Family carer personal concerns in Huntington disease


  • Janet K. Williams,

    1. Janet K. Williams PhD RN FAAN Kelting Professor of Nursing The University of Iowa, Iowa, USA
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  • Heather Skirton,

    1. Heather Skirton PhD RGN Registered Genetic Counsellor Professor of Applied Health Genetics Deputy Head (for Research) of the School of Nursing and Midwifery University of Plymouth, Taunton, UK
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  • James Jackson Barnette,

    1. James Jackson Barnette MA PhD Associate Dean for Academic and Student Affairs Professor of Biostatistics and Informatics Colorado School of Public Health University of Colorado Denver, Aurora, Colorado, USA
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  • Jane S. Paulsen

    1. Jane S. Paulsen PhD Professor of Psychiatry, Neurology, Psychology and Neurosciences The Carver College of Medicine The University of Iowa, Iowa, USA
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Janet K. Williams: e-mail:


williams j.k., skirton h., barnette j.j. & paulsen j.s. (2012) Family carer personal concerns in Huntington disease. Journal of Advanced Nursing68(1), 137–146.


Aim.  To examine and compare the personal concerns of family members providing care for people with Huntington disease in the United Kingdom and the United States.

Background.  Family carers of people with Huntington disease may feel burdened by caregiving responsibilities and concerned about illness risk for relatives.

Method.  A mailed personal concerns survey was completed by 108 United Kingdom and 119 United States adult family carers of people with Huntington disease in 2006 and 2007. Survey responses included frequency and intensity of concerns, and narrative comments. Data were analysed using descriptive statistics of the products of frequency and intensity of reaction scores to identify a personal concerns index for items with the twelve highest combined scores. Factor analysis identified three factors, which were compared between respondents by factor and items within factors using t tests mean frequency by intensity scores. Narrative comments were thematically analysed.

Results.  Three main factors were labelled impact of role change, sense of isolation and concerns for children. Within the role change factor, United States family caregivers had significantly higher concerns about family finances and United Kingdom carers expressed significantly greater personal sadness. Both groups expressed concern about isolation from family. Although family carers in both countries expressed concern about their children, those of United States caregivers were significantly higher.

Conclusion.  Further studies are required to identify benefits of support services that are specific to carer concerns and consistent with national healthcare systems.