Chronic ventilation and social participation: experiences of men with neuromuscular disorders

Abstract

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 focus-group 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.

Key words::

• autonomy
• chronic mechanical ventilation
• focus groups
• invasive ventilation
• self-determination
• thematic analysis

Acknowledgements

The authors would like to thank the participants for giving their time and talking openly about their lives. This study was funded by Rotterdam University, Expertise Centre Innovations in Care and the authors also offer thanks to their colleagues, especially Susan Jedeloo, Sander Hilberink, and Adriaan Visser, for their valuable comments on earlier drafts of this paper. The contribution and supervision of Linda Lovelock, at that time involved in the European Master of Science in Occupational Therapy is gratefully acknowledged. Thanks also go out to Albert Scherpbier for being the moderator of the focus groups and for his contribution to the research.

Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.