Literature DB >> 22278219

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

Nancy R Downing1, Janet K Williams, Anne L Leserman, Jane S Paulsen.   

Abstract

Huntington disease (HD) includes a prodromal phase with behavioral, cognitive, and motor function decline occurring up to 15 years prior to diagnosis. This study used mixed methods to examine how people in the prodromal phase and their companions coped with noticed changes. Twenty-three couples completed a semi-structured interview and Brief COPE. Participants with prodromal HD used acceptance, emotional support, and planning most frequently; companions used acceptance, planning, and active coping. Least frequently used coping strategies for each were denial, behavioral disengagement, and substance use. Qualitative interviews revealed coping strategies not included in the Brief COPE. Participants with prodromal HD used prescription medications, coping as a couple, hope, and self-monitoring; companions used hope and helping their partners. Many of the coping procedures were rated as effective, especially when changes were not severe. Couples may benefit from counseling that emphasizes using active coping strategies for changes that can be compensated for and acceptance for changes that cannot in prodromal HD. Findings from this study may be helpful for counseling patients and significant others facing other neurodegenerative conditions with prodromal or early phases, such as Alzheimer disease and Parkinson disease.

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Year:  2012        PMID: 22278219      PMCID: PMC3568751          DOI: 10.1007/s10897-012-9480-3

Source DB:  PubMed          Journal:  J Genet Couns        ISSN: 1059-7700            Impact factor:   2.537


  31 in total

Review 1.  Defense mechanisms in psychology today. Further processes for adaptation.

Authors:  P Cramer
Journal:  Am Psychol       Date:  2000-06

2.  "No one else sees the difference: "family members' perceptions of changes in persons with preclinical Huntington disease.

Authors:  Janet K Williams; Rebekah Hamilton; Carissa Nehl; Meghan McGonigal-Kenney; Debra L Schutte; Kathleen Sparbel; Emily Birrer; Toni Tripp-Reimer; Rose Friedrich; Elizabeth Penziner; Lori Jarmon; Jane Paulsen
Journal:  Am J Med Genet B Neuropsychiatr Genet       Date:  2007-07-05       Impact factor: 3.568

3.  You want to measure coping but your protocol's too long: consider the brief COPE.

Authors:  C S Carver
Journal:  Int J Behav Med       Date:  1997

4.  Mild cognitive impairment in prediagnosed Huntington disease.

Authors:  K Duff; J Paulsen; J Mills; L J Beglinger; D J Moser; M M Smith; D Langbehn; J Stout; S Queller; D L Harrington
Journal:  Neurology       Date:  2010-07-07       Impact factor: 9.910

5.  Pre- and postnatal depression and coping: a comparative approach.

Authors:  Claude de Tychey; Elisabeth Spitz; Serge Briançon; Joëlle Lighezzolo; Françoise Girvan; Aurore Rosati; Audrey Thockler; Stephanie Vincent
Journal:  J Affect Disord       Date:  2005-04       Impact factor: 4.839

6.  Couples' attributions for work function changes in prodromal Huntington disease.

Authors:  Nancy R Downing; Janet K Williams; Jane S Paulsen
Journal:  J Genet Couns       Date:  2010-03-23       Impact factor: 2.537

7.  Health-related quality of life in Huntington's disease: Which factors matter most?

Authors:  Aileen K Ho; Abigail S Gilbert; Sarah L Mason; Anna O Goodman; Roger A Barker
Journal:  Mov Disord       Date:  2009-03-15       Impact factor: 10.338

8.  Living with Huntington's disease: illness perceptions, coping mechanisms, and spouses' quality of life.

Authors:  D I Helder; A A Kaptein; G M J Van Kempen; J Weinman; J C Van Houwelingen; R A C Roos
Journal:  Int J Behav Med       Date:  2002

9.  A new model for prediction of the age of onset and penetrance for Huntington's disease based on CAG length.

Authors:  D R Langbehn; R R Brinkman; D Falush; J S Paulsen; M R Hayden
Journal:  Clin Genet       Date:  2004-04       Impact factor: 4.438

10.  Avoidance as a strategy of (not) coping: qualitative interviews with carers of Huntington's Disease patients.

Authors:  Alison Lowit; Edwin R van Teijlingen
Journal:  BMC Fam Pract       Date:  2005-09-14       Impact factor: 2.497

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  8 in total

1.  Sacred Spaces: Religious and Secular Coping and Family Relationships in the Neonatal Intensive Care Unit.

Authors:  Gina M Brelsford; Joshua Ramirez; Kristin Veneman; Kim K Doheny
Journal:  Adv Neonatal Care       Date:  2016-08       Impact factor: 1.968

2.  Onset of Huntington's disease: can it be purely cognitive?

Authors:  Jane S Paulsen; Jeffrey D Long
Journal:  Mov Disord       Date:  2014-08-20       Impact factor: 10.338

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

Authors:  Janet K Williams; Martha Driessnack; J Jackson Barnette; Kathleen J H Sparbel; Anne Leserman; Sean Thompson; Jane S Paulsen
Journal:  J Pediatr Nurs       Date:  2013-03-24       Impact factor: 2.145

4.  Everyday cognition in prodromal Huntington disease.

Authors:  Janet K Williams; Ji-In Kim; Nancy Downing; Sarah Farias; Deborah L Harrington; Jeffrey D Long; James A Mills; Jane S Paulsen
Journal:  Neuropsychology       Date:  2014-07-07       Impact factor: 3.295

5.  How do partners find out about the risk of Huntington's disease in couple relationships?

Authors:  Karen Forrest Keenan; Sheila A Simpson; Zosia Miedzybrodzka; David A Alexander; June Semper
Journal:  J Genet Couns       Date:  2013-01-09       Impact factor: 2.537

6.  Perceived Effects of Neuropsychiatric Symptoms on Functional Status in Early-stage Huntington Disease.

Authors:  Jessie S Gibson; Bethany A Rhoten; Sheila H Ridner; Daniel O Claassen
Journal:  West J Nurs Res       Date:  2021-02-05       Impact factor: 1.774

Review 7.  Social Withdrawal in Huntington's Disease: A Scoping Review.

Authors:  Jessie S Gibson; Kristen Springer
Journal:  J Huntingtons Dis       Date:  2022

8.  Families Affected by Huntington's Disease Report Difficulties in Communication, Emotional Involvement, and Problem Solving.

Authors:  Celine M H Jona; Izelle Labuschagne; Emily-Clare Mercieca; Fiona Fisher; Cathy Gluyas; Julie C Stout; Sophie C Andrews
Journal:  J Huntingtons Dis       Date:  2017
  8 in total

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