Complex Care Webinar on Supporting Caregivers:
A Family-Centered Research Agenda for Supporting Caregivers of
Children with Special Health Care Needs.
REGISTER NOW
Tuesday, February 15, 2022 at 10 a.m. PST (1 p.m. EST)
Family caregivers are the foundation of the pediatric health care system. However, many gaps exist in the support that is available to caregivers, due to low visibility of their work and impact within the healthcare system. Family leaders and researchers from across the country have partnered to develop a national research agenda focused on improving the health care system for children and youth with special health care needs (CYSHCN). Their newly published article titled "Understanding Caregiving and Caregivers: Supporting CYSHCN at Home" found at https://www.lpfch.org/publication/understanding-caregiving-and-caregivers-supporting-cyshcn-home, is one in an eight-part series to be published as a supplement to Academic Pediatrics.
In this webinar, the article’s authors will discuss the necessary and integral role of family caregiving, describe their study's findings, and reflect on the implications of their recommendations. We suggest that attendees read the article prior to the webinar.
This work is led by the Children and Youth with Special Health Care Needs Research Network (CYSHCNet), which was founded in 2017 through a cooperative agreement with the Health Resources and Services Administration’s Maternal and Child Health Bureau. Speakers
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Conversation about Grief support
Join Michigan's Child Palliative Care Coalition Bereavement Committee for a conversation about Grief Support. Discuss the who, what, where, how and why of grief support for parents!
 February 17, 2022 ~ 4:00pm – 5:00pm
Open to Parents and ProfessionalsTo participate, please contact a member of the Children’s Palliative Care Bereavement Committee:
Ayanna Eggleston, 517-335-8551; Toula Saratsis, 734-604-8756; Jacqueline Morris
Zoom meeting invitation will be sent upon RSVP.
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The Challenges of Organizing Medical Data
February 15, Noon - 1:00 pm EST
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We know there are many stressors that families with children with medical complexity face every single day. But one that doesn’t often get spoken about is the challenge of organizing medical data.
Children with medical complexities frequently see multiple specialists and are sometimes traveling to more than one hospital or medical center for care. They may also have care providers in the home or school setting that are supporting them. Families are tasked not only with sharing their stories over and over, but also trying to remember critical health data points, medication names and doses in addition to important contacts in their child’s care.
With this in mind, during this Firefly Chat session, we will talk with both a provider and caregiver about their experiences in trying to improve organization of medical data for their child and/or patients. Challenges and successes in this process will be highlighted. During this discussion, we will highlight two tools that the Pediatric Palliative Care Coalition has worked to create to support families in their medical journey including the Care Plan Book and the Lightning Bug App.
Firefly Chats are presented by the Pediatric Palliative Care Coalition for an interactive virtual discussion that explores issues facing the community of families and medical professionals caring for children with complex medical needs.
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An Interdisciplinary Approach to Delivery of Culturally Humble Care
February 24, 3:00 p.m. EST
Learn More and Register
This talk is an interdisciplinary approach to cultural humility in clinical care. You will learn from a palliative physician, interpreter, and chaplain about all aspects of care for patients and families who are from diverse backgrounds.
PPCC (Pediatric Palliative Care Coalition), GIPPCC (Greater Illinois Pediatric Palliative Care Coalition), CHPCC (Children’s Hospice & Palliative Care Coalition of California), and the CSU Shiley Haynes Institute for Palliative Care have collaborated to offer the PPC Webinar Series to raise the visibility of pediatric palliative care and to build clinicians’ competencies and confidence.
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 CHARLIE WALLER LEGACY FUND
Charlie Waller was only 5 years old when he passed away in 2013 from a malignant brain tumor. In his memory, his family created the Charlie Waller Legacy Fund to provide financial assistance to families facing financial difficulties as a result of having a child with a life-limiting condition or who have had a child die of any cause. Learn more about Charlie and his legacy fund here.
You can help us keep us continue to help these families by making a donation. Many families have been helped so far and it's made a world of difference.
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If you're not already a member, or haven't had a chance to pay your 2021-22 dues, you can do so now by clicking here.
Your support helps CPCC continue our mission of advancing compassionate, comprehensive care of children with life-limiting conditions. Donations are also very appreciated.
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