Caregiver Connect Modules
DSF has long recognized the many needs within our patient community, particularly the burden of caregivers. It is a lot of work, mentally and physically. Our caregiver community frequently talks about feelings of isolation, depression about the diagnosis, and anxiety over what their child’s future looks like. On top of that they are overworked and exhausted in managing their child’s medical, educational, and emotional needs. They are left with little or no down time when they can relax, rest, or have fun.
Caregiver Connect is a unique program with a focus on helping families manage the caregiver burden and stress that accompanies caring for a child with a rare epilepsy who has complex lifelong medical needs. These modules share the experiences of other caregivers, as well as useful tip sheets. This program is designed to help parents manage and cope with the ongoing demands and stress they face on a daily basis. The modules are broken down into four important topics: Taking Care of the Caregiver; Caregiver Burnout; Communicating Emotions, Needs & Concerns; and Managing Grief. Each module offers multiple videos that you can watch on demand, as your schedule allows, as well as a coordinating tip sheet.
In collaboration with DSF, Caregiver Connect was developed by The Center for Pediatric Traumatic Stress at The Children’s Hospital of Philadelphia and Nemours Hospital for Children, Delaware. This program is fully funded through a generous educational grant from  
Part 1: Finding your support system and allowing for the grief process
Part 2: Practice self care and refill your tank
Part 3: Controlling your frustration
Taking Care of the Caregiver Tip Sheet (PDF)
Caregiver Connect 1-1: Finding Your Support System
Caregiver Connect 1-3: Controlling Your Frustration
Part 1: Chronic traumatic stress and PTSD
Part 2: Don’t take it personally
Part 3: Your mental health
Caregiver Burnout Tip Sheet (PDF)
Caregiver Connect 2-1: Chronic Traumatic Stress – PTSD
Part 1: Communicating with your loved ones
Part 2: Asking for help
Part 3: Maintaining relationships
Part 4: Sibling care
Communicating Emotions, Needs & Concerns Tip Sheet (PDF)
Caregiver Connect 3-1: Communicating With Your Loved Ones
Part 1: What to do when it feels like everything is falling apart
Part 2: Allowing yourself to grieve
Part 3: Managing reactions in relation to your family’s situation
Coping with Loss & Grief Tip Sheet (PDF)
Caregiver Connect 4-1: What To Do When it Feels Like Everything is Falling Apart
Caregiver Connect 4-2: Allowing Yourself to Grieve
Meet the Facilitators
The Center for Pediatric Traumatic Stress at The Children’s Hospital of Philadelphia and Nemours Hospital for Children, Delaware
Anne Kazak, PhD, ABPP
Kimberly Canter, PhD
Katherine Okonak, LSW
Gabriela Vega, MS
Meet the Families
Caregiver Connect: Meet the Families - Hunton Family
Caregiver Connect: Meet the Families - Lauren Forker
Caregiver Connect: Meet the Families - Maryanne Houser
Caregiver Connect: Meet the Families - Beth Fullam
Caregiver Connect: Meet the Families - Michaels Family
Caregiver Connect: Meet the Families - Shapiro Family
Caregiver Connect: Meet the Families - Shawnee Walker
Caregiver Connect: Meet the Families - Tyler Page
Caregiver Connect: Meet the Families - Jenny Gallo & Dennis Sanderson
Watson Family Story - Dance Away Dravet