A family quality of life study of families with children with disabilities in Hawaiʻi

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2011-05
Authors
Ranges, Phaedra Elisabeth
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[Honolulu] : [University of Hawaii at Manoa], [May 2011]
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Abstract
Research indicates that families of children with disabilities are at risk for a lower quality of life than families of typically developing children, as the impact that a child with a disability has on a family's quality of life (FQOL) is both substantial and complex (Zuna, Selig, Summers, & Turnbull, 2009b; Zuna, Summers, Turnbull, Hu & Xu, 2009c). Attempts to identify approaches that may improve the quality of life of families of children with disabilities has often been neglected, therefore the need remains to examine those supports and services for families with children with disabilities necessary to prevent a lower quality of life (FQOL) for these families and their children (Zuna, Turnbull & Summers, 2009a). Studies conducted in Hawaiʻi call for the active engagement of culturally diverse populations in the identification of educational problems as well as in the search for solutions in order to be successful (Onikama, Hammond & Koki, 1998; Sileo, Sileo & Prater, 1996). In Hawaiʻi where family, or 'ohana' is a fundamental aspect of society, to both respect and support this frame of reference, it is imperative we gain more information from indigenous families themselves if our goal is to increase family quality of life (FQOL) for families in Hawaiʻi with children with disabilities. For more than 20 years the University of Kansas Beach Center on Disability researchers have diligently endeavored to identify and explain reasons why FQOL varies so significantly among families of children with disabilities. Primarily through the administration of their Family Quality of Life (FQOL) scale--a measure specifically designed for families with children with disabilities--Beach researchers have tried to gain a greater understanding of the variables that are susceptible to change and the role of fixed characteristics or demographics in predicting FQOL (Zuna et al., 2009c). Beach Center researchers have been increasingly concerned that in spite of extensive efforts to have a random or representative sample of families in research projects, almost invariably research samples have been drawn from White majority cultures (Markey, et al., 1998; Zuna, et al., 2009c). It is the intent of my dissertation to broaden the research base of the Beach Center on Disability at the University of Kansas in the area of FQOL through the inclusion of samples of culturally diverse families with children with disabilities within and across the state of Hawaiʻi. The most important finding from this study was that FQOL and amount of services and supports needed and received by families did vary among groups by ethnicity. Families identifying themselves as Asian/Pacific Islander and Hawaiian indicated a greater level of satisfaction on FQOL than the Caucasian respondents, and also indicated a lower overall need for child and family oriented services.
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Ph.D. University of Hawaii at Manoa 2011.
Includes bibliographical references.
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disabilities
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Theses for the degree of Doctor of Philosophy (University of Hawaii at Manoa). Education.
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