BRIGHT Coaching: A Randomized Controlled Trial on the Effectiveness of a Developmental Coach System to Empower Families of Children With Emerging Developmental Delay
Phase: NA
Conditions: Mental Health Wellness 1, Parent-Child Relations, Child Developmental Delay, Parenting, Parent-child Problem, Child Development Disorder, Autism Spectrum Disorder
Sponsor: McGill University Health Centre/Research Institute of the McGill University Health Centre

 
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CHILD-BRIGHT PROJECT 3.2  
BRIGHT COACHING: A DEVELOPMENTAL COACH SYSTEM TO EMPOWER 
FAMILIES OF PRESCHOOLERS WITH SUSPECTED DEVELOPMENTAL DELAYS 
PRINCIPAL INVESTIGATOR LEAD INFORMATION 
Name: Annette Majnemer 
Organization: Montreal Children’s Hospital-MUHC Research Institute, McGill University 
Phone Number: 514-412-4400, ext. 22902 
Email Address: Annette.majnemer@mcgill.ca 
CO-PRINCIPAL INVESTIGATOR LEAD APPLICANT INFORMATION 
Name: Maureen O’Donnell 
Organization: Child Health BC, BC Children’s Hospital, UBC 
Phone Number: 604-877-6418 
Email Address: modonnell@cw.bc.ca 
CO-INVESTIGATORS 
• 
Ballantyne, Marilyn; Holland Bloorview Rehabilitation Center – Researcher, Nurse.(health services, 
family-centred care) 
• 
Cohen, Eyal; Sick Kids Hospital – Researcher, Pediatrician (trials using coach) 
• 
Collet, Jean-Paul; University of British Columbia – Researcher, Pediatrician.(family-centred care) 
• 
Dewan, Tammie; BC Children’s Hospital – Medical Director, Complex Care Program. (health 
services) 
• 
Elsabbagh, Mayada; McGill University – Researcher, Psychologist.(coach model) 
• 
Hanlon-Dearman, Ana; University of Manitoba – Researcher, Developmental Pediatrician. (site co-
lead) 
• 
Filliter, Jillian; IWK, Researcher, Clinical Psychologist (site co-lead) 
• 
Lach, Lucyna; McGill University – Researcher, Professor of Social Work 
• 
McElroy, Theresa; University of British Columbia – Researcher, Health Systems, Occupational 
Therapist. (health services) 
• 
McGrath Patrick; IWK, Researcher, Psychologist. (site co-lead) 
• 
McKellin, William; Parent and Board Member, Rare Disease Foundation, Researcher 
• 
Miller, Anton; Child and Family Research Institute – Researcher, Developmental Pediatrician.(health 
services, family-centred care) 
• 
Patel, Hema; McGill University Health Centre – Pediatrician. (coach model) 
• 
Rempel, Gina; University of Manitoba – Developmental Pediatrician. (site co-lead) 
• 
Shevell, Michael; McGill University Health Centre – Researcher, Child Neurologist. (recruitment, 
education content) 

 
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• 
Wittmeier, Kristy; Manitoba Children’s Hospital Research Institute – Researcher, Physical Therapist 
(site co-lead) 
PATIENT REPRESENTATIVES 
• 
Costello, Carrie; Winnipeg Parent 
• 
Drover, Sarah; Vancouver Parent 
• 
Edes, Judy; Montreal Parent (bilingual) 
• 
Evans, Rachel; Winnipeg Parent 
• 
Geller, Alana; Montreal Parent  
• 
Outhouse, Felecia; Halifax Parent 
• 
Prupas, Aren; Montreal Parent 
• 
Spurway, Amy; Halifax Parent 
• 
Young, Amanda; Vancouver Parent 
PROJECT RESEARCH QUESTION 
A novel, technology-supported developmental coach service delivery model will be developed and tested. 
Importantly, the model will be responsive to the knowledge needs of families and service needs of children 
at high risk for new disabilities. Resulting service delivery models will empower families, will be effective, 
efficient and scalable across metro, urban and rural settings nationally, and will be associated with cost-
savings to the system and patient/family benefits to health and well-being. 
Research question: To evaluate the feasibility and the effectiveness (changes in parent health, 
developmental service utilization and cost-effectiveness) of a self-management intervention (including 
health coach, online education tools and support network), when compared to usual care in service 
delivery practices, for parents of preschool children with elevated risk of BDD prior to school entry. 
 
 

 
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PROJECT DESCRIPTION 
RATIONALE 
 
Children with, or at elevated risk for, brain-based developmental disabilities (BDD) experience 
chronic lifelong functional consequences with new challenges emerging at each stage of development.  In 
the preschool years (3-6 years), needs arise from vulnerabilities linked to critical and newly emerging 
cognitive, speech, motor, behavioural and social skills [1, 2]. For families, this can be a stressful period as 
they witness their child’s differences and await assistance to organize services and coordinate care, and 
must consider the best options in preparation for school entry. Nationally and internationally, service 
delivery models during this critical period are not standardized [3], and differ within and across provinces 
and across patient conditions, leading to long wait times, service gaps and duplications [4, 5].  
Recently, a focus on care coordination (e.g. care planning, navigating healthcare system) has emerged in 
the literature for those with chronic disease [6]. At the same time, science has emerged demonstrating 
how patient education programs that promote self-management for those with specific chronic conditions 
have positive effects on health behaviours, improved health status, and decreased health care costs [7]. 
Health coaching research to date has, for the most part, focussed on improving motivation and adherence 
to health behaviours and to support lifestyle change in order to prevent the negative course of a disease 
[8]. Health coaching is tailored to the patients’ knowledge needs, and can be delivered through many 
means – one to one or via telephone or technology [9].  
The preschool years are a time of stress for families as their preschool child awaits assessment, or even as 
they receive services for brain-based disorders. Similarly, the system and society struggle to meet needs of 
families in a timely and appropriate manner in the face of escalating costs.  Given these struggles, there is 
need to examine whether a health-coach style of intervention coupled with parent education delivered 
through an online platform can be effective in empowering families, by delivering information, providing 
social (parent to parent) supports, and decreasing demand on health and developmental services.  This 
innovation provides a significant service re-design in a system at critical point of transition. 
AIMS AND HYPOTHESES 
Primary Hypotheses: 
(1) A standardized approach to “developmental coaching” (i.e. coach + online education tools + peer 
support network) is feasible in the real-life context and acceptable to mothers and fathers and can 
be delivered across multiple inter-provincial sites that recruit patients from urban/suburban/rural 
settings.  
(2) A standardized approach to “developmental coaching” enhances parental health (parents’ 
empowerment and sense of competence, quality of life, and minimizes parenting stress), family 
health care experience (care coordination experience and process of care) at similar health care cost 
(economic analysis), when compared to usual care.  
Secondary Hypotheses: 

 
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(3) Given the differences that exist in caregiver burden, Fathers will contact the coach and use the 
online platform less frequently then mothers. (sex/gender hypothesis) 
(4) Parents will use the online platform most frequently during the expansion of referral ties and 
contacts in the early phase of transition. 
(5) During the course of coaching, families’ networks will move from more professional, health services 
support to more community, educational and peer support. 
RESEARCH METHODS 
The developmental coach model proposes a partnership with families in the redesign of care that fosters 
knowledge exchange and a supportive learning environment. The coach will provide knowledge about child 
development, support to foster parent empowerment and guidance on navigation of the health care 
system. Web-based tools on healthy development and a peer support network using an online platform 
(Igloo - see below) complement the coach’s role. Participants will be randomized to either our BRIGHT 
systems model which includes usual care, or usual care alone, and tracked over time. The selected target 
population represents a group vulnerable to poor access to care and misuse (both overuse and underuse) 
of specialized developmental services in the preschool years, prior to school entry. This group provide a 
unique opportunity to understand how to best optimize child and family well-being. 
Trial design: 
This is a prospective, two-arm pragmatic randomized controlled trial (RCT) comparing a developmental 
coaching and e-health services intervention plus usual care to the control state in which children and their 
families receive usual care over an 12-month time frame. The target population for this novel service 
delivery model is preschoolers at high risk for or suspected of having developmental delays, that are 
beginning to manifest impairments in developmental domains (e.g. motor, cognitive, speech, social and/or 
behavioural). In the first year, a technology-supported health coach service delivery model will be 
developed in conjunction with families.  A feasibility/acceptability pilot study will be conducted to ensure 
that the intervention can be done in the real life context across 4 provinces. Fidelity of the coach will be 
verified by the master trainers (AM and MO). After modifications to enhance feasibility, the RCT will follow. 
Participants: 
Eligible children and their families will be recruited to include preschool children 1.5-4.5 years (18 to 54 
months) at the age of enrolment, who are not expected to enter school/kindergarten within 6 months of 
enrolment. Children will be living in four diverse parts of Canada to ensure national representation and 
future scalability: British Columbia, Manitoba, Nova Scotia, Quebec. Participants’ postal codes will be 
analyzed to ensure representation: rural/remote, small urban and large urban/metro representation with 
purposeful sampling as required. From the patient population perspective, two different groups that are 
likely to manifest new global developmental delays at this stage will be recruited. They are at high risk for 
brain-based developmental delays, however some will have no delay and others will have mild, moderate 
or severe delays.  
Children at risk who are not yet receiving developmental services: Primary care provider and/or parental 
concerns regarding their child’s developmental progress become apparent in the preschool years. 

 
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Inconsistent use of screening tools and variation in triage and assessment methods often result in delayed 
detection and long wait lists for services. Children will be those waiting for their first formal appointment 
for diagnosis and assessment for “developmental delay”, from a public health facility, a child 
developmental centre and/or a dedicated hospital clinic. These children represent a group who are not 
currently receiving developmental services. These children may be found to have no delay, a delay in one 
domain (e.g. specific language impairment) or global delays, which can be mild to severe. This will be a 
consecutive sample on the wait list and who are between 1.5-4.5 years of age.  
For this trial, children/families will be excluded if they: (1) are non-English speaking (and non-French 
speaking in sites where services are available in French); (2) are unwilling or unable to meet with the study 
team for intermittent assessments; (3) do not have access on a routine basis to the internet through a 
desktop or mobile device. We will recruit 350 subjects, 175 for both intervention and control arms. 
Study procedures: Intervention and control  
Recruitment will begin with family contact. Each site manages their own recruitment process and protocol. 
Please see our Recruitment Protocol in Montreal (Appendix). Families will be contacted via the centre to 
which they were referred for developmental diagnosis and assessment. A member of the clinical team will 
ask if they are interested to learn more about the BRIGHT Coaching study. If interested, the families’ 
contact information will be shared with the local research assistant (RA) overseeing the trial. The RA will 
speak to a parent by phone and follow up with an introductory letter by mail and/or email explaining the 
procedures of the study, together with the consent form. After 1 to 10 days, the RA will call the family to 
determine interest in participating and answer any questions. If interested in participating, parent can 
either 1) sign the consent form and scan by email to the RA, 2) send the consent form to the RA by mail/ 
hand it to them in person, 3) agree to a verbal consent process and verbal consent will be given to the RA 
over the phone (in accordance with the Tri-Council Policy Statement on verbal consent).Once consent is 
signed, participants will conduct baseline assessments including documentation of their care and social 
networks, and be randomized using a computer-generated algorithm; randomization will be stratified by 
site. The allocation ratio for intervention or control will be 1:1 for each site.  
The developmental coaching intervention will be developed in year 1. A coaching consensus workshop took 
place in Vancouver for August 20, 2016, and focussed on the “key ingredients” for a coach model. This 
workshop will be followed by team meetings (with relevant stakeholders) in order to develop a 
standardized manual to include definition of roles and functions and ‘active ingredients’ to successful 
coaching. A standardized approach to coaching will be developed guided by the participation of families 
(our parent advisory group) and using the best evidence. The responsibilities of the coach are expected to 
include: i) helping families identify  areas of developmental concerns (e.g. using the checklist of 
developmental milestones published by Centre of Disease Control & Prevention) , ii) proactive health 
promotion and guidance with respect to developmental stimulation and skills training to optimize 
development, iii) parent education about child development consistent with the child’s current strengths 
and challenges and the parents’ areas of greatest concern, iv) parent support, v) provision of general 
information regarding the general developmental services that might be of benefit to the child (e.g. seeing 
an audiologist or neurologist). The coach at each site will have skills in family support, and expertise in child 
development; but will not be a registered health professional (for real-life generalizability and cost). The 
coach will possess skills such as motivational interviewing techniques, individual and collaborative goal-
setting and shared decision-making. There will be a minimum frequency defined as one telephone contact  

 
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2-4 times per month for 45-60 min for each session, and the duration of contact will be 12 months. 
Instructions for specific coaching situations will be created based on the assumptions that (1) parents have 
similar self-management skills and needs, (2) parents can develop skills in supporting their child’s 
development and accessing services, (3) confident, knowledgeable parents will support their children in 
accessing services that are appropriate and utilize fewer health/social resources if they are more supported 
in determining the direction to which they should go.   
The intervention will be provided in a flexible manner, as determined by the parents’ needs, circumstances 
and preferences and the child’s developmental condition. Mothers and fathers will both be encouraged to 
interact with the coach and seek advice and support. The coach will be reachable at least every second day 
(minimum 4-6 hours per day, 3 days per week); however, calls with families will vary from a minimum of 
every 4 weeks (ideally every 2 weeks) and will be scheduled at a time convenient for the parent with 
evening appointments available until 8 pm at least one night per week. Calls will be audiotaped and 
reviewed by the study team to ensure program quality and reviewed by peer-coaches for self-review and 
program quality improvement on an iterative basis. Coaches will receive manuals and specific training 
activities including small group discussions, experiential learning and sharing of best practices among 
coaches in the trial. A registered health professional (i.e. experienced social worker and family counsellor 
with expertise in family/ young child counselling) has been hired as a “Coach Lead” to provide training, 
mentoring and oversight of coach activities. 
In addition to the coach, specific evidence-based educational web content will be sourced and curated by 
the project team and relevant stakeholders (conducted in the first year as part of intervention 
development). Input and feedback from the parent advisory group will further refine and inform the 
program content. The content will be linked to an online care coordination platform - the  Igloo platform - 
which puts each family at the centre of each network (family, friends, health professionals), and then 
allows each family network to link with other family networks in the intervention arm of the study. This will 
enable families the opportunity to find and store resources, create connections with the coach, health 
providers and other families, thereby creating a network of individuals to support them formally and 
informally. Peer support (among parents in the intervention arm) will be a critical part of this service 
delivery strategy, enabling parents to share strategies This password-protected website will include 
credible links to sites based on the family-based needs assessment described above.  
For those in the intervention arm, the coach will call within one week of enrolment to provide an overview 
of the BRIGHT program’s goals and content, to enquire about the child’s current developmental status. 
Specific goals with respect to the parents’ involvement the BRIGHT Program, reflecting their desired needs, 
services will be set for the first nine month interval, the first of two.   
Control intervention: Children randomized to the control group will receive usual care. They will be 
contacted at recruitment for baseline information and will be assessed at 8 and 12 months later using the 
outcome measures outlined below. Upon completion of the study, they will be provided with a one-time 
interaction with the coach who will provide general guidance regarding their child’s development as well as 
providing them with access to the password-protected site containing the educational web-content and 
Igloo support platform that they can access.  
A pilot study (2 participants per site for a total of 8 participants) will first be conducted to test feasibility of 
the procedures in the real world setting across the four sites and any challenges will be discussed by the 

 
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team to find ways to ensure feasibility over a three month period.  Parents will be interviewed about the 
acceptability of the recruitment, the coaching, the educational tools and support network using the Igloo 
platform. Any challenges will be minimized prior to launching the RCT. 
Baseline, ongoing and final data collection and outcome measures: 
For all participants, the following attributes will be measured at recruitment to characterize the sample: i) 
child’s sex/gender and age, ii) postal code and parents’ education (SES, urban/rural), iii) child’s 
developmental and independence score using the Vineland [11] (phone interview), iv) family context 
(Parenting Stress Index [12], v) developmental services used.  Finally, at baseline, families will be contacted 
by phone and asked a three question screening survey to assess their “readiness” to benefit from the 
coaching intervention:(1) do you feel that you have been provided with sufficient information about your 
child’s health and development? (no = 1 point); (2) are there things that you would like to change about 
how your child Is accessing support or services in support of their development? (yes = 1 point); (3) Can you 
given an example of how you or  health providers could help YOU change things for the better with respect 
to your child’s development? (yes = 1 point). In addition, at baseline, care and social support networks will 
be documented in both arms of the study.   
Because this is a pragmatic trial that is meant to be generalized to the real-world context, blinding is not 
appropriate or possible. In addition, the outcome measures to be used are primarily self-report in nature, 
again replicating what would be cost-effective and patient oriented in the real-world setting. Outcome 
measures will be measured at baseline, 8 months post-entry and 12 months post-entry. 
The initial primary outcome (Hypothesis 1) relates to the assessment of feasibility and initial acceptability 
of the protocol implementation. Protocol feasibility will be evaluated with respect to ability to recruit and 
implement a standardized approach to coaching and use of the platform across the four diverse sites. The 
feasibility and acceptability of the intervention will be evaluated by: percent of successful virtual visits with 
the coach (defined as the ability to connect with family at home via telephone or e-health tool); 
participants’ utilization of Igloo-based online education; parental (mother AND father, if both involved, or 
other caregiver, as appropriate) satisfaction surveys; and, feedback from the coaches. 
Once past the feasibility stage, outcomes will be measured at 8 months and 12 months after recruitment. 
The primary outcome of interest in the RCT is the parents’ ability to self-manage and promote their child’s 
development. Thus, the primary outcome measure is the Family Empowerment Scale, which focuses on 
empowerment at the family (managing the day to day), services (working with system to receive adequate 
services) and community (finding or advocating for needed supports, policies, agencies) levels [13].  Its 
psychometric properties are acceptable. A second measure will be the Parents’ Sense of Competence Scale 
which measures satisfaction (anxiety, motivation, frustration) and efficacy (capability, problem-solving) 
with parental roles [14].  
Secondary measures of intervention efficacy apply the Triple Aim Framework and will include: 
1. 
Parental well-being: SF-36 [15] (quality of life) and the Parenting Stress Index [12] (parent 
stress level). 
2. 
Family health care experience: Measure of Process of Care [16] (the extent to which care is 
family-centred)  

 
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3. 
Health care costs/ service utilization patterns: the Resource Utilization Questionnaire ( adapted 
from Drs. Ungar and Zwicker) uses standardized metrics for the evaluation of costs (health care 
and out-of-pocket), consequences and benefits from the patient, provider and health system 
perspectives.  
4. 
Care and social networks: Care and social networks will be tracked using Igloo analytics. This 
will include tracking during the transition from preschool to school-aged services and the 
identification of professional and community supports.  
5. 
Engagement of mothers and fathers with BRIGHT program: Analysis of electronic contact data 
from Igloo platform by mothers and fathers (gender).  
Exploratory measures will include: 
Child’s functional abilities and independence: Vineland – daily living skills, socialization, etc .. Importantly, 
in the spring of 2017, an online “needs assessment” survey was conducted with Canadian families to 
influence the content of the coach intervention and to determine the outcomes of greatest interest to 
families and administrators. 
Additional Qualitative study regarding acceptability of the BRIGHT program:  At study completion, to better 
appreciate the patients/families’ experience with the BRIGHT model, we will conduct exit interviews on 
those in the intervention group. Key ingredients to the intervention (what they most appreciated/valued) 
and the factors that influenced (positively and negatively) the success of the intervention will be probed. 
The responses will be coded using qualitative analysis software and analysis will be conducted to 
determine major themes.  In addition, exit interviews with the coaches will similarly be completed to 
determine the feasibility of the intervention from their perspective.  
Data collection and management:  
Each of the four sites will have a part-time RA, with a Study Coordinator at the Montreal site. The 
Coordinator will organize regular teleconferences with the RAs to trouble shoot any challenges in 
recruitment or data collection, and will ensure standardization of procedures. There will be a data sharing 
agreement signed by the four sites, with a common REDCap database for all to use for data entry. The 
password-protected database will have personal information de-identified and a separate list will be kept 
of participants (child, parents) names, birth date of the child, and address/email. The Study Coordinator 
will have oversight of the database and ensure that there are no missing values. 
Timeline: 
Year 1: Develop coach manual and training; develop online educational tools and customize Igloo platform. 
Year 2: Pilot study; finalize methods and measures; begin recruitment. Year 3: Complete recruitment; 8 
month outcome evaluation for early participants. Year 4: Complete 12 month intervention and outcomes. 
Year 5: statistical analyses; qualitative interview analysis; manuscript preparation; KT plan to include policy 
brief. 
Statistical analyses: 

 
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Descriptive statistics will be used to characterize our sample in the experimental and control arms. The 
primary analysis is to ascertain benefit of the BRIGHT system (Coach + online education tools + online peer 
support) compared to usual care (control) will be between group (intervention vs control) comparison of 
primary and secondary outcomes using t tests (two-sided, p<.05). Statistical comparisons will be made at 8- 
and 12- months post enrolment, to determine if group differences manifest early and if they continue to 
improve or stabilize. This will be important in determining whether the BRIGHT system is necessary over a 
prolonged period (8 vs 12 months) to achieve its goals. Principles of intent-to-treat analysis will be applied. 
Repeated measures with mixed model analysis will be used to assess effect of group category and province 
with intervention at two time points. Within the intervention group, predictors of change scores between 
baseline and outcomes (dependent variable) will be tested to determine which children/families are more 
likely to be responsive to the BRIGHT system. Multivariate linear regressions will be conducted with 
independent variables, to include: parent readiness score, sociodemographic factors, child’s functioning 
(Vineland), province, and engagement in the Igloo platform. The structural properties of the network 
(Igloo) will be analysed using UCINET [17]. Network analysis related to patterns of use of the online 
platform will be correlated with the outcome measures of interest in this study.  
 
Sample size:  
We will recruit 392 participants; we project a sample size of 352 based on: i) two-sided test of the null 
hypothesis at α=.05, ii) β=.80, iii) 10% attrition; iv) difference of 0.3 SD. 
Studies as of yet have not identified a minimal clinically important difference (MCID) for our primary 
outcome measure (the Family Empowerment Scale) that could be used to estimate sample size calculation. 
In the absence of a “clinimetric” MCID, a distribution-based methods approach is commonly applied that 
proposes a fraction of the pooled Standard Deviation (i.e. utilize effect size estimates). In this case, the 
difference of 0.3 standard deviation can be used to detect modest effects that may be clinically significant; 
or 0.5 SD for moderate to large effects [18, 19].  
We aim to recruit a sample of 350 participants (randomized to either intervention or control group) across 
the four sites. This will be approximately 100 from British Columbia, 100 from Quebec, 75 from Manitoba 
and 75 from Nova Scotia. In order to be able to detect modest effects that may be clinically important (0.3 
SD), this would require recruitment of a sample of 392, accounting for 10% attrition, for a sample of 352. 
Furthermore, this larger sample size would enable us to account for cluster randomization. We expect that 
all participants are independent, whether or not they live in any of the provinces. Nonetheless, it is 
conceivable that the association within provinces is slightly stronger (weak ICC=0.100) than the association 
between participants across provinces, due to environmental context (i.e. different health care and social 
service systems). A sample size of 346 (recruit 384, 10% attrition) would allow us to account for cluster 
randomization. We will apply a linear mixed model to account for the possible effect of province on the 
benefits of treatment on empowerment and parent competency. 
PLANS FOR KNOWLEDGE TRANSLATION 
The results of this study will be relevant to families, health service administrators, policy makers and 
providers. 

 
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Families:  Families will be important consumers of the results of this study. In order to determine how best 
to communicate the results to them, a focus group of families will be brought together. They will guide 
strategy and tactics with respect to the study results. The content for this knowledge translation will be 
particularly focussed on the benefits and challenges from the perspective of families. With respect to 
tactics, it is anticipated that family councils, childhood-disability focussed organizations, the media, family-
guided web-based materials and providers will be modalities undertaken to reach families.  This plan will 
be modified subsequent to the focus group with families after the conclusion of the study. 
Policy-makers and health/social service administrators: This audience will be a critical audience given the 
wait-lists and waiting times for developmental services that parents experience. The content for this 
audience will focus on the nature of the intervention, the key ingredients that showed success, the cost-
utility analysis.  With respect to tactics, a policy dialogue will be hosted in year 5 and policy options for 
implementation will be constructed. A policy paper with associated briefing notes (generic), which can be 
tailored to each province and their relevant ministries, will be created.  
Providers: Providers will be interested in these results.  The focus with respect to content for this audience 
is on the effectiveness of the intervention and its relation to “usual care”. Tactics will include peer-
reviewed articles and presentation at local, provincial, and national meetings will be undertaken. 
PLANS FOR TRAINING 
The British Columbia and Quebec recruitment sites have funding to support a doctoral or postdoctoral 
trainee throughout the duration of the project. The trainees will have the opportunity to expand their 
knowledge and expertise in health services research, network analyses, family engagement and pragmatic 
randomized trials. In addition, the trainees will be expected to participate in CHILD-BRIGHT’s patient-
oriented training program.  
The investigators of our ‘BRIGHT Coaching system’ study will be working collaboratively with investigators 
from other projects (theme 3 projects, Strongest Families in theme 2) that are applying a coach model to 
develop a manual. This handbook will describe health coach frameworks and key ingredients of success 
(from the literature), and define the coach’s roles and responsibilities and provide case examples to further 
clarify this service delivery approach. Our team will work with the other teams to develop training modules 
on the coach model, for the benefit of particular stakeholder groups that would be interested in learning 
more about this model of care. These modules will be tailored to the user (i.e. parents, clinicians, 
policymakers and health administrators) to promote greater understanding of the benefits and challenges. 
There will be an interactive component to enable stakeholders across groups to discuss the potential 
applications of a coach model to support children with disabilities and their families across key transition 
points of care. 
IMPLICATIONS FOR CHILD AND FAMILY WELL BEING - PRACTICE AND POLICY 
The preschool years between 3 and 6 years of age are a time of great developmental change and a time of 
great concern for parents who see differences in their child’s development. Coordination of services, for 
those children receiving them can be challenging and confusing. Waiting for services for those not yet 

 
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receiving them can lead to frustration and fear. From a policy and health/social system administrator 
perspective, despite large investments, waiting lists often exist.  
At the conclusion of this study, should the hypotheses be proven to be correct, the following impact will be 
seen for the following groups: 
- 
Families: This study will produce an evidence-based mechanism to support families during times of 
uncertainty. It will be effective across developmental severity levels making it very generalizable. It 
will enable families in feeling supported, will enhance family empowerment, will support enhanced 
family well-being. With guidance regarding services, it is expected that there will be reduced travel 
time and time off work for families, thereby reducing costs to families. 
- 
Policy makers and health administrators: The results and KT products will provide mechanisms to 
facilitate discussion regarding how the program is delivered regionally. It is anticipated that the 
program and its key ingredients could be delivered through multiple means, allowing governments 
to tailor its use to reflect their provincial, regional and local nuances. 
- 
Service Delivery/Developmental Programs:  The draw on services across provinces will be reduced 
as families receive information that prevents them from being in the incorrect queue for services 
and assists them in coordinating their own services as has been done with other self-management 
programs in adults with chronic disease. Rural and remote service delivery will be enhanced 
through this care, which can be delivered from a distance. 
 
 

 
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TABLE 1. MILESTONES, DELIVERABLES 
Major Project 
Activities/ 
Milestones 
Year 1 
(M)ilestones 
Year 2 
(M)ilestones 
Year 3 
(M)ilestones/ 
(D)eliverable 
Year 4 
(M)ilestones/ 
(D)eliverable 
Year 5 
(M)ilestones/ 
(D)eliverable 
Clinical study 
protocol and 
ethics review 
(D) Protocol 
finalized with 
family input  
(D) Ethics 
approves 
finalized 
protocol across 
sites 
 
  
 
 
Clinical 
procedures – 
Coaching 
intervention 
(M) Families 
actively engaged 
in development 
of coaching 
intervention 
(M) Coaching 
procedures co-
developed 
across relevant 
CHILD-BRIGHT 
projects 
(D)Coaching 
procedure 
finalized and 
manualized 
(M) Coaching 
intervention 
pilot study for 
feasibility 
(D) Revised 
coaching manual 
post- pilot  
(M) Coaching 
intervention 
being utilized 
(M) Coaching 
intervention 
used and ceased 
with end of 
study period 
(D) Coaching 
intervention 
results analyzed 
and presented 
Recruitment 
(M) Recruitment 
strategy plan for 
each site  
(M) Recruitment 
strategy piloted  
(M) Recruitment 
strategy used  
(D) Recruitment 
completed 
 
 
Educational 
tools  
(M) Families and 
health providers 
collaborate to 
confirm foci for 
educational 
tools 
(D) Educational 
tools for e-
health platform 
curated  
(M) Educational 
tools on online 
education 
platform piloted 
in pilot study 
(M) Revisions to 
educational 
tools made 
based on pilot  
(M) Online 
education tools 
used in 
intervention 
(M)  Online 
education tools 
used and use 
ceased at end of 
study period  
(D) Evaluation of 
value of tools 
completed  
Igloo online 
platform 
(M) Families and 
health providers 
engaged with 
(M) Customized 
platform trialed 
among parent 
(M) Platform 
utilized by study 
sample 
 
(D) Evaluation of 
value of 

 
PROJECT 3.2 - PROJECT PROPOSAL 
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customizing 
platform 
 
advisory group, 
and potentially 
in pilot 
(D) Igloo  
platform 
finalized  
platform 
completed 
Data collection, 
measures and 
analysis 
(M) Finalize 
tools and 
measures to be 
used with family 
engagement 
(M) Baseline 
measures 
piloted 
(M ) Baseline 
and 8-month 
measures (child, 
family, network) 
collected  
(M) 12-month 
measures 
collected and (D) 
completed 
(M) Plan 
network analysis 
(M) Qualitative 
interviews 
completed 
(D) Analysis of 
all data in 
relation to 
hypotheses  
(D) Network 
analysis 
completed 
Knowledge 
translation 
 
 
 
(M) Scale up 
work with 
families 
regarding KT 
(M) Plan 
interactions with 
policy makers 
regarding KT 
(M) Project plan 
regarding 
clinicians and KT  
(D) Carry out KT 
plan with 
families 
(D) Hold KT 
forum and 
complete policy 
briefs for policy 
makers 
(D) Complete 
clinician 
documents 
(D) Manuscripts 
complete 
 
Anticipated Outcomes: 
• 
Parents will be more empowered and knowledgeable, and 
make more informed decisions about their child’s care and 
development 
• 
Services accessed will be appropriate based on the child’s and 
family’s needs and developmental services will be more cost-
effective 
• 
Providers will feel confident that their clients are receiving 
appropriate services and supports based on client needs 
Anticipated Impacts:  
A more responsive health care system that meets the developmental 
needs of children and the health and knowledge needs of parents. 
 
The electronic platform (Igloo) will be tested with respect to its utility 
as an information and support network, for consideration for other 
chronic diseases of childhood. 

 
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Research trainees will be well prepared to pursue future child health 
research with a strong inclusion of families and their support networks. 
TABLE 2. SUMMARY OF MAIN PREDICTOR AND OUTCOME MEASURES 
VARIABLES 
 
MEASURE 
PRIMARY PREDICTOR 
 
Intervention versus control group 
Randomization to one group 
Other Key Variables 
Child’s age 
Age at recruitment in months to one decimal place 
Child’s sex 
Male/female 
Parental involvement in the intervention  
Mother vs father; # of uses of Igloo platform (areas: 
coach, online education tools, peer support) 
Socioeconomic factors 
Parents’ education level, postal code 
Readiness for health coach model 
Readiness for coaching questionnaire (3-points) 
 
OUTCOMES 
PRIMARY 
Empowerment (ability to manage and take charge) at the 
family, services and community levels 
Family Empowerment Scale 
Parental satisfaction and efficacy with competency 
Parents Sense of Competence Scale 
SECONDARY 
Family stress level 
Parenting Stress Index 
Parental well-being (quality of life) 
SF-36 
 
 
Family-centered care provided by coach to include 
educational benefits 
Measure of Process of Care 

 
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Health service utilization and costs 
Resource Utilization Questionnaire ( adapted from 
Ungar and Zwicker) 
Profile Form 
Surveys on background of participant & family structure 
Demographic Form 
Survey on family socioeconomic status and education 
level 
Child’s functional abilities 
Vineland 
Survey on parent/caregiver mental health 
Parenting Morale Index 
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