Participation amongst people ageing with neuromuscular disease: a qualitative study of lived experiences

Louise Abildgaard Møller; Bente Martinsen; Ulla Werlauff; Pia Dreyer

doi:10.1002/nop2.966

Participation amongst people ageing with neuromuscular disease: a qualitative study of lived experiences

Louise Abildgaard Møller^*, Bente Martinsen, Ulla Werlauff, Pia Dreyer

^*Corresponding author

Publikation: Bidrag til tidsskrift › Tidsskriftartikel › Forskning › peer review

Abstract

AIM: To explore the lived experiences of participation in everyday life ageing with neuromuscular disease (NMD).

DESIGN: A qualitative study using a phenomenological-hermeneutic approach.

METHODS: Data were gathered through interviews with 15 persons living with NMD in 2018. A three-levelled analysis and interpretation influenced by Paul Ricoeur's philosophy were conducted. The Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist was used from May 2018 to December 2018.

RESULTS: Three themes were identified: "Endless adaptations change the fundamentals of everyday life ageing with NMD," "The 'swamp' of deterioration" is traversed through experiences of belonging and relationship," "Being disabled by a professional knowledge gap and stereotypical images." In these themes, the experience of participation in everyday life ageing with NMD appeared to depend on the ability to adapt constantly. Through participation, a sense of belonging and purpose was maintained. Lack of knowledge amongst professionals may negatively affect the ongoing participation of people ageing with NMD.

Originalsprog	Engelsk
Tidsskrift	Nursing Open
Vol/bind	9
Udgave nummer	6
Sider (fra-til)	2675-2682
Antal sider	8
DOI	https://doi.org/10.1002/nop2.966
Status	Udgivet - nov. 2022
Udgivet eksternt	Ja

Bibliografisk note

Link til dokument

10.1002/nop2.966Licens: CC BY

Citer dette

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title = "Participation amongst people ageing with neuromuscular disease: a qualitative study of lived experiences",

abstract = "AIM: To explore the lived experiences of participation in everyday life ageing with neuromuscular disease (NMD).DESIGN: A qualitative study using a phenomenological-hermeneutic approach.METHODS: Data were gathered through interviews with 15 persons living with NMD in 2018. A three-levelled analysis and interpretation influenced by Paul Ricoeur's philosophy were conducted. The Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist was used from May 2018 to December 2018.RESULTS: Three themes were identified: {"}Endless adaptations change the fundamentals of everyday life ageing with NMD,{"} {"}The 'swamp' of deterioration{"} is traversed through experiences of belonging and relationship,{"} {"}Being disabled by a professional knowledge gap and stereotypical images.{"} In these themes, the experience of participation in everyday life ageing with NMD appeared to depend on the ability to adapt constantly. Through participation, a sense of belonging and purpose was maintained. Lack of knowledge amongst professionals may negatively affect the ongoing participation of people ageing with NMD.",

keywords = "Ageing, Hermeneutics, Narratives, Neuromuscular disease, Participation, Qualitative Research, Transitional Care",

author = "M{\o}ller, {Louise Abildgaard} and Bente Martinsen and Ulla Werlauff and Pia Dreyer",

note = "{\textcopyright} 2021 The Authors. Nursing Open published by John Wiley & Sons Ltd.",

year = "2022",

month = nov,

doi = "10.1002/nop2.966",

language = "English",

volume = "9",

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journal = "Nursing Open",

issn = "2054-1058",

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T1 - Participation amongst people ageing with neuromuscular disease

T2 - a qualitative study of lived experiences

AU - Møller, Louise Abildgaard

AU - Martinsen, Bente

AU - Werlauff, Ulla

AU - Dreyer, Pia

PY - 2022/11

Y1 - 2022/11

N2 - AIM: To explore the lived experiences of participation in everyday life ageing with neuromuscular disease (NMD).DESIGN: A qualitative study using a phenomenological-hermeneutic approach.METHODS: Data were gathered through interviews with 15 persons living with NMD in 2018. A three-levelled analysis and interpretation influenced by Paul Ricoeur's philosophy were conducted. The Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist was used from May 2018 to December 2018.RESULTS: Three themes were identified: "Endless adaptations change the fundamentals of everyday life ageing with NMD," "The 'swamp' of deterioration" is traversed through experiences of belonging and relationship," "Being disabled by a professional knowledge gap and stereotypical images." In these themes, the experience of participation in everyday life ageing with NMD appeared to depend on the ability to adapt constantly. Through participation, a sense of belonging and purpose was maintained. Lack of knowledge amongst professionals may negatively affect the ongoing participation of people ageing with NMD.

AB - AIM: To explore the lived experiences of participation in everyday life ageing with neuromuscular disease (NMD).DESIGN: A qualitative study using a phenomenological-hermeneutic approach.METHODS: Data were gathered through interviews with 15 persons living with NMD in 2018. A three-levelled analysis and interpretation influenced by Paul Ricoeur's philosophy were conducted. The Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist was used from May 2018 to December 2018.RESULTS: Three themes were identified: "Endless adaptations change the fundamentals of everyday life ageing with NMD," "The 'swamp' of deterioration" is traversed through experiences of belonging and relationship," "Being disabled by a professional knowledge gap and stereotypical images." In these themes, the experience of participation in everyday life ageing with NMD appeared to depend on the ability to adapt constantly. Through participation, a sense of belonging and purpose was maintained. Lack of knowledge amongst professionals may negatively affect the ongoing participation of people ageing with NMD.

KW - Ageing

KW - Hermeneutics

KW - Narratives

KW - Neuromuscular disease

KW - Participation

KW - Qualitative Research

KW - Transitional Care

U2 - 10.1002/nop2.966

DO - 10.1002/nop2.966

M3 - Journal article

C2 - 34165266

SN - 2054-1058

VL - 9

SP - 2675

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JO - Nursing Open

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