Coping With Everyday Stressors In Adiposis Dolorosa: Is There a Role for Leisure?

Date
2016-01
Authors
Mukherjee, Urmi Jahar
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Faculty of Graduate Studies and Research, University of Regina
Abstract

Adiposis Dolorosa (AD) is a rare and painful disease characterized by multiple benign tumours (lipomas) that primarily occur on the trunk, upper arms and legs, but eventually spread throughout the body (National Organization for Rare Disorders - NORD, 2012). The lipomas press against nerves and cause cardinal, nerve pain - the most common symptom of AD. Pain is also accompanied by chronic fatigue, brain fog and generalized obesity (Hansson, Svensson, & Brorson, 2012). With no known cure, patients receive symptomatic treatment with substantial risk due to multiple medications (NORD, 2012). The complications of AD are burdensome and impact the overall quality of life (QoL) (Wortham & Tomlinson, 2005). Several studies have noted the positive role of leisure in coping and self-management of chronic illness (Castelli & Valley, 2007; Iwasaki, Coyle, & Shank, 2010; Kleiber & Hutchinson, 2010). Leisure may offer opportunities for creativity, participatory activities via clubs and organizations, social networking, spending time with family and loved ones, as well as enjoying personal space and freedom to recharge and look forward to life (Adams, Leibbrandt, & Moon, 2011; Hutchinson & Nimrod, 2012). Although the relationship between leisure and chronic illness is promising, leisure within the context of rare chronic illnesses has not yet been considered. The purpose of this study is to understand the lived experiences of individuals with AD and explore the role of leisure in coping with everyday stressors associated with it. Guided by hermeneutic phenomenology, telephone interviews were conducted with four persons with AD. Interviews were recorded and transcribed verbatim, and data were analyzed using detailed line by line analysis (van Manen, 1997). The findings indicate that amid the several negative life events brought about by AD, leisure provided participants with time, space and meaningful engagements to cope with daily stress and symptoms. Amid changes in relationships, threats to identity, and the apprehension of living with a poorly understood illness, experiencing shared leisure with family, utilizing free time to relax, practicing religion/faith, making behavioural adjustments and pursuing meaningful activities such as advocacy of rare chronic diseases helped participants maintain a positive attitude and live well with AD.

Description
A Thesis Submitted to the Faculty of Graduate Studies and Research In Partial Fulfillment of the Requirements for the Degree of Master of Science in Kinesiology and Health Studies, University of Regina.viii , 203 p.
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