Literature DB >> 23531469

Strategies used by teens growing up in families with Huntington disease.

Janet K Williams1, Martha Driessnack, J Jackson Barnette, Kathleen J H Sparbel, Anne Leserman, Sean Thompson, Jane S Paulsen.   

Abstract

The purpose of this study was to identify helpfulness of strategies used by teens growing up in families with Huntington disease (HD). Forty-four participants responded to a mailed HD Family Survey-Teens Strategies. Strategies were those with strong positive correlation between use and perceived helpfulness, and those with negative or inverse relationships. Obtaining information, thinking about or doing something else, and actions on behalf of the parent with HD were rated as highest use and perceived helpfulness. Emotional suppression had high use but low helpfulness. Participants reported using numerous helpful strategies. Social support was often unavailable to help manage teen concerns.
Copyright © 2013 Elsevier Inc. All rights reserved.

Entities:  

Keywords:  Adolescence; Coping; Family; Huntington disease; Young adult

Mesh:

Year:  2013        PMID: 23531469      PMCID: PMC3759611          DOI: 10.1016/j.pedn.2013.02.030

Source DB:  PubMed          Journal:  J Pediatr Nurs        ISSN: 0882-5963            Impact factor:   2.145


  18 in total

1.  Development of the HD-Teen Inventory.

Authors:  Martha Driessnack; Janet K Williams; J Jackson Barnette; Kathleen J Sparbel; Jane S Paulsen
Journal:  Clin Nurs Res       Date:  2011-06-01       Impact factor: 2.075

2.  Couples' coping in prodromal Huntington disease: a mixed methods study.

Authors:  Nancy R Downing; Janet K Williams; Anne L Leserman; Jane S Paulsen
Journal:  J Genet Couns       Date:  2012-01-26       Impact factor: 2.537

3.  Three approaches to qualitative content analysis.

Authors:  Hsiu-Fang Hsieh; Sarah E Shannon
Journal:  Qual Health Res       Date:  2005-11

4.  Young people's experiences of growing up in a family affected by Huntington's disease.

Authors:  K Forrest Keenan; Z Miedzybrodzka; E van Teijlingen; L McKee; S A Simpson
Journal:  Clin Genet       Date:  2007-02       Impact factor: 4.438

5.  Individual differences in adolescent health symptoms: the effects of gender and coping.

Authors:  Gregory S Wilson; Mary E Pritchard; Brian Revalee
Journal:  J Adolesc       Date:  2005-01-21

6.  The impact of Huntington's disease on family life.

Authors:  Marina Vamos; John Hambridge; Matt Edwards; John Conaghan
Journal:  Psychosomatics       Date:  2007 Sep-Oct       Impact factor: 2.386

7.  Experiences of teens living in the shadow of Huntington Disease.

Authors:  Kathleen J H Sparbel; Martha Driessnack; Janet K Williams; Debra L Schutte; Toni Tripp-Reimer; Meghan McGonigal-Kenney; Lori Jarmon; Jane S Paulsen
Journal:  J Genet Couns       Date:  2008-03-18       Impact factor: 2.537

8.  "Holding your breath": interviews with young people who have undergone predictive genetic testing for Huntington disease.

Authors:  Rony E Duncan; Lynn Gillam; Julian Savulescu; Robert Williamson; John G Rogers; Martin B Delatycki
Journal:  Am J Med Genet A       Date:  2007-09-01       Impact factor: 2.802

9.  How young people find out about their family history of Huntington's disease.

Authors:  Karen Forrest Keenan; Edwin van Teijlingen; Lorna McKee; Zosia Miedzybrodzka; Sheila A Simpson
Journal:  Soc Sci Med       Date:  2009-03-26       Impact factor: 4.634

10.  Living at risk: concealing risk and preserving hope in Huntington disease.

Authors:  Kimberly A Quaid; Sharon L Sims; Melinda M Swenson; Joan M Harrison; Carol Moskowitz; Nonna Stepanov; Gregory W Suter; Beryl J Westphal
Journal:  J Genet Couns       Date:  2007-10-18       Impact factor: 2.537

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  2 in total

1.  The Spectrum of Caregiving in Palliative Care for Serious, Advanced, Rare Diseases: Key Issues and Research Directions.

Authors:  Lynn S Adams; Jeri L Miller; Patricia A Grady
Journal:  J Palliat Med       Date:  2016-06-01       Impact factor: 2.947

2.  Searching for Answers: Information-Seeking by Young People At-Risk for Huntington's Disease.

Authors:  Colby L Chase; Beverly M Yashar; Chandler Swope; Roger L Albin; Wendy R Uhlmann
Journal:  J Huntingtons Dis       Date:  2022
  2 in total

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