The Impact of Early-Onset Hereditary Essential Tremor on Affected Individuals: A Qualitative Study

DSpace Repository

Show simple item record

dc.contributor.advisor Schneider, Gretchen Ahles, Lauren 2011-05-23T19:58:21Z 2011-05-23T19:58:21Z 2011
dc.description.abstract Essential tremor (ET) is a non-life-threatening progressive neurological disorder that causes postural and kinetic tremor in the hands and other body parts. Age of onset, degree of tremor severity, and body parts affected are all highly variable, and an estimated 10 million Americans are affected. The genetics of ET is currently not well understood, but many individuals have a positive family history with an autosomal dominant pattern of inheritance. ET is often regarded as a disorder of the elderly, but with peaks in tremor manifestation in the second and sixth decades of life, many young individuals are also affected. Few studies have addressed the younger ET population and issues facing these individuals. In our study, eight individuals with early-onset (tremor onset before age 30) hereditary essential tremor participated in audiotaped interviews to further explore the impact of this condition on their lives. The format of the interview was based on a semi-structured interview guide that prompted discussion of life issues. The three main themes derived from the interviews included difficulties in social v situations, restrictions and limitations, and adaptation, coping, and acceptance. ET had a significant impact on social life, interactions with strangers, functionality in daily living, careers and hobbies, relationships with friends and family, and overall attitude. Positive and negative experiences with medical providers and support groups were also described. Our study provided a detailed look into the lives of young individuals with ET, and the findings suggest that there are many functional and emotional issues surrounding this condition. The degree to which these issues impact those with ET may vary based on the individual’s age and age of tremor onset. Medical providers need to be aware of the multidimensional effects of ET, and genetic counselors may be able to assist in providing support and resources to individuals with ET.
dc.description.sponsorship Brandeis University, Graduate School of Arts and Sciences
dc.format.mimetype application/pdf
dc.language English
dc.language.iso eng
dc.publisher Brandeis University
dc.relation.ispartofseries Brandeis University Theses and Dissertations
dc.rights Copyright by Lauren Ahles 2011
dc.subject physical disability
dc.subject early-onset disorder
dc.subject essential tremor
dc.subject emotional issues
dc.title The Impact of Early-Onset Hereditary Essential Tremor on Affected Individuals: A Qualitative Study
dc.type Thesis
dc.contributor.department Graduate Program in Genetic Counseling MS Masters Genetic Counseling Brandeis University, Graduate School of Arts and Sciences

Files in this item

This item appears in the following Collection(s)

Show simple item record

Search BIR


My Account