Understanding Adult Participant and Parent Empowerment Prior to Evaluation in the Undiagnosed Diseases Network

The burden of living with an undiagnosed condition is high and includes physical and emotional suffering, frustrations, and uncertainty. For patients and families experiencing these stressors, higher levels of empowerment may be associated with better outcomes. Thus, it is important to understand th...

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Bibliografski detalji
Izdano u:J Genet Couns
Glavni autori: Palmer, Christina G. S., McConkie-Rosell, Allyn, Holm, Ingrid A., LeBlanc, Kimberly, Sinsheimer, Janet S., Briere, Lauren C., Dorrani, Naghmeh, Herzog, Matthew R., Lincoln, Sharyn, Schoch, Kelly, Spillmann, Rebecca C., Brokamp, Elly
Format: Artigo
Jezik:Inglês
Izdano: Springer US 2018
Teme:
Original Research
Online pristup:https://ncbi.nlm.nih.gov/pmc/articles/PMC6132569/
https://ncbi.nlm.nih.gov/pubmed/29497923
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1007/s10897-018-0228-6
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