Pediatric Parent Advisory Committee
The true essence of family-centered care is understanding that parents are the experts on their child. The Lynda P. Bollman Pediatric Program attempts to embody this understanding by having our Parent Advisory Committee involved in programming. Our Parent Advisory Committee meets bi-weekly to review trends in hospice and palliative care at state and national levels, identify ways to support patients and families throughout their journeys, prepare training and parent support groups that provide families with space for emotional support and peer focused education.
The Pediatric Parent Advisory Committee is comprised of seven parents that have been affected by childhood cancer or medical complexities across a life span. They are knowledgeable in the experience of having a child obtain a terminal or life-limiting diagnosis, extensive and overwhelming hospitalizations, parenting siblings and maintaining personal responsibilities such as having to leave work, managing medical bills, changes to social network, lack of sleep, and more, while tending to a medical complex child, and the emotional distress associated with the entire experience.
The members of the Pediatric Parent Advisory Committee are Carissa Belasich, Iyonna Wright, Rachel Singleton, Krystal Myers, Raquel Cahill, Kaycee Jakubowski and Elenor Clark.
We are excited to have their immense knowledge and strong voices within the program.
Pediatric Hospice and Palliative Care Parent Support Group
With over 22 years of experience of the Pediatric Parent Advisory Committee members navigating hospitals, primary providers, governmental systems, family relationships, and internal distress associated with caregiving, HAP believed it important to have a forum to support parents, caregivers, and their families navigate the turbulent terrain of raising a child with medical complexities and/or childhood cancer. All are welcome to join the monthly, virtual support group for parents of children with childhood cancer and/or medical complexities or if you are experiencing caregiver strain, wish to learn from other parents how they navigated the medical system or other life needs, explore self-care, discuss advance directive planning, learn more methods for academic advocacy, or more.
Parent Advisory Committee members will facilitate conversations on experiences, from a parent perspective, that could bring knowledge, reprieve, and/or support to families in similar situations. HAP is interested in learning more from participants and collaborating with other parents to ensure all kids and families in Illinois are receiving the services and support necessary to improve patient/family quality of life. This is an open group so new participants are welcome anytime.
Learn more about this month’s support group here
THE HAP FOUNDATION’S Lynda P. Bollman Pediatric Hospice and Palliative Care Parent Support Group