بررسی کیفیت زندگی در پژوهش نتایج درمان لکنت زبان

Stuttering can affect many aspects of a person's life. People who stutter report that they experience negative reactions to stuttering, difficulty communicating in key situations, diminished satisfaction with life, and a reduced ability to achieve their goals in life. Unfortunately, most treatment outcomes studies have focused on changes in the observable characteristics of stuttering, with significantly fewer studies examining the broader consequences of stuttering. This paper proposes that evaluation of stuttering treatment outcomes can be enhanced through assessment of impact of stuttering on a speaker's quality of life. A means of assessing quality of life is described, based on the Overall Assessment of the Speaker's Experience of Stuttering (OASES; Yaruss and Quesal, 2006 and Yaruss and Quesal, 2008). The OASES is a multi-dimensional assessment instrument built upon the World Health Organization's International Classification of Functioning, Disability, and Health (ICF; WHO, 2001; see also Yaruss & Quesal, 2004). One section of the OASES is designed to assess specific aspects of quality of life in individuals who stutter. Preliminary data from two ongoing studies involving the OASES are briefly summarized in order to demonstrate: (a) that individuals who stutter do report an adverse impact on their quality of life as a result of stuttering and (b) that quality of life can improve following treatment for stuttering. It is recommended that future stuttering treatment outcomes studies directly examine the broader consequence of stuttering by focusing, in part, on quality of life. Educational objectives: After reading this article, the participant will be able to: (1) describe some of the adverse consequences of stuttering reported by individuals who stutter; (2) define quality of life as it relates to the study of the stuttering disorder; (3) explain the value of assessing quality of life in stuttering treatment outcomes research.

Stuttering is a communication disorder that can affect many aspects of a person's life. To an observer, the most obvious aspect of the disorder is the production of certain types of disruptions in the forward flow of speech, such as repetitions of parts of words, prolongations, and blocks (see Bloodstein & Bernstein Ratner, 2008). To the speaker, however, stuttering can involve far more than just observable speech disfluencies (Cooper, 1993, Manning, 1999, Manning, 2010, Mulcahy et al., 2008, Murphy, 1999, Shapiro, 1999, Sheehan, 1970, Starkweather and Givens-Ackerman, 1997 and Van Riper, 1982). Personal reports, biographical accounts, and empirical research all confirm that people who stutter may experience feelings of shame, embarrassment, and anxiety; difficulty communicating; and a sense of dissatisfaction with life due to stuttering (e.g., Ahlbach and Benson, 1994, Bobrick, 1995, Carlisle, 1985, Corcoran and Stewart, 1998 and Craig et al., 2009Hood, 1998, Jezer, 2003, Johnson, 1930 and Klompas and Ross, 2004Manning, 1999, Manning, 2010, Shapiro, 1999, St.Louis, 2001, Yaruss and Quesal, 2006 and Yaruss et al., 2002). This distinction between surface behaviors seen by an observer and life experiences of those who live with the disorder is reflected, in part, in the many definitions and theories about stuttering that have been offered over the years (e.g., Bloodstein, 1993). Some definitions and theories have focused on trying to explain the surface speech disruptions, while others have also addressed the consequences of stuttering and the speakers’ experiences (Bloodstein & Bernstein Ratner, 2008). The nature of the definitions offered by different authorities are no doubt linked to the theoretical orientations to the disorder. Still, the sheer number of definitions highlights the various and varied experiences that are associated with the difficulty in producing fluent speech. The varied nature of stuttering is also reflected in the wide range of available treatment approaches. Many treatments focus primarily on reducing or eliminating stuttering behaviors (e.g., Ingham, 1984, Neilson and Andrews, 1993, Onslow et al., 1996, Ryan, 1979 and Webster, 1980). Other approaches seek to reduce the negative consequences of the disorder in addition to reducing observable speech disruptions (e.g., Breitenfeldt and Lorenz, 2000, Manning, 2010, Shapiro, 1999 and Van Riper, 1973). The wide range of options, and the varied success of these approaches with different individuals ( Bloodstein & Bernstein Ratner, 2008), speaks to the complexity of the disorder—and to the importance of considering each speaker's unique experiences with stuttering and with life in general. 1.1. The evaluation of stuttering in treatment outcomes research Examination of the stuttering treatment outcomes literature reveals that most studies to date have focused primarily or exclusively on changes in the observable characteristics of stuttering, with relatively little consideration given to the broader consequences of the disorder experienced by the speaker (see Andrews et al., 1980, Bothe et al., 2006, Cordes, 1998, Prins and Ingham, 2009 and Thomas and Howell, 2001). This emphasis on reduced disfluency is understandable, for the observable speech disruption is a central feature of the disorder, and people who seek therapy certainly want to reduce the amount of stuttering they exhibit. Surface stuttering behavior is also the most salient aspect of the disorder for listeners, and, as such, it is the easiest aspect to measure (though the reliability of stuttering frequency counts has long been questioned; Cordes, 1994 and Cordes and Ingham, 1994). Still, when people who stutter are asked about the nature of their “complaint” (Baer, 1988 and Baer, 1990), the negative consequences of stuttering are also cited as key features of their daily experience (Yaruss et al., 2002). Thus, treatment research should also examine these aspects of the disorder. The lack of focus on the consequences of stuttering in treatment outcomes research is not due to a lack of measurement tools, for there are many instruments that evaluate the broader experience of stuttering (e.g., Ammons and Johnson, 1944, Andrews and Cutler, 1974, Brutten and Shoemaker, 1974, Crowe et al., 2000 and Erickson, 1969, Lanyon, 1967, Ornstein and Manning, 1985 and Riley et al., 2004Watson, 1988, Woolf, 1967, Wright and Ayre, 2000 and Yaruss and Quesal, 2006). For example, the original “S-Scale” (Erickson, 1969) and the S-24 adaptation (Andrews & Cutler, 1974), as well as Watson's (1988) Inventory of Communication Attitudes (ICA), measure a speaker's reactions to stuttering in different situations. Instruments have also examined other aspects of the speaker's experience of stuttering, confirming the broad variety of experiences and challenges reported by people who stutter. In spite of the long-standing availability of such tools, however, these types of instruments have not been widely used in treatment research. Certainly, there are exceptions, as some studies have included measures of how affective and cognitive reactions to stuttering may change during the course of treatment (e.g., Blomgren et al., 2005, Boberg and Kully, 1994 and Montgomery, 2006). Even so, the primary focus of those studies was still an examination of the measurable changes in observable speech fluency. Even those studies that did consider the speakers’ reactions to stuttering did not directly examine the functional difficulties the speakers may have had when communicating in daily situations or the overall consequences of stuttering for their lives as a whole. Furthermore, as Ulliana and Ingham (1984) pointed out, results from some scales that examine a speaker's attitudes toward stuttering in different situations may simply reflect the speaker's degree of fluency in those situations. Thus, even taking these exceptions in account, it seems clear that the study of stuttering treatment outcomes has focused primarily on measuring changes in the observable characteristics of stuttering. Another explanation for the lack of emphasis on the broader experience of stuttering in treatment outcomes research may be the assumption that, as stuttering behaviors diminish, the consequences of those behaviors also diminish. This is true, to some extent. Nevertheless, just as the occasional blemish may continue to be embarrassing to a person who has largely overcome a history of acne, even occasional stuttering may be the source of negative reactions for a person who has largely overcome a history of more severe stuttering. The negative consequences of stuttering can linger, long after the observable features have diminished (Ahlbach and Benson, 1994, Hood, 1998, Manning, 1999, Manning, 2010, Shapiro, 1999 and St.Louis, 2001). In sum, much of the existing stuttering treatment literature is relatively limited in scope, even though the speaker's experience of stuttering involves more than the surface behaviors that have been the focus of most studies. As such, the field faces a significant challenge: if clinicians and researchers wish to know whether a treatment yields an improvement in a speaker's life experience (and not just in speech fluency), then direct assessment of that life experience is needed. The purpose of this paper is to explore one aspect of the broader assessment of stuttering, specifically, changes that may occur in a speaker's overall quality of life.

Stuttering can affect far more than just a person's ability to produce words with appropriate rate, rhythm, and smoothness. Because of the broad impact the disorder can have on a person's life, the evaluation of treatment outcomes should include more than just an assessment of changes in fluency. While a wide variety of experiences and characteristics of stuttering can (and should) be examined, quality of life is a particularly important construct to consider, for it is a multi-dimensional construct that encompasses many aspects of a speaker's life that may be affected by stuttering. Preliminary results from research examining quality of life in people who stutter help to document the consequences of the disorder and confirm that the assessment of quality of life can form a meaningful component of the stuttering treatment outcomes research.