Academic journal article Journal of Nursing Measurement

Development of the Huntington Disease Family Concerns and Strategies Survey from Focus Group Data

Academic journal article Journal of Nursing Measurement

Development of the Huntington Disease Family Concerns and Strategies Survey from Focus Group Data

Article excerpt

Health concerns and management strategies among families of young and middle-age adults with Huntington's disease (HD) are unknown. This study developed and tested psychometric properties of the Huntington Disease Family Concerns and Strategies Survey (HDFCSS). Focus group data from 91 adult family members were used to develop content. Content analysis yielded four domains that were transferred into Personal, Person With HD, Community Health Care Services, and Strategies scales. Focus group data, expert validation, and cognitive interviews demonstrated survey content validity. Cronbach's alpha internal consistency coefficients for the scales were 0.83 or above. The measure can be used to generate reliable and valid data to identify adult family members' health-related concerns and management strategies for themselves and persons with HD.

Keywords: family; Huntington's disease; health management; focus group

Family members of persons with conditions that include cognitive and behavioral impairments face multiple challenges, and caregiving by family may have beneficial as well as harmful effects (Aubeeluck & Buchanan, 2006; LoGiudice & Hassett, 2005). Despite the developing body of knowledge on informal caregivers, much of this knowledge reflects caregiving by and for persons in their later adult years and has less often included populations with an onset earlier in life. The timing of the onset of a disorder can have profound implications on the lives of people in the family, depending on the life stage of each individual and the family (Rolland & Williams, 2006 ). Management of chronic conditions by family members often extends beyond caregiving tasks for the person with the disorder to include assisting other caregivers, general family management, and health care environment maintenance. Self- and family management of chronic conditions mandates that behaviors to manage a condition occur within the context of one's everyday life (Grey, Knafl, & McCorkle, 2006).

Family management of a condition such as Huntington's disease (HD) is additionally complicated by the heritability of disease risk for the care recipient's offspring and siblings and the availability of predictive testing for persons who have not yet developed clinical symptoms of the condition. HD is an autosomal dominant disorder in which the offspring of each person with this condition has a 50% chance of inheriting the gene mutation and developing the disease. Persons age 18 or over who are at risk for HD can learn the likelihood that they will develop the disease through predictive testing to identify the presence of an expansion in the HD gene (Rosenblatt, Ranen, Nance, & Paulsen, 1999). Although characteristic motor symptoms have not yet appeared in the so-called prodromal phase of HD, diminished ability to perceive one's own behavior creates health management challenges for family members of persons in the earliest stages of this condition (Hoth et al., 2007; Williams et al., 2007). Although approximately 30,000 persons in the United States have HD and another approximately 150,000 are at genetic risk (Dubinsky & Huntington's Disease Peer Workgroup Members, 2004), existing measures do not address the spectrum of issues facing families of persons with HD across the disease trajectory.

The Problem Behaviours Assessment for HD scale (Craufurd, Thompson, & Snowden, 2001) is a measure of behavioral abnormalities in HD for persons with a clinical diagnosis of HD and is completed by health care providers. No existing measures were located that address how family members manage their concerns during the prodromal phase or are intended for family members to complete across the disease trajectory.

Researchers have identified genetic aspects of other neurodegenerative conditions appearing during young to middle adulthood, including early-onset Alzheimer's disease (Ertekin-Taner, 2007), very early onset Alzheimer's disease (Filley et al. …

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