A qualitative research analysis of the relationship between fatigue and social interaction in patients with Friedreich Ataxia

Abstract

By Kelsey Cappel, Communication Sciences and Disorders; Caroline Spencer, University of Cincinnati

Advisor: Dr. Lesley Raisor-Becker

Abstract: Background: Friedreich's ataxia (FRDA) is a genetic disease which involves progressive damage to the nervous system, including movement and muscle coordination problems. The symptoms and fatigue involved with FRDA deters or inhibits patients from participating in life events and therefore lowers quality of life. Qualitative research methods provide insight on how to improve social interactions and quality of life for patients with FRDA. Goal: The goal of this qualitative research study is to determine the impact of fatigue on social interaction, relationships, and overall quality of life in three patients with FRDA. Methods: As part of a large study, thirteen adults with FRDA were interviewed to discuss the impact of the disease on their life. Participants were also asked to complete a 14-day fatigue journal. Three participants who specifically discussed the impact of their fatigue on their social interactions, relationships, and overall quality of life during their interviews were selected for this qualitative study. Results: Results indicate that fatigue in patients with FDRA may have a significant impact on social interactions, relationships, and quality of life. Discussion: Fatigue may have a substantial impact on the lives of many individuals with FRDA and may deter individuals from socializing due a need to prioritize energy for other events. Fatigue may strain relationships by placing more responsibility on loved ones, causing individuals with FRDA to feel self-conscious about the effects of their fatigue on those around them.