2.50
Hdl Handle:
http://hdl.handle.net/10755/159170
Type:
Presentation
Title:
What Happens When HD Caregivers Seek Help
Abstract:
What Happens When HD Caregivers Seek Help
Conference Sponsor:Midwest Nursing Research Society
Conference Year:2005
Author:Williams, Janet, PhD, MA, PNP, FAAN
P.I. Institution Name:University of Iowa
Title:Professor
Contact Address:College of Nursing, 338 Nursing Building, Iowa City, IA, 52242-1121, USA
Contact Telephone:319/335-7046
Co-Authors:Rebekah J. Hamilton, PhD, RN; Kathleen Sparbel, PhDc, MS, APRN, BC; Debra Schutte, PhD, RN; Meghan McGonigal-Kenney, BSN, RN; Diane Rehak, MSN, BSN, RN; Toni Tripp-Reimer, PhD, RN, FAAN; Jane Paulsen, PhD; and Lori Jarmon, MA
Background: Manifested by decline of cognitive, affective, and motor
function, Huntington Disease (HD) is an autosomal dominant disorder with
an average age of onset of 38 years. The course of illness extends 10û15
years after clinical diagnosis. The nature and extent of caregiving
support for family members of persons with HD is unknown. Purpose: To
identify the consequences of seeking caregiving help by family members of
persons with Huntington Disease (HD) Methods: Seventy people, ages 14û81,
who have a family member with a positive HD gene test or a clinical
diagnosis of HD participated in focus groups in three US cities. These
data are part of a larger project to identify health problems and
strategies of persons who provide care to persons with HD. Data were
audiotaped, transcribed, and analyzed by the research study team and
common themes identified. Findings: Caregivers sought help from family,
friends, health care providers, and established caregiving community-based
services. Responses from all sources were mixed. When help was received,
it was in the form of providing information, finding services, or
listening to the caregiver. When help was denied, the denial was in the
form of avoidance by family, ineligibility for financial assistance, or
refusal of services from community-based agencies. Individual health care
providers did not understand HD, or were unwilling to provide care,
leading to inappropriate management or dismissal of caregiver concerns. In
other instances, needed services were not available. Consequences for the
caregivers were described as feeling hopeless, overwhelmed, and not
knowing where else to turn. Conclusions: Responses to requests for help
were highly variable. Understanding the etiology of this variable response
is necessary for devising appropriate interventions. 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.titleWhat Happens When HD Caregivers Seek Helpen_GB
dc.identifier.urihttp://hdl.handle.net/10755/159170-
dc.description.abstract<table><tr><td colspan="2" class="item-title">What Happens When HD Caregivers Seek Help</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">Williams, Janet, PhD, MA, PNP, FAAN</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">Professor</td></tr><tr class="item-address"><td class="label">Contact Address:</td><td class="value">College of Nursing, 338 Nursing Building, Iowa City, IA, 52242-1121, USA</td></tr><tr class="item-phone"><td class="label">Contact Telephone:</td><td class="value">319/335-7046</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">Rebekah J. Hamilton, PhD, RN; Kathleen Sparbel, PhDc, MS, APRN, BC; Debra Schutte, PhD, RN; Meghan McGonigal-Kenney, BSN, RN; Diane Rehak, MSN, BSN, RN; Toni Tripp-Reimer, PhD, RN, FAAN; Jane Paulsen, PhD; and Lori Jarmon, MA</td></tr><tr><td colspan="2" class="item-abstract">Background: Manifested by decline of cognitive, affective, and motor <br/> function, Huntington Disease (HD) is an autosomal dominant disorder with <br/> an average age of onset of 38 years. The course of illness extends 10&ucirc;15 <br/> years after clinical diagnosis. The nature and extent of caregiving <br/> support for family members of persons with HD is unknown. Purpose: To <br/> identify the consequences of seeking caregiving help by family members of <br/> persons with Huntington Disease (HD) Methods: Seventy people, ages 14&ucirc;81, <br/> who have a family member with a positive HD gene test or a clinical <br/> diagnosis of HD participated in focus groups in three US cities. These <br/> data are part of a larger project to identify health problems and <br/> strategies of persons who provide care to persons with HD. Data were <br/> audiotaped, transcribed, and analyzed by the research study team and <br/> common themes identified. Findings: Caregivers sought help from family, <br/> friends, health care providers, and established caregiving community-based <br/> services. Responses from all sources were mixed. When help was received, <br/> it was in the form of providing information, finding services, or <br/> listening to the caregiver. When help was denied, the denial was in the <br/> form of avoidance by family, ineligibility for financial assistance, or <br/> refusal of services from community-based agencies. Individual health care <br/> providers did not understand HD, or were unwilling to provide care, <br/> leading to inappropriate management or dismissal of caregiver concerns. In <br/> other instances, needed services were not available. Consequences for the <br/> caregivers were described as feeling hopeless, overwhelmed, and not <br/> knowing where else to turn. Conclusions: Responses to requests for help <br/> were highly variable. Understanding the etiology of this variable response <br/> is necessary for devising appropriate interventions. Supported by NINR <br/> R0107970 to J. K. Williams.</td></tr></table>en_GB
dc.date.available2011-10-26T21:46:19Z-
dc.date.issued2011-10-17en_GB
dc.date.accessioned2011-10-26T21:46:19Z-
dc.description.sponsorshipMidwest Nursing Research Societyen_GB
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