APS
2025 APS Annual Convention · 2025
Caregivers' Experience Accessing Services for Their Child with Inborn Errors of Metabolism
- Alexa Raxenberg
National Institutes of Health - Kamryn Wilson
National Institutes of Health - Marlena Fisher
National Institutes of Health - Patricia Cooper
National Institutes of Health - Laura Koehly
Social Network Methods Section, Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health
Abstract
Caregivers of children with rare genetic conditions experience significant stressors from managing their child's medical care and well-being. Qualitative results (n=21) reveal that when publicly funded services are approved, they can have a positive impact on caregivers’ stress and their ability to effectively care for the care recipient and themselves.
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