Academic journal article American Annals of the Deaf

How Do Deaf Adults Define Quality of Life?

Academic journal article American Annals of the Deaf

How Do Deaf Adults Define Quality of Life?

Article excerpt

Quality of life (QOL) generally refers to the degree of well-being of an individual (Ferrans, 1990; Tambs, 2004; Werngren-Elgstrom, Dehlin, & Iwarsson, 2003), and is often used to assess program effectiveness (Grasso & Canova, 2008; Nakaji, 2008). Well-being refers to one's development into a fulfilled person who makes a contribution to the community (Marks & Shah, 2014). QOL research helps improve individual wellbeing as well as bring about change at a societal level (Schalock & Alonso, 2002). QOL measures have been used to enhance an individual's well-being, consistent with his or her cultural and ethnic heritage; to facilitate collaboration for change at the personal, program, community, and national levels; and to enhance the degree of personal control and individual opportunity exerted by the individual; they also play a prominent role in the gathering of evidence (Schalock & Alonso, 2002). In sum, QOL measures provide feedback that allows stakeholders within systems to make adjustments and changes to improve QOL outcomes.

Many QOL researchers focus on outcomes, such as the transition from high school to postsecondary education or adulthood for individuals with disabilities (Raphael, Brown, & Renwick, 1996). This focus on special education outcomes may be due to the recent national trend toward higher expectations and an emphasis on student achievement (H. Turnbull, A. Turnbull, Wehmeyer, & Park, 2003). Raphael et al. (1996) drew on the experience of adults with developmental disabilities in group homes to explore their definition of QOL. In general, QOL research occurs in the areas of medicine and public health (Hawthorne et al., 2004; Mulrow et al., 1990; Raphael, Brown, & Renwick, 1999), education and special education (Kober & Eggleton, 2002; Raphael et al., 1999; van Puyenbroeck & Maes, 2008), spirituality (Sawatzky, Ratner, & Chiu, 2005), sociology (Bowling et al., 2003), and psychology and mental health (Fellinger, Holzinger, Gerich, & Goldberg, 2007; Flanagan, 1978; Frisch, Cornell, Villanueva, & Retzlaff, 1992).

The concept of QOL helps researchers and others think about individuals and groups who may have been marginalized by society, including African Americans, women, lesbians, gay men, the elderly, and persons with disabilities. These groups are constantly fighting for fundamental rights such as equal pay and proper health care. Deaf people are another group at the margins of society People seem to underestimate deaf people and to regard them as disabled (Lane, Hoffmeister, & Bahan, 1996), and thus unable to participate in the community in the same ways as hearing, nondisabled people. Lane et al. (1996) refer to this attitude as the "hearing agenda" (p. 336). In response to the plight of marginalized groups, researchers have been studying measures of their QOL in order to shed light on the issues and interventions that will have positive effects on their lives.

Whereas much attention has been focused on QOL research for marginalized groups and individuals, QOL research is lacking for the deaf community. Most of the research in the area of deafness has addressed QOL and outcomes for cochlear implant recipients in areas such as language growth, health, and self-esteem, as well as QOL assessments of children who receive implants and their parents (Loy, Warner-Caya, Tong, Tobey, & Roland, 2010; Preisler, Tvingstedt, & Ahlstrom, 2005; Sparreboom, Snik, & Mylanus, 2012). However, cochlear implant recipients are only a fraction of the deaf community. Two studies with deaf and hard of hearing adults were conducted using interviews as a part of their methodology (Mulrow et al., 1990; Werngren-Elgstrom et al., 2003). In both studies, participants completed health-related QOL instruments. Mulrow et al. (1990) concluded that hearing loss is associated with important adverse effects on the QOL of elderly persons, and that the effects are reversible with hearing aids. …

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