015-309796
7. Boroughs D, Dougherty JA. Decreasing accidental mortality of ventilator-dependent children at home: a call to action. Home Healthc Nurse. 2012;30(2):103-113. doi:10.1097/NHH.0b013e3182429243
8. Tofil NM, Rutledge C, Zinkan JL, Youngblood AQ, Stone J, Peterson DT, et al. Ventilator caregiver education through the use of high-fidelity pediatric simulators: a pilot study. Clin Pediatr (Phila). 2013;52(11):1038-1043. doi:10.1177/0009922813505901
9. DeRigne L. The employment and financial effects on families raising children with special health care needs: an examination of the evidence. J Pediatr Health Care. 2012;26(4):283-290. doi:10.1016/j.pedhc.2010.12.006
