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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