Lighting the way for children with medical complexity
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Pediatric life-limiting illnesses and medical complexity can create significant burdens and lifelong adaptations for children and families, with caregivers assuming a large increase in responsibilities. Advocacy accounts for a significant portion of this adjustment and a child’s caregivers often shoulder this undertaking in combination with their other responsibilities.
Discussions with children regarding their prognosis and diagnosis are very important as they help raise awareness, encourage cooperation, and empower children to self-advocate.
Early and effective disclosure of a diagnosis leads to reductions in anxiety, depression, fear, uncertainty, deceit, and risky behaviors. In addition, children often experience increases in quality of life, trust, treatment adherence and feelings of support.
Many caregivers discover that advocacy cannot be achieved alone and turn to others with similar experiences or professionals for support, because resources are often difficult to locate while they are fulfilling their other responsibilities.
"You are stronger than you think and smarter than you know. When faced with the challenges of caring for a child with medical complexity, you become the voice and lifeline to your child’s future. The most important thing to remember is that you know your child better than anyone else, even the medical professionals and specialists who work with your child. Your child needs you to be their advocate."
- Pam H. - Bereaved Mother and Foster Mother
Children need strong advocates to account for their limited control over their medical journey. It is also very beneficial to teach children to self-advocate.
It is extremely important to understand and respect that many children may wish to be involved with decision-making regarding their care while others may not. Never forget - if a child can form a questions about it, they should be able to hear the answer.
There are many reasons why pediatric patients experience trouble voicing opinions and preferences such as:
Click HERE to download Advocacy Guide for Caregivers document.
Click HERE to download the PPCC All About Me document to share with your child’s healthcare team.
PPCC is not a health care provider and does not give medical advice or treatment. PPCC does not endorse or recommend any listed facilities, service providers, or support groups herein. PPCC offers the list and information as a resource only. PPCC does not pre-evaluate, or consider the Medicare/Medicaid status of the providers.
The Pediatric Palliative Care Coalition is a registered 501(c) (3) not-for-profit organization. Donations are tax-deductible according to the IRS’s rules and regulations. The official registration and financial information for PPCC may be obtained from the Pennsylvania Department of State by calling toll-free within Pennsylvania 1-800-732-0999.
