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https://doi.org/10.53044/jinr.2023-0037
https://www.jinr.jsnr.or.jp/
Original Research
Impact of the coronavirus disease 2019 (COVID-19) pandemic on children
and youth with special needs and their families in Japan and support
issues
Kayoko Omura, PhD, RN1, Chisato Hayashi, PhD, RN2, Keiko Fujimoto, PhD, RN1,
Tomoko Yamaguchi, MS, RN3, and Junko Honda, PhD, RN2
1College of Nursing Art and Science, University of Hyogo, Hyogo, Japan, 2Research Institute of Nursing Care for
People and Community, University of Hyogo, Hyogo, Japan, and 3Kobe City Health Bureau, Hyogo, Japan
Abstract
Objective: To elucidate the impact of the coronavirus disease 2019 (COVID-19) pandemic on children and youth
with special needs, their families, and their supporters in Japan. Methods: This qualitative descriptive study was
carried out via focus groups. Participants were care providers and family caregivers of children and youth with
special needs. In the survey, the participants were asked about the changes in physical and mental health,
caregiving status, and multidisciplinary collaboration during the COVID-19 pandemic. Results: The categories of
the impact of the COVID-19 pandemic on children and youth with special needs and their families were [Concen-
tration of burden on primary caregivers], [Mental stress of the primary caregiver], [Mental and physical impact on
children and youth with special needs], [Dissatisfaction/anxiety about changes in social interactions], [Sibling/fam-
ily mental stress], and [Increased risk of abuse due to lack of respite]. The problems encountered by service
providers during the pandemic included [Difficulty in utilizing social resources], [Disparities in the use of support
services and systems], [Problems due to the changes in the way people go to the hospital], [Difficulties in assuring
quality of professional care], [Challenges in organizing a pediatric home care team], and [Need to understand a
diverse group of children and youth with special needs]. Conclusions: Our data suggest the need for support to
replace family caregiving, as the burden is concentrated on the primary caregiver. In the future, a system will be
required to promptly respond to the special needs of each child through the collaboration of the government, hos-
pital, and community.
Keywords
COVID-19 pandemic, children and youth with special needs, parents, supporters, inequality
JINR 2025, e2023-0037. Advance Publication
Introduction
As reported in many studies, the impact of the coronavirus
disease 2019 (COVID-19) pandemic on children and youth
with special needs and their families is wide-ranging, with
some of the impact being serious. Among them, the largest
study on children and youth with autism reported the im-
pacts of the COVID-19 pandemic including eating and
sleeping problems, stress, worsening of symptoms of autism,
appearance of aggression and violence, and the possibility of
losing previously learned skills (Stankovic et al., 2022). In
terms of intellectual disability, remarkable reductions in
gross and fine motor skills among non-active children and
youth (Sedaghati et al., 2022), as well as no specific
Correspondence: K. Omura. Email: kayoko_omura@cnas.u-hyogo.ac.jp
Received: October 2, 2023, Accepted: August 24, 2024, Advance Publication: December 28, 2024
Copyright Ⓒ2025 The Japan Society of Nursing Research
This work is licensed under the Creative Commons Attribution International License (CC BY-NC-SA).
JINR 2025, e2023-0037. Advance Publication https://doi.org/10.53044/jinr.2023-0037
2
changes (Bailey et al., 2021), have been reported. In a study
that involved children and youth with special educational
needs, the lockdown resulted in the loss of community inter-
action, daily routine changes, behavioral disturbances, tan-
trums, and anxiety/depression (Asbury et al., 2021), but
lesser anxiety was reported in children and youth with
Down syndrome and their families (Sideropoulos et al.,
2022). Approximately 80% of children and youth with
audiovisual impairments were unaware of any particular
health changes, but approximately half of them experienced
sleep disturbances during lockdowns, with those having vis-
ual impairment more likely to experience such changes and
to have communication difficulties due to wearing masks
(Bubbico et al., 2021). Sleep disturbances, increased muscle
tone, limited range of motion, and decreased physical activ-
ity are noted in patients with cerebral palsy (Bıyık et al.,
2021).
Alongside these changes in children and youth with spe-
cial needs, families had a difficult time managing their chil-
dren’s symptoms during the COVID-19 pandemic (Gillespie-
Smith et al., 2021); they were isolated (García-Azorín et al.,
2021; Goswami et al., 2021; Jeste et al., 2020; White et al.,
2021; Zhang et al., 2022) due to a lack of resources, and in-
teractions with other people were limited (Gallegos et al.,
2022); and they experienced increased anxiety, depression,
and parenting stress, which led to decreased physical health,
quality of life, and sense of well-being (Suarez-Balcazar et
al., 2021). This has led to increased alcohol use and suicidal
ideation among young people and men (Thomson et al.,
2021). In Zambia (Hearst et al., 2021) and Serbia (Stankovic
et al., 2022), a scarcity of food, shelter, and transportation;
lower income; and increased risk of neglect were evident.
The impact of the COVID-19 pandemic was observed not
only on children and youth with special needs and their
families but also on the management of health services. In
previous studies, 74%-100% of parents reported that the
COVID-19 pandemic resulted in poor access to medical in-
stitutions (Goswami et al., 2021; Jeste et al., 2020; White et
al., 2021; Zhang et al., 2022). In terms of rehabilitation,
63%-87% of the participants did not receive such services
(Stankovic et al., 2022; Bubbico et al., 2021; Bıyık et al.,
2021; Faccioli et al., 2021), 47% stopped receiving respite
care in Canada (Fortin-Bédard et al., 2023), and 60% of the
parents in India felt that access to emergency care was diffi-
cult (Tetali et al., 2022). The impact of these changes on the
ability of children and youth with special needs and their
families to access hospital services must also be clarified.
Likewise, in Japan, the COVID-19 pandemic caused great
disruption in medical services, but no study has elucidated
how it affected children and youth with special needs and
their families. Therefore, this study, conducted via focus
groups (FGs), aimed to clarify the impact of the COVID-19
pandemic on children and youth with special needs, their
families, and their supporters in Japan and their responses to
the pandemic. The impact in this study was defined as a
psychosocial change due to a rapid and sustained change
caused by the COVID-19 pandemic.
Materials and Methods
This qualitative descriptive study was conducted via FGs
from January 2021 to February 2022. This research method
was considered the best for various professionals and fami-
lies to reflect on their experiences of being involved in a
coronavirus disaster.
The participants were nurses, consultation support special-
ists, and primary family caregivers of children and youth
with special needs. In this study, a special need is defined as
the need for any kind of care or medical care for physical or
mental disabilities. The consultation support specialist works
in the consultation support office and is primarily responsi-
ble for developing care plans for children and youth with
physical and mental disabilities and providing them access
to various social services and support teams. Their role will
also include leadership of the care team. The criteria for se-
lecting the family members were as follows: They were not
afraid to speak in front of professionals, as speaking in front
of medical professionals or other experts could be a psycho-
logical burden, and they had professional credentials. The
researchers performed the recruitment of study participants.
Individuals with at least 5 years of clinical experience in
handling children and youth who required medical care and
the families of these children and youth were selected as
supporters.
The research description was sent to the participants who
gave informal consent via telephone, and the schedule was
adjusted so that there would be two or more participants in
one FG as much as possible. Multiple FGs were conducted
online to ensure that as many as two or more participants
possible were in one study. The FGs were carried out in a
way that professionals and family members could participate
together. As basic information, professionals were asked
about their job title, years of experience, and the institution
they belong to, whereas the families were asked about the
age of their children and youth with special needs, main dis-
eases and disabilities, family structure, and so forth. The
main questions were the same for both groups, and concern-
ing the impact of the COVID-19 pandemic, the groups were
asked about their physical and mental conditions, infection
preventive behaviors, caregiving situation, and multiagency
and multiprofessional collaborations. The FGs were recorded
using IC recorders, and verbatim transcripts were made. To
ensure anonymity, proper nouns that could identify the indi-
viduals were avoided. The method of analysis involved cod-
ing the parts of the FGs that described the impact observed
on children and youth with special needs and their families
https://doi.org/10.53044/jinr.2023-0037 JINR 2025, e2023-0037. Advance Publication
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and the challenges encountered by service providers via se-
mantic cohesion and categorizing the codes by comparing
and contrasting their similarities and differences. Without
any particular distinction, the family and professional narra-
tives were analyzed. The methodology is based on qualita-
tive inductive methods regarding content analysis methods
(Funashima & Sugimori, 1997). Multiple researchers carried
out and thoughtfully considered the analysis, and an agree-
ment on the content of the analysis was met. The categories
are indicated by [ ], subcategories by “ ”, and codes by < >.
Ethical Considerations
The ethics committee of the authors’ institution approved
the present study (ID number 2020F10).
Results
COVID-19 Pandemic Status and Study Participants
Among the pandemic waves of COVID-19 in Japan, the first
FG was organized on the third wave (January 2021), and the
second and third FGs were organized on the sixth wave
(February 2022) when the Omicron strain was rampant.
The present study had seven participants, with three in the
first FG, two in the second, and two in the third. The par-
ticipants comprised five nurses, one consultation support
specialist, and two mothers of children and youth with spe-
cial needs (multiple responses). The average age of the chil-
dren and youth with special needs taken care of by the
mothers was 21.5 years. All of the professionals had at least
5 years of clinical experience.
Impact of the COVID-19 Pandemic
To determine the impact of the COVID-19 pandemic on
children and youth with special needs and their families, 6
categories, 15 subcategories, and 30 codes were extracted
(Table 1).
Concentration of Burden on Primary Caregivers
Children and youth with special needs and their family’s
“Livelihoods are not possible without access to social re-
source.” In this situation, “Critical care can only be provided
by the primary caregiver,” in which “Limited support is
available from sub-caregivers.” “If something happens to the
primary caregiver, there is no one to provide medical care
for the child”; consequently, the “Primary caregiver is very
restrained in attending to the children and youth with dis-
ability.”
Mental Stress of the Primary Caregiver
The subcategory “increased emotional stress for primary
caregivers due to restricted outings” was identified. More-
over, codes including <parents feel stressed out when home
care nurses visit wearing personal protective equipment, as
if they are treated like an infected person> led to the identi-
fication of the subcategory “mental stress of primary
caregivers regarding continuation of care during the COVID-
19 pandemic.”
Mental and Physical Impact on Children and Youth with
Special Needs
The following two subcategories were extracted: “decreased
opportunities for exercise due to restricted outings” and
“mental stress due to restrictions on overnight stays for chil-
dren and youth with special needs in residential care.” In the
latter subcategory, the code <children and youth with special
needs in residential facilities used to be able to stay over-
night with their parents, but now they are only allowed to
see their parents through the window, which is mentally dif-
ficult for them> was determined.
Dissatisfaction and Anxiety about the Changes in Social In-
teractions
The first changes in social interactions were the “changes in
schooling and working patterns and anxiety during the
COVID-19 pandemic,” with the main codes being <not be-
ing able to return to work because daycare centers for chil-
dren and youth with special needs were not available when
the state of emergency was declared>. In the second sub-
category, “changes and dissatisfaction with how they com-
municate with the mothers,” we identified the code <It is
not that we cannot communicate and talk via Zoom or
LINE, but we cannot contact each other easily>.
Siblings and Family Mental Stress
The subcategories were “siblings’ mental stress due to re-
stricted outings” and “sibling and family mental stress due
to lack of respite.” The codes for the category were <The
number of days of short-term stay for children and youth
with severe mental and physical disabilities has decreased
even before the COVID-19 pandemic, which has led to sib-
ling resentment>.
Increased Risk of Abuse due to Lack of Respite
One subcategory was “emergence of physical abuse due to
stress of lack of respite,” with codes such as <during the
COVID-19 pandemic, children and youth with special needs
were often discharged home from short-term care due to fe-
ver and so on, and siblings beat and kicked them>. Another
subcategory was “emergence of neglect due to exhaustion
from lack of respite,” with codes such as the <caregivers
were exhausted due to the unavailability of short-term and
residential care during the COVID-19 pandemic, increasing
the risk of neglect and other forms of abuse>.
Problems Encountered by Service Providers during the
COVID-19 Pandemic
Table 2-4 show the categories and subcategories of the prob-
lems encountered by service providers during the COVID-19
pandemic. Six categories, 25 subcategories, and 71 codes
were extracted.
Difficulty in Utilizing Social Resources
The subcategory “unable to receive the home-visit care they
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Table
1. Impact of the COVID-19 pandemic on children and youth with disabilities and their families.
Category Subcategory Cords
Concentration of
burden on pri-
mary caregivers
Critical care can only be
provided by the primary
caregiver.
Family members cannot leave their seats to change the fixation cord of the tracheal cannula
during hair washing, even when visited by the caregiver.
Family members bear the burden of caring for their children and youth with special needs
when the caregiver is unable to do so.
When the main caregiver is a pregnant mother and gives birth, the secondary caregiver re-
quires the support of home nursing.
Primary caregiver is very
restrained in attending to
disabled children.
In hospitals that require an escort on admission during the COVID-19 pandemic, the escort is
subjected to antibody and PCR testing, cannot be replaced by other family members, and is
forced to live a very restricted and burdensome life.
If something happens to the
primary caregiver, there is
no one to provide medical
care for the child.
When the main and secondary caregivers were infected, the children could not be left at the
hospital as they would also be considered as close contacts, and home nursing care was only
provided when necessary, which placed a very heavy burden on the family.
Simulating who would look after the child was difficult, as it was challenging to envisage
what would happen if the main caregiver contracted the coronavirus infection.
If something happens to the main caregiver, i.e., the mother, the father alone cannot take care
of the child, but it is difficult to avail of the new services during a pandemic, and home nurs-
ing compensates.
If the main caregiver is the mother who has to give birth, the children have to be looked after
by a family member with little caregiving experience.
Limited support available
from sub-caregivers
The carer’s siblings do not provide any assistance with medical care.
If the maternal grandmother was originally a medical professional, she can assist with suc-
tioning and infusion.
Livelihoods are not possible
without access to social re-
sources
It was believed that social resources would provide care services for children and youth with
special needs as well as employment and care for other family members, but in reality, this
was not possible.
When children and youth with special needs are discharged from the hospital, the burden of
care for the mother is high without home nursing.
Pregnant mothers have to leave their children in short-term care or other facilities, when nec-
essary, even during a pandemic.
Mental stress of
primary caregiv-
er
Increased emotional stress
for primary caregivers due
to restricted outings
Parents themselves also experience stress from being restricted from going out.
Two weeks of restraining themselves from going out due to intense contact is both physically
and mentally taxing.
Mental stress of primary
caregivers regarding the
continuation of care under
COVID-19
Parents are stressed out because they feel like they are treated like infected people when they
are visited by professionals wearing protective clothing during home care.
At the beginning of the spread of coronavirus infections, parents also endured a lot of stress,
and when they sought professional help online, they were tearful and wanted someone to lis-
ten to them.
Mental and
physical impact
on children and
youth with dis-
abilities
Decreased opportunities for
exercise due to restricted
outings
Children and youth with reduced physical function have fewer opportunities for physical ac-
tivity due to pandemic restrictions in terms of going out.
Mental stress due to restric-
tions on overnight stays for
children and persons with
disabilities in residential care
Children in residential care cannot visit their parents.
Children and youth in residential facilities used to be able to stay overnight with their par-
ents, but now, they are only allowed to see their parents through the window, which is men-
tally difficult for them.
Dissatisfaction/
anxiety about
changes in social
interactions
Changes in school and work
patterns and anxiety under
the COVID-19 pandemic
Not being able to return to work because daycare centers for children and youth with medical
care were not available when the state of emergency was declared.
The children attended school without any change in their daily routine despite the coronary
disaster, but school events have also been cancelled, and they felt that this was not good
enough.
In residential care facilities adjacent to schools, children in residential care are no longer al-
lowed to attend school because of infection control measures.
Dissatisfaction with the way
they interact with their moth-
ers’ friends
It is not that we cannot communicate and talk via Zoom or LINE, but we cannot contact each
other easily.
Parents feel that texting their friends as a form of interaction is insufficient.
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Category Subcategory Cords
Sibling/family
mental stress
Siblings’ mental stress due
to restricted outings
Parents were concerned about the mental health of their siblings who lived alone in other pre-
fectures, as they had not been able to see them for 2 years due to voluntary restrictions on
going out.
Sibling and family mental
stress due to lack of respite
The number of days of short-term stay for children and youth with severe mental and physi-
cal disabilities has decreased when compared with that before the COVID-19 pandemic,
which has led to resentment from siblings.
The whole family is stressed out because of the long periods of staying at home due to the
suspension of the daily operations of treatment and education facilities because of the rapid
increase in the number of infected patients.
Increased risk of
abuse due to lack
of respite
Emergence of physical abuse
due to stress of lack of re-
spite
During the COVID-19 pandemic, children and youth were often returned from short-term
care due to fever and so on, and siblings beat and kicked children and youth in medical care.
Emergence of neglect due to
exhaustion of lack of respite
Caregivers were exhausted because of the unavailability of short-term care and residential
care during the COVID-19 pandemic, increasing the risk of neglect and other forms of abuse.
Table
1. Impact of the COVID-19 pandemic on children and youth with disabilities and their families (continued).
used to receive” was identified. The other subcategories
were “unable to use the respite service with transportation
that theyhave been receivingpreviously,” “unable to use the
in-home or outpatient rehabilitation services that theyhave
been receivingpreviously,” an d “unable to use home-visit
nursingservices that theyhave been receivingpreviously.” It
was also revealed that due to the “high financial burden of
home nursingcosts,” it was impossible for them to use
home-visit nursing.
Disparities in the Use of Support Services and Systems
In this category, the followingfoursubcategories were
found: “differences in care and services dependingon the
available financial resources and discretion of cityand town
officials,” “disparities in social resources based on regional
characteristics,” “difference in response bythe staff-in-
charge,” and “differences in services used byparents de-
pendingon the information that theyhave.”
Problems duetotheChanges in the WayPeople Go to the
Hospital
In the subcategory“unable to connect to a medical facility
or delays in connectingto a medical facilitydue to restric-
tions on hospital visits,” the code <when children and youth
with special needs haveafever, theyare requiredtohavea
PCR test at another hospital before beingseen, and it takes
several days before theycan be seen bytheir familydoctor>
was extracted. The subcategories “discharged from the hos-
pital unprepared and uncoordinated due to concerns about
developingan infection duringhospitalization,” “incomplete
discharge coordination with the home care team,” and “dis-
charged from the hospital without parental connections”
were extracted. Duringthe COVID-19 pandemic, wealso
identified “anxietyrelated to uncertaintyof hospitalization in
the event of an infection.”
Difficulties in Assuringthe Qualityof Professional Care
The subcategories “difficulties in trainingprofessionals in-
volved in pediatric home care” and “the increasingadvance-
ment of care required in pediatrics” were extracted. Con-
versely, in the subcategory, “little evidence on qualityof
care,” the code <some rumors, includingthe virus eliminat-
ingeffect of the artificial noses used bychildren, have cir-
culated, but there is little reliable information> was identi-
fied. In the category“difficultyin balancingthe implementa-
tion of infection control measures and assurance of quality
of care,” the followingcodes were extracted: <there is a
method to limit the duration of home-visit nursingcare to
!15 min to prevent the spread of infection, but in the case
of children and youth with special needs, it is difficult to
limit the time of care because of the child’s need for assis-
tance in expectoration, toileting, and hygiene most of the
time>.
Challenges in OrganizingaPediatric Home Care Team
The subcategories of “limited human resources to support
pediatric home care” and “limited compensation for person-
nel supportingpediatric home care providers” were ex-
tracted. The present studyalso revealed the problem of “lack
of networkingamongmultidisciplinaryprofessionals in the
pediatric home care setting” and “premature networking
amongmultidisciplinaryprofessionals involved in pediatric
home care.” Moreover, the issue of “lack of common under-
standingof procedures amongfacilities, hospitals, and gov-
ernment institutions” was determined.
Need to Understand a Diverse Group of Children and Youth
with Special Needs
The surveyrevealed the subcategory“care needed for chil-
dren and youth with special needs varies widelyaccording
to their disability,” which included the code <the existence
of children and youth with disabilities who cannot wear
masks, which is an infection control measure, is not
known>. In the subcategory“large differences in family’s at -
titudes about the care needed bychildren and youth with
special needs,” the code <there is a wide range in the famili-
es’ approach to infection control, with some families just
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Table
2. Impact of the COVID-19 pandemic on healthcare service and health professionals.
Category Subcategory Cords
Difficulty in uti-
lizing social re-
sources
High financial burden of
home nursing costs
Parents want to use home visit nursing but cannot because it is too expensive.
Parents find it challenging to use home visit nursing because it is too expensive if they do not
have access to the medical aid scheme.
Unable to use home nursing
as before
Parents attempt to reduce the risk of infection by reducing the number of home nursing visits.
They used to ask nursing care professionals to accompany them to the hospital, but they are
no longer able to use this service due to the prevention of COVID-19 infection.
Unable to receive the home-
visit care they used to re-
ceive
Normally, family members could accompany the patient to hospital, but during the coronary
disaster, this was limited to the parents.
The hospital escort was provided by a care worker, but due to infection preventive measures,
this was no longer available, and the relative had to care for the patient alone.
Unable to use the respite
service with transportation
that they have been receiv-
ing
Short-term residential facilities were closed due to the corona disaster.
Treatment and education facilities had to be suspended due to a sharp increase in the number
of infected people.
The city issued a request to suspend day services.
Many short-stay and day-service establishments stopped accepting patients.
Short-term accommodation was not available due to the coronary disaster. Even when this
could be used, the duration had to be shortened because of the need to take a PCR test the day
before admission and because they were located far away.
To avail of the short-stay service, a hospital visit is required, but because of the absence of a
corresponding doctor, the patient is unable to use the service.
The parents had to take the child to and from the residential and day care services as car
transport services were no longer available.
If a previous short-term residential facility was suspended, the child had to use another short-
term residential facility from a distant location, which was an hour drive away.
The child had been attending several rehabilitation facilities, but owing to the coronary disas-
ter, these facilities were reduced to one.
Unable to use the in-home
or out-patient rehabilitation
services they have been re-
ceiving
Rehabilitation was not available due to restrictions placed on rehabilitation by the treatment
and education facilities.
In-home rehabilitation is not available due to infection control measures, which results in in-
creased cases of contractures.
Before the coronary disaster, training was carried out simultaneously for residents and day
carers, but after the coronary disaster, the number of training sessions was reduced from
twice to once a week in order to limit the number of close contacts.
Parents are unable to perform the activities at the rehabilitation center at home, so children
have less time to move.
Disparities in the
use of support
services and sys-
tems
Differences in care and ser-
vices caused by the finan-
cial resources and discretion
of cities and towns
Under the Long-Term Care Insurance Act, the support is the same throughout the country,
but under the Comprehensive Support for Persons with Disabilities Act, the support varies
from city to city.
Children necessitate sputum suctioning when being driven to day care or residential facilities,
but some prefectures do not permit the use of home visit nursing during transport. Further-
more, even if it is recognized by the prefecture, nursing care during transport may not be rec-
ognized by the city or town.
Depending on the local government’s finances, the accessibility and disaster response are not
different between regions.
Disparities in social resourc-
es based on regional charac-
teristics
Regional disparities in social resources exist.
There are regional disparities in terms of the response of hospitals and health centers, even
within the prefecture, depending on the size of the population, such as difficulties in contact-
ing health centers in more populated areas.
Difference in response by
staff in charge
There is a difference in the response depending on the official in charge.
Differences in services used
by parents based on the
amount of information they
have
There are parents who can obtain information on social resources on their own, notice re-
gional disparities, and negotiate with the municipality themselves, but there are those who
cannot.
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Table
3. Impact of the COVID-19 pandemic on healthcare service and health professionals.
Category Subcategory Cords
Problems due to
the changes in
the way people
go to the hospi-
tal
Unable to connect to a med-
ical facility or delayed in
connecting to a medical fa-
cility due to restrictions on
hospital visits
When children and youth with special needs have a fever, they are required to have a PCR
test at another hospital before being seen by a doctor, which could take several days.
Due to the coronary disaster, medical institutions restricted the admission of new patients or
hospital visits of patients.
Parents alone cared for their children and youth with day and night respirators because they
were unable to avail of new health services due to relocation or other reasons.
At the beginning of the corona pandemic, parents were reluctant to see their children because
they did not want them to be infected, but this was less common after the sixth wave.
Discharged from the hospi-
tal unprepared and uncoor-
dinated due to concerns
about infection during hos-
pitalization
An increase in the number of parents of hospitalized children and youth who were concerned
about the spread of infection and wished to be discharged early without any preparation.
Parents of hospitalized children and youth perceived that they could be discharged once they
know how to perform suctioning, tube feeding, and respiratory care, and there was an in-
crease in the desire to be discharged without staying overnight in the hospital.
In the wards, there was an increase in the number of people who were discharged receiving
appropriate care, although they also wanted to proceed with respite services and emergency
suctioning after discharge and in anticipation of long-term fatigue.
For families, if there is only so much they can do in the wards, they hope that the patients go
home early, considering the risk of infection.
Incomplete discharge coor-
dination is passed on to the
home care team
Children and youth with underlying medical conditions have difficulty in understanding the
symptom changes.
Difficulty in understanding the situation after being discharged from hospital.
Unable to fully adjust before discharge due to the lack of test performed during overnight
stays at the hospital.
Discharged from the hospi-
tal without being able to
make parental connections
Before the COVID-19 pandemic, hospital nurses used to introduce families with the same
medical care, such as those with children and youth requiring tracheostomy or ventilator, to
each other, creating a support group among them, but this is not possible now.
After the COVID-19 pandemic, hospital nurses referred parents to parent associations.
Anxiety related to uncer-
tainty of hospitalization in
the event of infection
Whether a family member can be admitted to a hospital if the beds are full when he or she
develops a disease is uncertain.
After the COVID-19 pandemic, even for children and youth on ventilators, it was not possi-
ble to decide in advance where the caregiver would be admitted in case of an infection.
Because the child is on a ventilator, it was not possible to predict whether he would be cared
for at home or hospitalized if he develops a COVID-10 infection.
Difficulties in as-
suring quality of
professional care
Little evidence for quality
assurance of care
Some rumors circulated that the artificial noses used by children and youth may have a vi-
rus-eliminating effect, but there is little reliable information about this.
There is little information on the actual situation, as no pediatric respirator user has actually
been infected with COVID-19.
Difficulty in balancing the
implementation of infection
control measures and assur-
ance of quality of care
There is a method to limit the duration of home-visit nursing care to ≤15 min to prevent
spread of infection, but in the case of children and youth, it is difficult to limit the time of
care because of the child’s need for assistance in expectoration, toileting, and hygiene most
of the time.
Using a face shield while providing care was a concern as the child’s head and face could be
touched, and they might injure themselves.
Difficulties in training pro-
fessionals involved in pedi-
atric home care
Motivation and professionalism are also important for the nurses.
As the methods of medical care differ between home visit nurses, it is necessary to unify the
techniques.
It is desirable for consultation support specialists to have a medical background as an apti-
tude.
Training for coordinators of children and youth in medical care is provided based on a curric-
ulum, but if the training becomes a mere formality and only carried out to obtain additional
fees, it does not contribute to improving the quality of the profession.
The increasing advancement
of care required in pediat-
rics
Although there has certainly been an increase in the interventions that can be done at home,
there is a reckless desire to do home care interventions that are beyond the family’s skill level
and that can only be done in the hospital.
JINR 2025, e2023-0037. Advance Publication https://doi.org/10.53044/jinr.2023-0037
8
Table
4. Impact of the COVID-19 pandemic on healthcare service and health professionals.
Category Subcategory Cords
Challenges in or-
ganizing a pedi-
atric home care
team
Limited human resources to
support pediatric home care
As there are few speech-language pathologists available for children and youth in the home
healthcare team, arrangements are made for visits to be less frequent and with a wider range
of visits.
In both before and after the COVID-19 pandemic, the consultant support specialist is not able
to work with the hospital due to a lack of personnel.
Among those qualified to become a “coordinator for medical devices,” only a few are actual-
ly carrying out the coordination.
Limited compensation for
personnel who support pedi-
atric home care providers
Training courses for coordinators for children and youth with medical devices have been es-
tablished, but remuneration is not in place.
Additional payments to establishments for the treatment of consultation support specialists
are not sufficient.
Premature networking among
multidisciplinary profession-
als in pediatric home care
Hospital nurses do not receive timely information on model projects and prefectural trends
related to pediatric home care; hence, they are unable to utilize this information in family
care.
The ward nurses are unable to obtain all required information, so they ask the coordinators.
Although we hear about people who have received training as coordinators for children and
youth in medical care, there are no people with this qualification involved in discharge sup-
port at hospitals, and we have not met qualified individuals in the field and do not know how
we can find them.
Lack of common understand-
ing of procedures among fa-
cilities, hospitals, and gov-
ernment
When one parent was told that her child needed a PCR-negative certificate for her to avail of
day services, she went to the hospital where the test was done and was told that the certificate
could not be issued because the PCR test was not done based on the instructions of the health
centre. The procedures were not consistent at the respective establishments.
Need to under-
stand a diverse
group of children
and youth with
special needs
Care needed for children
and youth with disabilities
varies widely by disability
Many children have medical care needs, from very mild to very severely ill.
Children and youth with severe disability cannot move on their own; hence, care providers
were more likely to keep their distance, so facilities were able to care for them as regular cas-
es.
In the case of children and youth with severe mental disability who were able to move, infec-
tion prevention was very difficult to perform and facilities strictly require that these measures
be performed
Large differences in family
attitudes about the care
needed for children and
youth with disabilities
Family’s attitudes toward infection control varied widely; in some cases, hand washing and
disinfection were sufficient, whereas in others, use of protective clothing and gloves and pre-
ventive measures were required.
In some cases, families who would even refuse visiting services to prevent infection were
taken seriously.
Lack of variation in mea-
sures tailored to disability
characteristics
When society as a whole is affected by the coronary disaster, individual disabilities are not
understood or considered.
The existence of children and youth with disabilities who cannot wear masks, as an infection
control measure, is not known.
Generally, there are many children and youth with disabilities who cannot easily adapt to
changes in their environment, such as going to places that they do not know, even as a pre-
ventive measure against the spread of infection.
A nurse, unaware that a child with a fever had a disability, responded to an outpatient call at a
general hospital in the same way she would normally respond to a child with a fever and was
sent around.
The child and parents could not go anywhere because the children could not wear masks be-
cause of their disability and they could not stay in one place.
washingand disinfectingtheir hands, while others require
the use of protective clothing, hats, and gloves as well> was
found. Additionally,inthesubcategory“lack of variation in
measures tailored to the disability’s characteristics,” the code
<a nurse, unaware that a child with a fever had a disability,
responded to an outpatient call at a general hospital in the
same wayshe would normallyrespond to a child with a fe-
ver and was sent around>.
Discussion
Effects on Children and Youth with Special Needs and Their
Families
In the present study,FGsinvolvingchildren and youth with
https://doi.org/10.53044/jinr.2023-0037 JINR 2025, e2023-0037. Advance Publication
9
special needs, their families, and their supporters were con-
ducted to clarify the impact of the COVID-19 pandemic on
children and youth with special needs and their families in
Japan, as well as the measures taken to address these issues.
In Japan, the burden of caregiving was concentrated on the
primary caregiver, usually the mother, and as with the
spread of COVID-19 infection, the physical and mental
stress of the primary caregiver increased, and the mental
health of siblings was also affected. Therefore, mental health
care for the primary caregivers was considered important. It
was suggested that home-based caregiving quickly disinte-
grates when the primary caregiver becomes unable to care
for the child and youth with special needs due to the spread
of infectious diseases.
To ensure family care is continued, mental health care in-
terventions that can be done at home during lockdown must
be promoted (Abdat et al., 2023; Isik et al., 2023; Lillie et
al., 2021). Several previous studies have reported the need
for such support. The measures to enhance self-help capa-
bilities include virtual training on stress management for
parents of children and youth with special needs (Abdat et
al., 2023) and mask-wearing training for children and youth
with autism, which have been reported to have some success
(Lillie et al., 2021). For some families, focusing on the idea
that “these days will end someday” by engaging in self-
activities (such as journaling and exercise) to maintain a sta-
ble sense of normalcy, attending free online access to muse-
ums and zoos, and active use of telemedicine is effective for
some individuals (Isik et al., 2023).
Regarding the prevalence of COVID-19 in Japan, when
our study began, most of the patients with COVID-19 infec-
tions were aged >70 years. In the first survey, the child-
rearing generation was not familiar yet with COVID-19, and
it was difficult for them to have a concrete image of what it
would be like to be infected. Nevertheless, vaccination be-
gan during the fourth wave, and the number of individuals
with infections aged >70 years decreased. During the sixth
wave, the number of infected persons aged <10 years, and
those in their teens increased remarkably. In the second and
subsequent waves of interviews, as cases of pediatric
COVID-19 infections have been reported, there was an in-
crease in the codes about mental stress. There was also an
increased risk of physical abuse and neglect due to pro-
longed lack of respite, rehabilitation, and other services. For
children and youth with severe mental and physical disabili-
ties and medical care and their families, there was a lack of
information about the disease; hence, although they have an
imminent risk of developing the infection, they were unable
to decide on what to do in case an infection develops in the
family.
Hence, correct information must be promptly provided to
children and youth with special needs and their families. Te-
lemedicine is believed to offer significant advantages to chil-
dren and youth with special needs who experience difficul-
ties with mobility and their families. Previous studies exam-
ining telemedicine for children and youth with mental im-
pairment (Selick et al., 2023) and autism (Burke et al.,
2022) have reported that >80% of parents of children and
youth with neurodevelopmental disabilities were highly sat-
isfied with telerehabilitation (Frigerio et al., 2022). Never-
theless, some populations have difficulty accessing telemedi-
cine, with single-parent families, those with low educational
levels (high school), those with a low income, and those
with older children; part-time workers; and men reportedly
less likely to receive services (Gonzalez et al., 2022). Al-
though this study also noted disparities in the services be-
tween regions, the abovementioned disparities related to te-
lemedicine should be noted.
In terms of education, appropriate information has been
provided by the government through its website. Neverthe-
less, the dissemination of information to children and youth
with special needs who have various characteristics can
probably be improved. For example, codes including “In in-
fection control measures, understanding of the individual
characteristics of children and youth with disabilities that
they cannot wear masks should be given” were extracted,
even if masks are required to be worn in schools. The infor-
mation on the website lacked information on the level of
consideration that could be given, and information on indi-
vidual consultation services was considered important.
Impact on Medical Institutions and Services and Counter-
measures
This study also found that the COVID-19 pandemic also
caused difficulties in accessing medical facilities and utiliz-
ing social resources for welfare. Moreover, the COVID-19
pandemic has changed the way people go to the hospital.
Increasingly, children and youth with special needs are dis-
charged from the hospital without any coordination, which
makes it more challenging to maintain the quality of pediat-
ric care and to build home care teams. Considering that pe-
diatric home care in Japan varies per municipality, a dispar-
ity between municipalities that were able to move flexibly to
address these issues and those that were not was observed.
Previous studies have reported the impact of the unavail-
ability of respite services on siblings. A previous qualitative
study that involved siblings (Bichard et al., 2022) reported
that they were also burdened with helping their siblings with
special needs at home when school was canceled, which af-
fected their ability to work on their school activities. It has
also been reported that 75% of children and youth with spe-
cial educational needs have been bullied or hurt by their sib-
lings, which is more common among children and youth
with mild disabilities than among those with severe disabili-
ties (Toseeb, 2022). One in three siblings bullies a child
with a disability almost daily, and siblings who are younger
than the child with a disability have better language skills
JINR 2025, e2023-0037. Advance Publication https://doi.org/10.53044/jinr.2023-0037
10
and do not have an Education, Health and Care Plan and are
more likely to engage in bullying (Toseeb, 2022). In Japan,
due to the shortage of consultation support specialists, care
planning has been widely used among all families. Based on
the results of the previous studies mentioned above, an ap-
proach on how to expand the care management services that
target the entire family must be established.
Lack of staff was due to the unavailability of medical fa-
cilities, considering that many medical staff became concen-
trated contacts of COVID-19 and many retired. In the
United States, the rapid turnover of professionals who di-
rectly support children (persons) with disabilities during the
COVID-19 pandemic has led to an investigation of factors
that increase staff resilience during these stressful and diffi-
cult times (Desroches & Tyo, 2023). To ensure that family
physicians of children and youth with disabilities can con-
tinue to provide care in preparation for further pandemics,
measures to prevent turnovers in such emergencies should
also be taken.
The limitations of the present study included the small
sample size and the fact that the study was conducted at two
time points. Despite these limitations, we believe that our
study is a valuable resource because it describes how the
COVID-19 pandemic affected children and youth with spe-
cial needs and their families in Japan. The daily care of chil-
dren and youth with special needs is highly dependent on
their primary caregivers. Therefore, the social resource sys-
tems must be expanded, and mental health measures that
families can utilize themselves in case public services are
temporarily unavailable due to a pandemic should be pro-
moted. The government must make efforts to correct dispari-
ties between municipalities from normal times in preparation
for emergencies, such as the spread of COVID-19 infection.
Furthermore, a system that enables smooth cooperation be-
tween the government, hospitals, and communities and en-
sures that information reaches children and youth with spe-
cial needs and various characteristics must be developed.
Acknowledgments
This work was supported by JSPS KAKENHI [Grant Num-
ber JP23K10241].
Author Contributions
KO contributed to the conception and design of the study,
data collection, data analysis and interpretation, drafting of
the Introduction and Discussion sections, and critical revi-
sion of the manuscript. CH contributed to the study concep-
tion, data collection, data analysis, and drafting of the Re-
sults section. KF contributed to the data collection, data
analysis and interpretation process, and drafting of the
Methods section. JH and TY contributed to the study con-
ception, data collection, and data analysis and interpretation
process.
Declaration of Conflicting Interests
None.
Ethical Approval
Approval for this study was given by the Institutional Re-
view Board College of Nursing Art and Science, University
of Hyogo, and Research Institute of Nursing Care for Peo-
ple and Community (ID number 2020F10).
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