Families of children with complex health care needs have to navigate the transition of those care needs to the home setting. During this Firefly Chat, we talked with a clinician, home care nursing representative and family caregiver to openly discuss best practices as well as challenges families experience in receiving care at home. This session highlighted the importance of communication, interdisciplinary collaboration and strategies to best support patients and families.

Art Therapy is a valuable tool that often helps people explore emotions, develop self-awareness and cope with stressors. In this Firefly Chat, our panelists include a young adult patient who underwent transplant as a child, as well as the art therapist who supported their family.

‍Physician Orders for Life-Sustaining Treatment (POLST) forms are orders for life-sustaining treatment outside of the hospital setting. While these orders are more common and can feel straightforward for adults, there is often additional complexity for children, teens and young adults and their parents/legal guardians. In this FF Chat, our panelists highlight the importance and challenges of gathering information, working with the interdisciplinary team (IDT) and completing POLST documentation.

When a child with medical complexity becomes an adult, there are new and complicated systems to navigate. In this Firefly Chat, a parent will highlight what her family faced during the guardianship application process and transition out of pediatric based services. There will also be a discussion about decisions, sources of support/resources and challenges that families may face.

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.