Being and Making "FIT": Transition to self-managment of a chronic genetic disorder

2.50
Hdl Handle:
http://hdl.handle.net/10755/147655
Type:
Presentation
Title:
Being and Making "FIT": Transition to self-managment of a chronic genetic disorder
Abstract:
Being and Making "FIT": Transition to self-managment of a chronic genetic disorder
Conference Sponsor:Sigma Theta Tau International
Conference Year:2007
Author:Giarelli, E., RN, EdD, CS, CRNP
P.I. Institution Name:University of Pennsylvania
Title:Adj Assistant Professor, Research Projects Manager
Co-Authors:Barbara A. Bernhardt, MS
[Symposium scientific presentation] Self-management of chronic illness requires acquisition of self-care skills such as: seeking knowledge about one?s disease, adhering to treatment guidelines, practicing health promoting behaviors, and life-long self-surveillance. The purpose of this presentation is to describe the core psychosocial problem and psychosocial processes by which parents transfer, and children take on, the responsibility for managing a chronic genetic disorder. The phenomenon of interest is transition to self-management, which is defined as the individual?s self-directed participation in life-long surveillance and self-care to promote health. Individuals with Marfan syndrome (MFS) provided the empirical data. This grounded theory (GT) investigation used qualitative and quantitative data to uncover the basic psychological issue at the core of the phenomenon of transition to self-management and the psychosocial process used by the participants to deal with the issue. A sample of 107 (15 health care providers, 39 parents and 43 individuals ages 14 to 35 with MFS were recruited from a medical genetics clinic and the National Marfan Foundation. Data were questionnaires and two in-depth interviews. Interviews were analyzed using constant comparison content analysis techniques. Analysis comprised summary statistics of demographics and the micro-analysis (three levels) of transcribed interviews. The core concept, or basic psychosocial problem, is Being and Making "FIT". There are five concurrent psychosocial processes called: Shifting Perspective, Shifting Orientation, Shifting Sphere, Shifting Ownership, and Shifting Reasoning. The majority of SM skills are learned from parent who, in the case of genetic disorders, may be affected by the same condition. Transition to self-management is presumed to be more than planning the transfer of services from pediatric to adult care. It is a socially complex process that is now theoretically explained. Findings from this study show us how parent with the genetic disorder and providers may help a child's transition to self-management.
Repository Posting Date:
26-Oct-2011
Date of Publication:
17-Oct-2011
Sponsors:
Sigma Theta Tau International

Full metadata record

DC FieldValue Language
dc.typePresentationen_GB
dc.titleBeing and Making "FIT": Transition to self-managment of a chronic genetic disorderen_GB
dc.identifier.urihttp://hdl.handle.net/10755/147655-
dc.description.abstract<table><tr><td colspan="2" class="item-title">Being and Making &quot;FIT&quot;: Transition to self-managment of a chronic genetic disorder</td></tr><tr class="item-sponsor"><td class="label">Conference Sponsor:</td><td class="value">Sigma Theta Tau International</td></tr><tr class="item-year"><td class="label">Conference Year:</td><td class="value">2007</td></tr><tr class="item-author"><td class="label">Author:</td><td class="value">Giarelli, E., RN, EdD, CS, CRNP</td></tr><tr class="item-institute"><td class="label">P.I. Institution Name:</td><td class="value">University of Pennsylvania</td></tr><tr class="item-author-title"><td class="label">Title:</td><td class="value">Adj Assistant Professor, Research Projects Manager</td></tr><tr class="item-email"><td class="label">Email:</td><td class="value">IMLNG@aol.com</td></tr><tr class="item-co-authors"><td class="label">Co-Authors:</td><td class="value">Barbara A. Bernhardt, MS</td></tr><tr><td colspan="2" class="item-abstract">[Symposium scientific presentation] Self-management of chronic illness requires acquisition of self-care skills such as: seeking knowledge about one?s disease, adhering to treatment guidelines, practicing health promoting behaviors, and life-long self-surveillance. The purpose of this presentation is to describe the core psychosocial problem and psychosocial processes by which parents transfer, and children take on, the responsibility for managing a chronic genetic disorder. The phenomenon of interest is transition to self-management, which is defined as the individual?s self-directed participation in life-long surveillance and self-care to promote health. Individuals with Marfan syndrome (MFS) provided the empirical data. This grounded theory (GT) investigation used qualitative and quantitative data to uncover the basic psychological issue at the core of the phenomenon of transition to self-management and the psychosocial process used by the participants to deal with the issue. A sample of 107 (15 health care providers, 39 parents and 43 individuals ages 14 to 35 with MFS were recruited from a medical genetics clinic and the National Marfan Foundation. Data were questionnaires and two in-depth interviews. Interviews were analyzed using constant comparison content analysis techniques. Analysis comprised summary statistics of demographics and the micro-analysis (three levels) of transcribed interviews. The core concept, or basic psychosocial problem, is Being and Making &quot;FIT&quot;. There are five concurrent psychosocial processes called: Shifting Perspective, Shifting Orientation, Shifting Sphere, Shifting Ownership, and Shifting Reasoning. The majority of SM skills are learned from parent who, in the case of genetic disorders, may be affected by the same condition. Transition to self-management is presumed to be more than planning the transfer of services from pediatric to adult care. It is a socially complex process that is now theoretically explained. Findings from this study show us how parent with the genetic disorder and providers may help a child's transition to self-management.</td></tr></table>en_GB
dc.date.available2011-10-26T09:34:46Z-
dc.date.issued2011-10-17en_GB
dc.date.accessioned2011-10-26T09:34:46Z-
dc.description.sponsorshipSigma Theta Tau Internationalen_GB
All Items in this repository are protected by copyright, with all rights reserved, unless otherwise indicated.