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Becoming an adult with neuromuscular disease: Experiences of individuals affected by neuromuscular disease and their families

At a glance

  • Co-project leader : Prof. Dr. Romy Mahrer Imhof, Dr. Veronika Waldboth
  • Project team : Prof. Dr. Alison Metcalfe, Dr. Christine Patch
  • Project status : completed
  • Funding partner : Third party
  • Project partner : Stiftung Pflegewissenschaft Schweiz, Florence Nightingale Faculty of Nursing and Midwifery, King's College London
  • Contact person : Veronika Waldboth



This study explored experiences of young persons affected by neuromuscular disease and their families during transition into adulthood. Becoming an adult is considered to be a normal developmental stage within the human life cycle. However, a chronic childhood condition can disrupt that transition and may have a negative impact on the young persons' and their families' lives. Therefore, this study aimed to understand experiences of families suffering from neuromuscular disease during transition of the affected young person into adulthood and to identify major challenges and strategies by which individuals and families successfully adapt to new situations.


The study design was a constructivist approach to Grounded Theory. Data were collected from single interviews with young people affected by neuromuscular disease and their families. Data collection took place in Switzerland. Interviews were recorded and transcribed verbally. Collected data were analysed using coding, memo writing and theoretical sampling aiming at data based theory development.


The analysis of 31 interviews from 12 families resulted in an interpretive theory constituted by four categories describing the transition experience of families as a life in a field of tension between development and degeneration. During the transition into adulthood affected youngpeople were becoming adults, while at the same time their health situation deteriorated. Families experienced challenges meeting these demands. They tried to take over more caring activities while at the same time put efforts in supporting the young persons independence.The families’ resources and strategies of coping and adaptation and the ways they related and communicated with each other, shaped their transition experience.

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