WHAT'S MISSING? resources for the caregivers of chronically ill children...
THERE ARE FEW RESOURCES FOR THE CAREGIVERS OF CHILDREN LIVING WITH SPECIAL HEALTH NEEDS. Those that exist are spread out and difficult to find...
There are 11-million children in the United States who live with chronic, and often painful and disabling, health conditions. The experience of living with a chronic illness often results in stress and trauma that put the entire family at risk for poor quality of life, diminished mental and physical well-being, and social isolation- for each child living with that illness there is a web of caregivers, parents, providers, family members, and friends caring for those children. Few resources exist to support these caregivers. The well documented disparities in health care impact not just the children who are ill but also their caregivers as well. Caregiver wellness, health literacy, and navigation skills play a critical role in the health outcomes of children who are chronically ill.
Kids & Caregivers is addressing these challenges
WE address the need using four key strategies:
Strategy #1: a CAREGIVER NAVIGATION hub
CREATING A CAREGIVER-TO-CAREGIVER NAVIGATION PROGRAM BASED ON A SUCCESSFUL PARENT NAVIGATION HUB MODEL.
Caregivers need specialized skills and tools to successfully navigate the fragmented system and silos of care that comprise the chronic and complex illness continuum of care. By creating a parent navigation hub, in partnership with local children's hospitals and programs, parents and caregivers are able to get critically needed peer support and the tools needed to successfully coordinate and map care, link services, and access care. The hub model leverages the successes of existing peer health programs and parent navigation programs to ensure an inclusive and effective approach to caregiver support.
Strategy #2: CAREGIVER-TO-CAREGIVER SUPPORT & MENTORING
peer mentoring, parent-to-parent coaching, peer groups, circles of connection, and online support and matching with fellow caregivers
"IT IS SO HARD TO EXPLAIN HOW REAL THE STRUGGLE IS UNTIL YOU SEE YOUR CHILD GO THROUGH DIFFICULT TIMES... YOU ARE DEFINITELY EDUCATING THE PARENTS AROUND THE WORLD HOW TO GO ABOUT GETTING THESE CHILDREN THE HELP THEY DESERVE. WE LOVE YOU FOR THAT."
Current activities include: one-on-one caregiver mentoring and support, face-to-face circles of support, online caregiver support groups, parent-peer support -onboarding and support for clinical trials and procedures, information, and peer-to-peer networking. Basically, a "What to Expect, When the Unexpected Happens..."
Strategy #3: CAREGIVER/PROVIDER EDUCATION & ADVOCACY
"We have been practicing swallowing mike & Ike’s but cut in half. They said the pill is the size of an adult ibuprofen. She will need to take 2 of them. So I went out bought all the candy on your list -lol- and measured the closest one. Actually I sent it to the Children’s Hospital and they were impressed because they didn’t have any ideas for us. So I told them about you"
We harness and curate best practices and research and share them through online modules and face-to-face workshops. Our workshops provide evidence-based and integrative approaches for families, caregivers, and providers.
Our program model recognizes that the entire system of care needs support and caregivers need training to be advocates. Providers and caregivers need to work together to have best-practices vertically integrated throughout the system of care - from patient to policy. We work with peer groups to improve skills, apply research, increase access to information, and to create networks of care. We work with patients, families, caregivers, providers, and institutions. We are particularly committed to ensuring that low-income and other vulnerable caregiver communities have access to resources and support.
communitas & Kids and caregivers collaborating with medical facilities, patients groups, and provider education programs.
Strategy #4: CAREGIVER WELLNESS ACTIVITIES AND Advocacy PROGRAMS
"YOU HAVE BEEN A HUGE MENTOR THROUGH THIS JOURNEY WITH ME AND YOU KNOW HOW IT CAN SUCK THE LIFE OUT OF YOU WHEN YOU FIGHT SO HARD AND FEEL LIKE YOU ARE GETTING NO WHERE. I WILL NEVER FORGOT THE WORDS YOU TOLD ME. “STAY STRONG AND NEVER GIVE UP, WE AS PARENTS NEED TO ADVOCATE FOR OUR CHILDREN”. I COULDN’T OF DONE THIS WITHOUT YOU."
From self-care to squad-care we are providing an integrative approach to caregiver wellness .
We recognize that the caregivers and families of children with special health needs have their own wellness and health needs. We are partnering with leaders in mind-body and integrative family medicine to create wellness activities and practices that are accessible, effective, and relevant. Our vision is to have caregiver wellness activities and resources linked to the navigator hub - so while caregivers are learning the skills needed to successfully navigate their child's illness- they are accessing wellness resources targeting their own health needs as caregivers.
Learn more about current caregiver wellness programs offered through communitas at the Osher center
KIDS & CAREGIVER WAS FOUNDED BY THE MOTHER OF TWO children with special health needs AND A ROBUST TEAM OF ADVISORS AND SUPPORTERs.
Together we have created a project to address the pervasive need for support and wellness resources for the caregivers of children with special health needs. Based on the successful Communitas model these programs provide mind-body wellness activities for caregivers and a continuum of support for advocacy ranging from the bedside to the where policies are made and implemented.
We are a project of Commonweal who we gratefully acknowledge for ongoing support and guidance. A key wellness program partner is Communitas and Kids & Caregivers has a key advocacy partnership with the California Children's Trust.