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Identifying resources for families caring for children with medical complexities or life limiting illnesses can be overwhelming. Join us for this webinar to learn about programs, services, resources and more. Families and clinicians - register today for our lunch and learn webinar on June 6 at noon.

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ADVOCACY UPDATE

 

At our November 2023 Annual Conference, representatives of Michigan's Children's Special Health Care Services updated the participants on the progress toward finalizing the program called "Targeted Case Management" for children with medical complexity.  This program has been a priority of our coalition's advocacy efforts for several years and is on the path for adoption.  It will enable the expansion and creation of improved services and care management for hundreds of our state's children who have multiple medical and surgical sub-specialists and frequent hospital stays.

UPDATEWelcome news for Michigan Families that Children’s Special Health Care Services program eligibility expanded to age 26. Visit this website to learn more.

ABOUT US

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RESOURCES

Learning that your child has a life-limiting illness can be devastating. It can be confusing and overwhelming to begin to understand what you may need medically and emotionally. Navigating the system along with your own feelings can be challenging and frustrating. Many parents want to seek out as much information as possible.

Our hope is the resources below are helpful to you.

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IN THE NEWS

It Takes a Village: Care Coordination Between Pediatric Palliative Care and Primary Care
Advances in Family Practice Nursing, Science Digest 
Authored by CPCC Board  Member Cheri Salazar RN, CPNP-PC/AC, CHPPN

Experiences of Music Therapy in Paediatric Palliative Care from Multiple Stakeholder Perspectives: A Systematic Review and Qualitative Evidence Synthesis.  A study published in the Sage Journal on Pediatric Palliative Care concerning music therapy concludes that, "Music therapy provides unique benefits for this pediatric population particularly in supporting child and family wellbeing. The therapeutic relationship, interpersonal skills of the therapist and experience in pediatric palliative care are perceived as central to these positive outcomes."


If you would like to learn more about music therapy, check out the webinar CPCC hosted in 2023 to learn more. https://www.childpalliative.org/webinars

Changing Pediatric Care for Medically Complexed Patients: Recognizing a significant gap between community emergency services and the care of medically complex children, the Hand in Hand Pediatric Palliative Care Team at Children's Nebraska, and the organization's Project Austin, collaborated to increase community emergency services awareness and education.

Palliative Care Has a Branding Problem - Changing How It's Perceived Can Break Down Silos. Author Amy Shaw, PA, highlights why palliative care needs to be discussed earlier and can support a patient in their disease journey, “If we moved palliative care away from its siloed space by embedding providers trained to give this type of support wherever patients are cared for, patient and caregiver quality of life would improve, end-of-life hospitalizations would decline, non-beneficial treatment would more easily be avoided, and patients and families would feel better taken care of and informed."

Pediatric Palliative Care Providers Seek to Improve Parental Engagement - Hospice News

Pediatric palliative care providers can sometimes struggle to engage parents and families. Parental engagement can be a difficult hill for pediatric palliative providers to climb. Families often contend with an array of competing practical, financial and medical obstacles related to managing a serious or life-limiting illness.

 

Hospices Must Leap Hurdles to Provide Pediatric Inpatient Care

Children and their families have limited access to pediatric hospice care in many areas in the US. “We developed these inpatient units for families to have a place to just be a family while seeking pain and symptom management,” Holly Davis, assistant vice president of clinical services of VIA Health Partners said. “To not offer these services is an injustice to families experiencing serious illness.”

Pediatric Palliative Care - Billing and Business Planning Toolkit
CAPC has released a Pediatric Program Billing and Business Planning with new resources that address the unique needs of pediatric patients. The new Pediatric Palliative Care: Billing and Business Planning toolkit provides guidance for designing a business plan and budget, navigating concurrent hospice care, and utilizing effective billing practices. Many resources in this toolkit are open to all.
University of Michigan's Mott named first ChildKind Certified Hospital in State

“Being the first ChildKind certified hospital in Michigan is a public testament to the incredible pediatric pain care that Mott provides and once again makes us stand out amongst our peers,” chief nursing officer at MHott and Von Voigtlander Women’s Hospital, Kelly Baird-Cox, said in a statement. “This exceptional achievement would not be possible without all of our teams working together to prevent and treat pediatric pain in new and innovative ways.”

Pediatric Palliative Care Underutilized in United States

Pediatric palliative care “is used to provide children suffering from life-impacting illnesses with specialized treatment, improving their quality of life.” But a recent study found that 1 in 5 hospitals are lacking access to such programs.

Terminally Ill Pediatric Patients Need Greater Access to Advance Care Planning
this recent Hospice News article about the need for pediatric patients to have access to advance care plans, Kristin James, executive director of the Greater Illinois Pediatric Palliative Care Coalition states that, “Talking to families about their options involves providers coming together and speaking the same language when it comes to advance care planning.”

Dying in Your Mother's Arms

Dr. Nadia Tremonti, Coalition Board Member, shares her work to make end of life better for families dealing with terminally ill children in this award winning documentary. 

View Other News Here

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