2.50
Hdl Handle:
http://hdl.handle.net/10755/159156
Type:
Presentation
Title:
HD Family Teen Data Analysis Using a Developmental Lens
Abstract:
HD Family Teen Data Analysis Using a Developmental Lens
Conference Sponsor:Midwest Nursing Research Society
Conference Year:2005
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; Janet Williams, PhD, MA, PNP, FAAN; Debra Schutte, PhD, RN; Diane Rehak, MSN, BSN, RN; Meghan McGonigal-Kenney, BSN, RN; Lori Jarmon, MA, Project Director; Toni Tripp-Reimer, PhD, RN, FAAN; and Jane Paulsen, PhD, MD
Huntington Disease (HD) is a progressive neurological autosomal dominant condition, commonly presenting during the 4th or 5th decade of life. When a parent develops Huntington symptoms, the family members, including teens, change roles and share caregiving responsibilities that coincide, and often conflict, with normal adolescent development. Additionally, adolescent developmental tasks occur within the context of the youth's risk for also developing this progressive fatal genetic condition. Questions regarding teenager concerns, experiences with the HD afflicted family member, strategies for addressing those concerns, and continuing needs were addressed through focus group methodology. Developmental issues regarding difficulties in achieving the normative tasks of establishing their own identity, becoming more autonomous, and planning for the future exemplify the adolescent conflicts within the family system secondary to the progressive chronic genetic condition. Teen responses reflected challenges and strategies in progressing through this adolescent developmental stage. Strategies used by teens included (1) "present focused" thought processes; (2) avoidance; (3) assuming an adult peer relationship to the parent without HD; and (4) assuming a parental role to the parent with HD. Throughout data analysis, codes reflecting developmental challenges focused on caregiving and family adjustments as related to adolescent development and maturation. Findings provide insights into challenges at the community level for adolescent growth and normative development for teens in these families. Incorporating adolescent developmental theory in our data analysis strategies was vital to developing a coherent and comprehensive understanding of adolescent concerns and needs. Insights from this study will form the basis of further clinical research that reflects the participation of families and patient focus populations, community based health providers, and academic researchers. Through research in understanding concerns and needs of families facing chronic genetic conditions, clinical evidence-based interventions that advance family health can be developed. This presentation is part of an NINR funded study (J. K. Williams, PI, 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.titleHD Family Teen Data Analysis Using a Developmental Lensen_GB
dc.identifier.urihttp://hdl.handle.net/10755/159156-
dc.description.abstract<table><tr><td colspan="2" class="item-title">HD Family Teen Data Analysis Using a Developmental Lens</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">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; Janet Williams, PhD, MA, PNP, FAAN; Debra Schutte, PhD, RN; Diane Rehak, MSN, BSN, RN; Meghan McGonigal-Kenney, BSN, RN; Lori Jarmon, MA, Project Director; Toni Tripp-Reimer, PhD, RN, FAAN; and Jane Paulsen, PhD, MD</td></tr><tr><td colspan="2" class="item-abstract">Huntington Disease (HD) is a progressive neurological autosomal dominant condition, commonly presenting during the 4th or 5th decade of life. When a parent develops Huntington symptoms, the family members, including teens, change roles and share caregiving responsibilities that coincide, and often conflict, with normal adolescent development. Additionally, adolescent developmental tasks occur within the context of the youth's risk for also developing this progressive fatal genetic condition. Questions regarding teenager concerns, experiences with the HD afflicted family member, strategies for addressing those concerns, and continuing needs were addressed through focus group methodology. Developmental issues regarding difficulties in achieving the normative tasks of establishing their own identity, becoming more autonomous, and planning for the future exemplify the adolescent conflicts within the family system secondary to the progressive chronic genetic condition. Teen responses reflected challenges and strategies in progressing through this adolescent developmental stage. Strategies used by teens included (1) &quot;present focused&quot; thought processes; (2) avoidance; (3) assuming an adult peer relationship to the parent without HD; and (4) assuming a parental role to the parent with HD. Throughout data analysis, codes reflecting developmental challenges focused on caregiving and family adjustments as related to adolescent development and maturation. Findings provide insights into challenges at the community level for adolescent growth and normative development for teens in these families. Incorporating adolescent developmental theory in our data analysis strategies was vital to developing a coherent and comprehensive understanding of adolescent concerns and needs. Insights from this study will form the basis of further clinical research that reflects the participation of families and patient focus populations, community based health providers, and academic researchers. Through research in understanding concerns and needs of families facing chronic genetic conditions, clinical evidence-based interventions that advance family health can be developed. This presentation is part of an NINR funded study (J. K. Williams, PI, R01 NR07970).</td></tr></table>en_GB
dc.date.available2011-10-26T21:45:34Z-
dc.date.issued2011-10-17en_GB
dc.date.accessioned2011-10-26T21:45:34Z-
dc.description.sponsorshipMidwest Nursing Research Societyen_GB
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