Thesis

The psychosocial needs of adults with muscular dystrophy

This study profiles the adult with muscular dystrophy and determines what psychosocial needs are important to him in the management of this physically disabling condition. Ample research exists to support the fact that physical disabilities are accompanied by personal and social problems, prejudices and stigma. Through the use of personal interviews and mailed questionnaires, 64 adults (males and females ranging in age from 18 to 70 years) with muscular dystrophy or other neuromuscular diseases were sampled in the Los Angeles area. In a three-part measure, designed by the investigator, subjects provided extensive demographic data; responded in agreement/disagreement with 18 positive and negative statements involving certain aspects of living with a physical disability, and evaluated the importance and usefulness of 25 services which could be a part of an adult program. The question is raised as to whether large volunteer agencies, such as the Muscular Dystrophy Association of America, should be responsible for the research and provision of psychosocial services to its adult population. An essentially medical problem has been compounded by social, personal and vocational handicaps, and effective medical treatment is limited. It is suggested that each such agency reexamine and reevaluate, if necessary, the original tenets upon which it was formed, and consider the social responsibility of eliminating the effects of stigma and prejudice from the disabled person’s life.

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