Experience of Relatives of Patients with Huntington’s Disease

Abstract

Objectives: The objectives of this study were to explore the experience of relatives of patients with Huntington's disease and to develop a foundation for discussing nursing professional's roles in the care of patients with this disease. Methods: Data collected through semi-structured interviews were analyzed by a qualitative descriptive approach. Results: Participants (mean age = 53.6; SD = ±28.5) were 10 first-degree blood relatives of patients with Huntington's disease. Results of our analysis generated 7 categories and 39 subcategories describing participants' experience about their families and the disease. Many appeared to have a "sense of alienation toward affected individuals" and only a "vague awareness of their kin's disease," given the existence of family members with similar symptoms. They also often reported they felt "constrained by their hereditary status," and were "hesitant to tell others about their family history." In addition, participants who spent time with patients often "imagined themselves contracting the disease," and reported that "changes in their relative's personality interferred with their lives." Also participants felt that "patients and their families stood alone from the communities". Conclusion: These first-degree relatives of patients with Huntington's disease appeared to have complicated feelings toward their own hereditary disease status as well as that of other family members and the affected relative.