Related Experiment Video
Updated: Feb 24, 2026
Monitoring Lung Function with Electrical Impedance Tomography in the Intensive Care Unit
Published on: September 6, 2024
Quality of life in home-ventilated children and their families
Rafael González1,2,3, Amaya Bustinza1,2, Sarah N Fernandez1,2
1Pediatric Intensive Care Unit, Hospital General Universitario Gregorio Marañón, Calle Doctor Castelo 47, Madrid, 28009, Spain.
Abstract:
HMV (home mechanical ventilation) in children has increased over the last years. The aim of the study was to assess perceived quality of life (QOL) of these children and their families as well as the problems they face in their daily life.We performed a multicentric cross-sectional study using a semi-structured interview about the impact of HMV on families and an evaluation questionnaire about perceived QOL by the patient and their families (pediatric quality of life questionnaire (PedsQL4.0)). We studied 41 subjects (mean age 8.2 years). Global scores in PedsQL questionnaire for subjects (median 61.4), and their parents (median 52.2) were below those of healthy children. 24.4% received medical follow-up at home and 71.8% attended school. Mothers were the main caregivers (75.6%), 48.8% of which were fully dedicated to the care of their child. 71.1% consider economic and healthcare resources insufficient. All families were satisfied with the care they provide to their children, even though it was considered emotionally overwhelming (65.9%). Marital conflict and neglect of siblings appeared in 42.1 and 36% of families, respectively.
Conclusions:
Perceived QOL by children with HMV and their families is lower than that of healthy children. Parents are happy to care for their children at home, even though it negatively affects family life. What is Known: • The use of home mechanical ventilation (HMV) in children has increased over the last years. • Normal family functioning is usually disrupted by HMV. What is New: • The aim of HMV is to provide a lifestyle similar to that of healthy children, but perceived quality of life by these patients and their parents is low. • Most of the families caring for children on HMV agree that support and resources provided by national health institutions is insufficient.
Related Concept Videos
01:19Factors Affecting Pulmonary Ventilation
Alveolar Surface Tension
The alveolar fluid lines the luminal surface of the alveoli and exerts a force called surface tension. This force is caused by the polar water molecules in the liquid being more strongly attracted to each...
01:20Assessment of Ventilation I: Respiratory Rate
A Ventilation assessment is critical for monitoring a patient's health status. Respiration, one of the most accessible vital signs, provides insights into the function of numerous body systems and can indicate serious health issues, such as brainstem injuries from head trauma.
Critical Guidelines for Assessing Ventilation:
01:29Assessment of Ventilation II: Respiratory Depth and Rhythm
Respiratory depth measures the volume of air inhaled or exhaled during a breath. It can vary from shallow to deep and typically remains consistent when a person is at rest or asleep. Occasionally, individuals will automatically inhale deeply, known as sighing, which inflates the lungs with more air than normal breathing.
To assess respiratory depth, observe the degree of chest excursion or movement:
01:29Mechanical Ventilation I: Indication and Settings
01:29Documentation in Long-Term and Home Healthcare Setting
Long-Term Care Facilities
01:23Mechanical Ventilation II: Invasive Ventilation
Negative-Pressure Ventilators
Negative-pressure ventilators create a vacuum around the chest or body to draw air into the lungs, simulating breathing. This method does not require an...