Growth and Development of Children Requiring Medical Care
— Perspectives on Support Based on Body, Respiration, and Posture —
Introduction
I have been given the opportunity to speak at the Training for Supporters of Children Requiring Medical Care in Sapporo.
I am Nishizato, a physical therapist involved in the Department of Rehabilitation and Community Liaison/Home Care Support at the Hokkaido Children's Medical Center (commonly known as the Children's Hospital).
In this article, I have summarized the following based on the training content:
Children's 'growth' and 'typical development'
Developmental characteristics seen in children requiring medical care
Specific support from physical aspects such as respiration, posture, and feeding/swallowing
about these topics.
The Current Situation Surrounding Children Requiring Medical Care
In Japan, there are currently over 20,000 children living at home while requiring daily medical care.
This is not just a number, but the reality for families who are required to be strong every day.
Definition and Increase of Medical Care
The term 'medical care' was clearly defined for the first time in a 2021 law
The number of children requiring medical care has more than doubled in the last decade
Care Providers
About 93% of daily 24-hour care is provided by mothers
Care is not short-term, but continues over the long term as they grow
Challenges That Change with Each Life Stage
Children requiring medical care and their families face different barriers at each stage of growth.
Infancy: Medical stability at home
Early Childhood: Coordination with Nursery Schools and Kindergartens
School Age: Coordination with Schools and Education
Adulthood: Major Transition in Systems and Laws
The "18-Year-Old Barrier"
At the age of 18,
Child Welfare Act → Services and Supports for Persons with Disabilities Act
the system switches to.
As a result,
services that were previously available suddenly become unusable
the need to restart procedures from scratch arises
these problems occur.
Furthermore,
Services for children: 82% increase in the last 10 years 82% increase
Services for adults: 39% increase
and the lack of support during the transition period is serious.
Good practice in regional cooperation: Toyonaka City, Osaka Prefecture
There are also initiatives to overcome institutional barriers.
Toyonaka City's initiatives
Addressing the shortage of nurses supporting children with medical care needs
Collaboration between the Board of Education and hospitals
Hospitals hire nurses and dispatch them to schools
Personnel costs are covered by the Board of Education
Key points for success
Medical instructions are centrally managed by the hospital
Stable employment is maintained as hospital work is possible even during school holidays
Professionalism is maintained through hospital-led training
This demonstrates the importance of shifting from 'caregiving borne by the family' to 'a system supported by society' is crucial.
Understanding child growth and typical development
Developmental milestones: '3, 6, 9, 12 months'
3 months: Head control
6 months: Sitting up, rolling over
9 months: Crawling, pulling to stand
12 months: Standing alone, walking alone
Motor development is closely related to sensory, cognitive, and emotional development.
Developmental characteristics in children requiring medical care
Relationship between disease and development
Diseases where development progresses slowly
Diseases where function declines once and then recovers
Diseases where function gradually declines
Diseases with repeated exacerbations and recoveries
Support based on 'when' and 'at what stage' these events occurred is essential.
Perspective of functional classification
GMFCS (Gross Motor Function Classification System)
MACS (Manual Ability Classification System)
CFCS (Communication Function Classification System)
EDACS (Eating and Drinking Ability Classification System)
VFCS (Visual Function Classification System)
It is useful for sharing information among multiple professions as a common language.
Physical characteristics common in children with severe motor and intellectual disabilities
Abnormal muscle tone
Respiratory disorders
Feeding and swallowing disorders
Gastroesophageal reflux
Scoliosis and hip dislocation
Since these mutually influence each other a comprehensive perspective is required rather than looking at them individually.
Understanding and supporting respiration
Understanding oxygen saturation (SpO₂)
SpO₂ 90% or less: Possibility of respiratory failure
It is important to look at the overall physical condition not just the numbers
Types of ventilatory impairment
Obstructive ventilatory impairment
Restrictive ventilatory impairment
Central ventilatory impairment
In many cases, these exist in combination.
Importance of posture and positioning
Adjustment of jaw position
Forward-leaning posture/prone position
Adopting diverse postures
This can significantly improve respiratory status.
Addressing feeding, swallowing, and gastroesophageal reflux
Postural adjustment
Modifying food texture
Decisions based on medical evaluation
As necessary,
Gastrostomy creation
Tracheostomy
Laryngotracheal separation surgery
and other medical interventions are considered.
Combining medical care and rehabilitation
Physical therapy and daily care
Pharmacotherapy (Botulinum, ITB, etc.)
Orthopedic treatment
Intervention at the appropriate timing aligned with growth is important.
The Six F-words
Function
Family
Fitness
Friends
Fun
Future
For children requiring medical care, "fitness" means
maintaining a body that can breathe and circulate well, allowing them to live with peace of mind.
Beyond that lies
time with family
social participation
a future filled with smiles
.
Conclusion
Support for children requiring medical care is built not only on "treatment," but also on
daily interactions, posture, breathing, and showing affection as its foundation.
I hope to see various professionals collaborate kindly to aim for a society where children and their families can live with peace of mind in their community.
Thank you for reading until the end.
If you have any consultations or questions, please feel free to reach out.