Thesis

Caregiver stress in families affected by Huntington's Disease

Background. Existing research regarding Huntington’s disease caregivers reports that this population demonstrates significant amounts of stress while caring for a person with HD. However, there is little research available that looks deeper into the specific factors that contribute to stress and what resources are offered or available to HD caregivers that help combat the stress factors associated with care giving. Methods. Caregivers were recruited through the Huntington’s disease Society of America support groups and HD Center of Excellences. 6 caregivers were recruited to participate in this qualitative research. Phone interviews were conducted (average time: 1.5 hours). Results. The researcher found that stress factors associated with HD caregivers are multi-layered. These factors included: Daily living, dependency, loss of relationships, physical stress, fear of emergency, and lack of professional help. Professional resources are available but not utilized by caregivers due to the professional lack of knowledge and education surrounding HD, thus making those resources and support, a stress factor for HD caregivers. Conclusions. This research found that caregivers have a variety of stress factors that all intertwine, causing an overwhelming sense of stress. Social service professionals working with HD families must have a basic understanding of HD symptoms, development, and caregiver needs in order to appropriately help decrease stress in the lives of HD caregivers.

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