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Dev Med Child Neurol. 2023;65:885–899.
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In response to COVID- 19, many countries applied measures
and restrictions to limit virus spread, including ‘lockdowns’.
In the UK, these measures included social distancing, self-
isolation, work- from- home mandates, and closure of some
educationa l institut ions.1 Health care provision changed r ap-
idly. Services deemed to be providing ‘non- urgent care’ sus-
pended in- person appointments at home and in hospital and
community settings,2,3 and many implemented telehealth
(i.e. remote health care provision using telecommunication
technology such as telephone, e-mail, and videoconferenc-
ing) to maintain contact with service users.
Service disruption adversely impacted children with
disability and their families,4,5 whose health, social care,
education, and social support networks were all affected.
SCOPING REVIEW
Impacts of health care service changes implemented due to
COVID- 19 on children and young people with long- term disability:
A mapping review
HannahMerrick1 | HelenDriver1 | ChloeMain1 | Ryan P. W.Kenny2 |
CatherineRichmond2 | AmandaAllard3 | KulwinderBola4 | ChristopherMorris5 |
Jeremy R.Parr1,6,7 | FionaPearson2 | LindsayPennington1 | on behalf of the Resetting
Services Team
Received: 3 Augus t 2022
|
Accepted: 29 November 2022
DOI : 10.1111/d mcn.15 503
This is a n open access ar ticle under the terms of the Creative Com mons Attribution License, which permits use, d istribution a nd reproduction in a ny medium, provided the
original work is properly cited.
© 2023 The Aut hors. Developmental Medicine & Child Neurology published by John Wile y & Sons Ltd on behalf of Mac Keith Press.
Abbreviations: AHP, allied hea lth professional; ASD, autism s pectrum di sorder.
1Population Healt h Sciences Institute,
Newcast le University, Newcast le upon
Tyne , UK
2Evidence Sy nthesis Group, Popul ation Health
Sciences Institute, Newc astle University,
Newcast le upon Tyne, U K
3National Chi ldren's Bureau, London, UK
4Bedford Borough Council, Bedford , UK
5Peninsu la Childhood Disabi lity Research
Unit, University of Exeter Medic al School,
Universit y of Exeter, Exeter, UK
6Newcast le upon Tyne Hospitals N HS
Foundat ion Trust, Newcast le upon Tyne, UK
7Cumbria Northumberland Tyne and Wear
NHS Found ation Trust, Newcas tle upon
Tyne , UK
Correspondence
Hanna h Merrick, Populat ion Health Sciences
Instit ute, Faculty of Medical Science s,
Newcast le University, Royal Vic toria
Infi rmary, Sir James Spence Institute, Queen
Victoria Road, Newcastle upon Tyne, NE1
4LP, UK.Email: ha nnah.merrick@ncl.ac.uk
Fundin g information
National Institute for Hea lth and Care
Research, Grant/Award Number: 2 02478;
Northumbr ia University
Abstract
Aim: To identify the research on childhood disability service adaptations and their
impact on children and young people wit h long- term disability during the COVID- 19
pandemic.
Method: A mapping review was undertaken. We searched the World Health
Organization Global COVID- 19 database using the search terms ‘children’, ‘chronic/
disabling conditions’, and ‘services/therapies’. Eligible papers reported service
changes for children (0– 19 years) with long- term disability in any geographical or
clinica l setting between 1st January 2020 and 26th January 2022. Papers were charted
across the effective practice and organization of care taxonomy of health system in-
terventions and were narratively synthesized; an interactive map was produced.
Results: Reduction of face- to- face care and usual provision had a huge impact on
children and families. Adoption of telehealth provided continuity for the care and
management of some conditions. There was limited evidence of changes to mental
health services, transitions of care, social care, or child- reported satisfaction or ac-
ceptability of service changes.
Interpretation: The long- term impacts of service change during the pandemic need
full evaluation. However, widespread disruption seems to have had a profound im-
pact on child and carer health and well- being. Service recovery needs to be specific
to the individual needs of children with a disability and their families. This should
be done through coproduction to ensure that service changes meet needs and are
accessible and equitable.
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MERRICK et al.
Early in the pandemic, international surveys and inter-
views with families of children with a disability suggested
that COVID- 19 lockdowns were leading to an increase in
children's needs, delays in assessments and diagnosis, and a
deterioration in the mental health and well- being of parent
carers and young people.6,7 The nature and extent of restric-
tions and changes to multidisciplinary and multi- agency
health care services and their effects, both negative and pos-
itive, is yet to be comprehensively evaluated.
This review aimed to identify research on childhood dis-
ability service adaptations and their impacts, and to map
this evidence across health, education, and social care/wel-
fare support to show the breadth, nature, and extent of evi-
dence and detect gaps in our understanding.
METHOD
The comprehensive mapping review protocol was published
in full (https://osf.io/4h29a/) and is reported according to
the Preferred Reporting Items for Systematic Reviews and
Meta- Analyses extension for Scoping Reviews (PRISMA-
ScR) checklists and elaboration because this extension also
applies to evidence maps that share methodological similari-
ties with scoping reviews.
Population
Our population consisted of children and young people aged
0 to 19 years with confirmed or suspected long- term dis-
ability, their families, and professionals working with chil-
dren with long- term disability. Long- term disability refers
to a group of congenital or acquired long- term conditions
that create functional limitations. These include neurodis-
ability conditions attributed to impairment of the brain and/
or neuromuscular system and congenital anomalies and
genetic conditions affecting body structures and function.8
Examples of conditions included are autism, cerebral palsy
(CP), epilepsy, and Down syndrome. In a deviation from the
protocol, studies were included if at least 90% of individuals
in the sample were 19 years of age or younger to prevent the
exclusion of papers that included a small adult sample along-
side our population of interest.
Concepts
Change to standard care or service delivery that occurred
due to the COVID- 19 pandemic was evaluated. This in-
cluded service use (e.g. changes in the number of service
contacts, planned and unplanned), changes in health and
well- being outcomes associated with changes to service de-
livery, and experiences (attitudes, satisfaction, knowledge) of
children, their parent carers, health care professionals, and
family members during changed implementation.
Context
All settings (e.g. school, home, hospital, social care, charity)
within which changes to care and/or services occurred were
considered; there was no geographical restriction.
Study design(s)
All study designs were considered.
Exclusion criteria
Studies reporting changes to any health service for the
general population, which did not focus specifically on
childhood disability or present their data separately, were
excluded. Any study evaluating change to standard care or
service delivery that were not due to the COVID- 19 pan-
demic were ineligible. Interventions not directly implicated
with service changes were excluded. Non- empirical studies,
such as editorials and commentaries, were not eligible.
Search strategy
The search strategy was developed with an information spe-
cialist. We searched the World Health Organization Global
COVID- 19 database, which collates published and preprint
research from a range of sources and is updated regularly
(AppendixS1); this included the most relevant range of sources
for this topic (including social care, social sciences, and educa-
tional literature, as well as medical literature). This database was
searched through a Web- based platform (https://search.bvsal
ud.org/globa l- liter ature - on- novel - coron aviru s- 2019- ncov/).
The main search terms of the search were children AND
chronic/disabling conditions AND services/therapies (see
Appendix S2 for the full search terms used). The search
What this paper adds
• The biggest change was a reduction in in- person
appointments and usual care.
• Telehealth for consultations and continued care
was broadly feasible in medically led services.
• Telehealth was reported as less feasible for allied
health- led care.
• School closures significantly impacted on young
people's access to services, wider support, and
routine.
• Widespread service disruption profoundly im-
pacted the health and well- being of children,
families, and carers.
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IMPACTS OF HE ALTH CARE SERV ICE CHANGES I MPLEMENTED DUE TO COVID- 19 ON
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terms included common neurodisability conditions that re-
quired multidisciplinary input; however, ‘disability’ was also
included as a superordinate term to capture other long- term
disabilities. The World Health Organization COVID- 19 da-
tabase permits searching with Medical Subject Headings and
text word searches in the title, abstract, and subject terms
of each record. To use Medical Subject Headings in this in-
terface, tree numbers had to be used; thus, the search was
initially developed in Ovid MEDLINE then translated to
the World Health Organization COVID- 19 database. The
searches (starting from 1st January 2020) were run on 27th
October 2021; 7532 results were retrieved in total, exported to
the EndNote X9 reference management software (Clarivate,
London, UK), and duplicates were removed; 7376 unique re-
cords remained. A second search was run on the 26th January
2022. An additional 1424 unique records were retrieved.
Screening
Title and abstract screening was completed independently by
two reviewers (from HM, HD, RPWK, CM) in Rayyan (https://
www.rayyan.ai/), an online tool to aid screening in reviews.9
Subsequently, the full texts of potentially relevant studies were
sought and screened independently by two reviewers (HM, HD,
RPWK, CM). Google Translate was used to translate studies
published in a language other than English when necessary.
Data extraction and charting
A single reviewer (HM, HD, CM) extracted all relevant data
from the included full- text records using piloted coding tools
within the EPPI- Reviewer 4.0 software (by EPPI- Centre,
Social Science Research Unit, the Institute of Education, the
Universit y of London, L ondon, UK).10 Extr acted data included:
study design and methodology; geographical location(s); sam-
ple and participants; description of the change in service dur-
ing COVID- 19; outcomes measured and reported (e.g. cost of
service change, service use/access, health and well- being out-
comes, and experiences of service change); and descriptions
of the impacts of the changes or themes identified. Ten per-
cent of the papers were checked for accuracy and complete-
ness by a second reviewer. Differences between reviewers were
resolved by consensus before continuing with the remaining
data extraction. The evidence was charted across sections of
the effective practice and organization of care taxonomy of
health system interventions to produce an interactive map
providing an overview of the included research.11 A narrative
synthesis summarizes the data.
Identification of research gaps through
consultation
Four family advisory groups were set up through open, flex-
ible recruitment.12 Two groups consisted of parent carers
(n=11) and two of young people (n=8). Parent carer groups
were run online using Zoom, while the young people groups
were held in person. Indicative research gaps identified by
the research team were presented to the groups in one- off
interactive events. Advice was sought on the importance of
topics identified as gaps, which gaps were most important
to address, and the knowledge or understanding required in
those areas.
The advisory groups also identified additional gaps or
areas of service change during the pandemic not identified
through the review. Advisory groups were involved at a con-
tributing level with their opinions used to shape and form
the synthesis presented.12
RESULTS
A total of 8800 records were screened at the title and abstract
stage and 470 full texts were assessed for eligibility. Of these,
119 were included in the rev iew (FigureS1). The most com mon
conditions were epilepsy, autism spectrum disorder (ASD),
attention- deficit/hyperactivity disorder (ADHD), and intel-
lectual disability (Table1). Table2 provides further details
about the characteristics of the papers and samples report-
ing on each condition. Most studies reported findings from
hospital settings (n=63) or community care settings (n=39).
Most papers reported parent carer- reported outcomes, while
only five papers provided children and young people's self-
reported outcomes. Most papers reported on data collected
in the early stages of the pandemic from January 2020 to July
2020 (n=87), while 30 papers included data collected up to
December 2020 and 11 included data collected in later peri-
ods of the pandemic (January to May 2021).
Forty- three papers reported cross- sectional survey find-
ings about the experiences of families and professionals
during the COVID- 19 pandemic and a further eight papers
reported mixed- methods findings. Ten papers were descrip-
tive studies of telehealth programmes implemented during
COVID- 19 and 27 studies looked at the feasibility, accept-
ability, and/or effectiveness of telehealth using quantitative
methods (n=22), mixed methods (n=6), and retrospective
chart review (n=3) approaches. There were eight qualita-
tive studies, eight papers reporting case studies, four review
papers, and two studies comparing non- concurrent cohorts.
Service change outcomes
The interactive map provides a visual overview of the re-
search and gaps (https://bit.ly/3PEzjj1). The most common
service change reported on in the research was transition
from in- person appointments to telehealth, followed by
changes in the frequency of consultations, changes in in-
person appointments, and increases in parent carer manage-
ment (Table3). Initial virus containment measures resulted
in sudden and extensive suspension of services across all
countries, service types, and settings. Rapid uptake in
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MERRICK et al.
TABL E 1 Summar y of diagnosis group by study design with a description of sample sizes
National surveyaClinical group/settingaMedical records reviewaQualitativeaCase studyaTot a l
Papers nPapers nPapers nPapers nPapers nPapers n
Developmental disordersb16 3818 19 4289 444 3 167 6185 114 46 451 473
ASD 3590 6855 2170 0 0 3 8 14 1623
Epilepsy 711 3 46 4223 1204 1 8 0 0 13 11 781
ADHD/ASD/intellectual
disability
3387 3388 2359 1117 1 0 10 1251
ADHD 0 0 1 40 1190 161 0 0 3 291
Cerebral palsy 0 0 6 531 1100 0 0 0 0 7 631
Genetic condition/syndrome 1125 1216 0 0 0 0 1 1 3 342
Physical disability/learning
disability
0 0 4 227 118 0 0 1 3 6 248
Congenital 1301 145 0 0 0 0 0 0 2 346
High- risk infant follow- up 1144 2108 0 0 0 0 0 0 3 252
Vision/hearing impairment 1 533 21062 0 0 0 0 1 1 4 1596
Neuromuscular disease 123 0 0 0 0 0 0 0 0 1 23
Fragile X syndrome 1 67 0 0 0 0 0 0 0 0 1 67
Intellectual disability 148 0 0 0 0 0 0 0 0 1 48
Tot a l 36 17 3 82 49 7984 12 444 208 9371 827 114 c–
Abbrevi ations: ADHD, attent ion- defic it/hyperac tivity disorder; ASD, aut ism spectru m disorder.
aNational surve y refers to online su rveys sent out to groups via soc ial media or groups; clin ical group/sett ing refers to studies that took place within a specific cli nical sett ing (e.g. a hospital or a hospital depart ment); medical record s review
refers to studies rep orting descr iptions of data retrieved f rom medical records; qua litative studies include papers rep orting on inter views and ana lysis of social media group content; c ase studies refer to papers describi ng the experience of
one or more specific cases.
bDevelopment al disorders refer s to studies that i ncluded a sample of chi ldren with neurodevelopmental needs, covering all other diagnoses li sted in the table, but where resu lts were not disaggregated by specific diagnosis.
cThe total i s missing five records that were liter ature reviews (n=4) or a qua lity improvement study (n=1).
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IMPACTS OF HE ALTH CARE SERV ICE CHANGES I MPLEMENTED DUE TO COVID- 19 ON
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telehealth enabled some continuity of care. There was in-
creased use of videoconferencing in some settings across
medical care, allied health professions, and some educa-
tional settings. Some services ceased to be provided, were
not replaced by telehealth initially, and did not return until
face- to- face services resumed. Alongside this, there was an
increased reliance on parent carer management, with par-
ent carers trying to maintain therapies and monitoring their
child's health at home.
The narrative synthesis below gives a detailed outline of
the findings reported in the identified papers. This narrative
separates the findings into three categories: (1) medically
led services, where care is led by doctors and delivered by
doctors, nurses, and other health professionals; (2) allied
health- led services, providing rehabilitation, health, and
developmental management including therapy, psychology,
and nutrition; and (3) educational settings, social care, and
voluntary sector settings, related to services delivered to sup-
port social and educational outcomes.
Medically led services
Frequency of consultations
Twenty- three papers reported the disruption to ser-
vice frequency of hospital and medical service delivery.
Reinstatement of service delivery through telehealth pri-
oritized children and young people who required medical
monitoring and intervention. Two studies reported that
emergency attendances reduced markedly during the pan-
demic.13,14 Two studies comparing emergency and primary
mental health appointments from before and after lock-
down at the start of the pandemic described a decline in the
number of consultations during the initial period, with con-
sultation volumes returning to prepandemic levels by June
2020.15,16
TABL E 2 Summar y of information about the 119 papers identified
by the review
Filter
Total number
of papers coded
(n=119)
Percentage of
total papers
(n=119)
Setting
Hospital 64 53.8
Community 39 32.8
Educational setting 18 15.1
Social care 11 9.2
Charity/third sector 32.5
Undefined 12 10.1
Age group of children and
young people
Preschool (0– 5 years) 61 51. 3
School- age (5– 16 years) 85 71.4
Postschool (16+ years) 35 29.4
Not reported 43.4
Group reporting
Parent carers 76 63.9
Professionals 50 42.0
Children and young
people
54.2
Sample size
1– 10 10 8.4
11– 30 12 10.1
31– 100 33 27. 7
101– 50 0 47 39.5
501– 1000 54.2
>1000 54.2
Not applicable 75.9
Geographical location
USA 34 28.6
Italy 18 15.1
India 11 9.2
UK 97.6
Turk e y 65.0
Canada 65.0
International 54.2
France 54.2
Spain 32.5
Germany 32.5
China 21.7
Israel 21.7
Australia 21.7
Philippines 21.7
Saudi Arabia 21.7
Argentina 10.8
Brazil 10.8
(Continues)
Filter
Total number
of papers coded
(n=119)
Percentage of
total papers
(n=119)
Denmark 10.8
Hong Kong 1 0.8
Iran 10.8
Ireland 10.8
Norway 10.8
Poland 10.8
Romania 10.8
Jordan 10.8
Iceland 10.8
Tunisi a 10.8
Singapore 10.8
Records d iscuss multiple c onditions/groups/set tings; thus, single re cords are not
coded to conditions a nd outcomes in a mutua lly exclusive manner.
TABL E 2 (C ontinued)
890
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MERRICK et al.
Half of medic al appointments for children and young pe o-
ple with epilepsy scheduled before lockdown were postponed
and two- thirds of children and young people had a specialist
appointment cancelled.13,17,18 In a study across 49 countries,
nearly all clinicians reported reduced access to an electro-
encephalogram (EEG), that epilepsy surgery was on hold for
one- third of children and young people, and that they could
only initiate diet therapies (for example, the ketogenic diet)
for urgent cases.19 Two- thirds described a decreased admis-
sion rate for new- onset infantile spasms. Clinicians reported
that epilepsy surgery evaluations and epilepsy surgeries were
mostly limited to urgent and life- threatening cases.19 The
study recommended that the risk– benefit analysis of delayed
surgeries and diet initiations should be carefully considered.
There were mixed reports on changes in seizure frequency
for children and young people with epilepsy indicating that
this was a result of service disruption and the wider diffi-
culties experienced during the pandemic.13 For example,
one study reported that an increase in seizures was associ-
ated with parent carer reports of difficulties in giving timely
medication due to loss of daily routine.20 Broader impacts
such as changes to routine were also reported to result in be-
havioural deterioration for children and young people with
epilepsy.18,21
Some postponement of medical appointments was re-
ported in the treatment of children and young people with
CP and delays were reported in administering botulinum
neurotoxin A injections, although medical appointments
were more stable than access to therapies.22,23 One study
reported that these delays resulted in an almost six- fold in-
crease in pain complaints and worsening of spasticity.22
Continuation of in- person appointments
In- person appointments remained highest in medically led
compared to allied health professional (AHP) services, with
up to 75% of studies reporting maintaining some in- person
hospital appointments. The establishment of ‘COVID- free’
hospitals24 and separate clinic hours for infection- and non-
infection- related consultations25 allowed the continuation
TABL E 3 Service change outcomes reported
Outcomes
Total number of
papers coded
Percentage of
total papers
(n=119)
Telehealth 91 76.5
Videoconferencing only 38 31.9
Telephone only 2 1.7
Combination of telephone
and videoconferencing
27 22.7
Mobile app 21.7
Telemonitoring (remote
access to equipment)
21.7
Not reported 20 16.8
Who delivers care and how it
is managed
Frequency of
consultations
63 52.9
Self- management (shifting
or promoting the
responsibility for
health care to the
patient and/or their
family)
25 21.0
Role expansion
(expanding tasks
undertaken by a cadre
of health workers)
21.7
Where care is delivered
In person 27 22.7
Outreach work 54.2
Site of service 1 0.8
How and when
Triage 43.4
Coordination of different
care providers
0 0
Queuing strategy 21.7
Group vs individual 0 0
Coordination of care and
management of care
process
Integration 43.4
Shared care 10.8
Transition 0 0
Health outcome
Management of condition 40 33.6
Child physical hea lth
outcomes
22 18.5
Child behaviour outcomes 20 16.8
Child mental health
outcomes
65.0
Child well- being
outcomes
86.7
Diagnostic assessments 10 8.4
Outcomes
Total number of
papers coded
Percentage of
total papers
(n=119)
Parent well- being 18 15.1
Parent mental health 54.2
Experiential outcomes
Satisfaction 53 44.5
Feasibility 20 16.8
Equitability 97. 6
Records d iscuss multiple outcomes; a s such, single record s are not coded to
conditions and outcomes in a mutu ally exclusive manner.
TABL E 3 (C ontinued)
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of routine appointments in some settings. Elsewhere, it was
reported that in- person appointments or inpatient admis-
sions were only maintained for urgent or non- deferrable
cases.19,26,27
Telehealth
Thirty- one papers reported on telehealth for medically led
care. Fourteen of these described children and young peo-
ple accessing continued care for, or being assessed for, epi-
lepsy via telehealth during the pandemic. While one study
reported continued difficulties in accessing health care for
epilepsy treatment, describing a scarcity in telehealth,21
the implementation of telehealth largely enabled the re-
instatement of monitoring and treatment of children with
epilepsy.19,28 Telehealth was used for planned clinic appoint-
ments with a consultant, medical follow- ups, and to get pre-
scriptions or medications amended. Telehealth was also used
for joint appointments with a neurologist and dietician to
initiate ketogenic dietary therapy.19,29,3 0 Telephone consulta-
tions were supplemented with the family sending images or
videos. Three papers described using telehealth to diagnose
new referrals with suspected epilepsy.19,31,32 For new refer-
rals, it was recommended they came in for an EEG as soon as
in- person visits to hospital for non- urgent care were allowed,
or families attended a hospital for an EEG, but follow- up ap-
pointments were done remotely. An international survey
reported that 70.1% of surveyed clinicians had moved out-
patient appointments to telehealth but maintained in- person
appointments for urgent cases.19
Two papers reported on the use of telehealth for the med-
ical care of children and young people with CP.7,33 The fre-
quency of medical follow- up via telehealth ranged from 18%
to 50% of samples. Online consultations were used for ap-
pointments with paediatricians, orthopaedic surgeons, and
neurologists. One study reported that 48.5% of their sam-
ple were advised about surgery before the pandemic; 28.7%
could undergo surgery during the pandemic.33
The remaining papers described the use of, or frequency
of, telehealth appointments for consultations with medical
professionals for children with neuromuscular disease,34
ADHD,35, 36 and high- risk infant follow- up.37 One paper de-
scribed the use of a smartphone social media app to allow
parent carers of children with congenital heart disease to
access relevant information and contact a heart surgeon
during the pandemic.38 They reported that the app was use-
ful in monitoring a child's condition and managing parent
carer anxiety.
Three papers reported on medical services for children
with neurodevelopmental disabilities.17, 39 ,40 A study of ad-
olescents with special educational needs used linked edu-
cation, health, and social care data, which identified that a
greater proportion of adolescents with special educational
needs had outpatient appointments offered to them via
telehealth compared to their peers.39 One survey reported
that 30.9% of follow- up appointments for children with
neurodisability with a paediatrician were carried out via
telehealth.17
Two papers described successful remote telemonitoring
of children and young people's ventilation and continuous
EEG, reducing the need for children and young people to
travel into hospital or be admitted for monitoring.41,42 One
study reported that most high- risk infant follow- up clinics
moved to telehealth.37 Telehealth was suggested to improve
outreach and engagement with families, especially those that
lived further away from the clinic; however, many medical
professionals reported it was difficult to perform adequate
medical and developmental assessments in this clinical
group.
Several studies collected information on satisfaction with
telehealth appointments, finding that both parent carers and
health c are professionals had confidence i n the remote contact
and the clinical evaluations undertaken via telehealth.18,30, 43
Parent carers reported finding telehealth appointments help-
ful and effective and were supportive of video consultations
continuing beyond the pandemic,18,32,43,44 seeing benefits of
saving time and travel to the hospital and waiting rooms and
avoiding the challenges related to bringing their child to an
outpatient appointment.29,37,44,45
Some of the negative evaluations of telehealth from both
parent carers and health care professionals was the absence
of the physical examination32,37,44 (e.g. measures of weight
and height, evaluation of motor development) and some
found it less personal and hard to build rapport.46,47 In gen-
eral, access to and availability of technology was a challenge
in being able to deliver telehea lth. Where reported, telehealth
was seen as a feasible method of continuing monitoring and
care of children and young people during the pandemic in
medical care settings.28,42,48
Parent carer management
Five papers reported on parent carers taking more respon-
sibility for managing their child's medical care. Ketogenic
diet therapies were managed through remote delivery via
apps and by telephone. Parents reported very high levels of
satisfaction with online support.30,49 One paper described
offering an outreach advice service for congenital heart
diseases.38 Adherence to self- management was sustained
or increased when contact with health professionals could
be maintained.49 Studies indicated efficiencies where prac-
titioners were already accustomed to using remote support
and telehealth systems before the pandemic.30
Services led by allied health professionals
Frequency of consultations
Forty- seven papers refer to frequency of consultations with
AHPs. Severe disruption to AHP interventions was evident,
with many parents reporting interruption to occupational
892
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MERRICK et al.
therapy, speech and language therapy, physiotherapy, and
psychological therapy; some reported no therapy delivery
at all for children and young people with a long- term dis-
ability. One large study of children with ASD reported that
over three- quarters experienced moderate- to- severe dis-
ruptions in services delivered at schools and professional
clinics.50 Children and young people with neurological dis-
orders, primarily epilepsy and CP, reported that approxi-
mately half of their allied health appointments stopped or
were disrupted, particularly physiotherapy and occupa-
tional therapy.7,13,17,18,22,33 This disruption included access to
equipment services and specialist services such as orthotics,
impacting on children and young people's health and family
well- being.33, 51
Many papers reported negative health outcomes in chil-
dren where AHP services were disrupted or stopped. In one
study, over half of part icipants reported ‘some’ or ‘significa nt’
decline in their child's functioning in communication skills,
social skills, and behaviour due to changes in their child's
access to opportunities, settings, or equipment, with greater
impact for children with multiple diagnoses.52 Children
with CP were reported to show deterioration in their phys-
ical condition with reports of over half showing increased
spasticity, reduced range of joint motion, and ambulatory
change.22, 53 Reasons for deterioration included decreased
duration of orthosis and assistive device use, levels of ther-
apy, and indoor and outdoor activity participation.22,23,42,53
Concern about child growth and development without
specialist rehabilitation programmes was linked with the
mental health of caregivers; parents described increased
anxiety and st ress. A group of health care professionals in the
UK indicated that when services closed, parents of younger
children were worried about missed ‘early developmental
opportunities’ due to lack of targeted therapeutic support.51
This study also reported that many parents of teenagers con-
firmed that therapy input was no different during lockdown
because they did not usually have access to therapy. The in-
equity of access to existing services was of significant con-
cern to parents and clinicians.
Telehealth
Forty- nine papers described the frequency of use or deliv-
ery of telehealth appointments with AHPs. Most papers
reported on multiple allied health services or ‘therapy’ in
general (n = 28). The remaining papers were focused on
behaviour programmes (e.g. behaviour counselling, ap-
plied behavioural analysis therapy; n=9),54– 62 speech and
language therapy (n=4),63– 66 physiotherapy (n=3),53,67,68
mental health support (n=2),69,70 auditory- verbal therapy
for children and young people with a hearing impairment
(n=1),71 rehabilitative therapy for children and young peo-
ple with vision impairment (n=1),72 and early intervention
coaching (n=1).73
The percentages of families reporting attending a tele-
health appointment with an AHP tended to be lower (less
than 50% of study samples) than those reported for medical
care appointments (over 50% of study samples). This was ei-
ther because telehealth was not available or families chose
not to participate in or continue with telehealth appoint-
ments for allied health care.
Parent carer satisfaction with telehealth varied widely.
Overall, satisfaction was lower for appointments with AHPs
than described in medically led care. Higher parent carer
satisfaction was associated with the child's enthusiasm to
participate and greater flexibility of therapists to modify
activities to the child's needs and ability to maintain the
child's engagement in the session. Two papers compared
parent carer and health professional satisfaction with tele-
health; in both papers, parents reported greater satisfaction
than health care professionals in terms of effectiveness, con-
fidence, acceptability, and similarity to in- person appoint-
ments.72 ,74 However, overall parent carers reported being
less satisfied with telehealth services compared to usual in-
person services and reported it as not being inherently the
same as face- to- face therapy.
Telehealth delivered by AHPs more often required the
presence of the child online alongside, or supported by, the
parent carer compared to medical appointments, where con-
sultations were often with parent carers only. Parent carer
dissatisfaction with telehealth was reported to be due to the
child's inadequate attention span, sitting tolerance, inability
to understand instructions, and poorer interaction with the
therapist. However, for others, the use of telehealth was re-
ported to have increased parent carer collaboration with the
AHPs because the parent carer needed to have more involve-
ment and training in their child's therapy activities during
lockdown. As with most telehealth services, technical issues
emerged, such as lack of connectivity and difficulties in lis-
tening or watching the professional during the visit.
Where tailored allied telehealth interventions were es-
tablished during the pandemic, parent carers reported more
positive outcomes in their child's development, particularly
for younger children.48,68,75 These tailored programmes and
other outreach programmes delivered online allowed par-
ent carers to access therapy input and carry out therapies
in the home environment but appeared to be more relevant
to continuing skills rather than improving outcomes.49,53
A virtual reality rehabilitation system home kit was found
to be feasible for providing rehabilitation for an adolescent
with a motor disorder; however, it required sufficient space
in the home and for the family to understand how to use the
system.67
Three papers reporting on telehealth for behavioural in-
terventions described development of specific services to
support parent carers and children and young people during
the pandemic.56,59,76 Each programme was delivered using
telehealth specifically to provide support for children and
young people with maladaptive behaviours, aggression, and
outbursts that were directly related to the pandemic and
home confinement. The services provided advice to families
and direct work with the children and young people via be-
havioural therapists. Parent carers indicated they would be
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IMPACTS OF HE ALTH CARE SERV ICE CHANGES I MPLEMENTED DUE TO COVID- 19 ON
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willing to engage in telehealth support for behaviours that
challenged if it was available to them.57 However, a large ma-
jority of parent carers reported that behavioural telehealth
had not been offered to them in any form during lockdown.
Very few studies have been able to evaluate the direct im-
pacts of moving to telehealth on children and young peo-
ple's health outcomes. Social and language outcomes were
reported as deteriorating, and autistic restrictive, repeti-
tive, and stereotyped behaviours were reported as increas-
ing.77– 79 Clear correlation with deterioration in behaviour
and change in services was not established in most studies;
multiple factors such as loss of medical and therapeutic ser-
vices, changes to routine, and other restrictions were cited as
influencing factors. However, one study reporting on a large
survey of caregivers of children and young people with ASD
concluded that children who were younger, from low- income
families, and with greater impairment severity (more severe
repetitive behaviours, language, cognitive, function, and
motor impairments) were more negatively impacted by the
pandemic through service disruptions.50
Concerns about chi ld development without proper service
support or access to specialist therapeutic services emerged
as the highest source of psychological distress for families of
children and young people with ASD.50,80 One study noted
that parents who reported regression in their child's skills
due to service loss, felt a helplessness when trying to pro-
vide intervention to their children with ASD and learning
di sabi lity.81 The study recommended involving parents of
children with disabilities in therapy so that they gained the
skills to maintain therapy in a future crisis.
Parent carer management
Fourteen papers described a shift to therapies or interven-
tions being delivered by parents. Parent carers of children
with physical disabilities reported that they performed be-
tween 62% and 83% of therapies for children and young peo-
ple, covering physiotherapy, occupational therapy, speech
and language therapy, psychomotor therapy, and orthoptist
sessions.7 Parent carer management of CP resulted in dif-
fering levels of programme compliance. Parents reported
trying to adhere to therapeutic intervention programmes
sustaining moderate levels of therapeutic intervention, while
others reported that they were unable to continue thera-
pies at home due to lack of knowledge and lack of access to
equipment.33,51,82
Three papers described setting up outreach services
through online resources for families of children with be-
havioural support needs to access, during the pandemic,
advice on therapies and advice specifically related to
COVID- 19.62,78,83 A development and behavioural paedi-
atric service also described identifying vulnerable families
of children and young people with ASD and initiating an
outreach programme with targeted phone calls to support
these families while services were closed or only able to
offer limited in- person appointments.62 Where behavioural
interventions were established before lockdown, parent car-
ers were more able to continue these programmes.
Parents reported difficulties with increased emotional
load, anxiety, stress, and depressive symptoms. Parent car-
ers expressed a need for help and assistance from people,
psychological support, and/or recommendations to support
their child's learning, and manage their child's condition.7,8 4
Education, social care/welfare, and third
sector organizations
Less evidence was found on changes to education, social
care/welfare settings, and third sector organizations than
medical and allied health care (Table2).
Frequency of consultations
Parent carers described the difficulties in managing their
child's health, therapeutic, and specialist educational needs
when services were disrupted, reduced, or stopped.85 Loss of
respite services and school closure left many families strug-
gling to cope with children's emotions and behaviours.51,86,87
Papers reported increased stress, anxiety, and depressive
symptoms in parents trying to deliver home care and man-
age the additional challenges of home working and home
schooling without respite services.83,88,89 School closures
resulted in significant disruption, with reduced or no at-
tendance for many. Services working through schools were
substantially disrupted. The vast majority of children and
young people lost specialist therapeutic services delivered
through school and 44% of parent carers reported a lack of
equity of access to school support and online learning be-
cause it was not adapted to the needs of children and young
people with disabilities.90,91
Parent carers reported closure or severely reduced ac-
cess to respite services which had been in place before lock-
down,57,7 9, 9 2 which along with closures of outside activities
or school impacted their own mental health and coping
strategies.51 An online survey of children with special edu-
cational needs reported poorer mental health than typically
developing children and increases in distressed behaviours
alongside increases in maltreatment, including physical as-
sault and aggression compared to pre- COVID- 19.93
Several papers described the parent carer strain of man-
aging their children and young people's behavioural needs
with loss or disruption to resources such as respite care,
school, social care, and their support networks. Parent car-
ers reported the reappearance of behaviours that challenged
what, previously, had been well managed.94 A survey of par-
ent carers found that, compared to before the pandemic,
behavioural problems were reported as being more intense
and more frequent in a substantial proportion of individuals
with ASD.77 Parents felt unable to meet their children and
young people's needs or access support and held worries over
the long- term impact on their child.6,94 Nevertheless, some
894
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MERRICK et al.
families cited the reduced demands on their child as having
a positive impact on their child's well- being, often describ-
ing reduced anxiety.6,95 Parent carers also reported that chil-
dren's communication skills had improved.6,53
Telehealth and parent carer management
The number of papers describing or evaluating telehealth
in education and social care/welfare settings was much
lower compared to medical care and AHP services. Schools
responded by developing outreach support to meet fam-
ily needs beyond core educational delivery. Two studies
reported special education teachers' provision of support
to families of children with special educational needs.83,89
Emotional support was seen as central to enabling families
to manage behaviours that challenge. Teachers provided
online resources, coaching, and activities to the families to
address their specific needs.83,89 One paper reported the re-
sponse of an ASD day care service to support families, where
shared care had been impacted by in- person closure.75 The
service provided group and individual online training and
support daily; parent carers were given guidance on struc-
tured teaching, behavioural approaches, and environmental
adaptations to accommodate the child's communication and
sensory needs.
Parents widely reported receiving little or no support with
children's specialized learning and behavioural needs.89,96
Teachers reported barriers to implementing interventions
for behaviours that challenge in the home because it was dif-
ficult for parents to understand the function of their child's
challenging behaviour, identifying the need for more inte-
grated working between school and family.83 UK research
indicated that access to support for families strongly im-
pacted their overall experience, yet many parent carers re-
ported that they needed to reach out to access support rather
than a system- driven approach to provide support.94
DISCUSSION
This mapping rev iew of research published between Janua ry
2020 and January 2022 indicates that there was a sudden
and extensive suspension of services, including those sup-
porting children and young people with disability. This led
to a shift to, and increased use of, telehealth, particularly
videoconferencing, across services for children with dis-
ability. The use of telehealth for consultations and contin-
ued care was mostly described as successful in medically
led services, with parent carers and professionals reporting
high satisfaction and engagement with telehealth appoint-
ments. The use of telehealth for allied health provision was
lower than in medical care settings and faced greater chal-
lenges in being able to deliver an equivalent level of service
to in- person therapies. For many, telehealth was described
as being beneficial in providing some level of continuity of
care to children and young people while restrictions were
in place. While some parent carers and professionals saw
a place for telehealth appointments in the future, postpan-
demic, both groups reported wanting to return to in- person
appointments, highlighting that telehealth did not enable
access to health care for all children and young people. In
particular, some diagnostic assessments of new referrals
did not work as well via telehealth and many described not
reaching therapy goals through telehealth. We found lim-
ited research describing the changes made in education, so-
cial care, and voluntary sector settings, although changes
were made.
A small proportion of papers reported on the specific im-
pact of service disruption on health outcomes for children
and young people. Parent carers and professionals reported
that the impacts of stopping or interrupting care included:
reduced access to medications for seizure control; declines
in children's mobility; increases in pain; and declines in chil-
dren's communication skills, social skills, and behaviour.
There was some evidence that age, number of diagnoses,
severity of condition, and living conditions were factors in
how service disruption impacted on children and young
people's outcomes. There were also the wider impacts of the
societal measures implemented during the pandemic with
stay- at- home measures, reduced play and social interaction
opportunities, and access to support networks impacting on
the outcomes for children and young people with long- term
disabilities.
Gaps in the evidence for service change
Mental health support
Many papers reported on t he impact of the pandemic on chil-
dren and adolescents' mental health and changes in access to
emergency mental health services during the pandemic.97– 99
However, most of these papers were excluded from this re-
view due to not reporting data specific to children with long-
term disabilities. Research should evaluate the mental health
impacts of the pandemic on children and young people with
long- term disabilities and how and whether mental health
services can respond effectively to their specific needs, es-
pecially since generic interventions may be less accessible to
young people with disabilities.
Social care, welfare support, and short
break services
A report in the UK on the impact of the COVID- 19 pan-
demic on the education, health, and social care provision
for children with special educational needs and disabilities
highlighted the impact of the loss of short break services
on children and young people, parent carers, and the wider
family during the pandemic.100 However, we found limited
published peer- reviewed literature on successful models
of adapting social care and welfare provision for children
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IMPACTS OF HE ALTH CARE SERV ICE CHANGES I MPLEMENTED DUE TO COVID- 19 ON
CHILDREN A ND YOUNG PEOPLE WITH LONG- T ERM DISABIL ITY: A MAPPING R EVIEW
and young people with disability. The international litera-
ture highlighted the detrimental impacts of loss of welfare
and social support on family's mental health and well- being
during the pandemic.79,92 There is a need to identify mod-
els of working in these settings that worked well during the
pandemic.
Transitions during the pandemic
None of the papers identified in this review discussed how
transitions from child to adult health services, and/or school
transitions (starting and leaving school or changing schools),
were managed during the pandemic, nor the effect of service
changes, such as moving to telehealth or a drop in frequency
of appointments on the management of transitions. Existing
research already demonstrated how challenging transitions
from child to adult health care services can be for disabled
young people.101,102
Child and young person self- reported outcomes
There is a relative paucity in the reporting of children and
young people's own experiences of changes to services dur-
ing the pandemic. Only five studies reported from this per-
spective, w ith two studies not dif ferentiating the parent carer
and children and young people perspectives in the results.
While the views of parent carers and professional perspec-
tives are essential, young people's own views are critical so
that interventions are acceptable and fully address the chal-
lenges experienced by disabled young people. While several
of the papers identified in this review reported both qualita-
tive and quantitative impacts of the pandemic and service
disruption, further work is needed to understand the impact
on health outcomes for children and young people and par-
ent carers.
Children and young people awaiting diagnosis or
newly diagnosed
Within the research identified, there was some discussion of
how services approached new referrals, particularly in epi-
lepsy services. The experience of receiving a diagnosis dur-
ing the pandemic and how families were supported after the
diagnosis is not elucidated. Likewise, the consequences of
longer waiting times for assessment arising in the pandemic
is yet to be explored.
The impact of the pandemic on infant and young chil-
dren's development has been well documented.103– 105
Consequences could be exponentially greater for children
with additional needs, especially if parents have little expo-
sure to other infants. It is vital to understand the impact of
delayed access to early years assessments to inform future
services and plan for the potentially long- term health and
developmental impacts in this population.
School closures and access to therapies
There is little peer- reviewed evidence of the impact of school
closures on access to services including AHP, behavioural
support, and adapted and specialist curriculum/learning
support delivery (which is frequently the vehicle for therapy
delivery). However, this loss of the wider school services was
reported by our young people advisory groups as highly sig-
nificant. The advisors also referred to the less formal devel-
opmental opportunities accessed through schools such as
social interaction and social skill development, preparing
for adulthood and transition, and the importance of school
as a source of routine. They suggested that the developmen-
tal and mental health implications of losing these services
and networks will impact their health and well- being into
the future.
Inequality of access and impact
Our parent carer and young people's advisory groups raised
in discussion the importance of acknowledging the existing
inequalities in access to services and resources, in particu-
lar access to information technology and Internet resources
to engage in telehealth. The reported increased use of tel-
ehealth in this review indicates the need to address digital
poverty and equal access to technology and resources across
services and conditions. This inequality in impact indicates
a need for the identification of targeted ‘catch up’ and recov-
ery for children and young people with disability. There is
a pressing need to understand how services are recovering
from the changes made and responding to increased wait-
lists and demands for services and support.
Limitations
The studies included in our mapping review represent those
identified using our predefined search terms, which focused
on children and young people with neurodevelopmental
types of long- term disabilities (as exemplars of conditions
requiring multidisciplinary input) and service change. The
review was focused on peer- reviewed published papers; how-
ever, there is a non- academic publication relating to service
change for children and young people with disability that
would have not met the criteria for inclusion in our review.
The focus on the experiences and outcomes for children with
long- term disability meant that many papers had to be ex-
cluded due to not segregating findings by the clinical groups
of relevance for the review. Since we conducted a mapping
review over a rapid time frame, we did not conduct formal
quality assessment of studies.
It is possible that gaps identified in the changes to so-
cial care and welfare services and educational settings are
reported more widely in grey literature rather than peer-
reviewed journals. Most of the studies identified in this re-
view reported on changes and outcomes from earlier periods
896
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MERRICK et al.
of the pandemic. The 27 new studies identified in our sec-
ond search in January 2022 indicates how evidence in this
area is growing. However, it is important to note that despite
the increased number of published papers between October
2021 and January 2022, the types of research and outcomes
reported did not change substantially.
Conclusion
While all children and young people have felt the impact
of COVID- 19, the increased reliance on health, social care,
and educational services for children and young people with
long- term disabilities has resulted in a disproportionate im-
pact on this population. The widespread withdrawal and dis-
ruption to many of these services has had a profound impact
on the health and well- being of children and parent carers.
In particular, the loss of access to educational settings and
short breaks impacted parent carer health and well- being.
Future planning for emergencies needs to involve families to
understand what access to services and support is needed in
times of emergency.
In response to the stopping of in- person provision of care,
the adoption of telehealth increased across services and set-
tings. While this change provided continuity of some care and
some management of conditions, the adoption of telehealth
did not enable access to health care for all children and young
people and was especially challenging for allied health- led ser-
vices. Further research and evaluation of telehealth is needed
to understand what does and does not work in the provision
of high- quality care to disabled children via telehealth in the
recovery of services and for future emergency planning. This
review exposes the minimal engagement of children and
young people in research about ‘reset’ services that provide
care and support to them indicating a need for their greater
inclusion in service codesign and future research.
The longer- term impacts of the changes in services are
still to be seen and evaluated fully. Service recovery needs
to be differentiated to address the specific needs of children
and young people with disability, which should be done
through coproduction with families to ensure that changes
are meeting needs and are accessible and equitable so that
health disparities are not exacerbated. This mapping review
is part of a broader methodology including qualitative inter-
views with professionals and parent carers in England and a
Delphi study designed to provide substantive recommenda-
tions for services to disabled children in times of emergency
(https://fundi ngawa rds.nihr.ac.uk/award/ NIHR2 02478).
ACKNOWLEDGMENTS
This study was funded by the National Institute for Health
and Care Research (NIHR) Policy Research Programme (no.
NIHR202478). The views expressed are those of the author(s)
and not necessarily those of the NIHR or the Department of
Health and Social Care.
Resett ing Services Team: Professor Cat h Exley, Population
Health Sciences Institute, Newcastle University, UK;
Professor Dawn Teare, Population Health Sciences Institute
(Biostatistics Research Group), Newcastle University, UK;
Dr Ge Yu, Population Health Sciences Institute (Biostatistics
Research Group), Newcastle University, UK; Dr Sara
Carr, Cumbria, Northumberland, Tyne and Wear NHS
Foundation Trust, Newcastle upon Tyne, UK; Dr Shona
Haining, North of England Commissioning Support Unit,
UK; Lesley Platts, Whittington Health NHS Trust, UK; Dr
Laura Gray, Educational Psychology Service, South Tyneside
Council, UK; Dr Philip Heslop, Social Work, Education and
Community Wellbeing, Northumbria University, UK.
DATA AVAILABILITY STATEM ENT
The data that supports the findings of this study are avail-
able in the supplementary material of this article.
ORCID
Hannah Merrick https://orcid.org/0000-0003-2714-0129
Christopher Morris https://orcid.org/0000-0002-9916-507X
Lindsay Pennington https://orcid.org/0000-0002-4540-2586
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SUPPORTING INFORMATION
The following additional material may be found online:
Table S1: List of excluded papers.
Figure S1: PRISMA f low diagram.
Appendix S1: Databases and Journals covered by WHO
Covid database.
Appendix S2: Full search terms used.
How to cite this article: Merrick H, Driver H, Main
C, Kenny RPW, Richmond C, Allard A, et al. the
Resetting Services Team. Impacts of health care
service changes implemented due to COVID-19 on
children and young people with long-term disability:
A mapping review. Dev Med Child Neurol.
2023;65:885– 899. https://doi.org/10.1111/dmcn.15503
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