Literature DB >> 22711240

Factors associated with perceived uncertainty among parents of children with undiagnosed medical conditions.

Anne C Madeo1, Kathleen E O'Brien, Barbara A Bernhardt, Barbara B Biesecker.   

Abstract

Uncertainty is a pervasive characteristic of illness. Yet little is known about the individual or situational factors that contribute to perceptions of uncertainty. The present study aims to examine the factors that contribute to perceived uncertainty among parents of a child with an undiagnosed condition. Two hundred sixty-six parents of a child, or children, affected by an undiagnosed medical condition for at least 2 years completed an electronically administered mixed-methods survey assessing theoretical predictors of perceived uncertainty. Multivariate linear regression analyses were used to identify the relationship of key variables to perceived uncertainty. Parents' perceived control and optimism were negatively associated with uncertainty (B=-4.044, P≤0.001, B=-0.477, P≤0.05). Subjective disease severity was positively associated with perceived uncertainty (B=1.797, P≤0.05). Our findings suggest that parents who experience greater uncertainty feel less control over their child's medical condition, which may lead to less effective coping and poorer adaptation. Parents who are less optimistic or who perceive their child's disease as more severe may benefit most from interventions that target situations where parents perceive the least control, thereby enhancing coping and ultimately, adaptation. Published 2012 Wiley Periodicals, Inc. This article is a U.S. Government work and is in the public domain in the USA.

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Year:  2012        PMID: 22711240      PMCID: PMC3402688          DOI: 10.1002/ajmg.a.35425

Source DB:  PubMed          Journal:  Am J Med Genet A        ISSN: 1552-4825            Impact factor:   2.802


  33 in total

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Review 4.  Life with a Primary Immune Deficiency: a Systematic Synthesis of the Literature and Proposed Research Agenda.

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Review 6.  Patients' views on variants of uncertain significance across indications.

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8.  Cases from the Undiagnosed Diseases Network: The continued value of counseling skills in a new genomic era.

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Review 10.  Genetic Counseling in Neurodevelopmental Disorders.

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