Psychological characteristics and perceptions of stuttering of adults who stutter with and without support group experience

Journal of Fluency Disorders 38 (2013) 368–381

Contents lists available at ScienceDirect

Journal of Fluency Disorders

Psychological characteristics and perceptions of stuttering of adults who stutter with and without support group experience Michael P. Boyle ∗,1 Department of Communication Sciences and Disorders, The Pennsylvania State University, University Park, PA, United States

a r t i c l e

i n f o

Article history: Received 24 August 2013 Received in revised form 14 September 2013 Accepted 16 September 2013 Available online 1 October 2013

Keywords: Stuttering Support groups Self-esteem Life satisfaction Stigma

a b s t r a c t Purpose: To compare adults who stutter with and without support group experience on measures of self-esteem, self-efficacy, life satisfaction, self-stigma, perceived stuttering severity, perceived origin and future course of stuttering, and importance of fluency. Method: Participants were 279 adults who stutter recruited from the National Stuttering Association and Board Recognized Specialists in Fluency Disorders. Participants completed a Web-based survey comprised of various measures of well-being including the Rosenberg Self-Esteem Scale, Generalized Self-Efficacy Scale, Satisfaction with Life Scale, a measure of perceived stuttering severity, the Self-Stigma of Stuttering Scale, and other stutteringrelated questions. Results: Participants with support group experience as a whole demonstrated lower internalized stigma, were more likely to believe that they would stutter for the rest of their lives, and less likely to perceive production of fluent speech as being highly or moderately important when talking to other people, compared to participants with no support group experience. Individuals who joined support groups to help others feel better about themselves reported higher self-esteem, self-efficacy, and life satisfaction, and lower internalized stigma and perceived stuttering severity, compared to participants with no support group experience. Participants who stutter as an overall group demonstrated similar levels of self-esteem, higher self-efficacy, and lower life satisfaction compared to averages from normative data for adults who do not stutter. Conclusions: Findings support the notion that self-help support groups limit internalization of negative attitudes about the self, and that focusing on helping others feel better in a support group context is linked to higher levels of psychological well-being. Educational objectives: At the end of this activity the reader will be able to: (a) describe the potential psychological benefits of stuttering self-help support groups for people who stutter, (b) contrast between important aspects of well-being including self-esteem self-efficacy, and life satisfaction, (c) summarize differences in self-esteem, self-efficacy, life satisfaction, self-stigma, perceived stuttering severity, and perceptions of stuttering between adults who stutter with and without support group experience, (d) summarize differences in self-esteem, self-efficacy, and life satisfaction between adults who stutter and normative data for adults who do not stutter. © 2013 Elsevier Inc. All rights reserved.

∗ Correspondence to: Department of Communication Sciences and Disorders, Oklahoma State University, 042 Murray Hall, Stillwater, OK 74078, United States. Tel.: +1 405 744 8946; fax: +1 405 744 8070. E-mail address: [email protected] 1 Now at: Department of Communication Sciences and Disorders, Oklahoma State University, Stillwater, OK, United States. 0094-730X/$ – see front matter © 2013 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.jfludis.2013.09.001

M.P. Boyle / Journal of Fluency Disorders 38 (2013) 368–381

369

1. Introduction Recent studies have reported troubling findings regarding the cognitive, affective, and social well-being of people who stutter (PWS). Studies have reported lower levels of quality of life in domains of vitality, social, and mental health functioning (Craig, Blumgart, & Tran, 2009). There is evidence of an elevated risk of trait and social anxiety, social phobia (Blumgart, Tran, & Craig, 2010; Craig, Hancock, Tran, & Craig, 2003; Iverach, Jones, O’Brian, et al., 2009; Iverach, O’Brian, Jones, et al., 2009), and negative affect (Tran, Blumgart, & Craig, 2011) among people who stutter compared to those who do not. However, recently other researchers have collected data disputing the extent to which PWS experience certain psychological problems, especially personality disorders (Manning & Beck, 2013). It is also commonly reported that PWS may experience shame and guilt and attempt to hide their stuttering through avoidance of specific sounds, words, and speaking situations (Ginsberg, 2000; Murphy, Yaruss, & Quesal, 2007). This avoidance may become so extreme that certain individuals may not even identify themselves as PWS to unfamiliar or familiar others (Murphy, Quesal, & Gulker, 2007). This concealment and avoidance can lead to severe restrictions on societal participation and overall well-being (Bricker-Katz, Lincoln, & McCabe, 2010; Klompass & Ross, 2004; Plexico, Manning, & Levitt, 2009a). In addition, empirical evidence has recently been obtained that demonstrates that romantic partners (Beilby, Byrnes, Meagher, & Yaruss, 2013), siblings (Beilby, Byrnes, & Young, 2012), and parents (Lau, Beilby, Byrnes, & Hennessey, 2012) of PWS can detect the challenges experienced by these individuals and experience negative emotional reactions to stuttering as well. There has been much debate about the importance of dealing with social, emotional, and cognitive aspects of stuttering directly in treatment and the value of these approaches for improving outcomes for PWS (Bothe, Davidow, Bramlett, & Ingham, 2006; Ingham, 2012; O’Brain, Packman, Onslow, & Menzies, 2012). However, many authors believe that it is beneficial to take a multidimensional approach when working clinically with PWS (Guitar, 2013; Healey, Scott Trautman, & Susca, 2004; Manning, 2004; Yaruss, 2010). This notion is supported by The American Speech-Language-Hearing Association (ASHA, 2007), stating that treating communication disorders involves not only addressing the structural impairment, but also quality of life through reducing participation restrictions, activity limitations, and barriers created by contextual factors. The implications of this are that professionals could benefit from being equipped with a wide range of tools in behavioral, cognitive, and affective domains to address quality of life and well-being in clients who stutter (Craig et al., 2009; Plexico et al., 2009a; Tran et al., 2011; Yaruss, Coleman, & Quesal, 2012). There is evidence of the potential importance of treating stuttering in a multidimensional framework. Many PWS believe that therapy should address feelings and attitudes about stuttering (Yaruss, Quesal, & Murphy, 2002) and that treatment focused only on speech change does not adequately address speech related fears during and following therapy (Yaruss, Quesal, Reeves, et al., 2002). Indeed for many PWS, fears and concerns about stuttering often persist after fluency treatment (Cream, Onslow, Packman, & Llewellyn, 2003; Plexico et al., 2009a). It has also been demonstrated that the presence of mental health problems such as anxiety are predictors of avoidance of speaking situations following treatment as well as failure to maintain benefits of speech restructuring after therapy (Iverach, Jones, O’Brian, et al., 2009), and that treatment including cognitive components improves global life functioning and entry into feared situations to a greater extent than treatments focusing purely on speech change (Menzies et al., 2008). There is increasing evidence that treatments with cognitive components can decrease negative attitudes about the self and improve psychosocial adjustment (Beilby, Byrnes, & Yaruss, 2012; de Veer, Brouwers, Evers, & Tomic, 2009). Recent research suggests that PWS with higher introversion may be particularly at risk for lower quality of life (Bleek et al., 2012). Some professionals recommend enhancing social support, activity, and engagement among PWS (Craig, Blumgart, & Tran, 2011). One potential means of achieving this is through involvement in support groups (Reeves, 2006; Yaruss, Quesal, & Reeves, 2007). 1.1. Support groups for stuttering A brief note on terminology is warranted before proceeding. Reeves (2006, 2007) stated that the term “self-help/mutual aid group” is preferable to “support group” when describing organizations like the National Stuttering Association (NSA) because of the former’s emphasis on autonomy and experiential knowledge whereas the latter refers to groups established and maintained by professionals with clinical knowledge. However, it is also true that many professionals in the field of speech-language pathology are involved in these groups without any aim of incorporating clinical aspects or speech modification. There is a trend of professional involvement in self-help groups across many fields including mental health, which has made the “purist” model of self-help groups (i.e., only lay members without professionals) no longer valid (Barlow, Burlingame, Nebeker, & Anderson, 1999, p. 54). In addition, previous research involving members of the NSA included the term “support group” rather than “self-help/mutual aid group” (Yaruss, Quesal, Reeves, et al., 2002), and the NSA often describes its function as a “support group” or “self-help support group” on its website (NSA, 2013). As a result of this lack of consensus on a meaningful distinction between self-help/mutual aid groups and support groups, the terms “self-help support group” and “support group” will be used interchangeably in this paper. A distinction must also be made between support groups and group therapy for stuttering. The latter focuses on speech change as a primary focus using clinical expertise of a professional, whereas the former focuses on sharing of experiences in a nonjudgmental environment, without the necessity of speech change (Reeves, 2006, 2007). It is the support, not therapy group, that is of interest in this paper.

370

M.P. Boyle / Journal of Fluency Disorders 38 (2013) 368–381

Self-help support groups exist for a multitude of different disorders and disabilities. Reports suggest that all conditions described by the World Health Organization (WHO) have established these groups (Banks, 2000 as cited in Yaruss et al., 2007). Meta-analysis has shown that individuals with a variety of physical illnesses, mental or emotional disorders, substance abuse problems, and grief and bereavement show higher improvement with participation in self-help support groups compared to control groups with no such participation (Barlow et al., 1999). These groups serve many different functions and vary with the needs of the individuals who choose to join them. In the case of stuttering, some PWS join to meet other PWS, share thoughts, feelings, and experiences, and to hear those of similar others in a nonjudgmental environment, as well as to do something proactive about their stuttering (Reeves, 2007; Trichon, 2007; Yaruss, Quesal, Reeves, et al., 2002). Some participants join to learn more about stuttering; and others become involved to set a positive example and instill a sense of hope in others who are struggling with feelings of helplessness (Reeves, 2007; Yaruss et al., 2007). These groups also educate members of the public about stuttering and advocate for the needs of PWS (Yaruss et al., 2007). These opportunities may not be available to some PWS in traditional therapy formats. Benefits reported by PWS regarding participation in support groups include increased opportunities for social interactions with other PWS, increased affiliation with a community of PWS, cognitive restructuring and changing beliefs about self-identity, increased self-disclosure of stuttering to other people, and improvements in self-acceptance, confidence, and self-image (Ramig, 1993; Trichon & Tetnowski, 2011; Yaruss, Quesal, Reeves, et al., 2002). In addition to changes in psychological and social realms, some participants have reported an improved ability to maintain speech benefits obtained from traditional therapy (Hunt, 1987), and others indicate how communication in general became easier following participation in conferences and meetings for PWS (Trichon & Tetnowski, 2011). Despite professional recommendations (e.g., Ramig, 1993; Yaruss et al., 2007) and participant accounts (Trichon & Tetnowski, 2011) regarding the potential or perceived benefits of support group involvement, very little data exist regarding comparisons between PWS with and without experience in self-help support groups for PWS. An article in the ASHA Leader by McClure and Yaruss (2003) reported findings from a survey on 544 adult members of the NSA who stuttered. Results of the survey indicated that members who had attended a national convention, regional workshop, or local chapter demonstrated less speaking avoidance, less embarrassment about stuttering, and less stuttering interference in work and social life compared to members who had not attended. Similar positive findings from a Web survey conducted by the NSA on 686 adult members of the organization who stutter were made available on the NSA website several years later (NSA, 2009). Results indicated that individuals who were actively involved in the NSA (e.g., attending support groups and conferences) in the past three years were more likely to talk openly about stuttering to other people, less likely to avoid speaking situations, and less likely to perceive stuttering as negatively impacting school or work, compared to individuals who were not actively involved during that time. However, in these reports, lack of detailed information regarding methodological factors and data analysis made it difficult to assess the results and their implications in depth. In the current study, it was of interest to compare PWS with and without self-help support groups on a variety of psychological variables related to adjustment to chronic stuttering including self-esteem, self-efficacy, life satisfaction, self-stigma, perceived stuttering severity, and other stuttering-related beliefs. These constructs are explained in the following section. 1.2. Variables of interest 1.2.1. Self-esteem Self-esteem relates to how people feel about themselves in a global sense. This includes generalized feelings of self-worth, self-regard, and self-acceptance (Rosenberg, 1965, 1979). It is a critical component of mental health and psychological wellbeing with implications for achievements, accomplishments, and social interactions (Battle, 1994). Previous studies indicate that PWS have self-esteem within normal limits or comparable to people who do not stutter (Blood & Blood, 2004; Blood, Blood, Tellis, & Gabel, 2003; Blood et al., 2011; Yovetich, Leschied, & Flicht, 2000). However, these studies were done with adolescents and school-age children and not adults. Several qualitative studies have found that reduced self-esteem can result from stuttering, however these studies are limited in their generalizability due to small sample sizes. 1.2.2. Self-efficacy Bandura (1986) defined self-efficacy as “people’s judgments of their abilities to organize and execute courses of action required to attain designated types of performance” (p. 391). Higher levels of self-efficacy are related to higher achievement (Bandura, 1982). Self-efficacy plays an important role in well-being in that it impacts behavior, life goals and aspirations, and perceptions of impediments and opportunities in social contexts (Bandura, 1997). It has been found that self-efficacy is a strong predictor of resilience, or the ability to maintain reasonable quality of life even in the face of life stresses, among PWS (Craig et al., 2011). Self-efficacy has also been found to predict success following treatment for stuttering (Langevin et al., 2006). In previous research it has been found that PWS exhibit lower self-efficacy for speaking than people who do not stutter (Bray et al., 2003; Ornstein & Manning, 1985). In this study, a more general form of self-efficacy was of interest rather than self-efficacy specifically focused on speaking. 1.2.3. Life satisfaction Life satisfaction is the cognitive component of subjective well-being that measures how well people’s current life situation matches their own desired standards for how they would like their lives to be (Pavot & Diener, 1993). It is a measure that

M.P. Boyle / Journal of Fluency Disorders 38 (2013) 368–381

371

allows for assessment of aspects of life that are important to the individual due to its general nature. It has been noted that measures of quality of life assessing subjective well-being are less frequently found in the stuttering literature compared to more medical and health-related quality of life measures (Cummins, 2010). For example, many scales measuring quality of life include some items that may not be as relevant for PWS (e.g., mobility or medication concerns). Life satisfaction has been measured as part of a larger construct of quality of life in previous research and results indicate that adults who stutter experience lower quality of life in domains of vitality and social and mental health functioning compared with adults who do not stutter (Craig et al., 2009). 1.2.4. Self-stigma Self-stigma is the internalizing of negative societal attitudes (Boyle, 2013). It consists of stigma awareness, stereotype agreement, and stigma self-concurrence. There is evidence that many PWS are aware of negative public perceptions directed toward them (Boyle, 2013; Bricker-Katz et al., 2010; Plexico et al., 2009a), and some may even agree with those negative stereotypes and apply them to other PWS (Boyle, 2013; Craig et al., 2003; Kalinowski, Lerman, & Watt, 1987). In addition to being aware of negative public stereotypes and applying them to other PWS, the stigma associated with stuttering can be directed inward and applied to the self to the detriment of psychological well-being (Boyle, 2013). PWS may then place restrictions on themselves vocationally (Klein & Hood, 2004) and socially (Bricker-Katz et al., 2010; Plexico et al., 2009a) that limit their participation in desired activities and accomplishment of life goals. 1.2.5. Perceived stuttering severity Theory related to stigmatized disabilities suggests that more noticeable, socially disruptive conditions may lead to higher amounts of stigma and lower levels of well-being (Jones et al., 1984). This translates into the possibility that increased stuttering severity is related to lower levels of well-being. It has been shown that increased shame and self-consciousness is related to higher self-ratings of struggle in stuttering (Ginsberg, 2000) and self-ratings of stuttered speech severity have been found to be negatively related to quality of life (Koedoot, Bouwmans, Franken, & Stolk, 2011). However, in other studies using percentage of syllables stuttered (%SS) or frequency of stuttering as the severity indicator, small or statistically nonsignificant relationships have been found between stuttering severity and quality of life (Craig et al., 2009), stuttering severity and elevated anxiety (Blumgart et al., 2010; Craig et al., 2003) and between stuttering severity and negative mood states or psychological distress (Tran et al., 2011). The discrepancy between these findings may have to do with the way severity was being measured (i.e., %SS vs. self-ratings). It is possible that some participants who engage in self-report interpret “severity of speech” as reaching beyond physical instances or frequency of stuttering events into more covert domains. 1.2.6. Perceptions about cause and future course of stuttering, perceived importance of fluency In addition to the various disability related factors (e.g., stuttering severity), personal factors (e.g., self-esteem, self-stigma) and environmental factors (e.g. availability of and participation in support groups for stuttering) already mentioned, there could also be a host of other variables that might be relevant to adaptation and adjustment to chronic stuttering. Several authors (Corrigan & Watson, 2002; Crocker & Major, 1989; Livneh & Antonak, 1997; Smart, 2001) have described variables such as beliefs about the cause of a disorder, its future course and persistence, and the importance placed on the impairment as relevant in examining adjustment to chronic disorders and disabilities. Beliefs about the cause of a disability can be relevant because perceiving personal responsibility in the onset or development of a disorder can lead to psychological distress (Smart, 2001). Much in the same way, perceptions of the future course of a disability in terms of being chronic or not can be related to feelings of guilt about being unable to change if one thinks the condition is modifiable (Livneh & Antonak, 1997; Smart, 2001). Finally, perceptions of the importance of the impaired or disabled trait (e.g., fluent speech) can have an impact on psychological well-being, with individuals who place lower importance on the disabled trait experiencing higher well-being than those who place a high amount of importance on it (Crocker & Major, 1989; Corrigan & Watson, 2002). Because of the potential relevance of these beliefs regarding stuttering to psychological adjustment, it was desired to compare these perceptions between adults who stutter with and without support group experience to determine if support groups engender a set of beliefs more likely to protect against negative effects of living with a chronic disability. 1.3. Purpose of the study Given the recent emphasis on quality of life in PWS as an important area of focus in the therapeutic process (Craig et al., 2009; Cummins, 2010; Tran et al., 2011; Yaruss, 2010), it will become increasingly important for researchers and clinicians to take into account several variables related to personal perceptions and beliefs related to stuttering. Some of these variables may be more abstract and harder to measure compared to more visible disability related factors (e.g., frequency of stuttering) or environmental factors (e.g., access to therapy), however they are important to account for nonetheless (Smart, 2001). As stated in the literature review, the variables of self-esteem, self-efficacy, life satisfaction were selected because they have been long identified as crucial components of psychological health and well-being (Rosenberg, 1979; Bandura, 1997; Pavot & Diener, 1993), however there is evidence that these may be at risk among adults who stutter (Craig et al., 2009; Ornstein & Manning, 1985; Plexico et al., 2009a). Perceptions of stuttered speech severity (Koedoot et al., 2011), and degree of internalized stigma related to stuttering (Boyle, 2013) have also been shown to be relevant to psychological well-being in

372

M.P. Boyle / Journal of Fluency Disorders 38 (2013) 368–381

PWS. Finally, beliefs regarding the cause and future course (Smart, 2001) and importance of the disabled trait (Corrigan & Watson, 2002) are relevant for chronic disabilities and it is suspected that this is true of stuttering. Given the relevance of all of these variables to psychological health and well-being of adults who stutter, it was of interest to determine if any differences on these variables existed between adults who stutter with and without self-help support group experience. If attending support groups for stuttering is an option that speech-language pathologists will introduce to clients as a possible adjunct to stuttering therapy (Yaruss et al., 2007), evidence should be acquired regarding psychological differences between individuals who have experience in these groups and those who do not. A secondary purpose of the study was to compare the self-esteem, self-efficacy, and life satisfaction of PWS as a group to normative data for adults in the United States. Previous research in the field of psychology has found that stigmatized groups do not necessarily have lower self-esteem or self-efficacy compared to non-stigmatized groups (Crocker & Major, 1989), and it was of interest to determine if that was the case for adults who stutter. Finally, it was of interest to determine reasons why people join self-help support groups for stuttering, and how helpful they perceive the groups to be. This information combined with perceptual data from support group attendees mentioned previously (e.g., Yaruss, Quesal, Reeves, et al., 2002) will enhance our knowledge of perceived benefits of self-help support groups for PWS. 2. Methods 2.1. Participants Data for the current study were collected from a total of 279 adults who stutter (178 males, 97 females, and 4 unspecified). Note that participants in this study were utilized as part of a larger sample (n = 331 including pilot data) in a previous study for development and psychometric evaluation of a new scale to measure stigma in PWS (Boyle, 2013). Participants involved in this study were selected from the larger group based on whether they were asked and responded to questions regarding support group involvement for stuttering. Participants ranged from 18 to 83 years of age (M = 39.70, SD = 15.89). Participants consisted of 33 (12%) African Americans, 6 (2%) Asian Americans, 11 (4%) Hispanic Americans, and 207 (74%) white, nonHispanics, and 20 (7%) participants specified “other” for ethnicity. One hundred and seventy five (63%) participants reported that they had prior experience in a support group for PWS, and 104 (37%) did not have any support group history. Of those who reported being involved in support groups, the amount of time ranged from two months to 35 years (M = 5.91, SD = 6.64). Only 32 (11.51%) of the participants had no current or prior treatment experience. In addition, only 19 (6.83%) of the sample had neither treatment experience nor support group experience. 2.2. Instruments The Rosenberg Self-Esteem Scale (RSES) (Rosenberg, 1989) was given to measure self-esteem. The RSES is a ten item scale that taps into overall feelings of self-worth. The scale contains 5 positively worded items (e.g., “I am able to do things as well as most other people”), and 5 negatively worded items (e.g., “I wish I could have more respect for myself”). Response categories include four options (1 = strongly disagree, 2 = disagree, 3 = agree, 4 = strongly agree) and scoring is done by summing item responses. The minimum possible score is 10 and the maximum is 40. Higher scores indicate higher self-esteem. The scale has been shown to be reliable (˛ = .88) and valid and has been used in hundreds of research studies in many different countries (Corrigan, Watson, & Barr, 2006). The General Self-Efficacy Scale (GSES) (Schwarzer & Jerusalem, 1995) was given to assess self-efficacy and beliefs regarding ability to cope with stressors and hassles of everyday life. The scale contains 10 items (e.g., “I can solve most of my problems if I invest the necessary effort”) and response options are on a 4 point scale (1 = not at all true, 2 = hardly true, 3 = moderately true, 4 = exactly true). Scores are obtained by summing the responses from each item with higher scores indicating higher levels of self-efficacy. The minimum possible score is 10 and the maximum is 40. The GSES has good reliability (˛ range from .76 to .90), construct validity, and has been used extensively in self-efficacy research across several different countries (Luszczynska, Gutierrez-Dona, & Schwarzer, 2004). The Satisfaction with Life Scale (SWLS) (Diener, Emmons, Larsen, & Griffin, 1985) was given to assess global life satisfaction, or the cognitive evaluation of one’s current life situation compared to ideals. It contains 5 items (e.g., “So far I have gotten the most important things I want in life”) measured on a 7 point response scale (1 = strongly agree to 7 = strongly disagree). Scores for the SWLS are calculated by summing responses from the items with higher scores representing higher life satisfaction. The minimum score is 7 and the maximum is 35. The SWLS has demonstrated good reliability (˛ = .87) and construct validity (Pavot & Diener, 1993) and has been used frequently in life satisfaction research (Pavot & Diener, 2008). The Self-Stigma of Stuttering Scale (4S) (Boyle, 2013) was used to measure internalized stigma of the participants. The stigma awareness portion measures the extent to which PWS perceive stigmatizing attitudes from the public regarding stuttering (e.g., “Most people in the general public believe that people who stutter are nervous”). The stereotype agreement portion measures how much PWS agree with negative stereotypes about other PWS (e.g., “I believe that most people who stutter are insecure”). The stigma self-concurrence portion measures the extent to which PWS apply negative societal attitudes toward themselves personally (e.g., “Because I stutter, I feel less capable than people who don’t stutter”). The 4S contains 33 items with a 5-point response range (1 = strongly disagree, 2 = somewhat disagree, 3 = neither agree nor disagree, 4 = somewhat

M.P. Boyle / Journal of Fluency Disorders 38 (2013) 368–381

373

agree, and 5 = strongly agree). This scale has demonstrated internal consistency (˛ = .87), temporal stability (r = .80), as well as content and initial construct validity (Boyle, 2013). Perceived stuttering severity was assessed using a self-report method reported by O’Brian, Packman, and Onslow (2004a), with a scale used in previous research studies (Iverach, O’Brian, Jones, et al., 2009; O’Brian, Jones, Packman, Menzies, & Onslow, 2011). Participants rate their typical stuttering severity for each of eight different speaking situations. “Typical” severity was defined using the description of O’Brian et al. (2011) as “the severity of your speech for the majority of the day.” Measuring across multiple contexts is beneficial due to the variability of stuttering. Responses are on a 9 point scale (1 = no stuttering and 9 = extremely severe stuttering) for all eight items. The eight speaking situations were: (1) talking with a family member, (2) talking with a familiar person, not a family member, (3) talking in a group of people, (4) talking with a stranger, (5) talking with an authority figure such as a work manager or teacher, (6) talking on the telephone, (7) ordering food or drink, and (8) giving their name and address. Ratings are averaged across the 8 items to yield a total severity rating. Self-report of stuttering severity has been described as an easy, practical, and reliable way to obtain data from a large number of PWS (O’Brian, Packman, & Onslow, 2004; O’Brian, Packman, Onslow, & O’Brian, 2004). There was 78% agreement within 1 point between severity rating of clinicians and PWS based on a variety of speech sample recording in different contexts (O’Brian et al., 2004a). A correlation of .91 was reported between mean percentage of syllables stuttered and mean ratings of the 9-point stuttering severity scale judged by 12 speech-language pathologists with expertise in stuttering (O’Brian, Packman, Onslow, & O’Brian, 2004). In the same study, the scale demonstrated 92% intrajudge agreement within 1 point and 83.7% interjudge agreement within 1 point on a variety of speech samples from 90 adults who stutter. The authors concluded that the study “. . .supports the use of either a %SS measure or a 9-point SEV scale in research and clinical practice. Both tools are reliable and can largely be used interchangeably for the measurement of stuttering” (O’Brian, Packman, Onslow, & O’Brian, 2004, p. 1086). It is still important to note however that the raters in this study may have been basing their ratings on outward physical symptoms of stuttering. There is still much debate in the area of stuttering about the use of the word “severity” and what it means. For example, certain assessment tools use perceived severity of physical symptoms and stuttering frequency as indicators of severity (e.g., Riley, 2009) while others contend that the word severity should be used more broadly for the disorder as a whole, including social, emotional, and cognitive elements (e.g., Manning, 2010). Participants were also asked questions related to perceptions of the causes of their stuttering, what they think the future course of their stuttering is, and how important they perceive fluent speech production to be when talking to other people. These questions were included because, as described in the literature review, they were suspected to be relevant to people’s adaptation to a chronic disability such as stuttering (Corrigan & Watson, 2002; Crocker & Major, 1989; Smart, 2001). Participants were asked what they believed causes stuttering, with response options of “differences in how the brain works,” “psychological or emotional problems,” or “unsure”. Participants were then asked, “What is your belief about the future of your stuttering?” with response options “I will probably stutter for the rest of my life to some degree,” “it will go away if I practice being fluent,” and “it will go away by itself.” Finally, participants answered the question “In general, how important is it to you to produce fluent speech when talking to other people?” Response options were “extremely important,” “moderately important,” “slightly important,” and “not at all important.” All questions and response options were approved by the Institutional Review Board (IRB) as well as the National Stuttering Association Research Committee (NSARC). As some of the questions in the preceding paragraph contained response options that could potentially confuse participants due to the fact that they included some misperceptions about adult stuttering, the author’s contact information was provided on the mandatory consent form that had to be signed prior to completion of any survey questions. Participants, as well as professionals who distributed the survey to clients, could contact the author with questions and concerns regarding the content of the survey. 2.3. Procedure Participants were recruited from the National Stuttering Association (NSA) as well as from Board Recognized Specialists in Fluency Disorders (BRS-FD). Participants completed an online survey created by Qualtrics Survey Research Suite Software Version 28,206 (Qualtrics Labs, Inc., Provo, UT) which included a series of scales and questions described in the previous section. After approval from the NSA Research Committee and the Institutional Review Board (IRB), the NSA publicized the survey by sending e-mails to listed names on their United States database. In addition, fluency specialists were asked to forward the Web survey to their clients or any other acquaintances who stutter. The number of requests and follow up requests for participation as well as the timing between requests followed the Dillman (2008) tailored design method for Web Surveys. Specifically, the NSA sent three e-mails to their database, with approximately three weeks between the first and second contact, and four weeks between the second and final contact. A similar timeline was followed with the fluency specialists, with the exception of a pre-notification e-mail being sent two days before the first official contact. 2.4. Data analysis Descriptive statistics including means and standard deviations were calculated for all relevant variables. Initially, participants were divided into two groups of those with support group experience and those with no such experience (participants responded Yes or No to the question “Have you ever been, or are you currently a member of a stuttering support group?”). In order to gain greater separation criteria between groups, the participants were divided between those who reported no

374

M.P. Boyle / Journal of Fluency Disorders 38 (2013) 368–381

support group experience and those with 5 or more years participating in groups, those who found the groups extremely helpful and those with no support group experience, and finally the groups were separated into groups of individuals who joined for various reasons (e.g., to help other people) and those with no support group experience. Independent samples t-tests were computed for mean scores on all measures. Because group sizes were not equal, Levene’s test for equality of variances was conducted for each comparison to determine whether equal variances could be assumed. Results indicated that variances could be assumed equal, p > .05, between participants with and without support group experience for each comparison (see Results section). One sample t-tests were then performed to determine whether the means of the current sample of adults who stutter differed significantly from normative data on self-esteem, self-efficacy, and life satisfaction for adults in the United States. Effect size (Cohen’s d) was calculated for all group differences regarding adults who stutter with and without support group experience. Chi square tests for independence were conducted for questions with categorical response options. 3. Results 3.1. Preliminary analyses Data related to perceived helpfulness of support groups for stuttering from the 175 participants who had experience attending these groups, as well as primary reasons for joining the groups is presented in Table 1. As can be seen, a majority of the sample reported that support groups are extremely helpful or moderately helpful. Also, it appears that the participants had several different reasons for joining and participating in these groups. It was of also of interest to determine how the scores of this sample of PWS as a whole (i.e., PWS both with and without support group experience) compared to normative data on measures of self-esteem, self-efficacy, and life satisfaction for adults in the United States. Table 2 presents the data from these comparisons. Self-esteem scores of PWS on the RSES were not significantly different from normative scores reported for adults in the United States. The average self-efficacy score for PWS was significantly larger than the mean reported for adults in the United States. The mean life satisfaction score for PWS was significantly lower than the normative average, however still within 1 SD of the mean. It is important to note that the Table 1 Perceived helpfulness and reasons for joining stuttering support groups. Variable

% (n)

Perceived helpfulness of support groups Extremely helpful Moderately helpful A little helpful Not at all helpful Biggest reasons for participating in support groupsa To meet other people who stutter To practice speech therapy techniques To share feelings, thoughts, and experiences To talk in a safe place To learn and understand more about stuttering To help others feel better about themselves Other

45.4 (79) 28.7 (50) 23 (40) 2.9 (5) 73.7 (129) 36.6 (64) 81.1 (142) 49.7 (87) 59.4 (104) 46 (81) 6 (11)

a Note. Participants could choose more than one option for “biggest reason for joining” so total percentages exceed 100%. “Other” reasons reported were: “had friends who said it would be a good thing,” “heal,” “social reasons,” “suggested by speech therapist to increase support,” “To DO something about my stutter. . . I ignored it for way too long,” “To encourage others,” “to get to a point where stuttering is no longer holding my life back,” and “to know about aid devices.”

Table 2 Self-esteem, self-efficacy, and life satisfaction of PWS compared to normative data. Measure Rosenberg Self-Esteem Scale PWS Normative data Generalized Self-Efficacy Scale PWS Normative data Satisfaction with Life Scale PWS Normative data

M (SD)

t

p

32.50 (5.98) 32.41 (5.41)

0.22

.83

32.30 (4.39) 29.48 (5.13)

8.64

<.001

22.59 (7.43) 24.02 (6.37)

−3.16

.002

Note. Sources for normative data on self-esteem come from an average of numbers collected from: Schmitt and Allik (2005) and Sinclair et al. (2010). Sinclair et al. scored the scale differently (0–30 rather than 10–40), therefore the normative data were adjusted accordingly. Source for normative data on self-efficacy: Scholz, Gutierrez-Dona, Sud, and Schwarzer (2002) and Schwarzer (2011). Source for normative data on satisfaction with life: Pavot and Diener (1993).

M.P. Boyle / Journal of Fluency Disorders 38 (2013) 368–381

375

Table 3 Differences between PWS with and without support group experience. Variable Self-esteem Support group experience No support group experience Self-efficacy Support group experience No support group experience Life Satisfaction Support group experience No support group experience Stigma awareness Support group experience No support group experience Stereotype agreement Support group experience No support group experience Stigma self-concurrence Support group experience No support group experience Perceived stuttering severity Support group experience No support group experience

M

SD

t

p

Cohen’s d

32.84 31.92

5.84 6.18

1.21

.228

0.15

32.30 32.29

4.27 4.62

0.03

.975

0.002

23.26 21.44

7.18 7.75

1.94

.053

0.24

3.57 3.53

0.58 0.56

0.64

.521

0.07

2.67 2.68

0.64 0.61

−0.10

.917

−0.02

2.52 2.89

0.88 0.92

−3.32

.001

−0.41

4.36 4.61

1.74 1.69

−1.16

.246

−0.15

sample of PWS in this study was limited due to convenience sampling and therefore should not be interpreted as normative data for the entire population of PWS in the United States. 3.2. Primary analyses Statistically significant differences were found between PWS with and without support group experience on the stigma self-concurrence portion of the 4S. The group of PWS with experience in support groups had lower internalized stigmatizing thoughts about themselves compared to those with no experience in support groups (Table 3). The effect size of this difference (d = −0.41) is considered small but non-trivial (Cohen, 1992). Although PWS with support group experience as a whole reported larger mean values of self-esteem, self-efficacy, and life satisfaction, these differences were not statistically significant. Differences in life satisfaction however, were approaching significance (p = .053). PWS with support group experience also reported lower stereotype agreement and perceived stuttering severity compared with those with no experience, but again these differences were not statistically significant. A post hoc power analysis was conducted with G*Power Version 3.1.2 (Buchner, Erdfelder, Paul, & Lang, 2009) to find out whether there was enough statistical power to detect significant differences between the groups. As there are no effect size estimates from previous data or theory on this issue, Cohen’s (1992) standards were used. Power analysis indicated a 99.9% chance of detecting large effect sizes and a 98.1% chance of detecting a medium effect size (defined by Cohen, 1992 as at least 0.80 and 0.50 of a standard deviation respectively) with the sample size attained in this study. The recommended power of 0.80 (Cohen, 1992) was obtained to detect a small effect size of at least d = 35. With power set at 0.80 and ˛ = .05 (two-tailed), sample sizes would need to have increased to n = 1398; 6,217,036; and 532 for self-esteem, self-efficacy, and life satisfaction, respectively, for group differences to reach statistical significance. Therefore it can be concluded that limited sample size was not a critical factor in the limited amount of significant differences between groups. A follow up correlational analysis was conducted to determine if amount of time participating in support groups was related to any of the variables of interest. No statistically significant correlations were found between amount of time of participation and self-esteem (r = .10), self-efficacy (r = .03), life satisfaction (r = .01), perceived stuttering severity (r = −.15), stigma awareness (r = −.08), stereotype agreement (r = .01), or stigma self-concurrence (r = −.13). In addition, the sample was divided into a group of individuals reporting no support group experience, and those reporting five or more years of experience in order to gain greater separation between the groups. The only significant difference was in stigma selfconcurrence t(153) = −3.71, p < .001. The sample was then divided into individuals who reported that the support groups had been “extremely helpful” and individuals reporting no support group experience. Again, the only significant difference found between these groups was stigma self-concurrence t(180), = −2.89, p = .004. When participants were grouped by biggest reason that they joined the support groups, significant differences emerged for several variables. As shown in Table 4, participants who reported joining support groups to help others feel better about themselves scored significantly higher in self-esteem and life satisfaction, and significantly lower in perceived stuttering severity and stigma self-concurrence compared to participants with no support group experience. Effect sizes were small to moderate for these differences. It is worth noting that when self-efficacy scores were averaged, rather than summed, there were also significant differences between groups on this variable as well, with participants joining support groups to help others demonstrating higher self-efficacy (M = 3.34, SD = 0.35) than those with no group experience (M = 3.21, SD = 0.48),

376

M.P. Boyle / Journal of Fluency Disorders 38 (2013) 368–381

Table 4 Differences Between PWS Joining Support Groups to Help Others and those with No Support Group Experience. Variable Self-esteem Joined support group to help others No support group experience Self-efficacy Joined support group to help others No support group experience Life Satisfaction Joined support group to help others No support group experience Stigma awareness Joined support group to help others No support group experience Stereotype agreement Joined support group to help others No support group experience Stigma self-concurrence Joined support group to help others No support group experience Perceived stuttering severity Joined support group to help others No support group experience

M

SD

t

p

Cohen’s d

34.17 31.92

5.24 6.18

2.56

.011

0.39

33.35 32.29

3.53 4.62

1.68

.094

0.26

24.75 21.44

7.01 7.75

2.97

.003

0.45

3.57 3.53

0.59 0.56

0.53

.595

0.07

2.51 2.68

0.56 0.61

−1.93

.055

−0.29

2.35 2.89

0.89 0.92

−3.97

< .001

−0.60

4.10 4.61

1.78 1.69

−1.98

.049

−0.29

Table 5 Differences in beliefs regarding onset and course of stuttering, and importance of fluency between PWS with and without support group experience. Variables and response options

Perceived cause of stuttering Differences in how the brain works Psychological or emotional problems Unsure of what causes stuttering Perceived future course of stutteringa It will go away by itself It will go away if I practice being fluent I will probably stutter for the rest of my life to some degree Perceived importance of fluency Extremely important Moderately important Slightly important Not important at all

2

% (n) Support group experience

No support group experience

68.79 (119) 12.14 (21) 19.08 (33)

61.17 (63) 17.48 (18) 21.36 (22)

0 (0) 9.2 (16) 90.8 (158)

1.92 (2) 19.23 (20) 78.85 (82)

32 (56) 36.57 (64) 24 (42) 7.43 (13)

49.04 (51) 41.35 (43) 8.65 (9) 0.96 (1)

2.04



p

.361

.09

.006

19.17

<.001

.26

Note. Due to violation of expected counts in one of the data cells, a Freeman–Halton extension of Fisher’s exact test for 2 × 3 tables (Freeman & Halton, 1951) was conducted rather than chi square analysis to determine if there was an association between support group experience and perceived future course of stuttering. a

t(182) = 2.06, p = .04. The change in significance is likely due to the increased power attained by including participants in the analysis that were originally excluded due to missing data on the GSES. In addition, participants who joined support groups in order to share feelings, thoughts, and experiences had significantly higher life satisfaction (M = 4.69, SD = 1.39) than participants with no support group experience (M = 4.29, SD = 1.54), t(242) = −2.13, p = .034. As shown in Table 5, there were significant associations between support group participation and beliefs about the future course of stuttering. Support group participants were more likely to believe that they will stutter for the rest of their lives to a certain extent, and less likely to believe that stuttering will go away completely, either by itself or with fluency practice, compared to PWS with no support group experience. There was also a significant association between support group participation and perceived importance of producing fluent speech when speaking to other people. Support group participants were less likely to view producing fluent speech as extremely or moderately important, and more likely to view fluent speech producing as slightly important, or not important at all, compared to PWS with no support group experience. No significant associations were found between support group participation and perceived cause of stuttering. 4. Discussion The purpose of this study was to compare PWS who had participated in self-help support groups for stuttering with those who had not in terms of self-esteem, self-efficacy, life satisfaction, self-stigma, perceived stuttering severity, and other stuttering-related beliefs. The findings suggest that PWS who had a history of participating in support groups for stuttering were less likely to internalize negative stigmatizing beliefs, less likely to believe that stuttering would go away (either by

M.P. Boyle / Journal of Fluency Disorders 38 (2013) 368–381

377

itself or with fluency practice), and less likely to perceive fluent speech production as being important when talking to other people compared to PWS with no support group experience. Importantly, PWS reporting that they had joined support groups to help other people demonstrated significantly higher self-esteem, self-efficacy, and life satisfaction, and lower internalized stigma and perceived stuttering severity compared with PWS with no support group experience. These findings may represent a higher degree of acceptance of stuttering as a chronic condition in adulthood for PWS with support group experience. Perhaps the increased social connection with other PWS lowers the perceived importance of fluency production when talking to other people. It is also possible that PWS in support groups are more likely to compare their speech to other PWS, rather than those who do not stutter, thereby minimizing the perceived importance of fluent speech. These findings support the notion that self-help support groups may be related to adaptive cognitive changes among PWS (Ramig, 1993; Reeves, 2007; Trichon & Tetnowski, 2011), particularly if participation is motivated by a desire to help other people. The findings of the study support the notion that altruism and helping others in a group context can potentially enhance self-esteem (Luterman, 2008). Other research has shown that altruism is predictive of life satisfaction (Dulin, Hill, Anderson, & Rasmussen, 2001) and that self-esteem is linked to altruistic behavior (Zheng, Zhang, & Yuan, 2012). Although the data from this study are correlational, the implications of these findings are that if support groups for PWS are set up in a way to provide a place for reciprocal helping and sharing between group members, positive psychological outcomes may occur. The current results may also partially explain why some PWS are more successful at coping with their stuttering than others. Support groups for stuttering may be a valuable means for PWS to develop adaptive, approach oriented coping behaviors and reduce avoidance of stuttering (Plexico, Manning, & Levitt, 2009b). These groups may facilitate resilience and reduce adverse effects of chronic stuttering through involving PWS in helpful social networks (Craig et al., 2011). In addition, decreasing the perceived importance of the impaired characteristic (i.e., fluent speech) may also buffer well-being in PWS. As noted by Craig et al. (2011), identifying factors that protect well-being, as well as factors that put PWS at risk for experiencing distress should be a focus of future research in stuttering. The current findings also support previous research in self-esteem for other stigmatized groups in our society showing that individuals from stigmatized groups can have very similar, or even higher, levels of self-esteem compared to nonstigmatized groups (see Crocker & Major, 1989, for a review). Adults who stutter, despite facing public stigma, as a group score similar to adults who do not stutter on self-esteem and higher in self-efficacy. While PWS reported significantly lower life satisfaction than normative data, scores were still within one standard deviation of the normative mean. Overall, these are positive findings that contrast with other recent research on the psychological well-being of adults who stutter compared to those who do not (e.g., Iverach, O’Brian, Jones, et al., 2009) (see Manning & Beck, 2011, 2013 for reviews supporting the notion that psychological issues, particularly personality disorders, have been overestimated in recent research such as Iverach, Jones, O’Brian, et al., 2009; Iverach, O’Brian, Jones, et al., 2009). Although the current findings are encouraging regarding the psychological health of PWS, the findings of this study should not be interpreted to mean that stuttering cannot be detrimental to the psychological well-being of adults who stutter. General levels of selfesteem, self-efficacy, and life satisfaction are separate psychological dimensions from other constructs (e.g., social anxiety or other psychological disorders) (Crocker & Major, 1989) that may be relevant for PWS. Therefore, it is entirely possible for stuttering to be psychologically damaging for PWS while maintaining typical levels of self-esteem, self-efficacy, and life satisfaction. Future research should explore these issues by assessing a wide variety of psychological variables in PWS. The results of this study that most PWS find support groups “extremely helpful” support those of Yaruss, Quesal, Reeves, et al. (2002) which found that a majority of participants believed that support groups had a “very positive” impact on their self-image and acceptance of themselves as PWS. Also, from this study it appears that considerably more PWS join and participate in support groups for meeting other PWS, and for sharing thoughts and feelings with others in a safe environment rather than practicing techniques taught in therapy. The findings presented in this study need to be viewed as preliminary due to several limitations. First, the cross-sectional and observational nature of the study precludes statements of causal determination between any of the variables. Second, although Web surveys have many benefits over traditional mail surveys (e.g., larger number of respondents able to be reached, less costly, more efficient data management) concerns regarding the generality and validity of responses have been raised (e.g., Wyatt, 2000). One of which is that response rate is not able to be calculated using a Web survey because the number of PWS who had access to the survey was not known. Thus, response bias may have affected the results. It is possible that the participants who participated in this study were different from those who chose not to participate. Using Dillman’s (2008) tailored design method of Web survey development and distribution hopefully minimized threats to validity of Web survey responses as much as possible in this study. Third, participants were recruited from either treatment or support group networks, and most had sought help for their stuttering in some way. It is possible that adults who stutter who had never sought out treatment are different from those who had in relation to variables like self-esteem, self-efficacy, and life satisfaction in addition to levels of trait and social anxiety (Craig et al., 2003). A related concern is the possibility of unintended coercion that might have been experienced by some participants if they were sent the survey from their current clinician. This possibility was hopefully minimized with the wording included in the consent form emphasizing voluntary participation and the right to withdraw at any time without negative consequences from any person or organization. Finally, the response options for questions related to perceived cause and future course of stuttering were broad, making it difficult to measure participants’ views on these topics in depth.

378

M.P. Boyle / Journal of Fluency Disorders 38 (2013) 368–381

This study adds to our knowledge of characteristics of PWS with self-help support group experience compared to those who do not, and indicates that these groups may be a means of facilitating enhanced psychological well-being and adaptive coping in PWS. Future investigations on this topic should include a variety of other items related to support group involvement such as type of involvement, consistency and degree of participation, amount of clinician involvement, and types of activities undertaken in order to gain an even deeper understanding of the most helpful roles of these groups. Future research will also benefit from comparing individuals with support group experience to PWS with no history of speech treatment on a variety of psychosocial measures. Although several variables were measured in this study, there are others (e.g., quality of life, empowerment, social support, level of trait and social anxiety, etc.) that will be relevant to analyze in future investigations in order to further understand the characteristics of PWS who participate in support groups. Rather than being limited to cross-sectional designs, longitudinal studies of psychosocial well-being among PWS who participate in support groups could also be investigated to monitor potential changes that occur throughout support group involvement. In addition, qualitative methodology could illustrate the meaning of self-help support group involvement and the perspectives of those who participate in it. Many rich descriptions of the experience of stuttering have been attained through qualitative research (e.g., Bricker-Katz et al., 2010; Plexico et al., 2009a, 2009b; Trichon & Tetnowski, 2011). It would be beneficial for this type of research to be extended to individuals with a high level of involvement in self-help support groups for stuttering, such as group chapter leaders and volunteers who exhibit qualities of altruism and a desire to help other PWS. CONTINUING EDUCATION

Psychological characteristics and perceptions of stuttering of adults who stutter with and without support group experience QUESTIONS

1. Which of the following is an accurate summary of recent research findings regarding the psychological well-being of people who stutter as a group? a. There are no differences in well-being between people who stutter and people who do not b. People who stutter have higher reported quality of life compared to people who do not stutter c. People who stutter demonstrate an elevated risk of social anxiety compared with people who do not stutter d. People who stutter demonstrate higher levels of depression compared with people who do not stutter e. People who stutter exhibit higher life satisfaction than people who do not stutter 2. According to the author, which of the following is NOT an example of evidence from empirical research demonstrating support for addressing psychosocial issues in stuttering treatment? a. People who stutter believe that therapy should address feelings and attitudes b. Fears and concerns about stuttering among people who stutter may still persist even after fluency therapy c. The presence of anxiety is a predictor of avoidance of speaking situations following speech therapy d. Treatments that include cognitive components as well as speech change components increase clients’ entry into feared speaking situations more so than treatment with only speech change components e. People who stutter report that there is no added benefit of addressing thoughts and feelings in stuttering therapy if fluency is attained 3. Identify an accurate definition of self-efficacy: a. A person’s subjective judgments of how their current life situation matches their desired standards b. A person’s overall self-worth and self-regard c. A person’s belief or confidence in their ability to carry out an action required to obtain a certain outcome d. The degree of internalized stigmatizing attitudes the person carries e. A person’s judgment of their stuttering severity in different situations 4. Which of the following is NOT true regarding the main findings of the current study? a. People who stutter with support group experience demonstrated significantly lower self-esteem than those with no support group experience b. People who stutter with support group experience demonstrated significantly lower stigma self-concurrence than those with no support group experience c. People who stutter with support group experience were more likely to think that they would stutter for the rest of their lives compared with those with no support group experience d. People who stutter with support group experience were less likely to view speaking fluently as highly important compared with those with no support group experience e. People who stutter with support group experience demonstrated lower perceived stuttering severity than those with no support group experience

M.P. Boyle / Journal of Fluency Disorders 38 (2013) 368–381

379

5. Which of the following is a true summary of the findings of this study? a. People who stutter reported significantly higher life satisfaction than normative data for adults in the United States b. People who stutter reported significantly higher self-efficacy than normative data for adults in the United States c. People who stutter reported significantly higher self-esteem than normative data for adults in the United States d. All of the scores for people who stutter for self-esteem, self-efficacy, and life satisfaction were within one standard deviation of means of normative data, except for life satisfaction e. People who stutter who joined support groups to help other people who stutter reported lower self-esteem than people who stutter with no support group experience Acknowledgements It is acknowledged that participants in this study were utilized in a previous publication (Boyle, 2013); however, the aims of the current study are independent from the previous investigation. The data in this study were collected as part of the author’s 2012 doctoral dissertation at The Pennsylvania State University. I would like to thank Gordon Blood for his feedback and support, in addition to Ingrid Blood, Robert Prosek, and James Herbert for their thoughtful comments during this study. I also thank the National Stuttering Association and the Board Recognized Specialists in Fluency Disorders who helped with participant recruitment. Finally, I thank all of the participants in this research. Appendix A. Supplementary data Supplementary data associated with this article can be found, in the online version, at http://dx.doi.org/ 10.1016/j.jfludis.2013.09.001. References American Speech-Language-Hearing Association. (2007). Scope of practice in speech-language pathology [Scope of Practice]. http://www.asha.org/policy Bandura, A. (1982). Self-efficacy mechanism in human agency. American Psychologist, 37, 122–147. Bandura, A. (1986). Social foundation of thought and action: A social cognitive theory. Englewood Cliffs, NJ: Prentice Hall. Bandura, A. (1997). Self-efficacy: The exercise of control. New York: Freeman. Barlow, S. H., Burlingame, G. M., Nebeker, R. S., & Anderson, E. (1999). Meta-analysis of medical self-help groups. International Journal of Group Psychotherapy, 50, 53–69. Battle, J. (1994). Promoting self-esteem, achievement, and well-being: An effective instructional curriculum for all levels. Edmonton, Alberta: James Battle and Associates. Beilby, J. M., Byrnes, M. L., Meagher, E. L., & Yaruss, J. (2013). The impact of stuttering on adults who stutter and their partners. Journal of Fluency Disorders, 38, 14–29. Beilby, J. M., Byrnes, M. L., & Yaruss, J. S. (2012). Acceptance and commitment therapy for adults who stutter: Psychosocial adjustment and speech fluency. Journal of Fluency Disorders, 37, 289–299. Beilby, J. M., Byrnes, M. L., & Young, K. N. (2012). The experiences of living with a sibling who stutters: A preliminary study. Journal of Fluency Disorders, 37, 135–148. Bleek, B., Reuter, M., Yaruss, J. S., Cook, S., Faber, J., & Montag, C. (2012). Relationships between personality characteristics of people who stutter and the impact of stuttering on everyday life. Journal of Fluency Disorders, 37, 325–333. Blood, G. W., & Blood, I. M. (2004). Bullying in adolescents who stutter: Communicative competence and self-esteem. Contemporary Issues in Communication Science and Disorders, 31, 69–79. Blood, G. W., Blood, I. M., Tellis, G. M., & Gabel, R. M. (2003). A preliminary study of self-esteem, stigma, and disclosure in adolescents who stutter. Journal of Fluency Disorders, 28, 143–159. Blood, G. W., Blood, I. M., Tramontana, G. M., Sylvia, A. J., Boyle, M. P., & Motzko, G. R. (2011). Self-reported experience of bullying of students who stutter: Relations with life satisfaction, life orientation, and self-esteem. Perceptual and Motor Skills, 113, 1–12. Blumgart, E., Tran, Y., & Craig, A. (2010). Social anxiety disorders in adults who stutter. Depression and Anxiety, 27, 687–692. Bothe, A. K., Davidow, J. H., Bramlett, R. E., & Ingham, R. J. (2006). Stuttering treatment research 1970-2005: I. Systematic review incorporating quality assessment of behavioral, cognitive, and related approaches. American Journal of Speech-Language Pathology, 15, 321–341. Boyle, M. P. (2013). Assessment of stigma associated with stuttering: Development and evaluation of the Self-Stigma of Stuttering Scale (4S). Journal of Speech, Language and Hearing Research, 56, 1517–1529. Bray, M. A., Kehle, T. J., Lawless, K. A., & Theodore, L. A. (2003). The relationship of self-efficacy and depression to stuttering. American Journal of SpeechLanguage Pathology, 12, 425–431. Bricker-Katz, G., Lincoln, M., & McCabe, P. (2010). Older people who stutter: Barriers to communication and perceptions of treatment needs. International Journal of Communication Disorders, 45, 15–30. Buchner, A., Erdfelder, E., Paul, F., & Lang, A. (2009). G*Power version 3.1.2 (computer program). http://www.psycho.uniduesseldorf.de/aap/projects/gpower/ Cohen, J. (1992). A power primer. Psychological Bulletin, 112, 155–159. Corrigan, P. W., & Watson, A. C. (2002). The paradox of self-stigma and mental illness. Clinical Psychology: Science and Practice, 9, 35–53. Corrigan, P. W., Watson, A. C., & Barr, L. (2006). The self-stigma of mental illness: Implications for self-esteem and self-efficacy. Journal of Social and Clinical Psychology, 25, 875–884. Craig, A., Blumgart, E., & Tran, Y. (2009). The impact of stuttering on the quality of life in adults who stutter. Journal of Fluency Disorders, 34, 61–71. Craig, A., Blumgart, E., & Tran, Y. (2011). Resilience and stuttering: factors that protect people from the adversity of chronic stuttering. Journal of Speech, Language, and Hearing Research, 54, 1485–1496. Craig, A., Hancock, K., Tran, Y., & Craig, M. (2003). Anxiety levels in people who stutter: A randomized population study. Journal of Speech Language and Hearing Research, 46, 1197–1206. Cream, A., Onslow, M., Packman, A., & Llewellyn, G. (2003). Protection from harm: The experience of adults after therapy with prolonged-speech. International Journal of Language and Communication Disorders, 38, 379–395. Crocker, J., & Major, B. (1989). Social stigma and self-esteem: The self-protective properties of stigma. Psychological Review, 96, 608–630. Cummins, R. A. (2010). Fluency disorders and life quality: subjective wellbeing vs. health-related quality of life. Journal of Fluency Disorders, 35, 161–172. Diener, E., Emmons, R. A., Larsen, R. J., & Griffin, S. (1985). The Satisfaction with Life Scale. Journal of Personality Assessment, 49, 71–75.

380

M.P. Boyle / Journal of Fluency Disorders 38 (2013) 368–381

de Veer, S., Brouwers, A., Evers, W., & Tomic, W. (2009). A pilot study of the psychological impact of the Mindfulness Based Stress Reduction Program on persons who stutter. Journal of European Psychotherapy, 9, 39–56. Dillman, D. A. (2008). Internet, mail, and mixed-mode surveys: The tailored design method (3rd ed.). Hoboken, NJ: John Wiley Co. Dulin, P., Hill, R. D., Anderson, J., & Rasmussen, D. (2001). Altruism as a predictor of life satisfaction in a sample of low-income older adult service providers. Journal of Mental Health and Aging, 7, 349–360. Freeman, G. H., & Halton, J. H. (1951). Note on exact treatment of contingency, goodness of fit and other problems of significance. Biometrika, 38, 141–149. Ginsberg, A. P. (2000). Shame, self-consciousness, and locus of control in people who stutter. Journal of Genetic Psychology, 161, 389–399. Guitar, B. (2013). Stuttering: An integrated approach to its nature and treatment (4th ed.). Baltimore, MD: Lippincott Williams & Wilkins. Healey, E. C., Scott Trautman, L., & Susca, M. (2004). Clinical applications of a multidimensional approach for the assessment and treatment of stuttering. Contemporary Issues in Communication Sciences and Disorders, 31, 40–48. Hunt, B. (1987). Self-help for stutterers–Experience in Britain. In L. Rustin, H. Purser, & D. Rowley (Eds.), Progress in the treatment of fluency disorders (pp. 198–214). London: Taylor & Francis. Ingham, R. J. (2012). Comments on recent developments in stuttering treatment maintenance research using the Camperdown Program. Journal of Speech, Language, and Hearing Research, 55, 306–309. Iverach, L., Jones, M., O’Brian, S., Block, S., Lincoln, M., Harrison, E., et al. (2009). The relationship between mental health disorders and treatment outcomes among adults who stutter. Journal of Fluency Disorders, 34, 29–43. Iverach, L., O’Brian, S., Jones, M., Block, S., Lincoln, M., Harrison, E., et al. (2009). Prevalence of anxiety disorders among adults seeking speech therapy for stuttering. Journal of Anxiety Disorders, 23, 928–934. Jones, E. E., Farina, A., Hastorf, A. H., Markus, H., Miller, D., & Scott, R. A. (1984). Social stigma: The psychology of marked relationships. New York: Freeman. Kalinowski, J. S., Lerman, J. W., & Watt, J. (1987). A preliminary examination of the perceptions of self and others in stutterers and nonstutterers. Journal of Fluency Disorders, 12, 317–331. Klein, J. F., & Hood, S. B. (2004). The impact of stuttering on employment opportunities and job performance. Journal of Fluency Disorders, 29, 255–272. Klompass, M., & Ross, E. (2004). Life experiences of people who stutter, and the perceived impact of stuttering on quality of life: Personal accounts of South African individuals. Journal of Fluency Disorders, 29, 275–305. Koedoot, C., Bouwmans, C., Franken, M. C., & Stolk, E. (2011). Quality of life in adults who stutter. Journal of Communication Disorders, 44, 429–443. Langevin, M., Huinck, W. J., Kully, D., Peters, H. F. M., Lomheim, H., & Tellers, M. (2006). A cross-cultural, long-term outcome evaluation of the ISTAR Comprehensive Stuttering Program across Dutch and Canadian adults who stutter. Journal of Fluency Disorders, 31, 229–256. Lau, S., Beilby, J. M., Byrnes, M. L., & Hennessey, N. W. (2012). Parenting styles and attachment in school-aged children who stutter. Journal of Communication Disorders, 45(2), 98–110. Livneh, H., & Antonak, R. F. (1997). Psychosocial adaptation to chronic illness and disability. Gaithersbury, MD: Aspen Publication. Luszczynska, A., Gutierrez-Dona, B., & Schwarzer, R. (2004). General self-efficacy in various domains of human functioning: Evidence from five countries. International Journal of Psychology, 139, 439–457. Luterman, D. M. (2008). Counseling persons with communication disorders and their families (5th ed.). Austin, TX: Pro-Ed. Manning, W. (2004). How can you understand? You don’t stutter!. Contemporary Issues in Communication Sciences and Disorders, 31, 58–68. Manning, W. (2010). Clinical decision making in fluency disorders (3rd ed.). Albany, NY: Delmar–Cengage Learning. Manning, W., & Beck, J. G. (2011). Comments concerning Iverach, L., Jones, M., O’Brian, S., et al. (2009) Screening for personality disorders among adults seeking speech treatment for stuttering. Journal of Fluency Disorders, 36, 173–186. Manning, W., & Beck, J. G. (2013). Personality dysfunction in adults who stutter: Another look. Journal of Fluency Disorders, 38, 184–192. McClure, J. A., & Yaruss, J. S. (2003). Stuttering survey suggests success of attitude-changing treatment. The ASHA Leader,. May 13. Menzies, R. G., O’Brian, S., Onslow, M., Packman, A., St Clare, T., & Block, S. (2008). An experimental clinical trial of a cognitive-behavior therapy package for chronic stuttering. Journal of Speech, Language, and Hearing Research, 51, 1451–1464. Murphy, B., Quesal, R. W., & Gulker, H. (2007). Covert stuttering. Perspectives in Fluency and Fluency Disorders, 17, 4–9. Murphy, W. P., Yaruss, J. S., & Quesal, R. W. (2007). Enhancing treatment for school-age children who stutter. I. Reducing negative reactions through desensitization and cognitive restructuring. Journal of Fluency Disorders, 32, 121–138. National Stuttering Association (NSA). (2009). The experience of people who stutter: A survey by the National Stuttering Association. http://www.westutter.org/what-is-stuttering/the-experience-of-people-who-stutter/ National Stuttering Association (NSA). (2013). About the NSA. http://www.westutter.org/about-the-nsa/ O’Brian, S., Jones, M., Packman, A., Menzies, R., & Onslow, M. (2011). Stuttering severity and educational attainment. Journal of Fluency Disorders, 36, 86–92. O’Brian, S., Packman, A., & Onslow, M. (2004). Self-rating of stuttering severity as a clinical tool. American Journal of Speech-Language Pathology, 13, 219–226. O’Brain, S., Packman, A., Onslow, M., & Menzies, R. (2012). Measuring outcomes following the Camperdown Program for stuttering: A response to Dr. Ingham. Journal of Speech, Language, and Hearing Research, 55, 310–312. O’Brian, S., Packman, A., Onslow, M., & O’Brian, N. (2004). Measurement of stuttering in adults: Comparison of stuttering-rate and severity-scaling methods. Journal of Speech, Language, and Hearing Research, 47, 1081–1087. Ornstein, A., & Manning, W. H. (1985). Self-efficacy scaling by adult stutterers. Journal of Communication Disorders, 18, 313–320. Pavot, W. G., & Diener, E. (1993). Review of the Satisfaction with Life Scale. Psychological Assessment, 5, 164–172. Pavot, W. G., & Diener, E. (2008). The Satisfaction with Life Scale and the emerging construct of life satisfaction. Journal of Positive Psychology, 3, 137–152. Plexico, L. W., Manning, W. H., & Levitt, H. (2009a). Coping responses by adults who stutter: Part I. Protecting the self and others. Journal of Fluency Disorders, 34, 87–107. Plexico, L. W., Manning, W. H., & Levitt, H. (2009b). Coping responses by adults who stutter: Part II. Approaching the problem and achieving agency. Journal of Fluency Disorders, 34, 108–126. (2011). Qualtrics Survey Research Suite version 28,206. Provo, UT: Qualtrics Labs, Inc (computer software). http://www.qualtrics.com Ramig, P. (1993). The impact self-help groups on persons who stutter: A call for research. Journal of Fluency Disorders, 18, 351–361. Reeves, L. (2006). The role of self-help/mutual aid in addressing the needs of individuals who stutter. In N. Bernstein Ratner, & J. Tetnowski (Eds.), Current issues in stuttering research and practice (pp. 255–278). Mahwah, NJ: Lawrence Erlbaum Associates Publishers. Reeves, L. (2007). Are self-help/mutual aid groups and professional intervention mutually exclusive concepts for helping those affected by stuttering? Perspectives on Fluency and Fluency Disorders, 17, 4–8. Riley, G. D. (2009). Stuttering severity instrument for children and adults (SSI-4) (4th ed.). Austin, TX: Pro-Ed, Inc. Rosenberg, M. (1965). Society and the adolescent self-image. Princeton, NJ: Princeton University Press. Rosenberg, M. (1979). Conceiving the self. New York: Basic Books. Rosenberg, M. (1989). Society and the adolescent self-image (revised ed.). Middletown, CT: Wesleyan University Press. Schmitt, D. P., & Allik, J. (2005). Simultaneous administration of the Rosenberg Self-Esteem Scale in 53 nations: Exploring the universal and culture-specific of global self-esteem. Journal of Personality and Social Psychology, 89, 623–642. Scholz, U., Gutierrez-Dona, B., Sud, S., & Schwarzer, R. (2002). Is general self-efficacy a universal construct? Psychometric findings from 25 countries. European Journal of Psychological Assessment, 18, 242–251. Schwarzer, R. (2011). Everything you wanted to know about the General Self-Efficacy Scale but were afraid to ask. http://userpage.fu-berlin.de/∼health/selfscal.htm Schwarzer, R., & Jerusalem, M. (1995). Generalized Self-Efficacy Scale. In J. Weinman, S. Wright, & M. Johnston (Eds.), Measures in health psychology: A user’s portfolio. Causal and control beliefs (pp. 35–37). Windsor, UK: NFER-NELSON.

M.P. Boyle / Journal of Fluency Disorders 38 (2013) 368–381

381

Sinclair, S. J., Blais, M. A., Gansler, D. A., Sandberg, E., Bistis, K., & LoCicero, A. (2010). Psychometric properties of the Rosenberg Self-Esteem Scale: Overall and across demographic groups living within the United States. Evaluation and the Health Professions, 33, 56–80. Smart, J. (2001). Disability, society, and the individual. Gaithersburg, MD: Aspen Publishing. Tran, Y., Blumgart, E., & Craig, A. (2011). Subjective distress associated with chronic stuttering. Journal of Fluency Disorders, 36, 17–26. Trichon, M. (2007). Getting the maximum benefits from support groups: Perspectives of members and group leaders. Perspectives on Fluency and Fluency Disorders, 17, 10–13. Trichon, M., & Tetnowski, J. (2011). Self-help conferences for people who stutter: A qualitative investigation. Journal of Fluency Disorders, 36, 290–295. Wyatt, J. C. (2000). When to use web-based surveys. Journal of the American Medical Informatics Association, 7, 426–429. Yaruss, J. S. (2010). Assessing quality of life in stuttering treatment outcomes research. Journal of Fluency Disorders, 35, 190–202. Yaruss, J. S., Coleman, C. E., & Quesal, R. W. (2012). Stuttering in school-age children: A comprehensive approach to treatment. Language, Speech, and Hearing Services in Schools, 43, 536–548. Yaruss, J. S., Quesal, R. W., & Murphy, B. (2002). National Stuttering Association members’ opinions about stuttering treatment. Journal of Fluency Disorders, 27, 227–242. Yaruss, J. S., Quesal, R. W., & Reeves, P. L. (2007). Self-help and mutual aid groups as an adjunct to stuttering therapy. In E. G. Conture, & R. F. Curlee (Eds.), Stuttering and related disorders of fluency (3rd ed., pp. 256–276). New York: Thieme Medical Publishers. Yaruss, J. S., Quesal, R. W., Reeves, L., Molt, L. F., Kluetz, B., Caruso, A. J., et al. (2002). Speech treatment and support group experiences of people who participate in the National Stuttering Association. Journal of Fluency Disorders, 27, 115–134. Yovetich, W. S., Leschied, A. W., & Flicht, J. (2000). Self-esteem of school-age children who stutter. Journal of Fluency Disorders, 25, 143–153. Zheng, X., Zhang, T., & Yuan, Q. (2012). Self-esteem and internet altruistic behavior: Mediating role of empathy. Chinese Journal of Clinical Psychology, 20, 550–551.

Michael P. Boyle received his Ph.D. from The Pennsylvania State University in 2012. He is currently an Assistant Professor in the Department of Communication Sciences and Disorders at Oklahoma State University. His research is focused on psychosocial aspects of stuttering including stigma, causal attribution, and factors that predict positive adjustment and adaptation to stuttering in adults and adolescents who stutter.