Caregiver Support Toolkit

The Sickle Cell Foundation of Tennessee created this Caregiver Support Toolkit because we listened. We sat with caregivers — parents, grandparents, aunts and uncles, partners, siblings — and we asked them what they actually needed. Not what we assumed. Not what looked good on paper. What they needed.

What we heard was clear:

  • They needed someone to help them talk to their children about the hard questions — the “why me” questions — without saying the wrong thing.

  • They needed tools that worked at midnight in a hospital room, not just during business hours at a desk.

  • They needed to know that their own mental health mattered. That burning out wasn’t a personal failure. That asking for help was an act of strength, not weakness.

  • They needed to find their people — whether that meant a faith community, a support group, or simply one other person who understood.

  • And they needed guidance for the moments that no one prepares you for — like the day your child turns 18 and the pediatric team you trusted for years hands you a business card and wishes you well.

This Caregiver Support Toolkit was built around every one of those needs.

MENTAL HEALTH SUPPORT

CAREGIVER BURNOUT

TRANSITION TO ADULT CARE

DIGITAL TOOLS

FAITH & COMMUNITY

SELF-CARE FOR CAREGIVERS