Qualitative Interviews

Background and Purpose

The concept of support systems has become increasingly important since providing appropriate supports can make a huge difference in the lives of people with disabilities. Without supports, an individual may be more dependent and less able to pursue life goals. Supports are also an area where individuals have the most control. In contrast, individuals generally have little control over the medical or genetic aspects of disability. When adequate supports are in place, the experience of disability is mediated.

Support systems consist of three components: personal assistance services (PAS), assistive technology, and adaptive strategies (Litvak & Enders, 2001). All three are necessary and important and no single component can provide an individual with adequate support alone. In any given situation or environment, an individual may rely more heavily on one type of support than another.

Unfortunately, not all components of a support system are readily available for all who need support. For those with severe disabilities, maintaining health and safety in performance may not be effective without use of adequate personal assistance with daily living. Nosek (1993) points out, however, that reliance on family alone for assistance is often considered inadequate due to challenges with burnout of family members, role conflicts and economic strains. A great deal of personal assistance is unpaid and this appears to place added strain on families. Caregiver strain has been a source of concern. This study will identify the high support needs events for people with mental retardation, traumatic brain injury and multiple sclerosis in employment and community settings.

The specific aims of this study are to understand the lived experience of mental retardation (MR), traumatic brain injury (TBI) and multiple sclerosis (MS) from the perspective of the individual and the caregivers. We will put particular emphasis on the daily support demands of the disability on the individual. We are using qualitative phenomenological methods consisting of a series of in-depth interviews over a 1-2 year period.

Status

We have completed the first round of interviews and are engaged in initial analysis. Tentative results can be found here.

In their own words: A qualitative investigation of barriers to independence and use of technology by consumers with disabilities and their caregivers
Pat Brown, Ed.D. and Mark Harniss, Ph.D., Department of Rehabilitation Medicine

A second round of interviews is being planned to follow up on these early findings.