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

Title

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

Creator

Kerr AM; Haas SM

Publisher

Journal Of Pediatric Nursing

Date

2014

Description

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.
2014-10

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Type

Journal Article

Citation List Month

Backlog

Pages

393-400

Issue

5

Volume

29

Citation

Kerr AM; Haas SM, “Parental uncertainty in illness: managing uncertainty surrounding an "orphan" illness,” Pediatric Palliative Care Library, accessed November 29, 2021, https://pedpalascnetlibrary.omeka.net/items/show/15028.

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