Louise Abildgaard Møller1, Bente Martinsen2, Ulla Werlauff3, Pia Dreyer4,5. 1. Department of Neurology, Aarhus University Hospital, Aarhus N, Denmark. 2. Department of Public Health, Section of Nursing, Faculty of Health, Aarhus University, Copenhagen NV, Denmark. 3. The Danish National Rehabilitation Center for Neuromuscular Diseases, Aarhus, Denmark. 4. Section of Nursing, Institute of Public Health, Aarhus University Hospital, Aarhus University, Aarhus, Denmark. 5. Department of Intensive Care, University of Bergen, Bergen, Denmark.
Abstract
PURPOSE: To explore the lived experiences of people ageing with neuromuscular disease (NMD). INTRODUCTION: NMD refers to several chronic types of hereditary and progressive NMDs. Owing to advances in rehabilitation and treatment, life expectancy has increased for some subtypes, resulting in life continuing into adulthood and even old age; however, knowledge of people's lived experiences with NMD is sparse. METHODS: A qualitative study using a phenomenological-hermeneutic approach inspired by Ricoeur was conducted. Fifteen persons with NMD were interviewed in 2018. The Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist was used. RESULTS: Four themes were identified: "A time-framed paradox of striving for independent dependency arises as age increases", "Ageing means entering no man's land", "Exercising is caught between shrinking surplus of physical energy and demands of everyday life" and "Ending work life is a jumble of relief, concern and altered self-perception". CONCLUSION: The pathway to old age with NMD encompasses several transitions, all potentially including the risk of getting lost. Physical changes, changes in legislation, experiences of uncertainty regarding where one socially belongs and how to balance reduced physical strength in everyday life are indicated as key areas that affect ageing life with NMD.Implications for rehabilitationRehabilitation professionals should address ageing with NMD from a life course perspective and not with a singled minded focus on chronological age.A biopsychosocial focus is needed to prevent gaps and pave the pathway to old age with NMD.The experiences of multiple transitions when ageing with NMD should be in focus.
PURPOSE: To explore the lived experiences of people ageing with neuromuscular disease (NMD). INTRODUCTION: NMD refers to several chronic types of hereditary and progressive NMDs. Owing to advances in rehabilitation and treatment, life expectancy has increased for some subtypes, resulting in life continuing into adulthood and even old age; however, knowledge of people's lived experiences with NMD is sparse. METHODS: A qualitative study using a phenomenological-hermeneutic approach inspired by Ricoeur was conducted. Fifteen persons with NMD were interviewed in 2018. The Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist was used. RESULTS: Four themes were identified: "A time-framed paradox of striving for independent dependency arises as age increases", "Ageing means entering no man's land", "Exercising is caught between shrinking surplus of physical energy and demands of everyday life" and "Ending work life is a jumble of relief, concern and altered self-perception". CONCLUSION: The pathway to old age with NMD encompasses several transitions, all potentially including the risk of getting lost. Physical changes, changes in legislation, experiences of uncertainty regarding where one socially belongs and how to balance reduced physical strength in everyday life are indicated as key areas that affect ageing life with NMD.Implications for rehabilitationRehabilitation professionals should address ageing with NMD from a life course perspective and not with a singled minded focus on chronological age.A biopsychosocial focus is needed to prevent gaps and pave the pathway to old age with NMD.The experiences of multiple transitions when ageing with NMD should be in focus.
Entities:
Keywords:
Empirical research; healthy aging; hermeneutics; personal narratives as topic; qualitative research; transitional care