Quality of Life and Autonomy in Emerging Adults with Early-Onset Neuromuscular Disorders

Adult Genetics Clinic, University of Colorado Hospital, Aurora, 80045, USA.
Journal of Genetic Counseling (Impact Factor: 2.24). 02/2012; 21(5):713-25. DOI: 10.1007/s10897-012-9492-z
Source: PubMed


Emerging adulthood is an important period in the development of one's identity and autonomy. The ways in which identity and autonomy are viewed by emerging adults and how they impact quality of life (QoL) in individuals with early-onset neuromuscular conditions is not yet known. This study focused on understanding and exploring relationships between self-perceptions of emerging adulthood, autonomy, and QoL. Five previously validated measures were incorporated into an online survey and distributed to young adults with early-onset neuromuscular conditions and unaffected controls. Topics explored included individuals' views regarding their overall QoL, disease-specific QoL, components of emerging adulthood, and autonomy. We found that a sense of higher disease impact was associated with a lower Overall General QoL. Additionally, perceptions of key autonomy factors "negativity" and "instability" were uniquely associated with Overall General QoL in the case group as compared to controls, whereas "attitudinal autonomy" (attaining the ability to plan and follow through with goals) was important to this age group regardless of health status. The specific factors of emerging adulthood and autonomy that were significantly correlated with Overall General QoL can be used for developing targeted counseling and interventions to improve QoL for individuals and their families.

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    • "Findings emerging from these studies also suggest that views of this time period are linked to important psychosocial indices of adjustment and maladjustment. For example, viewing this period as a time of exploration and possibilities is positively linked to quality of life (Huismann et al. 2012) and life satisfaction (Negru 2012), while viewing this period as a time of instability is negatively associated with life satisfaction (Huismann et al. 2012; Reifman et al. 2007) and greater depressive symptomology (Luyckx et al. 2011). Furthermore, the view that this period of life is a time of exploration and possibility is linked to greater drug and alcohol use (Lisha et al. 2012) while the view that emerging adulthood is a time to be focused on other people is negatively associated with marijuana use and binge drinking (Allem et al. 2013). "
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