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Journal of Genetic Counseling

, Volume 21, Issue 5, pp 662–670 | Cite as

Couples’ Coping in Prodromal Huntington Disease: A Mixed Methods Study

  • Nancy R. Downing
  • Janet K. Williams
  • Anne L. Leserman
  • Jane S. Paulsen
Original Research

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.

Keywords

Huntington disease Coping Genetic counseling Mixed methods research 

Notes

Funding

Jane S. Paulsen is supported by the National Institutes for Health, National Institute of Neurological Disorders and Stroke (NS40068) and the Cure Huntington’s Disease Initiative (CHDI) Foundation, Inc.

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Copyright information

© National Society of Genetic Counselors, Inc. 2012

Authors and Affiliations

  • Nancy R. Downing
    • 1
  • Janet K. Williams
    • 1
  • Anne L. Leserman
    • 2
  • Jane S. Paulsen
    • 2
  1. 1.The University of Iowa College of NursingIowa CityUSA
  2. 2.The University of Iowa Carver College of MedicineIowa CityUSA

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