A qualitative investigation of lay perspectives of diagnosis and self-management strategies employed by people with progressive multiple sclerosis

Health
Julia FrostNicky Britten

Abstract

This article explores how people with progressive multiple sclerosis give meaning to their experiences. It builds upon the self-management literature, which has captured the tension between the desire for retaining normalcy and the increasing burden of self-management associated with chronic disease progression. This repeat interview study is empirically grounded in 28 interviews with 14 people with progressive multiple sclerosis. We identified gender differences in diagnosis-seeking which impacted subsequent sense-making. Male respondents found a diagnosis of multiple sclerosis difficult to come to terms with, and an enduring sense of loss or anger could inhibit further sense-making. A diagnosis of multiple sclerosis was more difficult to obtain for women respondents, and any sense of certainty that diagnosis provided framed their subsequent sense-making strategies. The complex sequelae of multiple sclerosis require that self-management strategies are both contextual and timely, although even the most accomplished self-managers can lose their sense of self with neurodegeneration. Disease progression can be associated with suicidal ideation, suggesting the need for greater dialogue to ensure that people with multiple sclerosis ...Continue Reading

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Citations

Sep 12, 2018·Sociology of Health & Illness·Heidrun Åm
Jun 25, 2020·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Jane DesboroughChristine Phillips
Mar 17, 2020·Disability and Rehabilitation·Christopher MeekRoshan das Nair
Nov 27, 2019·Neurodegenerative Disease Management·Jiwon OhCatherine Larochelle
Aug 21, 2020·Patient Education and Counseling·Åsa AudulvTanya L Packer
Jan 16, 2021·Patient Preference and Adherence·Elisabeth G CeliusJürg Kesselring
Nov 26, 2021·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Hikari AndoCarolyn A Young

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Software Mentioned

NVivo
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