2.50
Hdl Handle:
http://hdl.handle.net/10755/160120
Type:
Presentation
Title:
Evidence of Ambiguous Loss Experienced by Families with Huntington Disease
Abstract:
Evidence of Ambiguous Loss Experienced by Families with Huntington Disease
Conference Sponsor:Midwest Nursing Research Society
Conference Year:2005
Author:McGonigal-Kenney, Meghan, BSN, RN
P.I. Institution Name:University of Iowa
Title:Predoctoral Student
Contact Address:College of Nursing, 862 Tipperary Rd, Iowa City, IA, 52246, USA
Co-Authors:Janet Williams, PhD, MA, PNP, FAAN, Professor; Debra Schutte, PhD, RN, Assistant Professor; Rebekah J Hamilton, PhD, RN, Post Doctoral Fellow; Diane Rehak, MSN, BSN, RN; Kathleen Sparbel, PhDc, MS, APRN, BC, Family Nurse Practitioner; and Lori Jarmon, MA,
Purpose: The purpose is to describe family membersÆ perceptions of
loss across the Huntington Disease (HD) trajectory. The longitudinal
trajectory represents persons at-risk for or affected with HD who are
characterized by: 1) pre-medical diagnosis, post-predictive testing; 2)
post-medical diagnosis, living at home; or 3) post-medical diagnosis,
living in a care facility. Background: HD is an autosomal dominant, progressive, and incurable
adult-onset neuropsychiatric disorder. Predictive DNA testing allows
asymptomatic individuals to clarify their risk of developing HD. The
nature and extent of loss family members experience across the HD
trajectory is unknown. Subjects: This presentation reports preliminary results from a larger
study undertaken to determine health concerns of families with HD and
strategies used to address those concerns. Family members ages 14-81 were
interviewed across 3 U.S. sites (N=70). Method and Analysis: A qualitative descriptive research method using focus
group (N=14) methodology was used. Data were analyzed through thematic
content analysis. Results: Evidence of ambiguous loss was present in role and relationship
changes and interpretation of symptom presentation. Family members
described the person at-risk for or affected with HD as physically present
and psychologically absent to varying degrees. These results are
consistent with prior descriptions of ambiguous loss as incomplete or
uncertain loss when persons are either physically present and
psychologically absent or physically absent and psychologically present.
Family members experienced ambiguous loss throughout the disease
trajectory and across age groups. Responses to ambiguous loss were varied.
Conclusions: Implications include potential threats to family membersÆ
personal health and to family well-being and function. In contrast,
participants' positive responses may help support self-sustaining efforts
and family health. Recognizing and understanding experiences of ambiguous
loss may lead to the development of interventions aimed at assisting
families with chronic illnesses to cope with such loss. Supported by NINR R0107970 to J. K. Williams
Repository Posting Date:
26-Oct-2011
Date of Publication:
17-Oct-2011
Sponsors:
Midwest Nursing Research Society

Full metadata record

DC FieldValue Language
dc.typePresentationen_GB
dc.titleEvidence of Ambiguous Loss Experienced by Families with Huntington Diseaseen_GB
dc.identifier.urihttp://hdl.handle.net/10755/160120-
dc.description.abstract<table><tr><td colspan="2" class="item-title">Evidence of Ambiguous Loss Experienced by Families with Huntington Disease</td></tr><tr class="item-sponsor"><td class="label">Conference Sponsor:</td><td class="value">Midwest Nursing Research Society</td></tr><tr class="item-year"><td class="label">Conference Year:</td><td class="value">2005</td></tr><tr class="item-author"><td class="label">Author:</td><td class="value">McGonigal-Kenney, Meghan, BSN, RN</td></tr><tr class="item-institute"><td class="label">P.I. Institution Name:</td><td class="value">University of Iowa</td></tr><tr class="item-author-title"><td class="label">Title:</td><td class="value">Predoctoral Student</td></tr><tr class="item-address"><td class="label">Contact Address:</td><td class="value">College of Nursing, 862 Tipperary Rd, Iowa City, IA, 52246, USA</td></tr><tr class="item-email"><td class="label">Email:</td><td class="value">meghan-mcgonigal@uiowa.edu</td></tr><tr class="item-co-authors"><td class="label">Co-Authors:</td><td class="value">Janet Williams, PhD, MA, PNP, FAAN, Professor; Debra Schutte, PhD, RN, Assistant Professor; Rebekah J Hamilton, PhD, RN, Post Doctoral Fellow; Diane Rehak, MSN, BSN, RN; Kathleen Sparbel, PhDc, MS, APRN, BC, Family Nurse Practitioner; and Lori Jarmon, MA,</td></tr><tr><td colspan="2" class="item-abstract">Purpose: The purpose is to describe family members&AElig; perceptions of <br/> loss across the Huntington Disease (HD) trajectory. The longitudinal <br/> trajectory represents persons at-risk for or affected with HD who are <br/> characterized by: 1) pre-medical diagnosis, post-predictive testing; 2) <br/> post-medical diagnosis, living at home; or 3) post-medical diagnosis, <br/> living in a care facility. Background: HD is an autosomal dominant, progressive, and incurable <br/> adult-onset neuropsychiatric disorder. Predictive DNA testing allows <br/> asymptomatic individuals to clarify their risk of developing HD. The <br/> nature and extent of loss family members experience across the HD <br/> trajectory is unknown. Subjects: This presentation reports preliminary results from a larger <br/> study undertaken to determine health concerns of families with HD and <br/> strategies used to address those concerns. Family members ages 14-81 were <br/> interviewed across 3 U.S. sites (N=70). Method and Analysis: A qualitative descriptive research method using focus <br/> group (N=14) methodology was used. Data were analyzed through thematic <br/> content analysis. Results: Evidence of ambiguous loss was present in role and relationship <br/> changes and interpretation of symptom presentation. Family members <br/> described the person at-risk for or affected with HD as physically present <br/> and psychologically absent to varying degrees. These results are <br/> consistent with prior descriptions of ambiguous loss as incomplete or <br/> uncertain loss when persons are either physically present and <br/> psychologically absent or physically absent and psychologically present. <br/> Family members experienced ambiguous loss throughout the disease <br/> trajectory and across age groups. Responses to ambiguous loss were varied.<br/> Conclusions: Implications include potential threats to family members&AElig; <br/> personal health and to family well-being and function. In contrast, <br/> participants' positive responses may help support self-sustaining efforts <br/> and family health. Recognizing and understanding experiences of ambiguous <br/> loss may lead to the development of interventions aimed at assisting <br/> families with chronic illnesses to cope with such loss. Supported by NINR R0107970 to J. K. Williams</td></tr></table>en_GB
dc.date.available2011-10-26T22:38:41Z-
dc.date.issued2011-10-17en_GB
dc.date.accessioned2011-10-26T22:38:41Z-
dc.description.sponsorshipMidwest Nursing Research Societyen_GB
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