Autonomy vs. Agency: Participation In Life Activities For Individuals With Spinal Cord Injury
Autonomy, a person's capacity to judge, decide, and act on the basis of their own attitudes and reasoning, is a key concept in the treatment of people with spinal cord injury. Autonomy is generally held to be a fundamental patient right. However, little study has been done about patients' own individual ideas or experience of autonomy.
When patient perception is taken into account, the picture of what autonomy means in a rehabilitative or household setting becomes more complex. Patients typically have three categories of activities: 1) tasks they would like to delegate, over which they do not wish to retain control; 2) tasks they would like to delegate, but remain in charge of; and 3) tasks they would like to perform themselves.
How tasks get sorted into these categories is a complicated interaction between the patient, his or her environment, and the nature of the disability. There may be social, emotional, or other costs and benefits associated with all of these. For example, a patient may wish to attend a community event. However, to do so would require him to ask for a ride, which he feels encroaches on his independence and may place stress on his caregivers. In addition, sitting in one position for a long time at the event may carry a risk of exacerbating his pressure ulcers.
Rehabilitation professionals can help patients learn to negotiate these processes, and empower their sense of agency.
Van de Velde, D, Bracke, P, Van Hove, G, et al. The illusion and the paradox of being autonomous, experiences from persons with spinal cord injury in the period of their transition from hospital to home. Disability & Rehabilitation. (2001).