2.50
Hdl Handle:
http://hdl.handle.net/10755/159000
Type:
Presentation
Title:
Huntington Disease Family Health Concern Strategies
Abstract:
Huntington Disease Family Health Concern Strategies
Conference Sponsor:Midwest Nursing Research Society
Conference Year:2007
Author:Williams, Janet, PhD
P.I. Institution Name:The University of Iowa
Contact Address:, 338 Nursing Building, Iowa City, IA, 52242, USA
Co-Authors:V. Sousa, T. Tripp-Reimer, and E. Birrer, The University of Iowa, Iowa City, IA; and J. Barnette, Biostatistics, University of Alabama, Birmingham, AL
Problem and Background: Huntington Disease is an inherited neurodegenerative disorder that spans 10-40 years, with a mean age of onset of 38 years. This condition involves losses of cognitive, behavioral, and motor function. Families provide much of the care until the person can no longer live at home. Little is known about how families manage individual and family member health concerns. The purpose of this study was to identify management strategies used by family members of persons with Huntington Disease. Methods and participants: Adult family members of persons with HD at all stages of the condition were recruited through letters to members of an HD Registry and an HD informational website. Four scales, including the Strategies Scale were mailed to 369 requesting them, 170 were analyzed using binomial tests to determine relative use and usefulness of strategies. The scale contained 82 items. Results: The majority of respondents were non-Hispanic white (91%), female (72%), with a mean age of 44.8 years. The mean age of the persons with HD was 51.8 years (13-84). Forty eight percent were the main persons responsible for the person with HD's care. Thirty percent were spouses/partners, and the remainder was parents, children, or siblings. Emotion-focused coping efforts by family members including use of humor or prayer were rated as frequently used and helpful. Attempting to hold in one's emotions, while rated as not helpful was frequently used. Family who were responsible for caregiving endorsed specific strategies including obtaining information about HD, using prescription medications to cope, finding support for themselves, taking on responsibilities formerly completed by the person with HD, and helping the person with HD with care as being used more than by those who were not primarily responsible. When given an opportunity to share strategies not included in the survey participants expressed that maintaining a positive outlook was helpful. Conclusions: These findings suggest that family members of persons with HD use emotion focused strategies with varying levels of success. Strategies to manage caregiving problems may vary according to family member resources, stage of HD, and health care service availability. [Funded by NIH/NINR R01 NR07970]
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.titleHuntington Disease Family Health Concern Strategiesen_GB
dc.identifier.urihttp://hdl.handle.net/10755/159000-
dc.description.abstract<table><tr><td colspan="2" class="item-title">Huntington Disease Family Health Concern Strategies</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">2007</td></tr><tr class="item-author"><td class="label">Author:</td><td class="value">Williams, Janet, PhD</td></tr><tr class="item-institute"><td class="label">P.I. Institution Name:</td><td class="value">The University of Iowa</td></tr><tr class="item-address"><td class="label">Contact Address:</td><td class="value">, 338 Nursing Building, Iowa City, IA, 52242, USA</td></tr><tr class="item-email"><td class="label">Email:</td><td class="value">janet-williams@uiowa.edu</td></tr><tr class="item-co-authors"><td class="label">Co-Authors:</td><td class="value">V. Sousa, T. Tripp-Reimer, and E. Birrer, The University of Iowa, Iowa City, IA; and J. Barnette, Biostatistics, University of Alabama, Birmingham, AL</td></tr><tr><td colspan="2" class="item-abstract">Problem and Background: Huntington Disease is an inherited neurodegenerative disorder that spans 10-40 years, with a mean age of onset of 38 years. This condition involves losses of cognitive, behavioral, and motor function. Families provide much of the care until the person can no longer live at home. Little is known about how families manage individual and family member health concerns. The purpose of this study was to identify management strategies used by family members of persons with Huntington Disease. Methods and participants: Adult family members of persons with HD at all stages of the condition were recruited through letters to members of an HD Registry and an HD informational website. Four scales, including the Strategies Scale were mailed to 369 requesting them, 170 were analyzed using binomial tests to determine relative use and usefulness of strategies. The scale contained 82 items. Results: The majority of respondents were non-Hispanic white (91%), female (72%), with a mean age of 44.8 years. The mean age of the persons with HD was 51.8 years (13-84). Forty eight percent were the main persons responsible for the person with HD's care. Thirty percent were spouses/partners, and the remainder was parents, children, or siblings. Emotion-focused coping efforts by family members including use of humor or prayer were rated as frequently used and helpful. Attempting to hold in one's emotions, while rated as not helpful was frequently used. Family who were responsible for caregiving endorsed specific strategies including obtaining information about HD, using prescription medications to cope, finding support for themselves, taking on responsibilities formerly completed by the person with HD, and helping the person with HD with care as being used more than by those who were not primarily responsible. When given an opportunity to share strategies not included in the survey participants expressed that maintaining a positive outlook was helpful. Conclusions: These findings suggest that family members of persons with HD use emotion focused strategies with varying levels of success. Strategies to manage caregiving problems may vary according to family member resources, stage of HD, and health care service availability. [Funded by NIH/NINR R01 NR07970]</td></tr></table>en_GB
dc.date.available2011-10-26T21:36:18Z-
dc.date.issued2011-10-17en_GB
dc.date.accessioned2011-10-26T21:36:18Z-
dc.description.sponsorshipMidwest Nursing Research Societyen_GB
All Items in this repository are protected by copyright, with all rights reserved, unless otherwise indicated.