What is it about?
These seven cases demonstrate how patients with genetic disorders and their caregivers became active and significant participants in their care.
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Why is it important?
Patients with genetic disorders and their caregivers in this study were strongly motivated to find answers. They were glad they researched the symptoms and discovered the diagnosis for their cases. Some participants came away from their experience of research and treatment with new perspectives on their lives, values, and priorities.
Perspectives
Genetics providers should be open to discussing the relevance of information and insights offered by patients and their caregivers, and collaborate to provide best care.
Dr Robert B Slocum
University of Kentucky
A health crisis that started with negative feelings of guilt, shame, blame, and isolation for patients and family members became the driving factor to take matters into their own hands to find the answer they were seeking.
Dr Robert Boak Slocum
University of Kentucky
Read the Original
This page is a summary of: Listening to patients with suspected genetic diagnoses: A narrative perspective, American Journal of Medical Genetics Part C Seminars in Medical Genetics, December 2023, Wiley,
DOI: 10.1002/ajmg.c.32079.
You can read the full text:
Contributors
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