TY - JOUR

T1 - The lived experience of uncertainty in everyday life with MS

AU - Nissen, Nina

AU - Lemche, Jeanet

AU - Reestorff, Camilla Møhring

AU - Schmidt, Marianne

AU - Skjerbæk, Anders Guldhammer

AU - Skovgaard, Lasse

AU - Stenager, Egon

AU - Søgaard, Inge Gjerrild

AU - la Cour, Karen

N1 - Publisher Copyright: © 2021 Informa UK Limited, trading as Taylor & Francis Group.

PY - 2022/9

Y1 - 2022/9

N2 - Purpose: This article examines how issues of control, certainty, and uncertainty are experienced and managed in everyday life with multiple sclerosis (MS) and explores the ways in which people living with MS make sense of these experiences. Materials and methods: Qualitative interviews with 23 women and men diagnosed with MS and four relatives were carried out in Denmark. Drawing on the notion of “phenomenological uncertainty,” a thematic approach was used to analyse the interview data. Results: Three themes characterise participants’ experience of uncertainty: the body and issues of control; symptom fluctuations and disease progression; understanding and interpreting embodied MS experiences. Shared, between the themes, is a focus on the body and multi-faceted bodily aspects of uncertainty across diverse temporalities. Conclusion: Phenomenological uncertainty shapes and pervades the everyday lived experience of MS in the present and future. Gaining a sense of control and certainty in the face of daily uncertainty demands ongoing self-surveillance, and the evaluation and reconciliation of fluctuating MS symptom expressions and disease progression with personal needs, abilities, and management strategies.IMPLICATIONS FOR REHABILITATION Rehabilitation professionals and physicians should consider the lived experience of uncertainty in everyday life with MS in all their contacts with people living with MS. The multi-faceted uncertainties experienced by people living with MS should be actively acknowledged and incorporated in discussions of MS rehabilitation options and when integrating MS guideline content into activities-of-daily-living advice. Discussions of MS medical treatment options should actively consider and integrate the multi-faceted uncertainties experienced by people living with MS.

AB - Purpose: This article examines how issues of control, certainty, and uncertainty are experienced and managed in everyday life with multiple sclerosis (MS) and explores the ways in which people living with MS make sense of these experiences. Materials and methods: Qualitative interviews with 23 women and men diagnosed with MS and four relatives were carried out in Denmark. Drawing on the notion of “phenomenological uncertainty,” a thematic approach was used to analyse the interview data. Results: Three themes characterise participants’ experience of uncertainty: the body and issues of control; symptom fluctuations and disease progression; understanding and interpreting embodied MS experiences. Shared, between the themes, is a focus on the body and multi-faceted bodily aspects of uncertainty across diverse temporalities. Conclusion: Phenomenological uncertainty shapes and pervades the everyday lived experience of MS in the present and future. Gaining a sense of control and certainty in the face of daily uncertainty demands ongoing self-surveillance, and the evaluation and reconciliation of fluctuating MS symptom expressions and disease progression with personal needs, abilities, and management strategies.IMPLICATIONS FOR REHABILITATION Rehabilitation professionals and physicians should consider the lived experience of uncertainty in everyday life with MS in all their contacts with people living with MS. The multi-faceted uncertainties experienced by people living with MS should be actively acknowledged and incorporated in discussions of MS rehabilitation options and when integrating MS guideline content into activities-of-daily-living advice. Discussions of MS medical treatment options should actively consider and integrate the multi-faceted uncertainties experienced by people living with MS.

KW - Bodily surveillance

KW - control

KW - disease progression

KW - everyday life

KW - multiple sclerosis

KW - symptom fluctuation

KW - uncertainty

UR - http://www.scopus.com/inward/record.url?scp=85111455313&partnerID=8YFLogxK

U2 - 10.1080/09638288.2021.1955302

DO - 10.1080/09638288.2021.1955302

M3 - Journal article

C2 - 34297648

AN - SCOPUS:85111455313

VL - 44

SP - 5957

EP - 5963

JO - Disability and Rehabilitation

JF - Disability and Rehabilitation

SN - 0963-8288

IS - 20

ER -