The PPCC Firefly Chat is a series of interactive virtual discussions with parents and professionals - FREE of charge - that explore issues facing the pediatric palliative and hospice care community.
Latest Firefly Chat:
Care Mapping for Children with Medical Complexity
Click HERE to view the recording.
Click HERE to read highlights from the FF Chat.
To help "light the way" for families, caregivers and care providers, consider a donation to PPCC to help fund the Firefly Chat Series. Donate HERE.
Take a moment to think about a child with medical complexity and all of the systems with which the child and family must interact and navigate. This long list can include hospitals, medical and non-medical specialists, insurance companies, social security, schools and many more. Now imagine how overwhelming this can be for families and caregivers.
In this Firefly Chat, PPCC moderator, Dana Dombrowski. and presenter, Pam Hathaway, will explore the concept of Care Mapping and how this can help families/caregivers embrace a wider circle of services and create positive connections and interactions. In addition, Pam will share her experiences with her own children and foster children and her work in the foster care system.
Presenter:
Parent Presenter: Pam Hathaway, Mom, Foster Mom, Supervisor - Partners in Parenting, Berks County, PA
Pam Hathaway and her husband, Mark, live in Reading PA and are the proud parents of 14 children. Pam and Mark have been medical foster parents for over thirty years and have cared for children that have been connected to pediatric palliative/hospice care programs. Pam also has the unique opportunity to interact with medically fragile children through her position as a supervisor of the Partners in Parenting program. This program falls under the umbrella of Berks County Children and Youth. In this role, Pam supports biological families of medically fragile children to help keep them in their homes and also supports foster parents as they struggle to understand the complex needs of the children placed in their care.
Pam says, "I am so thankful to have the opportunity to support the families I work with because I have walked this road, too. Until you walk this road as a parent/caregiver, you can never truly understand how exhausting and lonely this journey can be."
Moderator:
Dana Dombrowski, MSW, LSW - Social Worker and Psychosocial Program Coordinator at The Children’s Hospital of Philadelphia
Dana Dombrowski graduated from the University of Connecticut in 2003 with a BS in Family Development and a minor in Sociology. She went on to attend graduate school at the University of Pennsylvania where she received her Master’s degree in Social Work in 2005. Upon completion of this program, she obtained her LSW and was hired by The Children’s Hospital of Philadelphia as a Pediatric Oncology Social Worker. She worked in that position specializing in patients with a terminal cancer diagnosis, grief and loss for over 8 years. In 2013, Dana joined CHOP’s palliative care team (PACT Team) as a social worker and the psychosocial program coordinator.
The concept of Care Mapping is discussed and how this can help families/caregivers embrace a wider circle of services and create positive connections and interactions. In addition, our presenter shares her experiences with her own children and foster children and her work in the foster care system.
Join our panelists as they highlight how perinatal palliative care can be the beginning layer of support for families as they navigate their child’s medical journey. Our panel will share their experiences in perinatal palliative care and offer insight and practical suggestions for creating an atmosphere of open communication and honest discussions to develop individualized care plans.
A board certified chaplain, licensed social worker and bereaved parents dialogue about the importance of addressing spirituality at end of life. This Firefly Chat focuses on the importance of offering spiritual support to all individuals and those who identify as “not religious".
Learn more about the Collaborative Filmmaking Project and how 5 families shared their grief and bereavement experiences in their own unique ways.
Each of 5 participants created a short film that celebrated the legacy of their child and explored a range of key topics related to their grief journey and experience navigating palliative care for their child. The films illustrate various elements of the grief journey, which are unique for each family.
Making arrangements at the end of a child's life is something that is approached differently by every family and caregiver. Our host and panelists share their experience talking with different families, illuminating the incredibly diverse ways in which people plan, prepare for, and memorialize when a child's death occurs.
Joy isn’t the first word that most people associate with pediatric palliative care, but it is a powerful part of the experience for many families. We hear from parents and caregivers as they explain how they identified, captured, and experienced joy as a part of their child’s medical journey.
Caring for a child with medical complexities can be stressful, overwhelming and challenging. While traditional medicines are often the first-line of treatment, the use of alternative therapies and supports are becoming more readily available. Listen to a Recreation Therapist and a Massage Therapist who help care for children with medical complexities both in the hospital and home setting.
Palliative care and end-of-life care for children focuses on the whole family including siblings. Parents and medical professionals often worry that siblings “get lost” during the illness. Hear a palliative care provider and a bereaved sibling explore how the death of his brother affected him and his family.
Children with medical complexities frequently see multiple specialists and are sometimes traveling to more than one hospital or medical center for care. 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. This chat highlights strategies for organizing medical data.
For many who are grieving the loss of a child, celebrating the holidays can be even more challenging and stressful. As with the grief journey, what one person finds comforting may not work for all. In this Firefly Chat we talk with a family about their experience honoring their child who passed, navigating their grief and managing the “expectations” over the seasons.
Presentation Materials
Presentation Materials
Mindfulness/Gratitude Practices
What is it really like caring for a medically complex child in your home? Learn directly from the parents living the experience how to best support and help families in this very unique situation.
PPCC is not a health care provider and does not give medical advice or treatment. PPCC does not endorse or recommend any listed facilities, service providers, or support groups herein. PPCC offers the list and information as a resource only. PPCC does not pre-evaluate, or consider the Medicare/Medicaid status of the providers.
The Pediatric Palliative Care Coalition is a registered 501(c) (3) not-for-profit organization. Donations are tax-deductible according to the IRS’s rules and regulations. The official registration and financial information for PPCC may be obtained from the Pennsylvania Department of State by calling toll-free within Pennsylvania 1-800-732-0999.