تاثیر لکنت زبان بر روی بزرگسالان که لکنت زبان دارند و همکاران آنها

This study explored the impact of the stuttering disorder on perceived quality of life, with emphasis on the individual's relationship with their partner or spouse. Specifically, the purposes were: (a) to investigate what personal experiences and themes exist for both members of a couple dyad when one member of the couple stutters and (b) to examine whether the partners have different experiences with respect to the impact of stuttering on their lives. A mixed method research design was used. Participant dyads (adults who stutter and their fluent life partner) each completed one semi-structured qualitative interview and two questionnaires: the Overall Assessment of Speakers’ Experience of Stuttering (OASES), and the Medical Short Form 36 (SF-36). Interviews were analysed qualitatively and significant themes evaluated. Quantitative results of the OASES and SF-36 were analysed, and scores correlated to determine the strength of any clinically significant relationships. Results indicated that people who stutter and their fluent partners reported similar experiences in reactions to stuttering and perceived difficulties in communication. However, no relationship was seen between the two groups in perceived impact on quality of life. Qualitative results indicated that the participants shared life experiences including reactions to stuttering, treatment undertaken and support. Such findings lend support to a broad-based clinical programme for adults who stutter that includes the fluent partner as an agent of change in their treatment. Findings also support the utilisation of qualitative and quantitative research techniques to elucidate relevant psychosocial life themes and experiences for those who live with a stutter. Educational objectives The reader will be able to: (a) identify the life themes associated with having a partner who stutters; (b) identify the perceived impact of stuttering for adults who stutter compared to their partners; and (c) discuss the clinical implications of the results with regards to working with adults who stutter.

1.1. The perceived life impact of stuttering People who stutter (PWS) often view their speech as an obstacle to developing relationships with potential partners (Hayhow et al., 2002 and Van Borsel et al., 2011). In part, this may be due to anxiety that some people who stutter develop about speaking in social settings. A meta-analysis of the literature conducted by Craig and Tran (2006) revealed chronic levels of anxiety experienced by those who stutter and their subsequent fear and avoidance of social interactions. Petrunik and Shearing (1983) explored these experiences regarding social interactions and suggested that underlying behaviours include avoidance, circumvention, voluntary disclosure and denial. A recent article by Van Borsel et al. (2011) found that adolescents and young adults perceived their peers who stuttered to be less attractive than those who were fluent. Further, these fluent young people were less likely to engage in a romantic relationship with someone who stuttered. There are a number of studies that have investigated the prevalence of avoidance behaviours and coping strategies in PWS (Daniels, 2007, Daniels et al., 2006, Klein and Hood, 2004 and Messenger et al., 2004). However, there is a gap within the literature exploring the impact and prevalence of such behaviours on the personal support networks of people who stutter. Klompas and Ross (2004) investigated the impact of stuttering on key psychosocial aspects of the PWS's life. Measures included employment, self-esteem, marital and family status as well as overall emotional functioning. The study found that 43.7% of participants identified that stuttering did have a negative influence on their marital and family life; however, the research did not explore how the quality of life of the partner of the PWS was also affected. 1.2. Quality of life The concept of quality of life (QoL) for individuals who stutter is inherently complex and the empirical literature is not unambiguous. Patrick and Erickson (1993) recognised QoL as being “a comprehensive construct that encompasses the emotional, mental and physical functioning, life satisfaction and overall well-being” (p. 377). It has been demonstrated that the features pertaining to QoL impacted upon for individuals who stutter may include vitality, social functioning, emotional functioning and mental health (Craig et al., 2009 and Yaruss, 2010). These features have been evaluated using both qualitative and quantitative assessment measures. People who stutter do not often report difficulties across the more physical areas within standard QoL instruments, such as pain, general health, vitality or sexual function. However, they do report difficulties often with social interactions, perceived ability to reach potential in education and vocational opportunities and general activities of daily living (e.g., Craig, 2010, Craig et al., 2009, Klein and Hood, 2004, St Louis, 2001 and Yaruss and Quesal, 2006). The clinical potential for measuring QoL provides a broader understanding of the clients’ experiences and life impacts that the speech disorder may potentially pose. Yaruss (2010) suggests that it is, in fact, the essence of the speech pathologist's job to address their clients’ quality of life and explore their life experiences. Further, the American Speech-Language-Hearing Association recognise this role to be one of “improving quality of life by reducing impairments of body function and structures, activity limitations, participation restrictions, and barriers caused by contextual factors” (ASHA, 2007, p. 4). 1.3. Other disorders A number of studies have investigated the QoL of partners who live with adults with serious disabilities. Such studies have been conducted with partners of stroke survivors experiencing aphasia and partners of people who have suffered spinal cord disability (Angermeyer et al., 2006, Kershaw et al., 2008 and Kim et al., 2008). These studies have found that spouses of people affected by a variety of communication-specific disorders or general sudden-onset chronic disabilities demonstrate significantly reduced and impaired QoL ratings. For example, literature specific to spinal cord injury has found that the spouse emerges as a key facilitator in their partner's rehabilitation. Further, it has demonstrated how the partner can embody a positive support system which in turn directly affects the level of therapeutic gain achieved following the sudden onset of the impairment (Kershaw et al., 2008, Kim et al., 2008 and Vargo and Stewin, 1984). 1.4. Impact on partners of people who stutter Previous research has explored others’ perceptions of people who stutter from the point of view of teachers, students, professionals, parents, employers and peers (Crowe and Cooper, 1977, Crowe and Walton, 1981, Dorsey and Guenther, 2000, Fowlie and Cooper, 1978, Lass et al., 1992, St Louis and Lass, 1981, St. Louis et al., 2009, White and Collins, 1984, Woods and Williams, 1976 and Yeakle and Cooper, 1986). The impact that the speech disorder potentially poses has also been investigated from the perspective of the speech-language pathologists, vocational rehabilitation counsellors, special educators, relatives and family members (Cooper and Cooper, 1996, Cooper and Rustin, 1985, Craig et al., 2002, Doody et al., 1993, Guntupalli et al., 2006, Hurst and Cooper, 1978, Kalinowski et al., 1993, Lass et al., 1989, Rami et al., 2003, Turnbaugh et al., 1979, Woods and Williams, 1976, Yairi and Williams, 1970 and Zhang et al., 2009). Despite the copious amount of research into others’ perceptions of stuttering, the most intimate relationship of all, that with the partner, remains relatively unexplored. Close relationships are believed to improve the overall physical and emotional domains within the individual's self-rated QoL (Myers, 1999). The social need for intimacy and companionship is an underlying driving force that sustains human beings in day-to-day living. Accordingly, the impact of disability on the formation and maintenance of intimate relationships is an important and previously limited theme in stuttering disorder literature. Given that people who stutter have reported concerns about their ability to form relationships (especially intimate relationships, e.g., Hayhow et al., 2002), it seems particularly important to explore how the experience of stuttering may affect partners of people who stutter. Moreover, if individuals who stutter are in some way limited in their ability to communicate with their partners due either to stuttering or to anxieties about speaking, this may lead to problems in the formation of long-term relationships or difficulties with problem-solving within the family unit. On the other hand, if a person who stutters is dependent upon his or her partner for communication, then this may have an adverse impact on the speaker's ability to participate fully in life experiences outside of the home environment. Boberg and Boberg (1990) devised a hallmark study investigating the impact of stuttering from the spouse's perspective. The study involved 15 marriage partners of the adults who stuttered who engaged in a series of interviews. Questions examined the diverse ways in which the spouse was affected by the partner's fluency disorder. The study identified a number of issues including: the emotional effects of the partner's dysfluency, related anxieties during courtship and anxieties on their actual wedding day. Further, Boberg and Kully (1985) raised awareness regarding the pivotal role the spouse could play as an agent for therapeutic change in their spouse's fluency therapy. In conversations between PWS and their fluent partners, fluent partners proved to be primary facilitators ensuring the success of the interactions (Hughes, Gabel, Irani, & Schlagheck, 2010). Boberg and Boberg (1990) also found that speakers achieved greater success when partners were actively involved in their spouses’ therapy programmes. Other research has also recognised that supportive relationships serve as a critical element beneficial to the overall experience of therapy (Corcoran & Stewart, 1998). Still, specific issues related to how a stuttering disorder might affect the quality of life of fluent partners, or how the presence of a fluent partner might affect an individual who stutters, have yet to be examined. 1.5. Quantitative and qualitative stuttering research Yaruss and Quesal, 2004 and Yaruss and Quesal, 2006 proposed that existing models within the literature under-represent the complex experiences of PWS. Accordingly, they developed a quantifiable subjective measurement tool which assesses the life perspectives of stuttering: Overall Assessment of the Speaker's Experience with Stuttering (OASES; Yaruss & Quesal, 2006). This assessment evaluates the underlying, implicit effects of stuttering on a clients’ overall quality of life. Based on the client's self-perceptions, it serves to assess personal reactions in terms of affective, behavioural and cognitive reactions to stuttering, as well as functional communication difficulties and adverse impact of stuttering on quality of life. An important component of the speaker's experiences involve environmental factors, including interpersonal influences and the reactions of those with whom speakers interact, such as partners, family members or peers. To assess these interactions from the perspective of the speakers’ partners, this study used an adapted version of the OASES specifically designed for use with the fluent partners of people who stutter. An additional quantitative assessment that assesses the impact of disability across physical and emotional domains is The Medical Short Form 36 (SF-36) (Ware, Snow, Kosinski, & Gandek, 1993). The SF-36 has been shown to possess good reliability and validity across a broad range of clinical populations (Craig et al., 2009). Craig et al. (2009) outlined how quantitative studies have assessed key areas that contribute to a person's happiness and how more recent qualitative research has extended the insights beyond that obtained through the predetermined categories found in traditional QoL measures. Specifically, qualitative research has contributed interesting and clinically valid findings augmenting the previous reliance on quantitative measurement of stuttering (Boberg and Boberg, 1990, Corcoran and Stewart, 1998, Hughes et al., 2010, Klompas and Ross, 2004, Plexico et al., 2005, Plexico et al., 2009a and Plexico et al., 2009b). Qualitative research methods study the experience of living with a stutter and as such, provide opportunity to explore interconnections between participants’ experiences which might otherwise be underestimated or lost (Tetnowski & Damico, 1999). To fully explore the perceptions of all participants and to capture detailed, representative data, the present study adopted a mixed methods approach. Tashakkori and Teddlie (2003) identified how a mixed method approach is most beneficial when the researcher wishes to answer questions that would be difficult utilising an exclusive qualitative or quantitative approach. These authors further advocate a mixed methods design as a most legitimate means of exploration within social and psychological investigations. 1.6. Research aims This study aimed to explore the impact of stuttering on perceived quality of life, with specific emphasis on the impact on the individual's interpersonal and most intimate relationship, that is, with his or her partner or spouse. Specifically, the purposes of the present study were to investigate: (a) qualitatively, what personal experiences and themes exist for the both members of a couple dyad regarding forming and maintaining personal relationships when one member of the couple stutters; (b) quantitatively, whether the individual who stutters and the fluent partner have significantly different experiences with respect to the impact of stuttering on their lives. It was hypothesised that a finding of similarities in PWS and their fluent partners would provide further qualitative and quantitative support for stuttering research regarding personal experiences and the psychosocial impact of stuttering. This may in turn lead to a more comprehensive integration of the entire family in the treatment practice and even enhanced support from partners in the clinical process.