1. RUNNING HEAD: PARENTAL UNCERTAINTY IN ILLNESS.
- Subjects
HEMANGIOMAS ,NEVUS ,PHYSICIANS ,MEDICAL care ,PARENT-child relationships - Abstract
This study explored the uncertainty experienced by parents of children with hemangiomas and vascular malformations (HVMs)-commonly known as birthmarks. Because HVMs do not belong to one medical specialty, they may be characterized as an "orphan" illness. The complexities of this condition impact parents' experiences with uncertainty. Thirteen months of participant-observation were combined with a survey approach to assess parental uncertainty and communication with physicians at an HVM clinic. Uncertainty in Illness Theory, Problematic Integration Theory, and Uncertainty Management Theory were used as theoretical frameworks to interpret results. The findings highlight the interwoven uncertainties posed by "orphan" illnesses and how these influence parents' ability to assign meaning to their illness experience and their communication with healthcare providers. Complex uncertainties also suggest that existing measurement scales may not well operationalize the multilayered and complicated nature of uncertainty in illness for parents. Theoretical implications suggest that existing illness uncertainty theories and scales might be expanded to apply to the unique uncertainties of "orphan" illnesses and distinctive characteristics of parental uncertainty. [ABSTRACT FROM AUTHOR]
- Published
- 2011