Samenvatting

Objective: The purpose of this study was to investigate how mechanical ventilation-dependent adults with neuromuscular
disorders experience their occupational and social participation. Methods: Data were collected through two successive focusgroup
discussions with six men (aged 23–40 years) living in the same specialized nursing home in the Netherlands. Results: The
results showed that the participants wanted to be involved in activities that provide interaction with others in society or
community; they desired social participation. Thematic analysis brought out that the participants wanted to be taken seriously
in all aspects of life. Four themes emerged: “Responsibility for risk-taking”, “The influence of dependency”, “Being treated as
an employee”, and “Maintaining optimism”. These men appreciated good information from health care providers, wanted to
have more autonomy in decision-making and risk-taking – and did not wish to be patronized. They wanted to have a social
network to help them suction their tracheal cannula. Also, they would like activities at the activity centre to be more
contributing to society and wished to be treated as employees rather than as clients. In view of their short life expectancy, they
would also welcome discussions of end-of-life issues in group sessions led by a professional. Facilitating aspects of social
participation, i.e. the experience of meaningful occupations in connection with autonomy and self-determination, would
provide a more client-centred approach.