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RESEARCH ARTICLE
Informing the development of the Canadian Neurodiversity
Platform: What is important to parents of children with
neurodevelopmental disabilities?
Miriam Gonzalez
1,2
| Shikha Saxena
3
| Farhin Chowdhury
4
|
Sasha Dyck Holzinger
2
| Rachel Martens
5,6
| Maryam Oskoui
1,2,7
|
Keiko Shikako-Thomas
2,8,9
1
Department of Neurology and Neurosurgery,
McGill University, Montréal, Quebec, Canada
2
Research Institute of the McGill University
Health Centre, McGill University, Montréal,
Quebec, Canada
3
School of Human Kinetics, University of
Ottawa, Ottawa, Ontario, Canada
4
Department of Educational and Counselling
Psychology, Faculty of Education, McGill
University, Montréal, Canada
5
CHILD BRIGHT Network, Montreal, Quebec,
Canada
6
Kids Brain Health Network, Surrey, British
Columbia, Canada
7
Department of Pediatrics, McGill University,
Montréal, Quebec, Canada
8
School of Physical and Occupational Therapy,
McGill University, Montréal, Quebec, Canada
9
Canada Research Chair in Childhood
Disabilities: Participation and Knowledge
Translation, McGill University, Montréal,
Quebec, Canada
Correspondence
Miriam Gonzalez, Department of Neurology
and Neurosurgery, McGill University, 3775
Rue University, Montréal, QC H3A 2B4,
Canada.
Email: miriam.gonzalez@mail.mcgill.ca
Funding information
Centre for Interdisciplinary Research in
Rehabilitation of Greater Montreal; Research
Institute of the McGill University Health
Centre; CHILD-BRIGHT Strategic Patient
Oriented Network Knowledge Translation
Program; Kids Brain Health Network of
Centres of Excellence
Abstract
Background: A crowd-sourced Canadian platform that collects information across
neurodevelopmental disabilities (NDDs) can (1) facilitate knowledge mobilization;
(2) provide epidemiological data that can benefit knowledge, treatment, and advo-
cacy; and (3) inform policy and resource allocation decisions. We obtained input from
parents of children with NDDs about relevance and feasibility of questionnaire items
as a first step to inform questionnaire development of a stakeholder-driven, national
platform for data collection on children with NDDs.
Methods: A parent of a teenager with NDDs was a research partner on the project.
Through four focus groups and using a guided discussion consensus process, 16 par-
ticipants provided feedback on whether questionnaire items from existing instru-
ments related to function and disability were feasible for parents to complete and
important to include in the platform. Data were analysed using content analysis.
Results: Participants (1) indicated that questions about medical history, general
health, body functioning, self-care, access to resources, and outcomes (e.g., quality of
life) are important to include in the platform and are feasible for self-completion;
(2) provided various suggestions for the questionnaire ranging from additional items
to include, using non-medical language, and keeping completion time from 20 to
30 min; (3) identified incentives and knowing the purpose of the platform as strong
motivators to platform participation; (4) spoke about the challenges of their caregiver
experience including impact of caregiving on themselves and barriers to accessing
services; and (5) highlighted the isolation experienced by their children.
Conclusion: Through the focus groups, parent stakeholders contributed to question-
naire development and shared their caregiver experiences. Obtaining feedback from
youths with NDDs and healthcare providers on the questionnaire is a next step to
validating findings. Stakeholder engagement is fundamental to developing a platform
that will inform research that is relevant to the needs of children with NDDs and
their families.
Received: 3 December 2020 Revised: 4 June 2021 Accepted: 4 August 2021
DOI: 10.1111/cch.12906
Child Care Health Dev. 2021;1–11. wileyonlinelibrary.com/journal/cch © 2021 John Wiley & Sons Ltd. 1
KEYWORDS
autism, cerebral palsy, data platform, neurodevelopmental disabilities, stakeholder
engagement
1|INTRODUCTION
Neurodevelopmental disabilities (NDDs) are a group of congenital or
acquired long-term conditions resulting from impairment of the brain
and/or neuromuscular system that create functional limitations
(Morris et al., 2013). These disabilities are often identified in practice
and policy based on the presence and severity of activity and func-
tional limitations (Anderson et al., 2019). Autism spectrum disorder
(ASD) and cerebral palsy (CP) are common neurodevelopmental condi-
tions affecting Canadian children with a global prevalence of 2–2.5 in
1000 children for CP (Oskoui et al., 2013) and 1 in 66 for autism
(Ofner et al., 2018). Owing to medical and surgical advances, the epi-
demiology of NDDs has been reported to be continually changing
(McIntyre, 2018). Thus, to inform health services policy, research, and
practice, accurate population surveillance and monitoring is needed
(McIntyre, 2018).
Families of children with NDDs face significant challenges when
accessing health services (Larivière-Bastien & Racine, 2011). These
include inequalities to access of basic routine services (Doostan &
Wilkes, 1999), negative attitudes such as stereotypes about the
affected child that disregard their autonomy (Larivière-Bastien &
Racine, 2011), parental stress (Raina et al., 2005) and multiple and
prolonged hospitalizations (Dosa et al., 2001). Various initiatives
targeting health system changes have underscored the prioritization
of measuring key outcomes as identified by families (Berwick
et al., 2008). Measurement of outcomes has traditionally been done
by researchers and clinical experts. However, recent research has
engaged families in prioritizing key health-related research outcomes
(Chien et al., 2015). Engaging families in this process is very important
given: (1) the nature of NDDs and caregivers' essential roles in pro-
moting their children's health, (2) caregivers can identify outcomes
that are most relevant to their families and are more likely to partici-
pate in research that addresses relevant priorities and (3) caregivers
have the right to participate and be involved in matters that concern
them (Morris et al., 2011).
The Canadian Cerebral Palsy Registry (CCPR), a national database
of medical and social information about children with CP, has
supported CP research and epidemiology in Canada (Oskoui
et al., 2017). The heterogeneity of CP, however, makes it difficult to
consider it separately from other frequently accompanying impair-
ments and activity limitations, such as visuo-perceptual problems,
intellectual delays, learning difficulties and epilepsy (Mutch
et al., 1992). Given the overlap seen in the clinical spectrum across
NDDs (Moreno De Luca et al., 2013), recent epidemiological studies
have used an approach that unites outcome measures and risk indica-
tors across disabilities (Havercamp et al., 2019). The present structure
of the CCPR does not allow for data sharing or knowledge
mobilization across disabilities. It is crucial to develop an integrative
Canadian platform that collects information uniformly across NDDs as
this will (1) provide strong epidemiological data that will benefit
knowledge, treatment, and advocacy; (2) provide a platform for
population-based research that will facilitate comparison and analyses
across NDDs; (3) allow for linkage to administrative health databases
and facilitate analyses to inform policy and resource allocation; and
(4) remove silos and create synergies among researchers and stake-
holders. The integrative Canadian Neurodiversity Platform (iCAN) will
build from the CCPR. The purpose of this qualitative study was to
obtain input from parents to inform the development of the question-
naire for the national platform and thus ensure iCAN is stakeholder-
driven and can inform research that is relevant to the needs of fami-
lies with NDDs.
2|METHODS
2.1 |Framework and design
A patient-oriented research approach with a descriptive qualitative
design was used. A parent of a teenager with NDDs was a research
partner on the project. Canada's Strategy for Patient-Oriented
Research (SPOR) Framework was used as a roadmap for active collab-
oration (Canadian Institutes of Health Research, 2014).
Key messages
•A national platform that drives research that is important
to the needs of families of children with neu-
rodevelopmental conditions is achievable with stake-
holder engagement.
•Parents of neurodiverse children consider that question-
naire items on ICF domains are relevant. However, their
caregiver experiences (e.g., heightened stress) not cap-
tured in the proposed questionnaire were also perceived
as important and worthy of inclusion in the platform.
•Working collaboratively with stakeholders is key to
ensuring we ask questions that are relevant and that can
be transformed into outputs that inform policy and pro-
gramme development at different levels.
•Strategies for meaningful engagement and evaluation of
engagement are lacking.
2GONZALEZ ET AL.
2.2 |Sample
2.2.1 | Inclusion criteria
English and French speaking parents of children (any age) with NDD
were eligible to participate.
2.2.2 | Recruitment and sampling procedure
Various recruitment strategies were used including (1) parents
attending an annual, national meeting of a patient-oriented research
network on childhood disabilities were invited to participate,
(2) study flyers were posted at a clinic of a children's hospital in
Montréal and (3) a database of parents who had consented to
participate in future research was used. Potential participants were
screened for inclusion criteria and those who were eligible were
informed about the study and sent a consent form via email. Details
about the focus groups were shared via email or phone as per
participants' preference.
2.3 |Procedures
2.3.1 | Focus group questionnaire
The questionnaire used during the focus groups consisted of a list of
questions from existing instruments related to function and disability:
the Integrative Canadian Neurodiversity Platform Cerebral Palsy
(iCAN CP) questionnaire, the Washington Group Short Set of
Questions on Disability (WAS), the Caregiver Priorities and Child
Health Index of Life questionnaire (CPCHILD), the CP Canada
Network Survey and the 2019 Canadian Health Survey on Children
and Youth (CHSCY). We chose items from the CHSCY and WAS
questionnaires as they are applicable to all disabilities. We included
items from the iCAN CP, CPCHILD and CP Canada Network survey
to assess applicability of items to other disabilities from parents'
perspectives.
The iCAN CP questionnaire is based on the variables in the CCPR
(e.g., perinatal history and treatments), which were determined by a
Delphi process in the early 2000s for the Québec CP Registry (Shevell
et al., 2009). The WAS consists of questions based on the World
Health Organization's International Classification of Functioning, Dis-
ability, and Health (ICF) and collects information on difficulties a per-
son may have in undertaking basic functioning activities (mobility,
communication, cognition, vision, hearing and self-care). The WAS is
useful for reporting data by disability type and is supported by the
United Nations as a valid tool for monitoring and reporting processes
(Groce & Mont, 2017).
The CPCHILD questionnaire consists of questions that measure
caregivers' perspectives on the well-being, health and quality of life
of children with CP (Narayanan et al., 2006). The CP Canada Net-
work survey collects data on service utilization, costs, and needs of
children and adults with CP in Canada (Shikako-Thomas
et al., 2020). Finally, the 2019 CHSCY collects information about
the physical and mental health of children and youth (1–17 years)
and has questions specific to disability in the context of health and
developmental outcomes (Statistics Canada, 2019). A total of
130 questions were selected from these questionnaires and orga-
nized according to World Health Organization (WHO)'s ICF (World
Health Organization, 2001) domains by a team member. Selected
questions were then verified by another team member and
reviewed for clarity by our parent–partner.
2.3.2 | Focus groups
Prior to the focus groups, parents signed a consent form and
completed a brief demographic form. A total of four focus groups
were conducted between the fall of 2018 and fall 2019 with
English and French speaking parents. Elements of informed consent
and ground rules were reviewed at the beginning of each focus
group.
Focus group facilitators used a focus group guide to ensure con-
sistency and followed a Modified Nominal Group Technique (MNGT)
to achieve consensus on questions that should be included in the plat-
form (McMillan et al., 2016). Participants were first given the ques-
tionnaire with the 130 questions to be included in the platform and
were asked to rate the questions in terms of importance (whether
important to include in the platform Yes/No) and feasibility (feasibility
for self-completion Yes/No). The facilitator then guided the discussion
by going through questionnaire domains and related questions and
encouraging parents to share their comments. Through the discussion,
participants were asked to clarify their points and differences of
opinion regarding questions of interest were discussed until
agreement (majority consensus) was reached. Participants were then
asked for any additional feedback they wanted to share and were
thanked for their participation. Two research assistants took field
notes. The focus groups were conducted in the evening and
lasted between 2 and 2.5 h. Participants received a gift card ($20)
for participating and were reimbursed for related expenses
(e.g., parking).
2.3.3 | Analysis
Audio-recordings of the focus groups were transcribed verbatim and
checked for accuracy. Focus group data and field notes were analysed
using content analysis techniques (Manning & Cullum-Swan, 1995).
The initial coding scheme consisted of domains used to organize ques-
tionnaire items and were used as predetermined codes. Three team
members met to discuss the initial coding scheme, code sections of a
transcript and revise the coding scheme. All data were then coded
line-by-line by one team member, reviewed for congruence of coding
by a second team member and discrepancies were resolved through
discussion. Measures used to further enhance methodological rigour
GONZALEZ ET AL.3
TABLE 1 Sample characteristics
Parent characteristics n%
Gender (n=16)
Female 14 87.50
Male 2 12.50
Missing data 0 0.00
Total 16 100.00
Age (n=14)
23–27 1 6.25
38+13 81.25
Missing data 2 12.50
Total 16 100.00
Condition your child has been diagnosed with (n=16)
Cerebral palsy (CP) 8 50.00
Multiple diagnoses (including CP and
ASD)
4 25.00
Autism spectrum disorder 2 12.50
Cerebral anoxia 1 6.25
Foetal alcohol spectrum disorder 1 6.25
Missing data 0 0.00
Total 16 100.00
Ethno-racial background (n=16)
White 12 75.00
Arab/west Asian (e.g., Armenian,
Egyptian, Iranian, Lebanese and
Moroccan)
2 12.50
South Asian (e.g., east Indian, Pakistani,
Punjabi, and Sri Lankan)
1 6.25
More than one ethnicity: (e.g., Black
and south Asian)
1 6.25
Missing data 0 0.00
Total 16 100.00
Education (n=15)
Completed high school 2 12.50
Completed community college 2 12.50
Completed technical school 2 12.50
Completed bachelor's degree (arts,
science, etc.)
3 18.80
Completed post graduate training or
professional or graduate degree
6 37.50
Missing data 1 6.25
Total 16 100.00
What is your current work status? (n=13)
Working for pay full time (including on
strike & any form of leave)
5 31.25
Working for pay part time (including
retired part-time and homemaker
part-time)
5 31.25
Not in labour force, able to work 1 6.25
Student (includes students working
part-time)
1 6.25
4GONZALEZ ET AL.
and validate findings included prolonged engagement with the data,
line-by-line analysis, keeping an audit trail, and discussions among
team members during the analysis and interpretation phases. A
deductive approach was used to analyse focus group data, whereas
an inductive process was used to identify additional categories as they
emerged. Demographic data were explored through descriptive analy-
sis using SPSS Statistics 24.0 (IMB Corp, 2016). Quotes from Franco-
phone participants were back translated, and the English version of
the quotes is used in this manuscript.
2.4 |Parent–partner involvement
To improve the quality of the patient engagement evidence base,
involvement of our parent–partner is reported following the Guid-
ance for Reporting Involvement of Patients and the Public or
GRIPP2 (Staniszewska et al., 2017). The GRIPP2 is the first checklist
developed to improve reporting of patient and public involvement
in health and social research. Our parent–partner was recruited
through the CHILD-BRIGHT patient-oriented research network
(http://www.child-bright.ca). We worked collaboratively throughout
the project and used the engagement strategies listed in the
Supporting Information.
3|RESULTS
3.1 |Participants
A total of 16 parents participated in the focus groups (Table 1).
Fourteen of the 16 participants were female, 38 years of age or older
and identified as White or Caucasian. Participants came from three
Canadian provinces, and half were parents of children with CP
(50.0%). Approximately 25.1% reported having a household income of
$40,000 or less.
3.2 |Feasibility and importance of questions
Questions about medical history, general health, body functioning,
self-care, access to resources and outcomes (e.g., quality of life) were
rated as important and feasible by over half of participants
(Supporting Information). Questions rated as least important included
child handedness (rated as important by 37.5% of parents), types of
devices used to access information (rated as important by 50.0%) and
costs incurred for therapy and recreation services (rated as important
by 56.3%). Only 44% of parents indicated that providing information
related to body structures (e.g., head circumference at birth) was
TABLE 1 (Continued)
Parent characteristics n%
Homemaker 1 6.25
Missing data 3 18.75
Total 16 100.0
Household income (n=11)
Less than $20,000 3 18.75
Between $20,000 and $40,000 1 6.25
Between $40,000 and $60,000 3 18.75
Between $60,000 and $80,000 1 6.25
More than $80,000 3 18.75
Missing data 5 31.25
Total 16 100.0
Province participant resides in (n=16)
Alberta 1 6.25
Ontario 5 31.25
Quebec (anglophone) 5 31.25
Quebec (francophone) 5 31.25
Missing data 0 0.0
Total 16 100.0
Please indicate your preferred language (n=13)
English 8 50.00
French 5 31.25
Missing data 3 18.75
Total 16 100.0
GONZALEZ ET AL.5
feasible for self-completion. Parents believed they would not have
this information at hand while self-completing a questionnaire. Simi-
larly, providing information about costs incurred for therapy and rec-
reation services (e.g., speech and language services) was seen as
feasible for self-completion by 50% of parents.
3.3 |Recommendations for the platform
Participants' discussions were grouped into the following categories:
recommendations for the platform (overall recommendations, specific
recommendations and additional questions) and parents' caregiving
experiences. Although documenting caregiver experiences was not an
original study objective, our parent–partner underscored the impor-
tance of reporting this information.
3.3.1 | Overall recommendations
Participants provided feedback on the overall structure and content
of the questionnaire (Table 2). Recommendations included (1) making
the objectives of the questionnaire and data usage plans explicit,
(2) using simple (non-medical) language and (3) keeping questionnaire
completion time to 20–30 min. When asked what would motivate
them to participate in a national platform, knowing the purpose of the
platform and using incentives were the top two answers provided
(Figure 1).
3.4 |Specific recommendations and additional
questions to include
Recommendations proposed by parents are organized by question-
naire domains (Table 3). Recommendations included (1) making ques-
tions that are more inclusive of multiple family configurations such as
parents from different ethnic backgrounds and adoptive parents,
(2) including questions about hospital visits and medications and
(3) expanding the concept of general health to include physical
and psychological health. Additional questions parents thought should
be included are also listed in Table 4.
3.5 |Results of stakeholder involvement
Working with our parent–partner during all project phases resulted in
(1) improved readability of study forms, (2) access to a network of par-
ents some of whom decided to participate, (3) providing context to
help us interpret comments provided by some parent participants,
(4) providing feedback on engagement strategies, (5) co-authoring this
manuscript and (6) deciding to report findings regarding parents' care-
giving experiences. These findings were an unanticipated outcome of
this study and provide context for the additional questions parents
suggested should be added to the platform.
3.6 |Parents' caregiving experience
Parents discussed various aspects of their caregiving experience that
they perceived as not being captured by the proposed list of ques-
tions. The four areas identified in parents' discourses were (1) impact
of caregiving on the caregivers themselves, (2) lack of information and
services, (3) barriers to accessing services and (4) children's experi-
ences as perceived by parents.
3.6.1 | Impact of caregiving on parents
Parents expressed experiencing worry and stress, particularly
about the child's future. Parents also noted that dealing with a
disability was time-consuming and that this had an impact on work
and the time they had for activities not associated with caring for
their child.
Of course, it has an impact on the work. His father is
working part-time. Now, he's moving slowly to work
100% from home. (Parent)
3.6.2 | Lack of information and services
Parents also shared that there is a lack of services in certain regions of
Canada as well as a lack of adapted, summer activities. They also
TABLE 2 General recommendations for the national platform
Questionnaire administration
•Provide options: in-person versus online (e.g., in-person allows for
discussion vs. online is convenient but makes it easier to opt
out/refuse to answer questions)
•To recruit parents: ask providers when family may be ready to
participate
Questionnaire structure
•Obtain consent (e.g., reassure respondents of confidentiality)
•Provide preamble with clear objectives (e.g., why collecting
information? Who respondent is answering for: child or
him/herself?)
•Provide explanation for each section
•Use branching (e.g., not all questions apply to all respondents)
•Ask for information that parents can easily recall
•Use plain/simple language
•Keep completion time to 20–30 min
Question format
•Consider age appropriateness of questions (e.g., will respondent be
able to answer this question-youth vs. adult)
•Avoid having multiple questions in one
•Avoid using acronyms
•Add n/a option for every question
•Ensure questions apply to all neurodevelopmental disabilities
•Timeframe should be ‘at the moment’(e.g., 2 weeks does not make
a difference given disability is long term)
6GONZALEZ ET AL.
reported a lack of social awareness regarding disabilities and a lack of
information about NDDs other than autism.
The other thing I've noticed in doing all this research is
that often they have foundations or so-called things
for autism, but for cerebral palsy or other disabilities, I
have not seen much. (Parent)
3.6.3 | Barriers to accessing services
Parents spoke about accessing services and information and
highlighted a few barriers that interfered with access. The nonflexible
schedule of services was identified as problematic as was the need for
resources to be made available in French.
…she had to refuse this session because the
schedule did not suit her. It wasn't possible with
her schedule. Sometimes the schedules or the time
slots for services of any kind are very inflexible.
(Parent)
Participants also noted that different hospitals offer different
services and that lack of communication between hospitals and
among professionals, as well as lack of knowledge among healthcare
professionals about existing resources, had an impact on access to
services.
Sometimes we are the ones who find the services,
when the specialists do not even know about them.
(Parent)
3.6.4 | Children's experiences as perceived by
parents
Parents reported their children experience isolation. They also noted
that their participation in leisure activities is restricted due to their dis-
ability and that there is a lack of opportunities to participate in play
which impacts their quality of life.
I feel the isolation piece might be something that's con-
sistent across all of us. (Parent)
4|DISCUSSION
This study sought to obtain parents' perspectives on the questionnaire
for a national platform to collect data on children with NDDs. The
results contribute to the knowledge base in this area and to the litera-
ture on stakeholder engagement in research by (1) identifying recom-
mendations for the platform's questionnaire development that can
guide others interested in creating similar platforms and (2) reporting
engagement of our parent–partner and providing preliminary feed-
back on engagement strategies used, information that is lacking from
the literature (Gonzalez et al., 2020).
4.1 |Platform development
Participation of stakeholders in research post platform development is
well documented (d'Udekem et al., 2018). Stakeholder feedback has
also been obtained prior to platform development for neu-
rodevelopmental (Bohonowych et al., 2019) and other conditions
FIGURE 1 Motivators to participate in the platform
GONZALEZ ET AL.7
(Matthews et al., 2019) in studies conducted in the United States, the
United Kingdom and Australia. In Canada, this is the first integrative,
neurodiversity platform where questionnaire development has
been informed through a collaborative effort between researchers and
parents. Platform development will benefit from participants' feedback
and from considering parental experiences reported but not captured
by the initial set of questions. Adding questions that capture important
life experiences may contribute to meaningful outcomes.
4.2 |Parents' caregiving experience
Consistent with previous research, parents in this study reported
experiencing heightened stress, worry about their child's future, and not
having time for activities other than caring for their child with a disability
(Woodgate et al., 2015). Other difficulties reported by parents included
lack of (1) information aboutdisabilities other than autism, (2) knowledge
and communication among healthcare professionals about existing
resources and (3) services in certain regions of Canada. These findings
are consistent with past research that has documented parents' diffi-
culty in accessing information and navigating services (Woodgate
et al., 2015) and highlight the importance of improving resource access
and coordinated care. Challenges described by parents may add to the
stress they already experience. Encouraging parents to cultivate their
support networks may help foster resilience in these families.
Parents' accounts of their children's experiences also echo previ-
ous research findings that children with disabilities experience isola-
tion, lack of opportunities to participate in leisure activities and poor
quality of life (Woodgate et al., 2020). These findings highlight that
Canadian children with disabilities and their families continue to face
challenges in everyday life despite Canada's commitment to ensuring
their inclusion in society and equality of rights.
4.3 |Stakeholder involvement and reflection on
engagement strategies
The positive results of involving a parent–partner in this study may be
related to our partner's prior research experience and the good pre-
existing working relationship between the parent–partner and the senior
researcher. The feedback on the engagement strategies used provided
by the parent–partner can be useful to others wishing to engage parent–
partners in research (see Supporting Information). Although strategies
were evaluated positively, two areas of opportunity were highlighted:
(1) having a preliminary meeting with the parent–partner to review
expectations and potential places for engagement and (2) checking in
frequently (email or phone) to provide opportunity to ask questions.
4.4 |Implications for research and practice
Some of the caregiving experiences reported by parents were not
captured by the original set of questions. This highlights the need to
listen closely to parents and to work collaboratively with them
to ensure inclusion of relevant questions that can inform policy and
programme development. Future research should (1) explore out-
comes that are deemed important by fathers and other groups that
are hard to reach such as parents with immigrant or refugee status,
(2) gather the perspectives of youth with disabilities and healthcare
providers about the platform questionnaire and (3) have more than
one patient–partner to ensure diversity of perspectives.
4.5 |Limitations
We did not capture the perspectives of parents of children with
disabilities representing all conditions that fall under the NDD
TABLE 3 Specific recommendations for the platform by domain
Domains Specific recommendations
Demographics •Ask for parents' age (e.g., not parents' age at
time of delivery), child's age (e.g., not child's
date of birth) and ethnicity of both parents
•Ask about relationship to the child (i.e., biological
and adoptive parents)
•Ask for postal code once (e.g., not multiple times)
Medical
history
•Ask for child age at diagnosis in years or months
•If ask about prescription drug use, define
‘prescription drug use’
•Ask about status of foetus (e.g., when asking if
multiple pregnancy) and about family history of
the condition
•When ask about labour induction, give examples
General
health
•Give range for out-of-pocket medication costs
•When asking about overall health, ask about both
psychological and physical health
Body
functioning
•Use gender inclusive pronouns
•Have ‘hearing’and ‘comprehension’sections
close together
•Remove ‘uncertain’from response options
•Have more questions on vision and hearing
•Replace ‘speech augmentation tools’with
‘communication assistant devices’
•Give examples of communication assistant
devices
•Simplify response options for questions on
comprehension
Self-care •Remove question that asks whether child has
difficulty with self-care if have a section on
activities of daily living (too repetitive)
•Condense activities of daily living questions into
one general question or separate them into
domains (e.g., feeding and bathing)
•Remove questions on toileting/diapering (i.e., very
personal)
Outcomes •Define quality of life (e.g., quality of life questions
are subjective)
Access to
resources
•Ensure that list of websites provided is familiar to
parents (e.g., many are unfamiliar)
•Give range for out-of-pocket costs when ask
about government benefits received
•Give examples of speech and language services
8GONZALEZ ET AL.
umbrella. Yet we gathered the perspective of parents who had a
child with a NDD. Thus, our findings have naturalistic generalizabil-
ity and transferability to parents of children with NDDs
(Smith, 2018). Further, over half of our participants reported having
postsecondary education, and the majority came from the provinces
of Ontario and Quebec. The challenges inherent in getting a diverse
sample of parents of children with disabilities to participate in
research (e.g., time commitment and competing demands) highlight
the need to find recruitment and engagement strategies that can
facilitate the participation of diverse samples. Although our parent–
partner evaluated and provided preliminary feedback on the
engagement strategies used, using a standardized instrument for
this purpose is a next step given the lack of data on effectiveness
of engagement strategies.
TABLE 4 Additional questions identified by parents for inclusion in the platform
Domains Additional questions to include
Demographics •Household size (e.g., number of members) to better capture household income
•Child's disability identity (e.g., how does the child understand his/her disability? How it affects their identity and perception of
themselves?)
•Parents' cost of living when asking about income
Medical history •Types of medication (e.g., vitamins and naturopathic)
•Status of foetus when asking if had multiple pregnancy
•Child's age when specialist gave diagnosis
•Parental involvement in car accident prior to pregnancy
•Child's mental health (e.g., depression and anxiety)
•Parental and family worry/stress
•Comorbidities for child
•Parents' health conditions (e.g., biological and environmental conditions)
•Parental illness during pregnancy (e.g., depression and infections)
•Partner's health
Body
functioning
•Child's mobility (using gross motor function classification system)
•Types of hearing loss
•Presence of strabismus
•Difficulty making friends in a heterogeneous vs. homogenous group (e.g., peers without disabilities vs. peers with disabilities)
•Social acceptance of the child (e.g., does the child feel accepted by others? How do others perceive the child's disability?)
Self-care •Feeding method (e.g., by mouth and tube feeding)
•Eating well by mouth (e.g., may be an indicator of quality of life)
•Whether there is a team (e.g., nutritionist and nurse) assisting with child's feeding
•Dental needs (e.g., dental care and oral hygiene)
•Child's level of independence when performing activities of daily living
Outcomes •Impact of a child's disability on child and parents (e.g., has your situation been the same since the child received the diagnosis?
Has your life been more or less complicated since your child's diagnosis?)
•Social impact of child's disability on the family (e.g., do you feel more socially isolated? Do you feel alienated from certain
communities?)
•Impact of disability on work/professional life (e.g., did you miss days of work due to your disability? Do you have the flexibility
to work from home if needed?)
•Limitations experienced by the child due to disability (e.g., any activity restrictions and participation restrictions)
Access to
resources
•Access to audiology services
•Government benefits in other provinces
•Child use of internet
•Satisfaction with services provided by specialized schools
•Costs of caregiving (other than actual cost, e.g., time)
•Costs of additional services not captured in the questionnaire (e.g., babysitting and leisure)
•Respite (i.e., reimbursement and formal & informal respite source)
•Parents' social support system (e.g., do you have a support system? Do you feel supported at home?)
•Parental satisfaction with services offered
•Access to education and additional support at school
•Child's school experience (e.g., do they like school? Do they struggle academically?)
•School days missed due to disability or mental health conditions
Others •Child emotional state (e.g., is the child happy?)
•Risks and risk awareness associated with diagnosis (e.g., for autism: wandering, elopement, and risk of drowning)
•Professional who gave diagnosis (e.g., psychologist)
•Diagnosis disclosure (e.g., does the child know about their own diagnosis? How do parents disclose?)
•Treatment received and its impact (e.g., which treatments? What are the treatment results?)
•Interactions with the justice system
GONZALEZ ET AL.9
5|CONCLUSION
This study allowed for parent stakeholders to directly contribute to
the development of the questionnaire for a national platform on
NDDs. Obtaining feedback from youths with NDDs and healthcare
providers on the questionnaire is a next step to validating findings.
Collaborating with parents, youths and healthcare providers will be
critical to developing a national platform that will benefit knowledge,
treatment, and advocacy, and inform policies to support these
families.
ACKNOWLEDGEMENTS
This work is dedicated to the memory of Luke Martens. We thank our
funders: Kids Brain Health Network of Centres of Excellence and
CHILD-BRIGHT Strategic Patient Oriented Network Knowledge
Translation Program (postdoctoral fellowship).
CHILD-BRIGHT is a Strategic Patient Oriented Research Network
funded by the Canadian Institutes of Health Research. Infrastructural
support was provided by the Research Institute of the McGill Univer-
sity Health Centre (RI-MUHC) and the Centre for Interdisciplinary
Research in Rehabilitation of Greater Montreal (CRIR).
CONFLICT OF INTEREST
The authors report no conflicts of interest.
ETHICS APPROVAL STATEMENT
This study received ethics approval from the McGill University Health
Centre's Research Ethics Board. All participants provided written
informed consent.
DATA AVAILABILITY STATEMENT
The data that support the findings of this study are available on
request from the corresponding author. The data are not publicly
available due to privacy or ethical restrictions.
ORCID
Miriam Gonzalez https://orcid.org/0000-0002-2020-0531
Shikha Saxena https://orcid.org/0000-0001-7728-9234
Keiko Shikako-Thomas https://orcid.org/0000-0002-4447-5812
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SUPPORTING INFORMATION
Additional supporting information may be found in the online version
of the article at the publisher's website.
How to cite this article: Gonzalez, M., Saxena, S., Chowdhury,
F., Dyck Holzinger, S., Martens, R., Oskoui, M., & Shikako-
Thomas, K. (2021). Informing the development of the
Canadian Neurodiversity Platform: What is important to
parents of children with neurodevelopmental disabilities?
Child: Care, Health and Development,1–11. https://doi.org/10.
1111/cch.12906
GONZALEZ ET AL.11
