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Educational Workshops for Parents Enrolled in UIC’s Division of Specialized Care for Children

Background

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  • Parents are responsible for managing emergencies, performing medical procedures, and coordinating the care of their children & parents need to be better prepared and supported to take on these responsibilities
  • Other challenges include: new responsibility as parents, advocating for the child and fighting the system, impact on day-to-day life, lack of sleep, impact on siblings, and support of parents (Page et al., 2020)
  • DSCC provides services to 18600 Families in Illinois (DSCC 2020 annual report)
  • DSCC provides excellent help in every step, parents still need support to care for their children, cope with any resulting challenges, and access the systems and services that can assist them
  • Parents of children with complicated needs reported feeling unsupported, helpless, and a lack of information in regards to helping their child's complex needs (Zortec & Pop-Jordanova, 2020)
  • Supporting siblings, respite care, out-of-hours, psychiatric, home, and educational support were all unmet needs (Gill et al., 2020)
  • Parents ranked the top three challenges in their lives as (Zortec & Pop-Jordanova, 2020):
  • Need to improve health care services
  • Education services ( Parents report the bulk of their knowledge was from the internet)
  • Social support ( respite care and finding support groups)

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Samantha Lieven MSN, RN, Mary Griffith MSW, & Ghada Abdalla MSW

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Parents of children with special health care needs encounter information that they may not understand, emotions they may not know how to cope with, and questions about their child's immediate and long-term future that frequently lack answers.

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Project Objective

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  • What:To develop and implement an Educational Workshop Series for families of children with chronic conditions which require specialized care
  • Who: Parents enrolled in UIC’s Division of Specialized Care for Children program (DSCC)
  • What: Virtual (Zoom) workshops on topics of interest identified from community surveys
  • When: Every 3rd Wednesday of the month from November 2021-April 2022
  • Data Collection: Post session surveys for evaluation of quality of session

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Key Findings

  • Parents felt supported and provided positive feedback on the workshop sessions
  • Changing the time from 5pm to 7pm worked better for families
  • Having guidelines for the group discussion & session worked best for presentation and discussion
  • Having a DSCC staff member, spanish translator & trained mental health staff aided in supportive conversation
  • Topics Presented: Navigating the COVID19 Pandemic, Applied Behavioral Therapy, Early Intervention, & Transitioning to Adulthood

Post Survey Results

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What did you learn from this workshop session?

  • Great tips and resources about advocating for school services.
  • School re entry timing, school nursing IEP requirements
  • How to advocate for my child.
  • ABA is not about changing the person but changing the environment.
  • That there are others who are in the same situation and had the same concerns
  • My son’s rights

“Very excited for these workshops and the support group component. THANK YOU for doing this for our group”

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Recommendations and Implications

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  • Continue the workshop series and provide ample time for supported, facilitated discussions

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  • Identify a new evaluation tool to provide us with better feedback on how our sessions improved the lives of participants

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  • Create a support group for discussion only associated with the workshop

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Checkout our Website

https://sites.google.com/view/educationalwebinarseries/home

Check

this

OUT

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References

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Gill, F. J., Hashem, Z., Stegmann, R., & Aoun, S. M. (2020). The support needs of parent caregivers of children with a life-limiting illness and approaches used to meet their needs: A scoping review. Palliative Medicine, 35(1), 76–96. https://doi.org/10.1177/0269216320967593

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Page, B. F., Hinton, L., Harrop, E., & Vincent, C. (2020). The challenges of caring for children who require complex medical care at home: ‘The go between for everyone is the parent and as the parent that’s an awful lot of responsibility.’ Health Expectations, 23(5), 1144–1154. https://doi.org/10.1111/hex.13092

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Who We Are. (n.d.). UIC Specialized Care for Children. https://dscc.uic.edu/who-we-are/

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Zorcec, T., & Pop-Jordanova, N. (2020). Main needs and challenges of parents of children with Autism Spectrum Disorder. Prilozi (Makedonska akademija na naukite i umetnostite. Oddelenie za medicinski nauki), 41(2), 81–88. https://doi.org/10.2478/prilozi-2020-0036

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