A Phenomenological Understanding of Aging "Well" With Multiple Sclerosis

对多发性硬化症患者“健康”老龄化的现象学理解

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Abstract

BACKGROUND AND OBJECTIVES: As the life expectancy of the multiple sclerosis (MS) community increases, new innovations and understandings of what it is to age "well" are needed. Building on a line of work exploring the meaning and experiences of aging with a disabling condition, and showing how and why people aging with MS experience this phenomenon differently, this paper progresses aging and disability literature by (re)conceptualizing what "wellbeing" means to people aging with MS, and how wellbeing may be enhanced or compromised. RESEARCH DESIGN AND METHODS: Working with 40 persons with MS over the age of 60, we used a Heideggerian phenomenological framework to co-construct what wellbeing meant among persons aging with MS. RESULTS: Emphasizing the importance of the "everdayness" of wellbeing experiences, persons aging with MS discussed how wellbeing was related to "doing, being, and becoming; the ability to do the things they wanted to do, be the person they wanted to be, and the autonomy, opportunity, and ability to do something, or become someone, different." The ability to be, do or become was, however, dependent on, "the power of people," "sociocultural privilege" and "writing one's own health narrative." DISCUSSION AND IMPLICATIONS: These findings, that are contextualized within the sociocultural boundaries of participants' situations, can help support persons with MS, families and friends, caregivers, health care professionals and interventionists that are working towards enhancing quality of life among persons aging with MS.

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