PAST RESOURCES

Medical Complexity Caregiver ECHO (Spring 2023)

This ECHO series focused on supporting parents and caregivers of children with medical complexity. We discussed parent/caregiver wellbeing, support when struggling, and communication on sensitive topics. This series was led by a clinical psychologist and parent team.

Watch the Full Series on YouTube

  • Session 1 - Caregiver Wellbeing (March 9, 2023 )

    Key Takeaways: 

    • Parents and caregivers of children with medical complexity are at higher risk for mental and physical health concerns.
    • Parents and caregivers of children with medical complexity face complex stressors and medical trauma.
    • There are supports available to help parents and caregivers of children with medical complexity.

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    Watch Recording


    View Wellbeing Resources

  • Session 2 - Identifying and supporting caregivers who are struggling. (March 9, 2023)

    Key takeaways: 

    • Red Flags for caregivers experiencing distress may be obvious or subtle.
    • Starting a conversation can be as simple as asking a question and spending a few minutes listening.
    • Different resources may be helpful for different caregivers.

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    Watch Recording


    Short video (5 minutes): 

    How to respond to a caregiver supportively

  • Session 3 - Challenging communications and conversations (April 13, 2023)

    Key Takeaways: 

    • High stakes, strong emotions, and potential opposing opinions can make communication challenging.
    • Shared decision-making is an interactive collaborative process where all parties participate and together arrive at a treatment plan.
    • Components of communication to keep in mind:
    1. What we say
    2. The words we use
    3. How we say it
    4. The delivery method
    5. Listening
    6. Humble inquiry 
    7. Responding

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    Watch Recording


    Suggested reading: 

    • Patterson, K., Grenny, J., McMillan, R., & Switzler, A. (2002). Crucial conversations. McGraw-Hill Contemporary.
    • Douglas J. Opel; A 4-Step Framework for Shared Decision-making in Pediatrics. Pediatrics November 2018; 142 (Supplement_3): S149–S156. 10.1542/peds.2018-0516E
    • Richard C. Adams, Susan E. Levy, COUNCIL ON CHILDREN WITH DISABILITIES; Shared Decision-Making and Children With Disabilities: Pathways to Consensus. Pediatrics June 2017; 139 (6): e20170956. 10.1542/peds.2017-0956
    • Schein, E. H., & Schein, P. A. (2021). Humble inquiry: The gentle art of asking instead of telling. Berrett-Koehler Publishers.