Sunday, 15 January 2006 - 8:45 AM

Improving Quality of Life for Children with Disabilities in Rehabilitation: How Social Workers Can Bridge the Rehabilitation Gap

Reiko Hayashi, PhD, University of Utah and Caren J. Frost, PhD, University of Utah.

Children with disabilities often receive hospital therapies to improve their physical functioning. The widely used treatment model provides weekly therapy via one or more of three disciplines: physical, occupational, and speech (AOTA, 1999; Hansen, 2002). These approaches focus on impairment and are provided continuously whether they are successfully enhancing the quality of life of the children or not. Furthermore, little attention is paid to those aspects of functioning that children and their guardians perceive as most relevant to their daily lives (Andrade, Gooch, & Leiter, 2004). Renwick and Brown (1996) discuss that “quality of life” is determined by the extent of enjoyment one can draw from and the meaning one attaches to three dimensions of life: Being, Belonging, and Becoming. Those three dimensions are not equally important for every individual and the relative importance of each may change during a person's lifetime. Therapy should exist as a means to improve a client's quality of life, not as an end in itself. This study was conducted at the Rehabilitation Unit of a children's hospital in a Western state. Both quantitative and qualitative methods were employed to (1) examine the perspectives of the children and their guardians on important issues in their lives; and (2) develop instruments that measure guardians' satisfaction with their children's performance and consider if service delivery has improved from the perspective of children, guardians, and providers. First, the Canadian Occupational Performance Measure (COPM) was implemented. Therapists collected the data from the guardians about the children (N=1,559) using the COPM. It includes questions about demographics, diagnoses, therapies received, and the guardians' perceptions of their children's performance problems. The data were entered into an MS Access database, and then analyzed using SPSS. Second, we conducted three focus groups: one for the guardians of children with disabilities (N=10); one for the children themselves (N=5); and one for third-party payers of medical insurance (N=9). The discussions were audio-recorded, transcribed, and entered into Atlas.ti, a qualitative analysis software. From the COPM data, more than 65% of the parents identified “socialization” as an important area where their children faced difficulties. Performance problems in “personal care” such as dressing, bathing, and feeding were identified by 47% of participants. In addition, two overarching themes emerged from the focus group discussions. One was the issue of socialization for the children. The other was the necessity of a support system for the guardians. Based on these findings, we developed instruments to measure children's performance from the perspectives of guardians and pilot-tested them on approximately 200 clients. We will present study findings and discuss the importance of a multi-disciplinary approach in the health care system for improving the quality of life of clients. Medical interventions and physical therapies tend to focus on impairment; however, a more effective approach would be to develop a system connecting the treatments with the children's socialization needs as well as the needs of guardians. We will argue that social workers could provide the bridge in this health care and rehabilitation system.

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