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- 1. 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 Canada Division of Developmental Pediatrics, Department of Pediatrics, University of Toronto, Toronto Canada Keenan Research Centre of the Li Ka Shing Knowledge Institute , St. Michael’s Hospital, Toronto, Canada Jean Phan Keenan Research Summer Student Program
- 2. Outline • Background • Objectives • Methods • Preliminary Results • Discussion • Conclusion • Future Directions • References
- 3. 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
- 5. 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
- 6. Community Agencies & Government –funded Programs Ontario Early Years Centre Gerogehull Centre Macaulay Child Development Centre Preschools Parenting and Family Literacy Center Background Figure 2. Community Agencies and Government- Funded Programs
- 8. • 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
- 9. 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
- 10. Methods 2-3 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
- 11. Focus Group Questions Working 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?
- 12. 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
- 13. • “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
- 14. • “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
- 15. • “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
- 16. 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
- 17. 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)
- 18. Conclusion Major 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
- 19. References • Dawson, G., Rogers, S., Munson, J., Smith, M., Winter, J., Greenson, J., Donaldson, A., & Varley, J. (2009). Randomized, Controlled Trial of an Intervention for Toddlers With Autism: The Early Start Denver Model. Pediatrics, 125(1): e17-e23. • Einfeld, S. L., Tonge, B. J., & Clarke, K. S. (2013). Prevention and early intervention for behaviour in children with developmental disabilities. Current Opinion in Psychiatry, 26(3): 263-269. • Head, L. S., & Abbeduto, L. (2007). Recognizing the role of parents in developmental outcomes: A systems approach to evaluating the child with developmental disabilities. Mental Retardation and Developmental Disabilities Research Reviews, 13: 293-301. • King, T., & Glascoe, F. P. (2003). Developmental surveillance of infants and young children in pediatric primary care. Current Opinion in Pediatrics, 15(6): 624-629. • King, G., Lindsay, S., Klassen, A., Esses, V. and Mesterman, R. (2011). Barriers to Health Service Utilization by Immigrant Families Raising a Disabled Child: Unmet Needs and the Role of Discrimination. [online] Toronto: Citizenship and Immigration Canada. Available at: http://p2pcanada.ca/wp-content/uploads/2011/09/families-with-disabled-child-final-report1.pdf [Accessed 29 Oct. 2015]. • Majnemer, A. (1998). Benefits of Early Intervention for Children With Developmental Disabilities. Seminars in Pediatric Neurology, 5(1): 61- 69. • McCain, M. N., Mustard, J. F., & Shanker, S. (2007). Early years study 2: Putting science into action. Toronto, ON: Council for Early Child Development. • Osei, M., Toffoli, M., & Grant, S. (2014). Toronto public health’s child development and nutrition screening: A community approach. The Newsletter of Infant Mental Health Promotion, 62: 1-5. • Rabiee, F. (2004). Focus-group interview and data analysis. Proceedings of the Nutrition Society, 63: 655-660. • Ramey, C. T. & Ramey S. L. (1998). Early Intervention and Early Experience. American Psychologist, 53(2): 109-120. • Sansosti, F. J., Lavik, K. B., & Sansosti, J. M. (2012). Family Experiences Through the Autism Diagnostic Process. Focus on Autism and Other Developmental Disabilities, 27(2): 81-92. • Silverstein, M., Sand, N., Glascoe, F. P., Gupta, V. B., Tonniges, T. P., & O’Connor, K. G. Pediatrician practices regarding referral to early intervention services: Is an established diagnosis important? Ambulatory Pediatrics, 6(2): 105-109. • Statistics Canada. (2006). Participation and Activity Limitation Survey (PALS), 2001, 2006. Ottawa, Ontario: Statistics Canada. • Statistics Canada (2012). Focus on Geography Series, 2011 Census. Statistics Canada Catalogue no. 98-310-XWE2011004. Ottawa, Ontario: Analytical products, 2011 Census. • Watson, S. L. (2008). Families and Differential Diagnosis of Developmental Disability. Journal on Developmental Disabilities, 14(3): 51-61. • Zuckerman, K. E., Lindly, O. J., & Sinche, B. K. (2015). Parental concerns, provider response, and timeliness of autism spectrum disorder diagnosis. Journal of Pediatrics, 166(6): 1431-1439.e1.
Notas del editor
- In 2006, 1.7% of children under 5-years old had received a developmental diagnosis in Canada total of 318,905 children aged 0 to 4 years living in Toronto, Ontario, according to Statistics Canada (2012), one may expect to find over 5,000 young children living with a developmental diagnosis in the city. 1.7% is a low estimate because it is assumed that many children currently remain undiagnosed
- There are long waits times for a developmental assessment to obtain a diagnoses and Diagnoses are critical to supporting children with developmental delay (DD) - they are often required for families to access appropriate early intervention services Developmental services are presently the most promising method of improving educational and behavioral skills and promoting further healthy development in children but many of these services also have long wait times. Name some of this (ie ABA, speech and lanaguage..early intervention)
- In the literature most common route to diagnosis occurs when parents raise concerns about their child’s development to a physician, who then conducts a formal assessment and makes the diagnosis or initiates a specialist referral. An alternative route of diagnosis that is less explored in the literature is the community agency screening and referring children suspected of having DD before they are seen by a primary care physician. This is used by families with disadvantaged social determinants of health; including families with language barriers, newcomer status, lack of transportation, or lack of awareness of local services.
- In Toronto, community agencies, government-funded programs offer a variety of free programs for families of children aged 0-6-years that educate parents about the normal development of children and promote improved parenting skills. These community agency worker have direct interaction with pre-school aged children and spend a longer time with these children compared to physician who see them at annual clinic appointments. This allows them to play a significant role in identifying children at risk of DD Thus, in Toronto, community agency personnel and educational staff can act as the primary point of care contact for families by initially identifying children with suspected developmental concerns and connecting families to appropriate referrals or early intervention programs.
- Currently, over 250 community agency members have been trained by Toronto Public Health (TPH) to conduct developmental sessions public health campaign called “Don’t Wait and See with a Child’s Development” ( shown above) was used to raise awareness about how to access developmental screening in the community, and connect families to screening services, they also made referrals when necessary
- Unclear what the processes are for screenings services and what barriers and experiences these agencies face Understanding of this allow for the development of recommendations to improve this assessment pathway. Bridging the disconnect between community worker and community agency worker
- 2 to 3 focus groups will be conducted and each focus group with be comprised of 6-8 members of community agencies and preschool staff that offer assessments, referrals or early intervention programs for children with a suspected or diagnosed DD. Participants were included if they are members of community agencies that provide assessment, referral, interventional or liaising services to families of children with suspected or diagnosed DD in the Toronto area They will be excluded if they do not follow-up with patients after their initial assessment will not be or the staff that has not interacted with children with DD
- Participants were asked questions pertaining to their experiences working with families and physician. The questions asked were how the individual approach or are approached by the parent about a child development, if they encountered barrier or challenges in being a primary point of care contact and how are the families referred or get initial services In addition they were asked about their experience working with physician, whether there is a line of communication, collaboration and what their ideal physician would be
- These are a few of the themes that appeared when conducting the focus groups such parental education, normalization of development concerns, parental denial and acceptance, the referral process, difference in opinion, quality of services, diagnosis timing and presentation, quality of developmental assessments and appointments, and their need for the collaborative relationship with doctors. These themes and the participants statements will be addressed in next few slides
- During the focus group sessions community agency worker believed that parental denial and path to acceptance was a barrier. Indicated by their statement above that “A big part of their job is getting families to move to a place where they’re willing to look at a diagnose and accept it.” They also believed that normalization and parent education was key to being able to support parents with their child diagnoses which is supported through the statements “ 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 and and “ It’s the education piece… we could 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, It’s like here’s the diagnosis, it’s something you may have never heard of before, here’s a list of phone numbers to call and best of luck to you.. They don’t really know what it means and they don’t really, it’s hard for families.
- Other barriers or challenges were the differences opinions they had regarding the diagnosis. Sometimes the doctors would tell them to wait and see but the community workers believed that there are indication of developmental delays indicated right here Also, They believed that the referral process was can be very inefficient and hopes that maybe that can be changed so that not only medical doctors can make the referral for a development assessment but other professional (seen through the statement here) There is also the quality of services that they worry about because of a long waitlist of families trying to access developmental services the caseloads for these services are quite large and seem to be getting bigger, there are little time to prepare for sessions and they are often afraid that some kids get may get missed. ( and here)
- Other Concerns of theirs are when the diagnosis is given and how it is given. From the statements above it is presented that sometimes doctors also have difficulties presenting a diagnosis and other time some doctors may just give the families a piece of paper with the diagnosis and then contact numbers to services without a conversation… Lastly some of the concerns and barriers presented leads up to community workers wanting a collaborative relationship with doctors so that they can help these parents through this journey as best as possible and this is seen through the statement “ it going to have to be a collaboration between the dotors, the workers in supporting all these families and provide the services.. But also making sure the news are being deliver at the right time
- The most prevalent themes will indicate the common challenges and concerns and raises insight to area of improvement regarding the access to services and developmental assessments Reveals the disconnection between community workers and doctors and how it impacts the support for families with children with DD The need for a comprehensive assessment and integration of services and professionals Limitation 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
- In conclusion, through the focus groups the biggest theme was community worker is that they would like a more holistic approach to supporting children with DD. This entails supporting and educating the families of children with DD, integrating all services include health services that are offered for children with DD, and lastly, making resources accessible by providing more resources so that there isn’t a long wait list. Therefore, our role is to establish a platform that allows community agency worker and health professionals can worker together to support children with DD and their families and hopefully then those concerns will be addressed