Format

Send to

Choose Destination
See comment in PubMed Commons below
J Pediatr Nurs. 2014 Sep-Oct;29(5):393-400. doi: 10.1016/j.pedn.2014.01.008. Epub 2014 Jan 23.

Parental uncertainty in illness: managing uncertainty surrounding an "orphan" illness.

Author information

1
Department of Communication, University of Kentucky, Lexington, KY. Electronic address: annarankin@uky.edu.
2
Department of Communication, University of Cincinnati, Cincinnati, OH.

Abstract

Parents of children with complex chronic illnesses experience substantial uncertainty that is heightened when the condition is an "orphan" illness not belonging to one medical specialty. The current study explores uncertainty experienced by parents of children with "orphan" illnesses requiring multidisciplinary care.

METHOD:

Participant-observations over 13 months (n=200) were combined with questionnaire data (n=55) to assess parental uncertainty at a multidisciplinary pediatric clinic.

RESULTS:

Five unique types of uncertainty emerged from a grounded analysis (Glaser & Strauss, 1967), revealing 11 interrelated uncertainties these parents experience. Findings can help providers understand parents' uncertainty and assist in family-centered decision-making.

KEYWORDS:

Communication; Healthcare decision-making; Parental uncertainty; Uncertainty management

PMID:
24524955
DOI:
10.1016/j.pedn.2014.01.008
[Indexed for MEDLINE]
PubMed Commons home

PubMed Commons

0 comments

    Supplemental Content

    Full text links

    Icon for Elsevier Science
    Loading ...
    Support Center