What is Pediatric Palliative Care, Really?
Learn more about pediatric palliative care by watching this video from Courageous Parent's Network. This is a non-profit organization and educational platform that orients, empowers and accompanies families and providers caring for children with serious illness.
Visit the Courageous Parent's Network website at www.courageousparentsnetwork.org.
Online Resources
The following websites are recommended by Dr. Patti as resources for parents and caregivers.
- American Academy of Hospice and Palliative Medicine
AAHPM is the professional organization for physicians specializing in hospice and palliative medicine, nurses, and other healthcare providers.
Visit the AAHPM website at www.aahpm.org. - Children's Healthcare of Atlanta (CHOA)
CHOA delivers exceptional care to Georgia’s pediatric patients and those with complex illnesses from around the world. Through clinical care, education, and research, CHOA’s purpose has always been to make kids better today and healthier tomorrow.
Visit the CHOA website at www.choa.org. - Georgia Hospice & Palliative Care Organization
GHPCO promotes quality hospice and palliative care throughout Georgia by providing information, education, and advocacy
Visit the GHPCO website at www.ghpco.org. - International Children's Palliative Care Network (ICPCN)
The ICPCN's mission is to achieve the best quality of life and care for children and young people with life-limiting conditions, their families and carers worldwide, by raising awareness of children's palliative care, lobbying for the global development of children's palliative care services, and sharing expertise, skills and knowledge.
Visit the ICPCN website at www.icpcn.org. - Passport for Care
The Passport for Care is a free online resource tool for survivors of childhood cancer (including patients who received a bone marrow transplant). The Passport for Care allows survivors to easily access their treatment summary and long-term follow-up care recommendations.
Visit the Passport for Care website at www.passportforcare.org. - The Songs of Love Foundation
The Songs of Love Foundation is a national nonprofit 501(c)(3) organization that creates free, personalized, original songs to uplift children and teens currently facing tough medical, physical or emotional challenges. Visit the Songs of Love website at www.SongsOfLove.org. - Understanding the Sibling Experience
A collection of educational videos from Courageous Parent's Network.
Visit the Courageous Parents Network - Understanding the Sibling Experience website at www.courageousparentsnetwork.org/video-library/other-children-siblings. - Wellstar/MCG Health System
Through a transformative partnership with Medical College of Georgia (MCG), Wellstar plans to revolutionize health care and enhance the well being of communities around the state of Georgia. The partnership will facilitate delivery of high-quality care, education, and research to make an impact on the lives of Georgians.
Visit Wellstar's website at www.wellstar.org.
Support
- Kate Christman, LCSW, PMH-C
Kate Christman is a licensed clinical social worker who provides counseling for new and expectant parents and parents of children with medical special needs. She is passionate about supporting individuals and couples through the transitions of pregnancy, birth, and parenthood. Sessions are available in person and on- line.
Visit her website at katechristmanlcsw.com. - Lanise Shortell, RN, HPNA, CHPPN
Lanise is the Director of the Pediatric Program at Harbor Grace Hospice. She is a board member of the Elizabeth Kubler Ross Foundation and engages globally as an educator on bereavement. She is a registered yoga teacher at the 500-hour level. Visit her profile at linkedin.com/in/lanise-shortell-rn-pediatric-clinical-care-nurse-specialist-b38a4320. - FOCUS
FOCUS is a 501(c) 3 organization that embraces and equips families of children with disabilities to make everyday life better. Children participating in FOCUS range in age from birth through 29 years old and have varied physical and/or developmental disabilities, including rare genetic syndromes, cerebral palsy, autism, and Down syndrome. FOCUS families are racially and ethnically diverse and share the common bond of having children with significant health challenges in their lives.
Visit the FOCUS website at focus-ga.org. - Hearts Connected, LLC
Hearts Connected has the mission to help children cope, grieve, and heal. Founder DD Fritch, a pediatric nurse, and her team of child life specialists have a desire to bring the services that are typically available in a pediatric hospital to patients, families, and organizations all over the United States. Their creative strategies are available in person and on-line.
Visit the Hearts Connected website at heartsconnected.org. - H. E. A. R. T.strings Perinatal Palliative Care Program at Northside Hospital in Atlanta
The H.E.A.R.T.strings Program cares for families that have been given a life-limiting diagnosis for their unborn child and have made the decision to continue their pregnancy. The team would be honored to be a support to you on this journey during your pregnancy and beyond. Parents who have carried to term report that the experience of the diagnosis is the hardest part of the journey – even if the birth results in loss. Please take a moment to explore the sections in the website below and submit a form if you would like to receive more information about the program.
Visit the The H.E.A.R.T.strings website at https://www.northsidepnl.com/heartstrings-perinatal-palliative-care-program.html - Kate's Club
Kate's Club empowers children and teens age 5-18 facing life after the death of a parent, sibling, or caregiver. Their vision is a world in which "it's ok to grieve." Through free activities that promote healing, self care, and memory making of loved ones, Kate's Club has served over 6500 families since its founding in 2003. The Director of Clubhouse Services is Debra Brook.
Visit their website at katesclub.org. - Lekotek of Georgia
Lekotek of Georgia facilitates the successful inclusion of children with disabilities into their families, schools, and communities through adapted toys, technology, and resources. Since 1983 they have helped over 7000 children in Georgia become empowered through play. The program encompasses 6 locations. Scholarships are available and no child is turned away for lack of funds. The Exective Director is Helene Prokesch, a former special education teacher. Visit their website at www.lekotekga.org.
Informational Documents
- American Academy of Pediatrics
- National Hospice and Palliative Care Organization
- World Health Organization
Integrating Palliative Care & Symptom Relief Into Paediatrics