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 caregivers 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 caregivers of people with Huntington disease in 2006 and 2007. Survey responses included frequency and intensity of concerns, and narrative comments. Data were analyzed 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 analyzed. 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 regarding family finances and United Kingdom caregivers expressed significantly greater personal sadness. Both groups expressed concern regarding isolation from family. Although family caregivers in both countries expressed concern regarding 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 caregiver concerns and consistent with national healthcare systems.
Aim This paper is a report of a study of the perceptions of family caregivers regarding the availability and adequacy of health and social care services for their family member with Huntington disease, and to compare findings from these reports in United Kingdom and United States of America samples. Background Huntington disease is an inherited neurodegenerative condition. Family members often take responsibility for care of relatives with long-term conditions. Studies have demonstrated there are both positive and negative outcomes for carers. Methods During 2006 and 2007, respondents from the United Kingdom (n = 108) and the United States (n = 119) who were caring for a relative affected with Huntington disease completed the Community Health Care Services Scale to identify areas of concern and the extent to which specific issues bothered carers. Data were analysed using statistical tests including chi-square, t-tests and factor analysis. Results were compared between carers in the two cohorts. Results Three main factors were derived: ‘community resources’, ‘individualized care’ and ‘knowledge of Huntington disease’. Carers had concerns about the knowledge of healthcare professionals providing care and thought that there were insufficient services to support them and the affected person. There were different challenges for carers when the affected person had a long-term neurodegenerative condition because these carers were also likely to have responsibilities for earning and caring for children. Conclusion Comprehensive facilities and resources are needed to support families affected by long-term complex conditions. Healthcare professionals need to be aware of the health needs of carers as well as those of the affected person.
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