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
Identifier
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
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Type
Journal Article
Citation List Month
Backlog
URL Address
Citation
Kerr AM; Haas SM, “Parental uncertainty in illness: managing uncertainty surrounding an "orphan" illness,” Pediatric Palliative Care Library, accessed March 28, 2024, https://pedpalascnetlibrary.omeka.net/items/show/15028.