The Meaning of Work in the Lives of People with Significant Disabilities: Consumer and Family Perspectives

Since the passage of the Americans with Disabilities Act and the Rehabilitation Amendments of 1992, there has been increased public attention to the employment of people with disabilities. Most research on the employment outcomes of people with disabilities has focused on quantitative variables such as dollars earned, hours worked, length of time employed, and/or nature of the job (Bolton, 1981; DeStefano, 1991; Moseley, 1988). Emphasis has shifted recently to the integration of people with disabilities into the culture and support systems of the workplace (Butterworth, 1992; Chadsey-Rusch, 1992; Hagner & Dileo, 1993), as measured by qualitative employment outcomes such as job satisfaction, quality of life, social inclusion, and informal supports in the workplace (Goode, 1989; Inge, Banks, Wehman, Hill, & Shafer, 1988; Moseley, 1988; Schalock, Keith, Hoffman, & Karan, 1989). People with disabilities are essential sources of information about these qualitative aspects of employment, including the meaning of work in their lives. One of the basic elements of "participatory action research," a concept promoted by the National Institute on Disability and Rehabilitation Research, is participation by the persons most affected by the phenomenon under study (Bruyere, 1993; Walker, 1993). Yet there is a scarcity of research in the vocational rehabilitation field based upon the perspectives of people with disabilities. Perspectives of family members are also important to obtain, since they often play a critical role in supporting relatives with disabilities in the community. Although there has been some research on the importance of families and friends in the informal support networks of people with disabilities (Knox & Parmenter, 1993; Kutner, 1987; Mitchell, 1982; Nisbet, 1992; Wesolowski, 1987), and on the influence of families on rehabilitation outcomes in general (Cook & Ferritor, 1985; Kelley & Lambert, 1992; Lindenberg, 1980; Moore, 1984), little is known about the specific roles families may play in the employment experiences and outcomes of relatives with disabilities (Hill, Seyfarth, Banks, Wehman, & Orelove, 1987; Turnbull & Turnbull, 1988). This article reports the findings of a qualitative research study which obtained the perspectives of people with significant disabilities and their family members about their overall employment experiences, outcomes, and expectations. The focus group method, a means of collecting qualitative data through group discussions, was selected for this exploratory research because of its demonstrated utility in obtaining consumer opinions and preferences (Krueger, 1988; Stewart & Shamdasani, 1990) and its value as a tool in participatory action research in the rehabilitation field (Walker, 1993). Methods Four focus groups were convened in 1994 as a component of research activities for the Center on Promoting Employment, a Rehabilitation Research and Training Center at Children's Hospital in Boston, Massachusetts. The purpose of the focus groups was to identify key issues regarding the meaning of work for individuals with significant disabilities and their families. Based upon these participant-identified issues, an additional goal was to generate research questions for future Rehabilitation Research and Training Center activities. Two of the focus groups consisted of people with significant disabilities and two groups consisted of parents or spouses of people with disabilities. One consumer and one family focus group were held in Boston at Children's Hospital and at Boston University Center on Work and Family and another set of family and consumer sessions were held in Hartford, Connecticut at the state rehabilitation agency. Each focus group met one time for approximately two hours. Participants were paid a stipend of $25. Focus group participants discussed the following set of questions, developed by the researchers based upon a review of literature about job placement and rehabilitation outcomes: 1. …