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Exploring the Role of Community Agency Employees When Acting as Primary Point of Care Contacts for
Families of Children with Suspected Developmental Disabilities in
Toronto, ON
Dr. Ripudaman Minhas Department of Pediatrics, St. Michael’s Hospital, Toronto
CanadaDivision of Developmental Pediatrics, Department of
Pediatrics, University of Toronto, Toronto CanadaKeenan Research Centre of the Li Ka Shing Knowledge
Institute , St. Michael’s Hospital, Toronto, Canada
Jean Phan Keenan Research Summer Student Program
Outline• Background• Objectives• Methods• Preliminary Results• Discussion• Conclusion• Future Directions• References
Background • 1.7% of children under 5-years
old had received a developmental diagnosis in Canada
• Of the 318,905 children aged 0 to 4 years living in Toronto, over 5,000 young children are living with a developmental diagnosis in Toronto
• 1.7% = low estimate because many children are undiagnosed
Diagnosis
Common Route to Diagnosis Physician
Alternative Route to Diagnosis
Community Agency
Figure 1. Common Routes of Diagnosis for Developmental Delay
Background
Used by families with disadvantaged social determinants of health
Community Agencies & Government
–funded Programs
Ontario Early Years
Centre
GerogehullCentre
Macaulay Child Development
Centre Preschools
Parenting and Family Literacy
Center
Background
Figure 2. Community Agencies and Government- Funded Programs
Reference to: https://www.google.ca/search?q=Don%27t+Wait+and+See+with+a+Child%E2%80%99s+Development+campaign&espv=2&biw=1366&bih=667&source=lnms&tbm=isch&sa=X&ved=0ahUKEwjniJT9hN_NAhUl54MKHe_RD-UQ_AUIBygC#tbm=isch&q=Don%27t+Wait+and+See+with+a+Child%E2%80%99s+Development+&imgrc=g3gDikEcUVmRtM%3A
• Unclear what the processes are for screenings services and what barriers , concerns and experiences these agencies face
• Understanding of this will allow for the development of recommendations to improve this assessment pathway.
• Current disconnect between physicians and community agency workers
Background
Primary Objective:• Explore the experiences and challenges that community agency employees and
school program staff face in their role of a primary point of care contact for families with children showing signs of developmental delay.
Primary Goal:• to develop a Centre for Urban Child Development (CUCD), an interdisciplinary
(health professionals, allied health professionals, community agency workers and school staff), community-based model of developmental care for children from an urban population
Methods2-3 Focus Groups• 6-8 members of community agencies and preschool staff offering
assessments, referrals or early intervention programs for children with a suspected or diagnosed DD.
Participants• Inclusion Criteria:
• Members of community agencies that provide assessment, referral, interventional or liaising services to families of children with suspected or diagnosed DD in the Toronto.
• Exclusion Criteria• Members of community agencies that do not follow-up with
patients after their initial assessment
Focus Group QuestionsWorking with Families• Describe the steps you take in your role when you notice or a parent approaches
you about a child with a possible developmental concern?• Do you encounter barriers or challenges in being a primary point of care contact
for families of children with development disabilities?• How are families referred to your agency or how do they first access initial
services? Working with Physicians• Do you communicate with the families’ pediatricians or family physicians?• Do you ever collaborate with the primary care physician of your clients in
designing or carrying out their interventional programs?• What would be the ideal role of a physician in making your job as a primary
point of care contact more effective?
Preliminary Results
Parental Education
Normalization of
Developmental Concerns
Referral Process
Difference in Opinions
Parental Denial and
Acceptance
Quality of Services
Diagnosis Timing Diagnosis presentation
Collaborative Relationships with Doctors
Focus Group Themes
• “Getting families to move to a place where they’re willing to look at a diagnosis and willing to be able to accept a diagnosis…”
Parental Denial and Acceptance
• “If we can normalize it, like I can talk about asthma just as eloquently and normally as I can talk about ASD or cerebral palsy or Down’s syndrome or any of those other things…”
Normalization of Developmental Concerns
• “It’s the education piece. I think the more knowledge that we give to families about it and the more comfortable we can make them…we could just educate them about it and take all the fear away from it, then it empowers them to be able to deal with it in a different way…”
Parent Education
• “Families that have been to the family doctor and they’ve, oh don’t worry about it, wait and see and all that kind of stuff. Once they get a different message from us around what our views are…”
Differences in Opinions
• “A change in referrals, that there are certain other professions that can refer to developmental pediatricians…they can decide through our assessment if that’s valid…”
Referral Process
• “Is it quality service?...We have so little time to prepare for our sessions. I have like a caseload of 150 kids on my caseload which is huge because before there used to be 100 … We are so scared that we might miss kids, kids may fall through the cracks.”
Quality of Services
• “Developmental pediatricians have asked me if I thought parents were ready for a diagnosis. I was like what difference does that make? Does that mean you’re not giving a diagnosis if they’re not ready?
Diagnosis Timing
• “But also making sure that the news are being delivered at the right time and in a respectful way. I had a mum two weeks ago that came to my initial meeting with a form that was like a checklist and her daughter’s name at the top with the birth date and …Moderate, severe, mild, like checklist and then a bunch of phone numbers at the bottom to call. There was not conversation. It was here you go, thanks for coming out, and she was like …”
Diagnosis Presentation
• “It’s going to have to be a collaboration between the doctors the workers in supporting all these families and provide the services, but also making sure that the news are being delivered at the right time."
Collaborative Relationships with Doctors
Discussion• Raises insight to area of improvement regarding the access to services and
developmental assessments .• Reveals the disconnect between community workers and doctors and how it
impacts the support for families with children with DD.• Highlights the need for a comprehensive assessment and integration of services
and professionals .
Limitations • Severity of concerns may only be relevant to community agency worker in Toronto• Participant invited did not have experience with in home service with hard to
reach families • Information about the demographics of families that access the services were not
asked about• Recruitment bias—voluntary participation so there might be a characteristic about
those that participated that bias the results
Future Directions • Future Focus Groups:
• Educational staff working in pre-school programs with children between 0-6 that have been involved in initially identifying or referring a child with developmental concerns will be invited.
• Connecting with TDSB and inviting kindergarten teachers
• Centre for Urban Child Development (CUCD) focus group participants will be invited back for a presentation
of our results Focus groups will be conducted with primary care physicians to
discuss their experiences Comparative analysis between both focus groups will be
conducted to design the (CUCD)
ConclusionMajor Themes:
• Holistic approach to support children with DD• Educating and supporting families• Integrating services• Accessible resources
Our Role:• Build a platform that allow community agency worker and health
professional to work together to support children with DD• Centre for Urban Children Development
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