Consumer‐directed personal assistance and ‘care’: perspectives of workers and ventilator users

Abstract

‘Consumer‐directed personal assistance’ has been a central tenet of the North American Independent Living Movement since its inception. There is, however, surprisingly little research that explores how consumer‐directed assistance gets played out in practice. We conducted a qualitative study that explored the relationships between disabled ventilator users and their personal support workers (PSWs) in supportive housing environments in Ontario, Canada. The results show that while all participants agreed that they adhered to the philosophies of ‘independent living’ embedded in ‘consumer‐directed personal assistance’, how this was understood and enacted varied considerably. Narrow interpretations focused on the task‐oriented aspects of PSWs’ work, while broader interpretations included interpersonal aspects of care, respect and mutuality. We discuss how a conceptualization of consumer‐directed personal assistance can be elaborated to accommodate a notion of ‘care’ while retaining the core tenets of the independent living philosophy.

Keywords:

• consumer‐directed personal assistance
• care
• disability
• personal support workers
• ventilator users

Acknowledgments

The authors would like to thank Catherine Frazee, who consulted on the study, and the study participants, who gave generously of their time and wisdom. This study was supported by the Ontario Respiratory Care Society, The Lung Association. Dr Gibson held a Sick Kids Foundation, Children and Youth Home Care Network Post Doctoral Award. Dr Brooks held a CIHR New Investigator Award and currently holds a Canada Research Chair.