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.