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

AbstractAim: 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 phi-losophy 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 fundamen-tals 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 partici-pation 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 partici-pation of people ageing with NMD.