28 Sep Caregivers of Children with Serious Medical Conditions: New Resource Available
The National Alliance for Caregiving has developed a new guidebook for caregivers of children with serious medical conditions! Learn what’s in the guidebook and about other resources the organization provides.
In 2018, the National Alliance for Caregiving (NAC) surveyed 1,406 family caregivers caring for an adult or child with a rare and/or serious condition. Rare Disease Caregiving in America found that 62% of those surveyed were caring for a child and the caregivers needed specialized knowledge to provide care.
In turn, a new resource was created: The Circle of Care Guidebook for Caregivers of Children with Rare and/or Serious Illnesses. This guidebook, designed in partnership with Global Genes and with support by Mallinckrodt Pharmaceuticals, is meant to assist caregivers throughout their journey.
To help inform this work, focus groups were held with caregivers of children with rare and/or serious illnesses. Participants came from various backgrounds and identified the areas where they needed the most information and support.
What’s in the latest Guidebook?
The guidebook is written by caregivers and those in the rare disease space. It acknowledges some of the challenges and common experiences that caregivers of children with serious medical conditions may face.
The guidebook covers a wide range of topics and offers a variety of different resources pertaining to:
- Accurate diagnosis
- Genetic testing
- Selecting treatment and care teams
- Financial costs
This new guidebook for caregivers of children with serious medical conditions is the third edition of NAC’s Circle of Care series, which aims to support the production of resources for family caregivers of those with specific health conditions. Previous guidebooks include: Circle of Care: A Guidebook for Mental Health Caregivers and Circle of Care: A Guidebook for Caregivers of Children and Adolescents Managing Crohn’s Disease.
About the National Alliance for Caregiving
The National Alliance for Caregiving’s mission is to build partnerships in research, advocacy, and innovation to make life better for family caregivers. Our work aims to support a society which values, supports, and empowers family caregivers to thrive at home, work, and life. As a 501(c)(3) charitable non-profit organization based in Washington, D.C., we represent a coalition of more than 60 non-profit, corporate, and academic organizations; nearly 40 family support researchers with expertise in pediatric to adult care to geriatric care; and more than 50 advocates who work on national, state and local platforms to support caregivers across the United States.
In addition to our national work, NAC leads and participates in a number of global meetings on caregiving and long-term care, working closely with peer organizations in countries such as Australia, Canada, Denmark, Finland, France, Hong Kong, India and Nepal, Ireland, Israel, Japan, New Zealand, Sweden, Taiwan, and the United Kingdom.
About Triage Cancer
Triage Cancer is a national, nonprofit providing free education to people diagnosed with cancer, advocates, caregivers, and health care professionals on cancer-related legal and practical issues. Through events, materials, and resources, Triage Cancer is dedicated to helping people move beyond diagnosis. For more information about Caregiving, please visit TriageCancer.org/caregiving.
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