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.
| Original language | English |
|---|---|
| Journal | Nursing Open |
| Volume | 9 |
| Issue number | 6 |
| Pages (from-to) | 2675-2682 |
| Number of pages | 8 |
| DOIs | |
| Publication status | Published - Nov 2022 |
| Externally published | Yes |
Keywords
- Ageing
- Hermeneutics
- Narratives
- Neuromuscular disease
- Participation
- Qualitative Research
- Transitional Care