'Just deal': navigating life and loss in pediatric multiple sclerosis
Date
2012
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Abstract
Multiple sclerosis (MS) is an acquired, chronic disease of the central nervous system, which can cause unpredictable disability, known to typically affect adults. Over the past 10 -15 years, practitioners and researchers have come to recognize that children and adolescents are also at risk for this disease. This growing awareness has resulted in an exponential growth in the knowledge about pediatric MS. Unfortunately, there continues to be a significant dearth of research addressing the psychosocial sequelae of MS for adolescents. Young individuals diagnosed with MS must not only adjust to the neurologically-based symptoms and treatment regimes that impact their daily lives, they must also face the unique challenges of integrating these symptoms and treatments into their normative developmental process. This study was designed to explicate the process of adjustment to a diagnosis of pediatric MS. Youth participants ranged in age from 16 to 21 and all were diagnosed with MS by the end of their 18th year. Six matched parent-adolescent/young adult pairs, plus one young adult, were recruited from rural and urban settings across western Canada and participated in separate individual interviews and online biogs. Using Charmaz' constructivist grounded theory methodology, 1 developed a preliminary theory that captures the experience of grief in the adjustment process of youth with MS. The core of the theoretical model focuses on two separate, yet overlapping, processes: recurring loss and carrying on. Significant turning points influenced the oscillation between these two processes, highlighting the interconnection of intra personal and interpersonal dynamics in the adjustment process. Results reinforce and extend current grief literature, while also providing a new perspective on adjustment to pediatric chronic illness. Specific implications for counselling youth with MS, in addition to ecological considerations, are presented.
Description
Bibliography: p. 139-168
Includes copy of ethics approval. Original copy with Partial Copyright Licence.
Includes copy of ethics approval. Original copy with Partial Copyright Licence.
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Citation
Thannhauser, J. (2012). 'Just deal': navigating life and loss in pediatric multiple sclerosis (Doctoral thesis, University of Calgary, Calgary, Canada). Retrieved from https://prism.ucalgary.ca. doi:10.11575/PRISM/4723