Abstract
AimTo explore the lived experiences of participation in everyday life ageing with neuromuscular disease (NMD).DesignA qualitative study using a phenomenological‐hermeneutic approach.MethodsData 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.ResultsThree 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.
Highlights
The term “everyday life” covers all human activities situated in and across a range of spaces and contexts such as home, work, educational institutions and recreational arenas (Schraube & Højholt, 2016)
This study is a part of a Danish project that broadly explores everyday life ageing with neuromuscular disease (NMD), in which participation has emerged as a central phenomenon
The findings highlight that participation is essential for experiencing meaning and sense of purpose when ageing with NMD
Summary
The term “everyday life” covers all human activities situated in and across a range of spaces and contexts such as home, work, educational institutions and recreational arenas (Schraube & Højholt, 2016). Persons living with neuromuscular disease (NMD) strive to live everyday life as others do and engage actively in everyday life (Boström & Ahlström, 2004). Life with NMD has been addressed as living with a chronic, deteriorating disease-causing disabilities (Boström & Ahlström, 2004). The second is the phenomenon called “accelerated ageing” (Boström & Ahlström, 2004; Moll & Cott, 2013) Both circumstances occur when the functional symptoms of ageing are superimposed on existing disabilities. From an early point in midlife, the progression of NMD and ageing per se may cause accelerating weakness resulting in a complex situation with simultaneous need for age-and disease-related care and rehabilitation (Martinsen & Dreyer, 2016; Rush et al, 2013). A central issue in ageing with NMD is fear of an unnecessarily passive life (Martinsen & Dreyer, 2016)
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