Prosjektets bakgrunn
The course of disease is variable according to the individual subtype. Currently there are no cure for NMD and the duration and deterioration of the disease is chronic. However, due to advances in prediction and treatment of the NMD- related disabilities, life expectancy has increased for some subtypes, resulting in life continuing long in to adulthood and even old age. Notions of a passive limited old age with decreased mobility and need of more assistive devices and cross sectional care has been pointed out as a possible scenario.
Om prosjektet
The project is a qualitative study exploring everyday life as ageing with NMD and the need for care and support in the transition to old age. Through individual in depth interviews with people ageing with NMD and focus group interviews with various health professionals, the pathway to everyday life ageing with NMD is explored. To understand and explain the phenomenon of ageing with NMD a phenomenological hermeneutic approach is used and the data analysis is inspired by the French Philosopher Paul Ricoeur.
Prosjektets mål
- To explore the lived experiences of people ageing with NMD.
- To explore how persons ageing with NMD experience participation in everyday life.
- To identify cornerstones in a future pathway model that supports coherent transition to old age with NMD.
Prosjektets tittel
Transition to unexpected old age – a qualitative study of ageing with Neuromuscular Disease