Exploration of transitional life events in individuals with Friedreich ataxia: Implications for genetic counseling
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RESEARCH
Open Access
Exploration of transitional life events in individuals with Friedreich ataxia: Implications for genetic counseling V Brook White1*, Jennifer R Leib2, Jennifer M Farmer3, Barbara B Biesecker4
Abstract Background: Human development is a process of change, adaptation and growth. Throughout this process, transitional events mark important points in time when one’s life course is significantly altered. This study captures transitional life events brought about or altered by Friedreich ataxia, a progressive chronic illness leading to disability, and the impact of these events on an affected individual’s life course. Methods: Forty-two adults with Friedreich ataxia (18-65y) were interviewed regarding their perceptions of transitional life events. Data from the interviews were coded and analyzed thematically using an iterative process. Results: Identified transitions were either a direct outcome of Friedreich ataxia, or a developmental event altered by having the condition. Specifically, an awareness of symptoms, fear of falling and changes in mobility status were the most salient themes from the experience of living with Friedreich ataxia. Developmental events primarily influenced by the condition were one’s relationships and life’s work. Conclusions: Friedreich ataxia increased the complexity and magnitude of transitional events for study participants. Transitional events commonly represented significant loss and presented challenges to self-esteem and identity. Findings from this study help alert professionals of potentially challenging times in patients’ lives, which are influenced by chronic illness or disability. Implications for developmental counseling approaches are suggested for genetic counseling.
Background Human development can be described in terms of key transitional events, or significant times of change. Transitional events initiate shifts in the meaning or direction of life and require the individual to develop skills or utilize coping strategies to adapt to a novel situation [1,2]. A successful transition has been defined as the development of a sense of mastery over the changed event [3]. Transitions can be influenced by a variety of factors including one’s stage of development, such as graduation from high school, historical events, including war, and idiosyncratic factors, such as health status [4,5]. Of particular interest in the present study are transitional life events, brought about or altered by progressive chronic
* Correspondence: [email protected] 1 Clinical Genetics, Carolinas Medical Center, PO Box 32861, Charlotte, NC 28232-2861, USA Full list of author information is available at the end of the article
illness and disability, and the impact of these events on the lives of affected individuals. It has been recognized that the clinical characteristics of a chronic illness or disability may alter the course and timing of many developmentally-related transitional events [6]. For example, conditions associated with a shortened lifespan may cause an individual
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