Procedia - Social and Behavioral Sciences 193 ( 2015 ) th Oxford Dysfluency Conference, ODC 2014, July, 2014, Oxford, United Kingdom

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Available online at www.sciencedirect.com ScienceDirect Procedia - Social and Behavioral Sciences 193 ( 2015 ) 202 208 10th Oxford Dysfluency Conference, ODC 2014, 17-20 July, 2014, Oxford, United Kingdom Perceptions of persons who stutter before and after attending support group meetings Terrence Murgallis*, Caitlin Vitale, & Glen M. Tellis, Ph.D. Misericordia University, 301 Lake Street, Dallas, Pennsylvania 18702, USA Abstract The authors surveyed members of a stuttering support group to assess the perceptions of persons who stutter (PWS) before and after attending support group meetings as well as factors that may be involved in sustainability of support groups for PWS. The group leadership incorporated into meetings, principles that would be most salient to helping PWS in a support group environment. The group integratedmany of the 11 key therapeutic principles proposed by Yalom (1995) for effective group counselling and group therapy. Preliminary data indicate that involvement in the support group resulted in more positive feelings about being called a PWS and being a PWS and lessened the impact that stuttering has on a member s life. Participants reported that they gained hope, confidence, self-esteem, and a positive outlook as a result of attending support group meetings. Overall, it appears that the views of the respondents were consistent with several of Yalom s principles. The members believed that their involvement in meetings led them to positively change their views about stuttering and their own acceptance of their stuttering. 2015 2015 The The Authors. Authors. Published Published by by Elsevier Elsevier Ltd. Ltd. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/). Peer-review under responsibility of the Scientific Committee of ODC 2014. Peer-review under responsibility of the Scientific Committee of ODC 2014. Keywords:Stuttering; Support Group; Self-help; Yalom * Corresponding author. Terrence Murgallis; Tel.: 001-570-826-6960; fax: +0-000-000-0000. E-mail address: murgallt@misericordia.edu 1877-0428 2015 The Authors. Published by Elsevier Ltd. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/). Peer-review under responsibility of the Scientific Committee of ODC 2014. doi:10.1016/j.sbspro.2015.03.260

Terrence Murgallis et al. / Procedia - Social and Behavioral Sciences 193 ( 2015 ) 202 208 203 1. Introduction Attending support group meetings for many persons who stutter (PWS) is very important because these groups address the affective and cognitive components of stuttering that may not be part of traditional therapy approaches (Bradberry, 1997; Cooper, 1987; Ramig, 1993). Many researchers have indicated that PWS are very satisfied with their experiences with support groups (Krauss-Lehrman & Reeves, 1989; Ramig, 1993; Yaruss et al., 2002). For example, Krauss-Lehrman and Reeves (1989) surveyed National Stuttering Association (NSA) members to find out the benefits of attending support group meetings. Respondents believed that support groups were beneficial because participants could share thoughts, feelings, and experiences in a non-threatening environment. Ramig (1993) found that attendance at support group meetings improved PWS overall self-concept, comfort in their personal lives, and competence in their work environment. Yaruss, Quesal, and Murphy (2002) surveyed NSA members and found that improvements in self-image and acceptance of their fluency disorder were the result of participation in support groups. The literature indicates that there are numerous benefits of attending stuttering support group meetings; however, in fluency research, no known models have been specifically applied or used to run stuttering support groups. One model that has been successfully applied to group therapy in many fields including aural rehabilitation (Erdman, 2009), psychotherapy (Garcia- Cabeza, Ducaju, Chapela, & Gonzalez de Chavez, 2011), and criminal rehabilitation (Morgan, Winterowd, & Fuqua, 1999) is Yalom s (1995) 11 key therapeutic principles for effective group counselling and group therapy. These 11 principles include (1) instillation of hope, (2) universality, (3) imparting information, (4) altruism, (5) the corrective recapitulation of the primary family group, (6) development of socialization techniques, (7) imitative behaviour, (8) interpersonal learning, (9) group cohesiveness, (10) catharsis, and (11) existential factors. Yalom (1995) elaborated that instillation of hope means that participants gain hope through their interactions with others going through the same condition. Universality implies that the life effects of the disorder (e.g., stuttering) are shared by a majority with that disorder. Imparting information is the sharing of factual information relevant to the disorder (e.g., stuttering)for those who attend group meetings. Altruism occurs when individuals share their strengths with others which could help boost selfesteem and confidence. The corrective recapitulation of the primary family group occurs because the support group and its members become a pseudofamily where individuals can discuss personal matters and cope with familial issues. The interactions among support group members allow the development of socialization techniques such as practicing introductions, developing topics for discussion, and participating in turn-taking activities. Imitative behaviour occurs when group members have the ability to imitate target behaviours. For example, in a stuttering support group, a member could request that another member model a stuttering technique and that person can imitate the model. Interpersonal learning occurs when group members learn about themselves through hearing how others deal and cope with a disorder. Group cohesiveness occurs when a group and its members share a common bond strengthened by their interactions. Catharsis occurs when the sharing of feelings and experiences with the group helps to relieve pain, guilt, or stress. Existential factors are addressed by viewing the successes and struggles of others which help members identify and deal with the realities of their own life situations. When the Misericordia University Stuttering Support Group was established, it was decided that several of the 11 key therapeutic principles for effective group counselling and group therapy proposed by Yalom (1995) would be incorporated.these principles were selected through careful planning by the leadership. For example, universality was addressed by providing an environment where individuals who stutter could meet and discuss their struggles. Imparting information was introduced to the group by having stuttering literature and resources accessible to members at every meeting. Altruism, catharsis, the instillation of hope, and group

204 Terrence Murgallis et al. / Procedia - Social and Behavioral Sciences 193 ( 2015 ) 202 208 cohesiveness were integrated through facilitation of group discussion by the leadership. The aim of this study was to explore the success, sustainability, and longevity of the group using a survey to assess the opinions of members before and after attending group meetings. 2. Method Members of the Misericordia University Stuttering Support Group a Chapter of the National StutteringAssociation (NSA) were surveyed. A Chapter is the term used by the NSA for an individual local support group. Members ranged in age from 10-65 years. The survey consisted of a 5-point Likert-type scale with 13 questions and two open ended questions (Appendix A). Participants were asked to indicate their responses to each question (about how they felt) before and after attending support group meetings. Participants were also asked whether their feelings changed positively or negatively as a result of attending the meetings. The membership of the group fluctuates between 20-30 PWS; however, when the survey was administered, the group had a low turn-out for the meeting and only 9 surveys were administered. 3. Results The results indicate that most of the PWS who responded to the survey mentioned that they gained hope and confidence from their interactions with others who stuttered in the group. The principle of universality was addressed because the respondents believed that by bringing together people struggling with the same communicative disorder and those affected by stuttering (i.e., family members, speech-language pathologists, etc.) they were united in addressing the universal aspects of the life disruptions caused by stuttering. The respondents particularly appreciated the area of imparting information because group members and their families were provided with stuttering resources including brochures, links to websites, and informative YouTube videos. Members reported that they were able to share their strengths and help others in the group (altruism) and this boosted their self-esteem and self-confidence. The respondents also mentioned that by sharing feelings and experiences with the group, they relieved pain, guilt, and stress associated with stuttering (catharsis). Analysis of the data indicated that because each member in the group was asked to disclose a positive and/or negative experience related to both speech and non-speech events that occurred in their lives, they believed that catharsis and group cohesiveness was promoted. Most of the respondents indicated that before attending meetings, they felt negatively or very negatively about being called a PWS (n=5) and being a PWS (n=7). Most of the respondents indicated that after attending the meetings, they felt somewhat positive, very positive, or neutral about being labelled a PWS. When asked how much stuttering affects/changes their moods, respondents indicated that before attending support group meetings, it affected/changed their mood a lot of the time (n=5) or some of the time (n=4). After attending meetings, respondents indicated not at all (n=1), a little (n=4), some (n=3), or a lot (n=1). Through group cohesiveness, members stated that they shared a common bond beyond their overt stuttering. Group cohesiveness was one of the most important factors mentioned by the respondents. Members reported that before attending support group meetings, they believed that they were the only ones who stuttered and that they were the only people who experienced the negative aspects of stuttering. Members reported that being able to share personal information about stuttering reduced or eliminated the pressures that they experienced throughout their everyday social interactions. Respondents mentioned that stuttering linked them together and provided them with a different perspective on life. Respondentsindicated that before

Terrence Murgallis et al. / Procedia - Social and Behavioral Sciences 193 ( 2015 ) 202 208 205 attending meetings, stuttering dominated their thoughts all the time (n=3), a lot of the time all the time (n=3), some of the time (n=2), or not at all (n=2). After attending meetings, respondents reported that they thought about stuttering a lot (n=2), some (n=4), a little (n=2), or not at all (n=1). The development of socialization techniques occurs not only through observation of others but also through practice. The respondents believed that the support group environment facilitated the development of these techniques through a positive and accepting environment. Members learned how to socialize by socializing. The respondents appreciated how the leaders of the group facilitated discussion among members and guided the topics. The respondents stated that while fluency techniques and skills were not directly addressed or required for use during meetings, they were happy to have the opportunity to practice their techniques in a judgment free environment. When asked how they felt about their ability to communicate with other people, respondents indicated that before attending meetings they felt somewhat negative (n=3), neutral (n=4), or somewhat positive (n=2). After attending meetings, respondents mentioned that they felt somewhat negative (n=2), neutral (n=1), somewhat positive (n=4) or very positive (n=2). Before attending support group meetings, respondents stated that stuttering got in the way of being able to talk to family members a little (n=2), some of the time (n=4), or a lot of the time (n=3). After attending meetings, respondents indicated that stuttering got in the way some (n=3), a little (n=4), or not at all (n=2). Respondents also valued that other group members were willing to provide an imitative model (behaviour) of the fluency techniques or stuttering modification procedures. The respondents indicated that interpersonal learning played a significant role in the support environment. Through participation in the support group meetings, PWS mentioned that they obtained a better understanding of other PWS, and in turn, a better understanding of themselves. Before attending support group meetings, most of the respondents indicated that stuttering affected their career decisions (n=6), interfered with their self-confidence (n=9), caused them to avoid speaking to people in positions of authority (n=7), and caused them to avoid speaking in public situations (n=9). After attending meetings, most of the respondents indicated that stuttering had only a minimal impact on these items. Our results indicate that the members appreciated the strong leadership of the group. Members believed that a stable meeting time, date, and location coupled with an accepting environment was also important for sustainability. Other factors that contributed to sustainability included sponsoring members to attend national stuttering conferences. Members attend the conferences and return to the group to discuss their experiences. Members believed that advertising, media outreach, and a website that provides information about the support group and its activities has contributed to the success of the group. 4. Discussion Overall, it appears that the views of the respondents were consistent with several of Yalom s (1995) principles. The members believed that their involvement in meetings led them to positively change their views about stuttering and their own acceptance of their stuttering. An added bonus was that members believed that the group has sustained over time with regular attendance not only because of our incorporation of Yalom s principles but also because of social networking opportunities provided to members outside the support group meetings. For example, some of the activities that the group hosts includes social outings and dinners, holiday parties, as well as picnics. The group also sponsors a 5K run and other activities. The results indicate that by expanding the activities of the support group to naturalistic environments with typically fluent speakers present, members have increased their social networking abilities. These initial results demonstrate that there are numerous benefits of attending support

206 Terrence Murgallis et al. / Procedia - Social and Behavioral Sciences 193 ( 2015 ) 202 208 group meetings for PWS. Respondents indicated that by attending meetings and discussing their stuttering, they were able to change their perceptions about their own stuttering and were more likely to attend additional meetings to share their experiences with others who stutter. In the future, we intend to administer more surveys to all our group members and also members of other groups nationwide to see if any trends are apparent for groups that incorporate Yalom s (1995) principles and groups that do not use these principles. We will expand the items in the current survey by including questions that specifically ask about whether each of the 11 principles were successfully integrated into group meetings. Acknowledgements The first author received funding from Misericordia University s Student Research Grants program. References Bradberry, A. (1997). The role of support groups and stuttering therapy. Seminars in Speech and Language, 18, 391-399. Cooper, E. B. (1987). The chronic preservative stuttering syndrome: Incurable stuttering. Journal of Fluency Disorders, 12, 381-388. Erdman, S.A. (2009). Therapeutic factors in group counseling: Implications for audiologic rehabilitation. Perspectives on Aural Rehabilitation and Its Instrumentation, 16(1), 15-28. García-Cabeza, I., Ducajú, M., Chapela, E., & González de Chávez, M. (2011). Therapeutic factors in patient groups with psychosis. Group Analysis, 44(4), 421-438. Krauss-Lehrman, T., & Reeves, L. (1989). Attitudes toward speech-language pathology and support groups: Results of a survey of members of the National Stuttering Project. Texas Journal of Audiology and Speech Pathology, XV(I), 22-25. Morgan, R. D., Winterowd, C. L., Fuqua, D. R. (1999). The efficacy of an integrated theoretical approach to group psychotherapy for male inmates. Journal of Contemporary Psychotherapy, 29(3), 203-222. Ramig, P. (1993). The impact of self-help groups on PWS: A call for research. Journal of Fluency Disorders, 18, 351-361. Yalom, I. D. (1995). Theory and practice of group psychotherapy. (4 th ed.). New York: Basic books. Yaruss, J. S., Quesal, R. W., & Murphy, B. (2002). National Stuttering Association members opinions about stuttering. Journal of Fluency Disorders, 27, 227-242. Yaruss, J. S., Quesal, R. W., Reeves, L., Molt, L. F., Kluetz, B., Caruso, A. J., McClure, J. A., & Lewis, F. (2002). Speech treatment and support group experiences of people who participate in the National Stuttering Association. Journal of Fluency Disorders, 27(2), 115-134.

Terrence Murgallis et al. / Procedia - Social and Behavioral Sciences 193 ( 2015 ) 202 208 207 APPENDIX A Support Group Survey Please circle the corresponding answer unless otherwise instructed. Age Gender: Male Female Have you had speech therapy before? YES NO If so, for how long? Are you currently attending speech therapy? YES NO How long have you been a member of the support group? Use this scale for the following questions Very Negative Somewhat Negative Neutral Somewhat Positive Very Positive 1 2 3 4 5 1. How do you feel about being a person who stutters? 2. How do you feel about being called a person who stutters? 3. How do you feel about your ability to communicate with other people? 4. How does stuttering affect your life? 5. How does being recognized as a person who stutters affect your life?

208 Terrence Murgallis et al. / Procedia - Social and Behavioral Sciences 193 ( 2015 ) 202 208 Use this scale for the following questions: Not at all A little Some A lot All the time 1 2 3 4 5 1. How much does your stuttering get in the way of you being able to talk to family members? 2. How much has stuttering affected your career decisions? N/A N/A 3. How much do you use what you have learned in speech therapy? N/A N/A 4. How much does stuttering affect/change your mood? 5. On a normal day, how much do you think about your stuttering? 6. How much does stuttering interfere with your self-confidence? 7. Do you avoid talking to people in positions of authority? (e.g., teacher, manager, coach etc.) 8. Do you avoid speaking in public situations? (e.g., asking for directions, speaking in class etc.) Before attending the support group, how did you feel about your stuttering? (Be specific) After attending the support group, have your feelings about your stuttering changed? If so, how have they changed? (Be specific)