2.50
Hdl Handle:
http://hdl.handle.net/10755/160895
Type:
Presentation
Title:
Concerns of Teens in HD Families
Abstract:
Concerns of Teens in HD Families
Conference Sponsor:Midwest Nursing Research Society
Conference Year:2006
Author:Sparbel, Kathleen, PhDc, MS, APRN, BC
P.I. Institution Name:University of Iowa
Title:Family Nurse Practitioner
Contact Address:College of Nursing, 101 Nursing Building, Iowa City, IA, 52242-1121, USA
Contact Telephone:(309) 757-9467, ex 25
Co-Authors:Shelley-Rae Pehler, PhDc, MSN, Pre-doctoral Fellow; Janet Williams, PhD, MA, PNP, FAAN, Professor; Lori Jarmon, MA, Project Director; Anne D. Letocha, MSN, APRN, Predoctoral Student; Rose Marie Friedrich, MA, RN, Clinical Nurse Researcher; Jane Paulsen, P
Huntington Disease (HD) is a progressive neurological autosomal dominant genetic condition, commonly presenting during the 4th or 5th decade of life. Persons with HD exhibit cognitive, functional, motor, and behavioral changes that eventually result in total dependence for daily care. In other neurodegenerative conditions, issues related to caregiving have been studied. Most of these studies have focused primarily on the spouse of the affected individual. The concerns of adolescents in families who have a neurologically impaired parent or grandparent have not been documented. Concerns and continuing needs of 24 teens with a parent or grandparent with HD were addressed through focus group methodology in a multisite study in the United States and Canada. Focus group interactions were transcribed, verified, coded, and themes identified by the HD Family research team. Teens identified three categories of concerns. First identified were concerns for other family members, including issues regarding the parent with HD, worry for the nonaffected parent, and apprehension for siblings. Secondly, teens identified the impact on current aspects of their daily lives. Role changes, conflict within the family, and alterations in social interaction were described. Finally, the teens expressed concerns about the future, both for themselves, and for other family members. Future concerns included the trajectory of illness for the person with HD, effects of ongoing stress on the parent without HD, genetic testing considerations, and planning for future relationships, family, and careers. Teens in these focus groups identified multifocal concerns for themselves and family members. However, the effect of living in an HD household on adolescents is not well understood. Further research on effects and strategies to support these vulnerable teens is needed. This presentation is part of an NINR funded study (J. K. Williams, PI, R01 NR07970) exploring caregiving concerns and strategies for families with a family member with Huntington Disease.
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.titleConcerns of Teens in HD Familiesen_GB
dc.identifier.urihttp://hdl.handle.net/10755/160895-
dc.description.abstract<table><tr><td colspan="2" class="item-title">Concerns of Teens in HD Families</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">2006</td></tr><tr class="item-author"><td class="label">Author:</td><td class="value">Sparbel, Kathleen, PhDc, MS, APRN, BC</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">Family Nurse Practitioner</td></tr><tr class="item-address"><td class="label">Contact Address:</td><td class="value">College of Nursing, 101 Nursing Building, Iowa City, IA, 52242-1121, USA</td></tr><tr class="item-phone"><td class="label">Contact Telephone:</td><td class="value">(309) 757-9467, ex 25</td></tr><tr class="item-email"><td class="label">Email:</td><td class="value">ksparbel@uic.edu</td></tr><tr class="item-co-authors"><td class="label">Co-Authors:</td><td class="value">Shelley-Rae Pehler, PhDc, MSN, Pre-doctoral Fellow; Janet Williams, PhD, MA, PNP, FAAN, Professor; Lori Jarmon, MA, Project Director; Anne D. Letocha, MSN, APRN, Predoctoral Student; Rose Marie Friedrich, MA, RN, Clinical Nurse Researcher; Jane Paulsen, P</td></tr><tr><td colspan="2" class="item-abstract">Huntington Disease (HD) is a progressive neurological autosomal dominant genetic condition, commonly presenting during the 4th or 5th decade of life. Persons with HD exhibit cognitive, functional, motor, and behavioral changes that eventually result in total dependence for daily care. In other neurodegenerative conditions, issues related to caregiving have been studied. Most of these studies have focused primarily on the spouse of the affected individual. The concerns of adolescents in families who have a neurologically impaired parent or grandparent have not been documented. Concerns and continuing needs of 24 teens with a parent or grandparent with HD were addressed through focus group methodology in a multisite study in the United States and Canada. Focus group interactions were transcribed, verified, coded, and themes identified by the HD Family research team. Teens identified three categories of concerns. First identified were concerns for other family members, including issues regarding the parent with HD, worry for the nonaffected parent, and apprehension for siblings. Secondly, teens identified the impact on current aspects of their daily lives. Role changes, conflict within the family, and alterations in social interaction were described. Finally, the teens expressed concerns about the future, both for themselves, and for other family members. Future concerns included the trajectory of illness for the person with HD, effects of ongoing stress on the parent without HD, genetic testing considerations, and planning for future relationships, family, and careers. Teens in these focus groups identified multifocal concerns for themselves and family members. However, the effect of living in an HD household on adolescents is not well understood. Further research on effects and strategies to support these vulnerable teens is needed. This presentation is part of an NINR funded study (J. K. Williams, PI, R01 NR07970) exploring caregiving concerns and strategies for families with a family member with Huntington Disease.</td></tr></table>en_GB
dc.date.available2011-10-26T23:12:30Z-
dc.date.issued2011-10-17en_GB
dc.date.accessioned2011-10-26T23:12:30Z-
dc.description.sponsorshipMidwest Nursing Research Societyen_GB
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