2.50
Hdl Handle:
http://hdl.handle.net/10755/163418
Category:
Abstract
Type:
Presentation
Title:
Voices of Parents of Children with Neurofibromatosis 1(NF)
Author(s):
Dylis, Ann M.
Author Details:
Ann M. Dylis, PhD, RN, Assistant Professor, Northeastern University School of Nursing, Bouve College of Health Sciences, Boston, Massachusetts, USA, email: a.dylis@neu.edu
Abstract:
Purpose: The purpose, the qualitative portion of an ANF/ENRS funded Mixed Method study, is to identify themes/patterns which emerged from parental responses to two questions: "What do parents of children with NF want from health care providers?" and "What were parental experiences at the initial time of their child's diagnosis?" Background: NF is the most common single gene disorder involving the nervous system. Prior literature has noted that the unpredictable trajectory of chronic disorders, such as NF, contributes to parental uncertainty. Health care professionals have exacerbated uncertainty by discouraging hope. The parent provider literature indicated that trust and mutual participation decrease uncertainty and are essential for positive relationships. Methods (Design, Participants, Setting, Data Collection, Analytic approach): This study is based on unanalyzed data previously collected from an international sample of 337 parents of children with NF (Dylis, 2003). Content analysis summarized the data with codes that were systematically applied and data derived (Sandelowski, 20000). Data management strategies were concurrently utilized with data analysis, including recording of themes, record keeping, assignment of codes, and data displays via descriptive grids (Knafl & Webster, 1988). Results: Themes that emerged from the parent-provider question were desires for the professional to provide accurate information, advocacy, appropriate communication, referrals, support, hope, honesty, and respect. Themes that emerged from the diagnostic experience question were symptom management based on the seven diagnostic criteria, stories of diagnostic delays, missed or misdiagnosis, and stories of parental knowledge being dismissed. The quantitative phase of the study (ongoing) will determine if these themes vary based on parental scores of family functioning, uncertainty stress, and other significant predictors in the original study. Conclusions and Implications: Collaborative parent provider relationships are essential and provider NF diagnostic knowledge is often inadequate. The data may provide beginning evidence to support the development of future individualized interventions aimed at improving the quality of life (QOL) for families living with NF.
Repository Posting Date:
27-Oct-2011
Date of Publication:
27-Oct-2011
Conference Date:
2006
Conference Name:
18th Annual Scientific Sessions
Conference Host:
Eastern Nursing Research Society
Conference Location:
Cherry Hill, New Jersey
Description:
�New Momentum for Nursing Research: Multidisciplinary Alliances�, held on April 20th -22nd at the Hilton in Cherry Hill, New Jersey
Note:
This is an abstract-only submission. If the author has submitted a full-text item based on this abstract, you may find it by browsing the Virginia Henderson Global Nursing e-Repository by author. If author contact information is available in this abstract, please feel free to contact him or her with your queries regarding this submission. Alternatively, please contact the conference host, journal, or publisher (according to the circumstance) for further details regarding this item. If a citation is listed in this record, the item has been published and is available via open-access avenues or a journal/database subscription. Contact your library for assistance in obtaining the as-published article.

Full metadata record

DC FieldValue Language
dc.type.categoryAbstracten_US
dc.typePresentationen_GB
dc.titleVoices of Parents of Children with Neurofibromatosis 1(NF)en_GB
dc.contributor.authorDylis, Ann M.en_US
dc.author.detailsAnn M. Dylis, PhD, RN, Assistant Professor, Northeastern University School of Nursing, Bouve College of Health Sciences, Boston, Massachusetts, USA, email: a.dylis@neu.eduen_US
dc.identifier.urihttp://hdl.handle.net/10755/163418-
dc.description.abstractPurpose: The purpose, the qualitative portion of an ANF/ENRS funded Mixed Method study, is to identify themes/patterns which emerged from parental responses to two questions: "What do parents of children with NF want from health care providers?" and "What were parental experiences at the initial time of their child's diagnosis?" Background: NF is the most common single gene disorder involving the nervous system. Prior literature has noted that the unpredictable trajectory of chronic disorders, such as NF, contributes to parental uncertainty. Health care professionals have exacerbated uncertainty by discouraging hope. The parent provider literature indicated that trust and mutual participation decrease uncertainty and are essential for positive relationships. Methods (Design, Participants, Setting, Data Collection, Analytic approach): This study is based on unanalyzed data previously collected from an international sample of 337 parents of children with NF (Dylis, 2003). Content analysis summarized the data with codes that were systematically applied and data derived (Sandelowski, 20000). Data management strategies were concurrently utilized with data analysis, including recording of themes, record keeping, assignment of codes, and data displays via descriptive grids (Knafl & Webster, 1988). Results: Themes that emerged from the parent-provider question were desires for the professional to provide accurate information, advocacy, appropriate communication, referrals, support, hope, honesty, and respect. Themes that emerged from the diagnostic experience question were symptom management based on the seven diagnostic criteria, stories of diagnostic delays, missed or misdiagnosis, and stories of parental knowledge being dismissed. The quantitative phase of the study (ongoing) will determine if these themes vary based on parental scores of family functioning, uncertainty stress, and other significant predictors in the original study. Conclusions and Implications: Collaborative parent provider relationships are essential and provider NF diagnostic knowledge is often inadequate. The data may provide beginning evidence to support the development of future individualized interventions aimed at improving the quality of life (QOL) for families living with NF.en_GB
dc.date.available2011-10-27T11:07:14Z-
dc.date.issued2011-10-27en_GB
dc.date.accessioned2011-10-27T11:07:14Z-
dc.conference.date2006en_US
dc.conference.name18th Annual Scientific Sessionsen_US
dc.conference.hostEastern Nursing Research Societyen_US
dc.conference.locationCherry Hill, New Jerseyen_US
dc.description�New Momentum for Nursing Research: Multidisciplinary Alliances�, held on April 20th -22nd at the Hilton in Cherry Hill, New Jerseyen_US
dc.description.noteThis is an abstract-only submission. If the author has submitted a full-text item based on this abstract, you may find it by browsing the Virginia Henderson Global Nursing e-Repository by author. If author contact information is available in this abstract, please feel free to contact him or her with your queries regarding this submission. Alternatively, please contact the conference host, journal, or publisher (according to the circumstance) for further details regarding this item. If a citation is listed in this record, the item has been published and is available via open-access avenues or a journal/database subscription. Contact your library for assistance in obtaining the as-published article.-
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