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Participation amongst people ageing with neuromuscular disease: a qualitative study of lived experiences
Louise Abildgaard Møller1, Bente Martinsen2, Ulla Werlauff3
1Research Department of Neurology, Aarhus University Hospital, Aarhus N, Denmark.
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.
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