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Academic year 2015-‐2016
“Wait, Let Me Finish!” An Exploration of Experiences of Adults who Stammer in Ghana
Marianne Debrouwere
Thesis submitted in partial fulfillment of completing the degree of master in pedagogische wetenschappen, specialization orthopedagogiek
Promotor: Dr. Elisabeth De Schauwer
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Foreword This research explores the lived experiences of adults who stammer in Ghana. Interest in this phenomenon was triggered during the period of completing an internship in Ghana, through frequently observing persons with a stammer (PWS) in public places, at university or in the media. Furthermore, these contexts and lack of observable reactions gave the impression of PWS being accepted and included in local society. The frequency prompted to assume a high prevalence of PWS in Ghana, an assumption shared by many people I met in Ghana. The research is shaped by the aspiration for it to be meaningful to the people contributing to it and to the context where it is conducted. During an initial search for information, contact was made with Elias Preku, the founder of Ghana Stammering Association (GSA) and Nana Akua Owusu, the guiding speech therapist. They clearly pronounced the need for research and raising awareness on stammering in Ghana. Stammering will be used in this study as it is the most commonly used term in Ghana, as in Ghana Stammering association, instead of ‘stuttering’, which is the term accepted in published research. Stammering will be used in general, covering different types of the phenomenon such as repeating syllable and words or blocking of sounds. Further stammering will capture both overt (speech dysfluency) and covert (feelings, coping attitudes) experiences of stammering. Therefore, ‘speech dysfluency’ (Guitar, 1985) will be used only for the observable feature of stammering like repeating or blocking speech. ‘Managing’ of stammering instead of ‘recovery’ will be used as presented in Plexico et al. (2004). Following their view, managing is an on-‐going process where strategies are applied to maintain higher speech fluency rather than complete eradication of stammering. Therefore, the goal of successfully managing stammering is not complete fluency but for the stammer not to control participation or life choices limited by fear related to stammering. With guidance of the promoter of this research and closely working together with GSA and Nana Akua Owusu, a qualitative research was set up and adapted to the context. Experiences related to stammering are gathered in the context of education, family, social and professional life. The literature and revealed themes discussed in this paper aim to support the participants of this study, other PWS and their environment. The study broadens the understanding of stammering and inspires or demonstrates possibilities with experiences of support or managing the stammer. The study additionally aspires to initiate literature about stammering composed in the context of Ghana to stimulate further research such as establishing the prevalence of PWS and inform policy makers of the need for support for PWS.
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Acknowledgements This work can only be completed with thanking every person who made it possible. First I want to thank the participants greatly for their given trust, openness in sharing their story, unconditional time and effort invested in this project. I hope in return this work can be of meaning to them and encourage and inspire many others. It has for sure already taught me a lot. I want to thank Elias Apreko, founder of Ghana Stammering Association, and Nana Akua Owusu, a speech therapist, whose devotion and motivation to support PWS in Ghana is hope giving, for connecting me to these interesting people and guiding me through this unknown field. Without them this research would not have been viable. I want to thank my promoter, Dr. Elisabeth De Schauwer, for her flexibility, trust and patience allowing me to be myself. Her insight and constructive feedback enriched this work and kept me from getting lost. I could not have done this with any other promoter. Unique thanks to my mother An Notebaert for the best learning opportunity by observing and experiencing the endless support of the natural ‘orthopedagoog’ I want to try to become. Furthermore, I am thankful for her reading and correcting my work. I am grateful for my sister, partner and her daughter for giving me a home when I am in Belgium. I have exceptional appreciation for my friends from university and ‘Steiners’ for the deepest friendship and their irreplaceable mental and practical support while making this work. Together we learn so much more: Fien, Karen, Flo, Hannah, Isaur, Matthijs, Diana and Ismail. Special thanks to family and friends in Ghana for the support, hosting and relaxing together: Alice, Natalie, Anke, Kirsten, Flo, Kate and Mercy. Thanks to my salsa friends for dancing together, which kept me sane and healthy. And incomparable “thank you” to Patrick for being my partner in everything, in particular for the numerous discussions about stammering, reading and correcting my work. I am infinitively grateful for giving me the confidence and the continuous mental and practical support with patience to complete.
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Abstract All over the world, there are persons who stammer (PWS). The phenomenon has been researched for decades with different approaches and from various perspectives. However, this is not the case in Ghana or in the wider context of West Africa. This study explored the lived experiences of adults who stammer in Ghana in order to broaden the understanding of the phenomenon, reveal the current level of awareness, identify what is supportive and inform policy to incorporate the needs of PWS. In total, seventeen qualitative interviews were conducted with PWS (3 females, 14 males) in Accra and Kumasi, exploring their experiences in educational and professional life besides family and social contexts. After transcribing the interviews, a systematic thematic analysis was applied to it. The major themes and subthemes reveal both straining and supportive reactions of people surrounding PWS, experienced emotions, restricted participations and intrinsic supportive factors. The personal stories of participants demonstrate the complex nature of the stammering experience. Straining reactions can lead to difficult emotions and restricted participations. This process can be intensified or countered by personality. It can further be countered by supportive reactions, developing talents and actions undertaken to deal with stammering. The findings also show different existing misconceptions with PWS and the people surrounding them. There is lack of awareness of the impact of reactions on the PWS, the presence of endured emotions, restricted participation and the fluctuating nature of stammering. The study shows that support can come from different directions such as family, friends, teachers and religion. It can also come from within the PWS through personality, talents and actions undertaken actions to manage the stammer. However, these potential supportive elements still appear to be limited, in this context, when compared to the described challenges. This implies there is the need to break the silence surrounding stammering. PWS in Ghana can make a change by coming together, support each other and raise awareness on stammering for others who stammer as well as people in their environment. Further, there is the need for available and affordable professional support and increased awareness on stammering for various professionals such as teachers, social workers and medical doctors amongst others. Therefore, barriers experienced by PWS can be tackled to increase their chances in society to reach and offer their full potential. Keywords: Stammering, Ghana, qualitative research, lived experiences, thematic analysis PWS
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Table of Contents
Foreword .................................................................................................................................................. i Acknowledgements ........................................................................................................................... ii Abstract .................................................................................................................................................. iii Table of Contents ............................................................................................................................... iv 1. Introduction ..................................................................................................................................... 1 1.1 Stammering in general ........................................................................................................................ 1 1.2 Experiences of Persons Who Stammer (PWS) ......................................................................... 2
1.2.1 Psychosocial experiences ............................................................................................................ 3 1.2.1.1 Anxiety ...................................................................................................................................................... 3 1.2.1.2 Avoiding ................................................................................................................................................... 4 1.2.1.3 Self esteem .............................................................................................................................................. 5
1.2.2 Barriers at School ........................................................................................................................... 6 1.2.2.1 Performance ........................................................................................................................................... 6 1.2.2.2 Teasing and Bullying ........................................................................................................................... 7
1.2.3 Barriers at Work ............................................................................................................................. 7 1.2.3.1 Career choice .......................................................................................................................................... 8 1.2.3.2 Promotion ................................................................................................................................................ 9
1.2.4 Stammering and social relationships ...................................................................................... 9 1.2.4.1 Social life .................................................................................................................................................. 9 1.2.4.2 Stigma ..................................................................................................................................................... 10 1.2.4.3 Support social network .................................................................................................................. 11
1.2.5 Treatment -‐ Management ......................................................................................................... 12 1.2.5.1 Therapy ................................................................................................................................................. 12 1.2.5.2 Self-‐ Management .............................................................................................................................. 13
2. Methodology .................................................................................................................................. 15 2.1 Problem statement and research questions ............................................................................ 15 2.2 Research method and procedure ................................................................................................. 16
2.2.1 Sampling size and strategy ........................................................................................................ 16 2.2.3 Qualitative interviewing ............................................................................................................ 18 2.2.4 Thematic analysis ......................................................................................................................... 20 2.2.5 Active role of the qualitative researcher ............................................................................. 23
2.3 Validity -‐ Trustworthiness .............................................................................................................. 24 2.3.1 Credibility ........................................................................................................................................ 25 2.3.2 Transferability ............................................................................................................................... 26 2.3.3 Dependability ................................................................................................................................ 26 2.3.4 Confirmability ................................................................................................................................ 27
3. Results .............................................................................................................................................. 28 3.1 Straining and supportive reactions to speech challenges ................................................. 28
3.1.1 Stammering explained ................................................................................................................ 28 3.1.2 Unfavourable reactions: I stammer -‐ how do you react? ............................................... 29 3.1.3 Support ............................................................................................................................................ 32
3.2 Stammering contains more than speech challenges ............................................................ 34 3.2.1 Feelings ............................................................................................................................................ 34 3.2.2 Restricted participation ............................................................................................................. 36
3.3 Who am I and what can I do? ......................................................................................................... 38 3.3.1 Much more besides stammering! .......................................................................................... 38
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3.3.2 How to deal with stammering? ............................................................................................... 39 3.3.3 Positive influence: not all bad .................................................................................................. 42
4. Discussion ....................................................................................................................................... 43 4.1 Discussion of results .......................................................................................................................... 43 4.2 Implications of the results ............................................................................................................... 49 4.3 Limitations and strengths of this study and suggestions for further research ........ 51
5. Conclusion ...................................................................................................................................... 55 Bibliography ....................................................................................................................................... 57 Nederlandse samenvatting ........................................................................................................... 64 Appendix .............................................................................................................................................. 71 Annex 1: Call to participate in qualitative research around stammering .......................... 72 Annex 2: Informed consent .................................................................................................................... 73 Annex 3: Questions for semi-‐structured interviews ................................................................... 74
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1. Introduction
1.1 Stammering in general Stammering is a speech challenge where a person experiences involuntary repetitions, prolongation of syllables or blocking of sounds (Bloodstein, 1995; Bloodstein & Ratner, 2008; Guitar, 2013). There are several subtypes of stammering (Yairi, 2007). How the stammer expresses itself can be different from one person to another. However there should be no confusion with some dysfluency that can occur in every person’s speech (Guitar, 2013). There are two main types of stammering based on the onset of the stammer. The first is the common developmental stammering that occurs from two years and before six years old (Bloodstein, 1995; Bloodstein & Ratner, 2008; Mansson, 2000; Guitar, 2013). It is more common amongst males than females (Bloodstein, 1995; Guitar, 2013) and elevated levels of heredity are observed (Dworzynski, et al, 2007; Rautakoski et al, 2012). For children spontaneous recovery is common (Yairi & Ambrose, 1999; Guitar, 2013). For 75 percent of the adolescents who stammer, the symptoms will stay away (Yairi & Ambrose, 1999; Guitar, 2013). This will occur more often with females who have a stammer (Andrews & Craig, 1988). In contrast, recovery in adulthood is expected to be rare (Anderson & Felsenfeld, 2003), resulting in an estimated prevalence rate of 1 percent (Guitar, 2013) varying over age (Craig et al., 2002). The second, however rare, type is acquired stammering when the onset takes place in adulthood. The stammer occurs because of secondary causes like medication, brain trauma or stroke (Guitar, 2013; Ward, 2006). The cause of stammering is not yet fully understood (Packman, 2012). However, brain research shows evidence for a necessary neuro-‐physiological factor before a stammer can occur (Chang et al., 2011; Cykowski et al, 2010; Guitar, 2013). Though, the neurologic factor alone is not enough to cause stammering (Packman, 2012). Other research indicates that for people who stammer, there could be a complication of the neuronal transmission in the white matter of the brain. Furthermore research located the source of stammering in the genes (Lan et al., 2009; Petrin et al., 2010). Most recent research supports that a mutation in a gene, situates persistent stammering under neurological disorders (Raza et al., 2015). Causal theories outline the complexity of stammering (Bloodstein& Bernstein Ratner, 2008). They described stammering as a multifactorial process where the interaction of several factors will define if, how and when the stammer will occur. These factors are neurophysiological, psychological, social and linguistic (Guitar, 2013). The causal theories differ in whether they explain the cause of stammering in
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general or the cause when a moment of repeating syllables or word blocks occurs. Some of the theories will cover both (Bloodstein & Bernstein Ratner, 2008). For example the Demands and Capacities model (Starkweather, &Gottwal, 2000), the Dynamic Multifactorial model (Smith & Kelly, 1997 cited in Packman, 2012) and the Packman and Attanasio 3-‐factor causal model of moments of stuttering (P&A model) (Packman, 2012). The P&A model describes three causal factors. First, a deficit in how spoken language is processed neurologically. Second, features of spoken language and third modulating (unique intrinsic) factors as in psychological arousal and availability of cognitive resources both influenced by for example individual experiences, anxiety, fear of negative evaluation and stuttering severity further influenced by individual differences in emotional reactivity and resilience. The impact of having a stammer can go far beyond the observable speech disfluencies (Mulcahy et al, 2008). It goes together with a variety of non-‐observable psychological and social consequences (Iverach et al., 2009; Tran et al., 2011), affecting people’s emotional and mental health negatively (Bloodstein et al., 2008; Menzies et al., 1999). Therefor, to estimate the severity of the impact, it can’t be directly related to the frequency of the stammer (Erickson & Block, 2013). Other consequences can have a behavioral nature like facial movements, tremors and eye blinks (Guitar, 2013) or larger movements like tapping or stamping of feet. Having a stammer can affect many aspects of a person’s life (Bloodstein et al., 2008). In a way that literature describes the impact of stammering as disabling (Yaruss & Quesal, 2004).
1.2 Experiences of Persons Who Stammer (PWS) Experiences of PWS are collected through multiple qualitative researches. The main experiences related to stammering are the undesirable aspects where only rarely positive experiences are noted. For example suffering, shame, and stigma are commonly shared experiences by the people who stammer (Crichton-‐Smith, 2002; Corcoran & Stewart, 1998; Plexico et al., 2004), which can lead to frustration and anger (Beilbya et al., 2012; Plexico et al., 2009). For the participants in a study by Corcoran and Stewart (1998), the stammer is experienced as beyond their control, resulting in feelings of helplessness. Some PWS describe strong feelings like hopelessness and unhappiness to feelings of low self worth and depression (Plexico et al., 2009). The core feature of stammering is dysfluency in speaking. However, most experiences shared by participants in qualitative research are the experiences beyond the overt symptoms, the not observable feelings and emotions within (Plexico et al., 2004; Yaruss, 2010; Kathard, 2001). This could be described as the
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non-‐visible part of the iceberg analogy of Sheehan (1970) including interpersonal and psychosocial experiences related to having a stammer (Beilbya et al., 2012). For example, participants in Plexico et al. (2004) describe experiencing high levels of stress in anticipation of stammering at the moment the stammer occurs and afterwards. As a consequence PWS could be at greater risk of being fatigued (Craig et al, 2009; Plexico et al, 2009). In line with this, the severity of speech dysfluency is reported to vary depending on the context, who they are talking to, how they feel physically and emotionally and the stress experienced at the moment of talking (Klompas & Ross, 2004). Even when the dysfluency has improved, these covert feelings can continue (St. Louis, 2001 cited in Flynna & St. Louis, 2011).
1.2.1 Psychosocial experiences The following commonly shared psychosocial experiences by PWS will be described more at length: anxiety, avoiding and self-‐esteem.
1.2.1.1 Anxiety Research from 25 years ago until more recent research, indicates that anxiety plays a role in stammering (Bloodstein, 1995; Miller & Watson, 1992). It is seen as one of the correlating factors with stammering (Menzies et al, 1999) and similar across cultures (Tellis & Tellis, 2003). Some PWS develop social anxiety (Craig et al., 2011; Messenger et al., 2004) until half of the adults who stammer could receive a diagnosis of social phobia (Iverach et al., 2009; Kraaimaat et al., 2002; Stein et al., 1996). These statements become more nuanced when explained that adults who stammer are not more anxious in general than adults who don’t stammer. However, the first experience higher levels of anxiety limited to speaking situations and also as a reaction on multiple negative communication experiences they have encountered (Daniels et al., 2012; Miller & Watson, 1992). Adolescents who stammer consider themselves to be less competent and experience more anxiety in communicating, more particular in group discussions and interpersonal conversations (Blood et al., 2001). The majority of participants in the research of Erickson and Block (2013) confirmed also experiencing anxiety during speaking in public or in meetings and almost half of them while talking in groups and interpersonal conversations. The specific difficulty of these self-‐perceptions arises in combination with the typical challenges of puberty, being the physical, social and emotional development together with peer pressure to fit in and be accepted (Heaven, 2001 cited in O’Brian et al., 2011).
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In research of Bajaj et al. (2014) only limited part of the participants who stammer experience fear and anxiety in communication situations. In the research of Beilbya et al. (2012) it are the participants who report a pronounced impact of stammering on their life that also experience social anxiety. Fear is experienced in anticipation of the reaction of the listener (Plexico et al., 2009). Possibly instigated by previous negative reactions of others when stammering occurred (Beilbya et al., 2012) that resulted in feelings of embarrassment or shame (Corcoran & Stewart, 1998; Daniels et al., 2006; Crichton-‐Smith, 2002) and more in particular because of negative social experiences throughout the years in school (O’Brian, 2011). Experiences described by the participants in the research of Plexico et al. (2009) shed more light on specific factors that play a role in the social fear or anxiety. These can be divided into features related to the listeners and features of the situational context. Fear and anxiety is more experienced with unknown listeners than with friends and family, because it is more difficult to foresee their reaction on stammering. The reaction could be impatience or forming a particular first impression. The degree of fear depends on how much is cared about what the other person thinks. The participants in this study assumed listeners would perceive them as unsuccessful communicators or less intelligent. Features like appearance and age of the listener influence the expectation of how the listener will react on the stammer. Most participants in the research of Crichton-‐Smith (2002) confirm the above by describing to feel more comfortable stammering at home, with a friend and their therapist rather than at work. Contexts that are more formal for example at work, in school or in an interview can elevate the level of anxiety. Also the treatment setting is been described as influencing the speech. Social situations are perceived as more demanding because of more listeners at the same time plus the higher risk of one person being impatient and take over the speaking role when the stammer occurs. Time pressure to speak or answer can be a trigger for many participants to experience stress or even panic (Plexico et al., 2009). Another situation that is often perceived as stressful and fearful is speaking on the phone because both parties can’t see one another and be aware the person is stammering. However, the level of anxiety experienced with each of the above factors mentioned differs from person to person depending on everyone’s unique history (Plexico et al., 2009).
1.2.1.2 Avoiding The negative experiences and the social anxiety, described earlier, causes PWS to attempt to conceal their stammer through several ways of avoidance (Crichton-‐
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Smith, 2002; Plexico et al., 2009; Beilbya et al., 2012). This is to give the impression of fluency (Plexico, et al., 2009) or to prevent the listener from realizing that the person has a stammer (Crichton-‐Smith, 2002). The avoidance response is described as natural for any person who wants to prevent to be rejected or stereotyped by the listener who notices the stammer (Bloodstein, 1995; Sheehan, 1970 cited in Blood et al., 2003) or to protect the self and even the listener from uncomfortable situations or shame (Plexico et al., 2009). Participants in Plexico et al. (2009) report that avoidance offers moments of relief, allows distancing from the difficulties related to stammering and gain control over the involuntary stammer. PWS can avoid words, people or social situations where it’s likely that they will stammer (Corcoran & Stewart, 1998; Beilbya et al., 2012; Guitar, 1985). In Plexico et al. (2009), participants describe word substitution or not participate in conversations as most frequently used to avoid the stammer from occurring and to contain the fluent speech what makes interacting easier (Plexico et al., 2009). It’s worth noticing the difference in reporting avoiding during adolescence by adolescents at the moment of reporting or adults who stammer in retrospective studies. The majority of adolescents report barely avoiding (Blood et al., 2003) while adults looking back, describe avoiding as a major theme of coping strategies (Daniels et al., 2012). Participants in Plexico et al. (2009) describe consequences of avoiding, like word-‐substitution, leading to miscommunication or compromising the clarity of the message. This was still prefered over revealing the stammer. A next step could be restricting speaking options leading towards the risk of isolation and engaging in solitary activitieswhich could lead to social withdrawal (Blood et al., 2001). At a certain point these strategies can be present in every aspect of life, demanding excessive cognitive and emotional energy. Also after years, the effectiveness of these methods reduces and are not perceived as a solution anymore with both causing diminished well-‐being or quality of life (Plexico et al., 2009). At this point being open about having a stammer can lift the burden of hiding (Breitenfeldt & Lorenz, 1999 cited in Klompas & Ross, 2004). In addition Collins and Blood (1990) discovered that when people who have a stammer recognize this, they are perceived more positive by others than those who don’t acknowledge their stammer (cited in Klein & Hood, 2004).
1.2.1.3 Self esteem In different qualitative research, participants report that stammering influences their self-‐esteem negatively (Klompas & Ross, 2004). Several described negative
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stereotypes of themselves (Craig et al., 2003; MacKinnon et al., 2007). For example, stammering being described as a shameful component of the self-‐concept (Plexico et al., 2009). Research confirms stammering severity having an adverse effect on self-‐esteem of adolescents who stammer. More in particular are negative communication attitudes (Adriaensens et al., 2015). Even though it’s not possible to assign cause to correlation, Craig (2009) emphasizes that people with a severe stammer almost have the double risk of diminished emotional functioning in contrast with people who have a milder stammer. In contradiction, adolescents who stammer repeatedly reported positive-‐esteem (Blood et al., 2003). Also school-‐aged children who have a stammer were situated within the normative range for self-‐esteem (Yovetich et al., 2000). On the other hand McCrosky et al., (1977) stated that because others have negative perceptions, people adapt their self-‐concept over time so it meets these views (cited in Klein & Hood, 2004).
1.2.2 Barriers at School In the educational context from kindergarten until university, verbal communication is required in multiple activities like reading aloud, asking and answering questions, group discussions or giving a presentation. Moreover, communication is essential in developing social skills (O’Brian, 2011).
1.2.2.1 Performance Blood et al. (2001) describe adolescent’s possessing features related to stammering, such as higher anxiety in several communicational settings, correlates with overall poorer academic performance. More recent research reported a significant inverse association between having a more severe stammer and educational accomplishments without claiming any causal relationship (O’Brian et al., 2011). Qualitative research confirms these findings where PWS recall to struggle with concentrating and learning because of losing energy on thinking about stammering and how to manage it (Daniels et al., 2012). In Klompas & Ross (2004) the majority of the participants believe that their academic performance was constrained because of their stammer due to difficulties with oral presentations, unawareness of teachers and teasing by peers. The research of Tran et al. (2011) could not confirm this reverse association of stammering on educational attainment. Additionally, the results of McAllister et al. (2012) do not show PWS to have disadvantages in education and besides this, adolescents who stammer are reported not to leave school sooner compared those who don’t stammer (McAllister et al., 2012). Furthermore, McAllister et al. (2012) sums up multiple different factors besides stammering that could define the level of education for example socio-‐economic factors and level of education of the parents.
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1.2.2.2 Teasing and Bullying Being teased or bullied in primary school is something that can happen more to children who stammer than to their peers (Langevin et al., 1998; Davis et al., 2002). They are also perceived more negatively (Langevin et al., 2009; Davis et al., 2002; Ezrati-‐Vinacour et al., 2001), rejected and challenged in creating friendships with schoolmates (Davis et al., 2002). Also for adolescents who stammer it has been confirmed that the risk is higher to be teased or bullied rather than their non stammering peers (Blood & Blood, 2004; Langevin, 2009; Erickson & Block, 2013; McAllister et al., 2012). Whether it takes place in primary or secondary, several researches have described if teasing or bullying happens, together with other challenges in social interaction, it can influence every day school-‐life of school-‐age children or adolescents who stammer (Blood & Blood, 2004; Davis et al., 2002; Langevin et al., 1998; Murphy & Quesal, 2002; Murphy et al., 2007a). This could encourage avoiding to participating (Daniels et al., 2012; Corcoran & Stewart, 1998; Crichton-‐Smith, 2002; Erickson & Block, 2013). For example avoiding to ask and answer questions or skip classes (Klompas & Ross, 2004; O’Brian, 2011; Daniels et al., 2012), which may hinder academic achievement (Klompas & Ross, 2004; Crichton-‐Smith, 2002; Daniels et al., 2012; Erickson & Block, 2013). This impact may possibly continue once entering adulthood (McAllister et al., 2013; Daniels et al., 2012). Acceptance and support from other peers or parents can counter the impact of teasing and bullying considerably (Hearne et al., 2008: Erickson & Block, 2013), like having someone to ‘stick up for’ you (Blood et al., 2003). Erickson & Block (2013) confirmed the positive evolution of the majority of children in Australia informing their parents about teasing and bullying. However, the children who stammer would still have preferred more to be done about it.
1.2.3 Barriers at Work Professional occupation can define living standards and fulfillment with life. Studies confirm the economic advantages and the opportunity to build up support in psychosocial wellbeing through obtaining a job. This is through the ability to be independent, realize goals and receive recognition in ones work (Lent & Brown, 2006). Several qualitative researches, have described the impact of stammering on employment (Blumgart et al., 2010a, 2010b; Peters & Starkweather, 1989; Crichton-‐Smith, 2002; Bricker-‐Katza et al., 2013; Klein & Hood, 2004; Klompas & Ross, 2004). Some describe the negative impact on employability and the ability to demonstrate fully their competences (Klein & Hood, 2004; Bricker-‐Katza et al., 2013; Klompas &
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Ross, 2004). More in particular when a person has a more severe stammer or experiences a day the stammer is more prominent, the impact is perceived greater on the chance to be hired, job performance or well being at work (Bricker-‐Katza et al., 2013; Klein & Hood, 2004). Besides this the educational level of PWS can influence whether they perceive the stammer to create barriers at work (Klein & Hood, 2004). Fortunately only a few indicate being mocked at work (Klein & Hood, 2004). More specifically, participants in Bricker-‐Katza et al. (2013) describe the impact on communication at work. They feel the urge to be more fluent in assignments like phone calls, presentations, meetings and talking with clientele. Frustration arises for example when a spontaneous verbal response or humorous contribution is interrupted by the stammer. Other difficulties are when the person loses an opportune moment to talk or when the stammer distracts the listener. Participant’s mention that the concentration demanded to avoid stammering limits their ability to show their true skills at work. Some have actually been denied to execute a particular assignment because of their stammer. Many worry about what others may think of them because of their stammer. Undesirable perceptions are feared, like questioning their intelligence or overall competence and that stammering would be seen as unprofessional or even inappropriate. In extremis, it is feared that the stammer would be related to an intellectual disability. It is also believed and confirmed that employers perceive PWS negatively (Hurst & Cooper, 1983). All these thoughts affect the self-‐esteem and self-‐confidence of the participants who stammer. Besides this they indicate that the effort to speak fluent feels inauthentic and could bring a new focus to their speaking. Disclosure of having a stammer is experienced as challenging. Participants describe both options, for some it is helpful and can prevent some misconceptions, others fear to be open about it because of previous unfavourable experiences (Bricker-‐Katza et al., 2013).
1.2.3.1 Career choice The impact on work experiences of people who stammer can start at the initial stages when making a career choice. The choice of occupation can be of major concern (Klompas & Ross, 2004) or be influenced by the stammer because of making the choice based on their speech competency (Crichton-‐Smith, 2002). Some PWS will pursue jobs of interest, ability and suitability while others will not because of their stammer (Bricker-‐Katza et al., 2013). Restrictions are described towards the type of jobs and roles taken on at work (Klein & Hood, 2004). For example avoiding jobs that require calling or oral presentations (Hayhow et al., 2002). Potentially, this is strengthened by perceptions of others seeing PWS unfitting professions like teaching, sales or law (Gabel et al., 2004; Swartz et al., 2009), leading to some
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PWS disappointed because of the stammer limiting their professional opportunities before it even has started (Bricker-‐Katza et al., 2013) or unhappy in positions differing from their ambitions (Rice & Kroll, 1997; Klein & Hood, 2004). However, not everybody describes to be unsatisfied with their current job even if they are not trained for it (Bricker-‐Katza et al., 2013). Others mention stammering not affecting their career choice though it impacts their job performance, interactions with superiors and promotion ability (Klompas & Ross, 2004). Potentially leading to PWS pursuing lower levels of achievement because of low self-‐esteem and performance anxiety (Van Riper, 1971 cited in Klompas & Ross, 2004).
1.2.3.2 Promotion Research in Australia and Britain observed no significant difference in salaries of PWS (Tran et al., 2011; McAllister et al., 2012). However, at the age of 50 a difference in status of job such as obtaining lower socio-‐economic professions is observed for PWS (McAllister et al., 2012). Besides this, Rice and Kroll (1994) stated that, based on a survey of 282 PWS, stammering negatively influences performance evaluation and PWS can experience discrimination at work. Several qualitative researches confirm these facts by PWS describing experiences of stammering hindering promotion (Klompas & Ross, 2004; Klein & Hood, 2004; Bricker-‐Katza et al,. 2013; Crichton-‐Smith, 2002). For example, due to attitudes of bosses and managers (Bricker-‐Katza et al., 2013) or negative stereotyping (Klein & Hood, 2004) resulting in not being considered or fruitless applying for promotion (Bricker-‐Katza et al., 2013; Crichton-‐Smith, 2002). However, mind-‐sets and feelings of the PWS itself can also obstruct professional progress (Bricker-‐Katza et al., 2013; Klein & Hood, 2004). For example the fear of greater verbal demands or interviews could make participants prefer to stay in their comfort zone (Bricker-‐Katza et al., 2013).
1.2.4 Stammering and social relationships
1.2.4.1 Social life Research from 40 years back until now, describes social interactions and intimate relationships being challenging for adolescents who stammer (Blood et al, 2003) as for adults who stammer (Beilbya et al., 2012; Craig et al., 2009). However, personal testimonials describe that differently. Adolescents describe a common theme that stammering doesn’t restrict their social life (Hearne et al, 2008). The majority of students who stammer in Blood et al. (2003) indicate that, stammering doesn’t impact whether ‘people want to be friends’ or‘ ask them out on dates’. This still leaves a minority from 25% up to 50% in some cases, reporting the opposite and in addition, high levels of teasing or bullying in school. This contrast
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results from perception research where adolescents and young adults perceived their peers who stammer to be less attractive and were less likely to initiate intimate relationships with someone who stammers (Van Borsel et al., 2011). Blood et al. (2003) place the responses of the students who stammer under coping strategies, like hiding to manage the stereotyping and prejudices related to stammering. Klompas & Ross (2004) report that for most adults who stammer, it doesn’t intervene in establishing friendships even though others commonly respond unfavorable to their speech. In Daniels et al. (2012) the majority of participants recall positive experience with teachers and peers in school. In Bajaj et al. (2014) half of the participants describe how stammering does impacts interpersonal and social life. He concludes that PWS do experience some discrimination and insecurity in social participation. However, their overall quality of life (QOL) in the social context is not heavily reduced (Bajaj et al., 2014). Crichton-‐Smith (2002) adds that PWS could experiences lower severity of stammering at home or in social environments perhaps because of less limitation and more perceived support. In a research with partners of PWS, acceptance of the stammer is of great importance. Openness, honesty and understanding are commonly mentioned during the interviews. Besides this unity, shared experiences and not perceiving the stammer as a limitation are experienced as supportive. Some partners describe the urge to, sometimes, protect the partner who stammers. However, each couple individually defines what a supportive relationship is (Beilbya et al., 2012).
1.2.4.2 Stigma Stigma is defined as attributing negative features to a person or a group of people (Goffman, 1963 cited in Daniels et al., 2007). Stigma is described as a social process including labelling, connecting differences to stereotypes, separation, status loss and discrimination. (Link and Phelan, 2001 cited in Daniels et al., 2007). Perception of others on PWS is explored in several contexts like parents, peers, students, teachers, professionals and employers (Crowe & Cooper, 1977; Crowe & Walton, 1981; Dorsey & Guenther, 2000; Fowlie & Cooper, 1978; St. Louis & Lass, 1981; St. Louis et al., 2009; Yeakle & Cooper, 1986). Many of theses studies show a less positive view towards PWS (Silverman & Paynter, 1990; Klompas & Ross, 2004; Bebout & Bradford, 1992; Crowe & Walton, 1981; Ham, 1990; Kalinowski et al, 1993; Ruscello et al, 1994) as early as in kindergarten (Ezrati-‐Vinacour et al., 2001; Langevin et al., 2009). Additionally, approximately 20 percent of primary aged children will have negative attitudes of their peers that stammer (Langevin, 2009), adolescents who stammer being perceived less popular and
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rejected more often or being the victim of bullying (Davis et al., 2002; Evans et al, 2008). Teachers can have low awareness of stammering (Hearne et al., 2008) and even professors who rate the hypothetical students who stammer more negatively than the average student (Dorsey & Guenther, 2000). In qualitative research, the majority of adolescents who stammer don’t confirm that the stammer is stigmatizing (Blood et al., 2003) or socially limiting (Hearne et al., 2008). However, adolescents mention that they don’t talk about their stammer with others (Hearne et al., 2008; Blood et al., 2003) and regularly keep it a secret (Blood et al., 2003). Furthermore, several adolescents who stammer report not knowing what it is and describe misconceptions about stammering which only improve once attending treatment (Hearne et al., 2008). Experiencing stigma may depend on the severity of the stammer. Observational research report that, adolescents with a less severe stammer will fit in at school while stammering more severe it will be challenging (Erickson & Block, 2013). Putting different aspects together as the chronic nature of stammering, negative stereotyping and self-‐reported dissatisfaction in communicational interactions, it might stigmatize adolescents who stammer (Blood et al., 2003). Whereby, most PWS experience stigmatizing actions by adulthood (MacKinnon et al., 2007). The attitudes of others are similar between adolescents and adults (Flynna & St. Louis, 2011) who assume that PWS are nervous, shy, introvert, passive, having psychological problems (Craig et al., 2003; Gabel et al., 2004; Hughes et al., 2010; Langevin et al., 2009). Furthermore, that stammering reduces professional expectations (Hulit & Wirtz, 1994; Hurst & Cooper, 1983; Klein & Hood, 2004; Logan & O’Connor, 2012; Silverman & Paynter, 1990). These negative social perceptions can become self-‐perceptions for children as adults who stammer, expecting being unfavorably judged due to their stammer (Crocker, 1999 cited in Blood et al., 2003). Gilmore (1974) stated that the resulting limitations are due to the negative attitudes socially imposed and to these which become internalized by the PWS resulting in similar attitudes towards themselves (cited in Klein& Hood, 2004). This is possible from a young age, through adjusting to their dysfluency (Crichton-‐Smith, 2002).
1.2.4.3 Support social network Support can come from different directions like professional counseling, support groups, family and friends. Supportive factors can be to connect with others, exchange information and disclose stammering (Plexico et al., 2004). Further, an‘accepting listener’ can make a substantial difference (Starkweather & Givens-‐Ackerman, 1997 cited in Klompas & Ross, 2004), like the partner (Beilbya, et al., 2012). Besides this facilitation, explaining the stammer reduces misconceptions
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about stammering (Bricker-‐Katz et al., 2013). Crichton-‐Smith (2002) stated that a supportive communicative environment and less perceived restrictions could possibly make participants report a less severe stammer at home or in social environments. Opposing a home where silence surrounds the stammer, could be harmful and could make a child think the stammer is not acceptable (Hearne et al., 2008). The majority of adolescents report that they rarely or never talk about stammering to others (Blood et al., 2003). Furthermore, for them professional support may not be wanted if the stammer is not interfering with activities with the peer-‐group (Hearne et al., 2008). When the impact of stammering on a child/adolescent and its families was observed in Erickson & Block (2013), emotional concern is especially mentioned. Parent describe the substantial impact stammering has on different areas of the minors and the family’s life. Dealing with their child’s frustration or sorrow is seen challenging. However many mention making minimal sacrifices even when financial investments have been done for treatment. Some PWS themselves report that stammering has an impact on their relationship with their parents (Klompas & Ross’s, 2004). For example experiencing lack of understanding and impatience from their parents (Erickson & Block, 2013). Others describe how stammering had been painful for their parents (Klompas & Ross, 2004). Contact with siblings, is described both positive and negative as in patience and understanding besides pity and impatience (Klompas & Ross, 2004).
1.2.5 Treatment -‐ Management
1.2.5.1 Therapy In certain parts of the world multiple different therapy methods are offered at any age to PWS. Treatment at kindergarten age will vary from treatment for adolescents or adults (Packman, 2012). It is been proven difficult to know which treatment is the best way to deal with stammering for which individual (Bloodstein et al., 2008). Some research has reported the effectiveness of treatment being limited and temporary (Blomgren et al., 2005). For example it could be that if higher in academic performance a person is also more determined in attending therapy or able to manage stammering (O’Brian, 2011). Therefore, it is essential in treatment to consider each person’s individual experience with stammering and broader life experiences (Yaruss, 2010). Experiences with therapy and treatment of PWS are reported both positively and negatively. In some research, most participants describe a positive attitude towards speech therapy (Bajaj et al., 2014), the improving effect it had on their quality of life (QOL) (Klompas & Ross, 2004) and helpful during the transitional process to
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successful manage stammering (Plexico et al., 2004). Therapy is supportive in improving self-‐confidence or how they feel about themselves and learning techniques to cope with stammering or reduce it (Klompas & Ross, 2004; Plexico et al., 2004). For example by modifying negative attitudes, feelings and thoughts about stammering (Plexico et al., 2004). Furthermore, practicing speech with relatives is seen essential (Hearne et al., 2008). For example by modifying negative attitudes, feelings and thoughts about stammering (Plexico et al., 2004). Other PWS continue stammering and experiencing feelings of helplessness, hopelessness, shame, fear and avoidance (Corcoran & Stewart, 1998; Daniels et al., 2006; Plexico et al., 2005). Intuitive coping strategies can be picked up again which can cause feelings of failure and additional restriction (Crichton-‐Smith, 2002). Practicing and transferring taught coping strategies appear to be challenging and skipped because of other priorities in busy lives (Hearne et al., 2008). Adolescents prefer group therapy with peers who stammer above individual therapy due to the companionship they experience, the fact they can learn from each other and that they don’t feel alone in dealing with this challenge (Hearne et al., 2008). However, it is important to make sure adolescents are ready for treatment to prevent drop out (Hearne et al., 2008). Besides group therapy, intensive therapy is also seen as useful (Hearne et al., 2008). The moment to initiate therapy differs in age and often goes together with the personal decision wanting to do something about it. For some that can be professional ambitions (Hearne et al., 2008). Adults who stammer also perceive support groups positively (Ramig, 1993). Members mention building improved self-‐esteem and receiving support in accepting the stammer (Klein & Hood, 2004).
1.2.5.2 Self-‐ Management PWS deal with stammering based on different strategies in different contexts. These strategies can be: no change, intuitive change, taught change and highlighting, being used in combination (Crichton-‐Smith, 2002). Participants perceive intuitive strategies (e.g., forcing speech or avoiding) rather secondary or taught strategies (e.g., disclosure, fluency increasing and modification techniques) which makes them feel responsible for no improvement if the intuitive strategies are continued to be used (Crichton-‐Smith, 2002). The self-‐derived coping strategies are seen in literature and professional context as maladaptive learning. However, any coping strategy of PWS could be natural and normal for dealing with stress resulting from stammering (Manning & Dilollo, 2007 cited in Plexico et al., 2009). Some PWS fruitfully manage the challenges faced through stammering with and without formal treatment (Anderson & Felsenfeld, 2003; Finn, 1996; Plexico et al.,
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2005 in Pexico et al., 2009). In research the following factors in successful management were found: behavioral modifications like self-‐assessment, fluency and stammering modification techniques, motivation, environmental change and changes in attitude towards self and stammering (Anderson & Felsenfeld, 2003; Finn, 1996; Crichton-‐Smith, 2002). Plexico et al. (2004) completed a qualitative research on successful management of stammering resulting in a broad view on how successful management is perceived for the participants. At first the term successful management is preferred instead of ‘recovery’ based on three reasons: one, recovery, suggesting stammering is a disease (Manning & Dilollo, 2007 cited in Plexico et al., 2009); two, even though high levels of fluency are obtained, the person continues to apply cognitive and behavioral elements; three, suggesting it is not about presence or absence of stammering but the ability to successful manage the stammer. In this line, Drewery et al. (2000) state “health, in our view, has much to do with the capacity for agency and less to do with the absence of disease” (p. 256 cited in Plexico et al., 2004). The participants in Plexico et al. (2004) confirm this with the opinion that living the life they want doesn’t depend on absolute fluency but coping with the stammer in different degrees. In this way some will reach mainstream and some high fluency (Chmela et al., 1998 cited in Plexico et al., 2009). Participants who stammer describe strong motivation and determination to accomplish their goals. Self-‐therapy is a part of this, where they practice outside the therapy context by taking risks and self-‐disclosure (Anderson & Felsenfeld, 2003). Self-‐disclosure is experienced as beneficial, allowing the other person to know there is a likelihood of stammering which takes away the surprising effect. Together with taking risks it brings the fear and avoidance down substantially (Plexico et al., 2009). This approach-‐oriented management instead of avoiding offers multiple social, physical, cognitive and affective advantages (Plexico et al., 2009) for example accomplishing more ambitions (McAllister et al., 2012). Consequently, not directly linked to stammering, experiences of persistence and success in talents and strengths in others fields are also perceived supportive to transform the impact of stammering (Plexico et al., 2004). Even though successfully managing a stammer is an ongoing activity featured by self-‐acceptance, the stammer doesn’t play the main role anymore in life. More positive themes can replace the previously negative feelings. Accomplishment is experienced and more fluency is achieved. More important is the fact that life choices are not defined anymore by anxiety and there is full participation, resulting in a sense of freedom and optimism (Plexico et al., 2004).
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2. Methodology
2.1 Problem statement and research questions Stammering has been researched quantitatively and qualitatively for decades, with the research initiated from different perspectives such as biological, social or psychological (Sheehan & Martyn, 1966; Guitar, 1985; Neilson & Andrews, 1993; McAllister et al., 2012; Mansson, 200; Craig et al., 2009; Chang et al., 2011; Raza et al., 2015). However, a thorough search indicates that, most of the research on stammering has been performed in the Western world. Only limited research on stammering has been completed in the continents like Asia and Africa. In Ghana or any of its neighbouring countries, there is no research on stammering available. However, out of personal experience living and completing an internship in Ghana for almost two years, it is highly common to meet people with a stammer (PWS) in settings such as public transport, the market or a professional context. Through initial conversations with people in Ghana and the participants in this research, the majority mention knowing several others who stammer or hear it commonly. The prevalence of people who stammer is estimated at 1% of the population (Bennet, 2006). Daniels et al. (2007) suggested this would mean it is not likely if you are a PWS to know someone else with a stammer. This causes to suspect the rate of one percentage of PWS to be substantially higher in Ghana. However, broad quantitative research is desirable to confirm this impression. In 2014, the Ghana Stammering Association (GSA) was launched by PWS, recognising the need for support for persons who stammer in Ghana. This organisation is guided by a speech therapist in Ghana working in particular with individuals who stammer. They aim to create more awareness on stammering. Furthermore, there are only five speech therapists currently fulfilling this profession in Ghana, all located in the capital Accra, mainly focusing on speech challenges other than stammering. Research has observed that stammering influences different areas in life (Bloodstein et al., 2008) and portrayed the impact of stammering as disabling (Yaruss & Quesal, 2004). Additionally quality of life research compares the impact of stammering on social functioning and vitality to the impact of chronic disorders like diabetes or coronary heart diseases (Ahroni & Boyko, 2000; Lalonde et al., 2001), confirming the significant impact of having a stammer. Relating to the suspected high prevalence, limited available support and pronounced impact of stammering, it is desirable to initiate research on this topic in this particular context of Ghana. This research aims to broaden the understanding of experiences of people with a stammer in a context different from the often-‐researched western world and inform policy to incorporate the needs of PWS.
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This study tends to initiate research with PWS in Ghana, through exploring their experiences in different contexts. The goal of this research is to collect a broad range of unique experiences of PWS to capture the complexity of experiences on topics related to stammering. The research aims to answer the following questions:
v How do experiences of PWS broaden the understanding of stammering?
v What is the current knowledge and awareness of stammering for the participants (PWS) and their social network?
v What do PWS perceive as support?
v What can policy learn from experiences of PWS?
2.2 Research method and procedure It is worth noting that the set up of this research has gone through different stages of shaping. In search for local guidance to adapt the research to the context of Ghana, visits took place and e-‐mail sent to different Ghanaian universities. However, no local researcher was found relating to this topic. Further search resulted in contact with Nana Akua Owusu, the only speech therapist and guest lecturer in the country focussing on stammering. Subsequently, contact was made with the Elias Apreku, founder of the Ghana Stammering Association (GSA). GSA is an organisation guided by the precious mentioned speech therapist. From the support paradigm perspective, it is the wish to complete research in support to the context where it is conducted. Several meetings and contact through various media took place during one year prior to the data collection with GSA and the guiding speech therapist, in order to define what is supportive and how self-‐advocacy and empowerment can be enhanced. Further two interviews were conducted with a local psychologist, Nortey Dua, who has some experience working with PWS and a British speech therapist who voluntarily executed a practical workshop and some private assessments of PWS in Ghana. Through this cooperation, fruitless actions or overwhelming PWS were prevented. Conversations took place with another speech therapist in Belgium to learn more about stammering.
2.2.1 Sampling size and strategy Patton (1990) states the sampling strategy and sampling size are defined by the goal
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of the research, available resources, the research questions and present restrictions. The goal of this research is to explore experiences and broaden the understanding of stammering, therefore, the purpose of sampling lies in the search for participants who can share rich information (Patton, 1990). The first applied sampling strategy was criterion sampling (Patton, 1990). People who stammer and are members of Ghana Stammering Association were contacted. The majority of the participants haven’t received a professional diagnosis of stammering due to limited number of speech therapists in the country and affordability. Available resources of the present study also didn’t allow diagnosing participants. Two participants followed speech therapy for a few sessions. The severity of stammering varied from almost not noticeable to highly noticeable. For some participants, it was rather more present during childhood. Some participants block on words for a certain time while others repeat words in every sentence. The criterion of being a member of GSA was preferred in order to approach individuals who have taken the first step on personal initiative to reflect on their stammer by connecting to GSA. This was important, considering the interview could bring up sensitive topics that a person has to be willing and ready to face, and GSA would be able to provide some support if needed afterwards. Additionally, participants previously reflecting on their stammer could provide more rich information. Contact with gatekeepers (Van Hove & Claes, 2011) of GSA was sustained from one year prior to the data collection, allowing building trust and gaining access (Van Hove & Claes, 2011). The founder of GSA made the initial contact with the participants, taking on the role of ‘intermediary’ that the participants know and respect (Van Hove & Claes, 2011). This enabled developing a working relationship between participants and the researcher (Berg, 2001). Secondly attention was given to maximum variation sampling in order to find main themes of stammering experiences in order not to generalize but to improve understanding (Patton, 1990). Even though Plexico et al. (2004) stated that there is little evidence to select a representative sample of PWS because it would not be clear which variables the selection should be based on, extra effort was made to reach female participants and participants of different ages and educational levels. However, contextual restrictions didn’t allow the fullest variation. Other media to reach PWS were perceived as high demanding or unavailable within the current research boundaries. A third sampling strategy applied was asking participating members of GSA if they knew other PWS who could be willing to participate, applying snowball or chain sampling (Patton, 1990).
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Table 1: Background of the study Participants Participants Age Gender Education Occupation Kwesi 37 Male HND (Professional Bachelor) Procurement officer Eric 28 Male Bachelor in Economics Statistician Ebo 24 Male Bachelor in Computer Science National Service Michael 31 Male Bachelor Business Administration Banking Kofi 31 Male Vocational training Building & Construction Aluminium works Steven 25 Male Bachelor in Statistics National Service Yaw 32 Male Bachelor in Port, Shipping & Administration Harbour Sales Manager David 25 Male Bachelor in Communication Graphic Design Graphic Designer Akosua 28 Female Secondary Unemployed Mabena 26 Female Secondary House Mother Kwaku 27 Male Masters in Finance, Investment & Banking Student Jerry 31 Male Masters in Finance Stockbroker Ben 22 Male Bachelor in Economics & Geography Student Ato 21 Male Bachelor in IT Student Kojo 29 Male Bachelor in Environmental Science Env’t Health & Safety Manager Erama 53 Female Master in Business Administration Director Real Estate Company Albert 27 Male Secondary Unemployed
* Participant’s names have been replaced by pseudo names for confidentiality purposes The sample size was defined by the goal of the study of exploring the phenomena of stammering and attempt to describe variation and understanding of it and available resources (Patton, 1990). Therefore, a rather larger number of participants were targeted resulting in seventeen participants (see table 1).
2.2.3 Qualitative interviewing The standard definition of interviewing is: ‘a conversation with a purpose’ (Berg, 2001, p.66). Qualitative interviewing or also called semi-‐structured and in-‐depth interviewing is a suitable research method with the purpose of approaching sensitive research phenomena (Van Hove & Claes, 2011). Such is stammering, which is often poorly understood and triggers a set of challenging emotions. Consequently, it is a matter to be dealt with care. Only PWS themselves are able to describe these covert experiences of stammering (Perkins 1997 in Kathard, 2001), possible through qualitative interviewing. The open structure and flexibility combined with questioning and active listening skills of the interviewer (Van Hove & Claes, 2011) for example by unprepared probes, allow adapting to the personal story of the participant (Berg, 2001) and for the participant to feel comfortable. In line with this, qualitative interviewing tends to understand perceptions of participants instead of outlining differences between them (Van Hove & Claes, 2011; Taylor & Bogdan, 1998 in Berg, 2001). Interviews well prepared and conducted can capture extensive, rich
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and detailed information (Van Hove & Claes, 2011) permitting correct understanding of exchanged views (Cannell & Kahn, 1968 in Berg, 2001). In this way qualitative interviewing is rather discovering, describing and hypothesis generating than hypothesis testing (Crabtree & Miller, 1991 in Corcoran & Stewart, 1998) suiting this explorative research. Challenges of reliability and validity need proper attention (Creswell & Miller, 2000), which are described at length for this research. Based on the literature, well thought choices were made to compose the interview guide for the semi-‐structured, in-‐depth interviews. It explores a set of predetermined contexts and topics (Berg, 2001) related to stammering, often presented in this literature such as educational and processional life besides family and social context. All participants were asked to describe their experiences related to these contexts and topics in the same order supported by probe questions to extend their answers (Berg, 2001). The interview guide started with basic questions such as place of birth, education and onset of stammering and rather sensitive topics were situated further in the interview guide (Berg, 2001). Open and broad questions were selected allowing participants to share their unique story in a particular context or on a particular topic, according to personal importance. Hence predetermining the answers was limited as much as possible. To avoid a problem-‐focused approach (Daniels et al., 2007) attention was paid to formulate neutral and not suggestive questions, permitting and stimulating participants to share positive experiences as well. The interview guide was revised and adapted by GSA, the guiding speech therapist and a person with a stammering background. An informed consent was signed and collected. Participants were informed on the purpose of the research, ability to withdraw at any moment of the process and guaranteed anonymity. They were also able to ask clarifying questions. The duration of the interview varied from one hour to two hours and was conducted in English. One interview had to be split in two separate meetings due to time limitation. Another interview could only cover half of the question guide. Several attempts for a second meeting were made, however, unfruitful. The seventeen interviews were spread over a period of three months, June 2015 – August 2015. Per two or three interviews, a demanding eight-‐hour one-‐way journey was undertaken and a three days lodging in a place two to three hours in traffic from the meeting point. Several phone calls and messages spread over days or weeks preceded a maximum two days until one hour up front confirmation to meet. Sometimes this resulted in undertaking the journey in uncertainty and contacting participants again on the way to the interview meeting in order to confirm. Some of the participants arrived on time, some arrived half an hour up to one hour and half late and others had to be informed to reschedule because of this delay. Participants were given the
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choice of location and moment to be most convenient and comfortable for them (Berg, 2001) for the interviews. Despite these challenges, patience, understanding and gratitude was expressed towards all participants realising their voluntary sacrifices of time, effort and willingness to share their personal story and the need to feel comfortable to be able to manage the stammer (Berg, 2001). Interviews were recorded with two different devices assuring no loss of data and enabling to transcribe and analyse the information (Spradley, 1979 in Aronson, 1994). After conducting each interview, personal notes were written down. Following, the second time-‐consuming procedure was performed, literally transcribing the interviews. The transcribed interviews were sent back to the participants for revision with the possibility to add information, adapt or delete certain parts.
2.2.4 Thematic analysis The goal of this research is to explore the phenomenon of stammering in a particular context, describe its potential impact and demonstrate its complexity. Thematic analysis of the collected detailed information is a suitable method to describe the experiences rather than developing theory (Van Hove & Claes, 2011). Thematic analysis findings are understandable to the general public and appropriate to inform policy development (Van Hove & Claes 2011). This is appropriate for the audience this study tends to reach. Furthermore, this introductory method is appropriate for starting qualitative researchers and hence, suitable for this master thesis study (Braun & Clarke, 2006). Thematic analysis demands prolonged effort of familiarising with the data through conducting and transcribing the interviews, followed by coding and organizing data to generate key themes (Van Hove & Claes, 2011) based on developed understanding of what is vital (Crabtree & Miller, 1991 in Cocoran & Stewart, 1998). This process encloses thorough considerations about what is truly essential about the gathered information (Patton, 1990 in Cocoran & Stewart, 1998). A restricted quantity of themes and sub-‐themes is to be identified that describe in depth and represent what is shared during the interviews (Kathard, 2001). Themes are formulated on an abstract, conceptual level allowing interpretation and not just describing the data (Van Hove & Claes, 2011). To enhance transparency, the process leading to the obtained results will be described in detail (Van Hove & Claes, 2011). This was an iterative process, where phases were not strictly separated and moved forward and backwards between phases (Van Hove & Claes, 2011). A first phase of analysis is familiarisation with the data until insight in its complexity
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and scope is obtained (Braun & Clarke, 2006). Interviews were conducted and transcribed by the same researcher spread over a period of six months. This is a time consuming process. However, it is a suitable way to familiarize with the data (Riessman, 1993 in Braun & Clarke, 2006). This is acknowledged as part of interpreting analysis (Lapadat & Lindsay, 1999 in Braun & Clarke, 2006). Ideas for coding were formulated and noted while transcribing (Braun & Clarke, 2006). After the initial coding phase, familiarisation was so thorough that any quote could be identified to the participant who formulated it. During initial coding, all interviews were read and every paragraph or quote received a code of a meaningful concept or at this stage also descriptive codes allowed organisation of the data (Aronson, 1994; Braun & Clarke, 2006). Sixty four (64) codes and sub-‐codes were applied manually (Braun & Clarke, 2006). Succeeding paragraphs or quotes were systematically highlighted in different colours of the transcribed interviews and granted a code in footnotes most closely describing interesting aspect represented in these quotes or paragraphs that will allow generating themes (Braun & Clarke, 2006). As suggested in literature, at this stage, the entire text is highlighted except for a few unclear sentences (Braun & Clarke, 2006). After this phase, a discussion took place with the guiding promoter of this research, who independently coded and interpreted transcribed interviews. The initial coding process is discussed and compared if there is consensus between interpretations. Preparing the search for themes bases on initial coding, all quotes were grouped per code per participant (Braun & Clarke, 2006) in an Excel-‐document and in separate Word documents. Eighteen (18) Word-‐documents were created with conceptual codes and with some containing sub-‐codes. Starting the analysing of the codes in order to suggest potential themes, codes were grouped based on their interdependence (Braun & Clarke, 2006) resulting in three groups. Refining these themes, a Mind-‐Map (see Figure 1) was composed, grouping the 18 codes under three sub-‐themes for each theme, demonstrating a certain pattern and as well presenting the relation between the subthemes and major themes (Braun & Clarke, 2006). At this stage, a second discussion took place with the guiding promoter of this thesis research. Whether the analysis is data-‐led or theory-‐led (Braun & Clarke, 2006), the suggested themes, its inter-‐dependence and naming of the themes are discussed. This explorative study questioned a wide range of topics. These topics were shaped by literature review and the research questions of this study. In line with this given codes were inspired by literature background. However, in the interview guide, close attention was given to compose broad and non-‐leading questions allowing sharing of unique experiences according to personal importance. This made the analysis both theory and data led (Braun & Clarke, 2006).
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Figure 1: Research Procedure
LITERATURE REVIEW + CLOSELY WORKING TOGETHER WITH GSA & LOCAL SPEECH THERAPIST
Mind-‐Map
Mind-‐Map
INTERVIEWING
Sending interviews to participants
TRANSCRIBING
INITIAL CODING + Organising
data
Grouping Quotes per
Code
Revising coding Grouping
codes
Initiating Report
Regrouping Subthemes
= New Themes Initiating
Discussion
Send Report to Participants
Review with Promoter, theme suggestion
Review with Promoter, comparing initial coding
Final Report
FAMILIARISATION
THEME SUGGESTION
THEME DEFINING
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Subsequently, composing the report of the results was initiated. Writing on the report, the analysis was not perceived as completed, but rather a work in progress to deepen the understanding more. Hence a first version of the report and discussion of ideas allowed reviewing the themes and subthemes if they clearly revealed what the data contains (Braun & Clarke, 2006). In this phase it became clear that reorganizing the subthemes generated two other major themes more accurately representing the understanding of the data (Braun & Clarke, 2006). Through this, homogeneous subthemes were brought together in a major theme and subsequently more clear heterogeneous major themes (Patton, 1990 in Braun & Clarke, 2006). A new mind-‐map representing the thematic map was composed (Braun & Clarke, 2006). All the coded quotes were revised if the major themes and subthemes were truly relating to the data (Braun & Clarke, 2006). Simultaneously, the next phase was initiated by grouping related quotes (Braun & Clarke, 2006) that allowed paraphrasing shared experiences, given meaning and impact. Additionally, appropriate quotes of all participants were selected for illustrating the reporting of the themes (Aronson, 1994). After more refining the themes, this phase was concluded with defining and administering names to the themes (Braun & Clarke, 2006).
2.2.5 Active role of the qualitative researcher Since the process of data collection and analysis are potentially influenced by personal expectations, values, preferences, social and cultural context and theoretical background of the researcher (Creswell & Miller, 2000), the specific role of the researcher will therefore be described in detailed for the reader to understand the position of the researcher (Creswell & Miller, 2000). I entered this research field as a young adult woman of 28 years growing up in a Western context, to be more specific, Belgium. However, traveling experience, living and performing voluntary work in Honduras from a young age broadened my views. With this research, I finalize my academic training in Educational Science specializing in Orthopedagogiek (Special Needs Education). Theoretical perspectives such as the ‘support-‐paradigm’, ‘Quality of life’, ‘Disability Studies’, ‘social model’ and ‘phenomenology’ shapes my perception on reality and so motivate this qualitative research. At the moment of initiating the data collection, I had lived for one year and completed an internship in Ghana, allowing to observe and adapt to the research context. Previously, I gained a year of working experience in a refugee centre in Belgium, working with people from different countries and backgrounds. Through these experiences, I gained interpersonal and communication skills with people from various contexts that have been of value during this research.
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With the topic of stammering, I had minimal to no knowledge or experience. It was mentioned during my education and the topic of the story inspiring my choice of study. It was during my stay in Ghana that I observed stammering regularly, possibly every day. These observations intrigued me to research on this topic in support of PWS in Ghana. From personal experiences living in Ghana, it appears people don’t easily share negative or difficult experiences. Others explained this as due to my different background. This, together with my inexperience with stammering, led to a careful attitude during this research. I worked closely together with GSA and the guiding speech therapist, people who have experience with stammering in this context. Every choice and action was discussed. Additionally, the perception of a person with a stammering background was asked to gain more insight in the lived experiences. This caused me to be patient, open, not high demanding or obtrusive so participants would feel comfortable. Due to limited experiences with PWS prior to the interviews there was a certain nervousness to react appropriate if a stammer occured. Afterwards, feedback and advice was sought from participants. After a few interviews I learned to wait patiently when a stammer occured. However, there was no need not act like nothing was going on or become distracted. I learned to name the situation or formulate my perspective without giving advice. I started the interview with proposing breaks or continue on another moment when needed. Interviews were experienced as intriguing, surprising and touching, giving a sense of fulfilment (Berg, 2001). Sometimes, it required attention to process the feelings occurring while listening to moving life stories. A strong motivator of this research is for the research to be meaningful in the context where it is conducted. This can be recognized in the choice of topic, the set up of the research and the analysis of the data.
2.3 Validity -‐ Trustworthiness Qualitative research demands to address validity (Creswell & Miller, 2000) or also called ‘trustworthiness’ (Van Hove &Claes, 2011) because qualitative research doesn’t rely on measurements or tools and rather works with the perceptions of the researcher, participants and readers (Creswell & Miller, 2000). A research honouring this, pays close attention to honesty and ethics throughout the entire research process and the findings closely correlate with the experiences of the participants (Padgett, 1998). Therefore, the perspectives of the researcher, the participants or external individuals can be questioned to establish validity (Creswell & Miller, 2000). It will be described how this research has given attention to ‘credibility’, ‘transferability’, ‘dependability’ and ‘confirmability’.
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2.3.1 Credibility Credibility was sought in the following ways. At first through prolonged engagement and repeated observation (Creswell & Miller, 2000) by living, completing an internship and conducting this research in Ghana over a period of almost two years. This permitted improved understanding of the environment of the participants (Creswell & Miller, 2000). Contact with Ghana Stammering Association and the guiding speech therapist was initiated and sustained one year prior to the data collection. Through peer review and debriefing (Creswell, 1998 in Van Hove & Claes, 2008) as in several meetings and contact, the research got shaped closely working together with the founder of GSA, the speech therapist and other members of GSA. Every methodological choice and decision was discussed and critically analysed to be the most appropriate approach of this research in this context. This collaboration allowed to build trust with these gatekeepers who introduced the researcher to the participants and for them to be comfortable sharing their experiences (Creswell & Miller, 2000). Another peer review was countless discussions with a person with a stammering background to broaden understanding of the perspective of lived experience in the context of the research. Additionally, permitting to become more aware of personal perception as the researcher and understanding of the phenomena enabled to distance from these while listening to the unique perceptions of participants (Cocoran & Stewart, 1998). To enhance credibility, the role and views of the researcher, that could influence the research, are described in detail in the chapter methodology (Creswell & Miller, 2000). Further, after transcribing, the interview was sent back to each of the participants, permitting to add, adjust or delete information. Further, the participants received the resulting themes and quotes from the interviews that supported each theme, in order to give their feedback. Eleven of seventeen participants responded before handing in this study and confirmed the results represent their experiences accurately. The methodology of the study is provided. This gives a detailed description of the data collection, context, perception of the researcher and detailed description of the analyses process (Creswell & Miller, 2000) This allows the reader to enter research context’ (Creswell, 1998 in Van Hove & Claes, 2008) to understand the credibility of the research and define appropriateness of applying results to different settings. An ‘external audit’ (Creswell, 1998 in Van Hove & Claes, 2008) is performed by the promoter of this master-‐thesis research. This study tried to bring in triangulation, by approaching the phenomena from different point of views (Kuzel & Like, 1991 in Cocoran & Stewart, 1998). In the literature review, stammering is described from a neurological, psychological and sociological perspective. In the methodology approach, close collaboration with different parties is chosen in order to rules out a singular, unadapted approach.
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Further a closely associated approach with triangulation, as in searching for disconfirming evidence (Miles & Huberma, 1994 in Creswell & Miller, 2000), was applied during analysis and describing results. This can be recognized in reporting positive and negative experience as well as contradicting experiences. This can improve credibility, supporting the constructivist’s view that there are numerous complex realities (Creswell & Miller, 2000).
2.3.2 Transferability Due to no earlier research available on this topic in this context, this research tends to explore the field with qualitative research with a relative small sample size, which doesn’t allow generalization (Patton, 1990 in Cocoran & Stewart, 1998). However, the purpose is to illustrate potential experiences and highlight the importance of furthers research that will be more generalizable for the whole population of the country or region. Nevertheless, when possible, attention was given to topics allowing some transferability under careful considerations of the reader. For example a number of women were included to closely meet the proportion of male and female persons who stammer and the attempt to spread the ages of participants. Other features of participants are described carefully and detailed description of timing, context, approach and by illustrating findings with quotes of participants the transparency of this research is strengthened (Creswell, 1998 in Van Hove & Claes, 2008), permitting the reader insight in possibility and limitations for transferability (Zyzanski et al., 1992 in Cocoran & Stewart, 1998).
2.3.3 Dependability Prior to the data collection it was questioned if participants would be willing and open in sharing their experiences due to living experience in the context and observing limited sharing of personal experiences. Therefore, extended attention was given to allow the participants to feel comfortable and be able to share their experiences. The extended interviews obtaining multiple detailed positive and negative experiences ensured openly sharing their stories. Remarks of participants as in: ‘I haven’t told this to anyone before’, ‘I need to confess …’ and deep personal thoughts and experiences reassure experiences were not polished. The goal of this study is to describe the uniqueness of every individual experience. The intention is not to observe the identical experiences over again but to illustrate potential experiences and demonstrate how different factors define one’s experience and therefore, are unique for every person.
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2.3.4 Confirmability The procedure of this research is documented in detail allowing transparency in the unique set up of this research. For example, describing the ‘unique perspective of the researcher’ that clarifies the background, reflection and approach. The promoter of this master thesis-‐research takes on the role of ‘devil's advocate" (Creswell & Miller, 2000), coding data independently and bring in a critical perspective through different discussions. This research applied a ‘reflective’ (Guba, 1981) approach by multiple discussions with GSA, different speech therapists and a person with personal experience, adding up to the reflection of the unique perspective of the researcher as mentioned above.
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3. Results
3.1 Straining and supportive reactions to speech challenges The first theme bundles ways people surrounding participants in this study react towards their speech challenges. Both straining and supporting reactions are shared.
3.1.1 Stammering explained Growing up, participants hear different ideas of what causes stammering. Some family members point out the child acquired stammering through ridiculing or imitating a stammer. This opinion is supported by the fact that they did not speak dysfluently before and that there was no close family member with a stammer. The person is not born with the stammer. Participants both question (2p) or approve (6p) it to be the cause of their stammer.
My parents too tell me that I started stammering because I was imitating an uncle of mine, that is what I was told, I imitated and that is how it got started. Kwesi
I think it was in primary school, because I was not born with it. I am suspecting that it was kind of over time I try to mimic a few colleagues in school and I think that is how come I must have acquired it. Because I checked with my family and they say: no you are not born with it. Jerry
A different shared assumption for cause, states that the stammer is passed on by birth or through family bloodline, because participants (4) have a parent or another family member who also stammers.
It is a family thing. In my family too, my uncles, my mom has it a little too. Mabena
Participants report as well, how friends or family explain stammering by believing that they are pretending. The stammer is not constant, does not always occur in every speaking situation. Someone describes how this concept causes him to stammer more in the presence of those who expressed this opinion.
They think: why is it that when I am speaking to friends I don't stammer but when it comes to presentation, I stammer. Why? So I would say if I have friends -‐ out of 60 friends 50 of them think I always pretend. Of course if they say that it then makes me stammer if I speak to them. David
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Further, advices on how to eliminate the stammer demonstrate certain opinions of cause. Suggestions vary from shouting on the person with a surprising effect, when the speech is dysfluent, to eating something like honey, or a certain kind of leaves, or food from the floor. Others refer to the assumption that the stammer is acquired by imitating, the stammer is learned, and so the person should now “unlearn” the stammer with exercising effort.
3.1.2 Unfavourable reactions: I stammer -‐ how do you react? Stammering evokes several undesirable reactions from persons surrounding the participants of this study. On the one side there is the lack of responding by not talking about the stammering or even ignoring a person who stammers. Opposite to these are punitive reactions due to unawareness and misconceptions. Being laughed at because of their speech is something all participants have been through more or less frequently. Furthermore expressed perceptions and reactions segregate participants as being different, not fitting norms or expectations. A more positive intended reaction, however still unfavourable, is being pitied for stammering. Evading Participants share that, while growing up, there were limited to no opportunities to talk about their stammer or related experiences. One person even points out the research interview is the first moment to share his story about stammering and related experiences. Others describe the silence as ‘a normal thing’, their ‘personal cross to carry’ or as a ‘taboo’. Somebody explains his family would not talk about it because they know it would make him feel bad. More active evading reactions are people ignoring or avoiding when realizing the dysfluent speech of a participant.
Sometimes I wanted to share, some experiences or bad times I go through, … because my family has created that environment, they not wanting to talk about it. So even now that I am grown, I don’t know how to begin the whole process of start talking about it. Ato
From impatience to punishment Reactions because of unawareness and misunderstanding vary from impatience to physical punishment: at school or at work, a teacher or client does not give enough time for a participant to finish speaking; family members lack understanding and start complaining or blaming the person for stammering. A participant got scolded and beaten by his mother because she assumed he was imitating his uncle who stammered. Others are insulted, punished or hit by a teacher who is unaware that the person is not able to answer the question due to blocked speech being part of
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the stammer. These unfavourable reactions lead participants to dislike similar situations, continuously being uncomfortable or taking precautions in related settings.
You take your time and talk. You should have overcome it by now. They (family) just been frustrated that I shutter, that am stammering. He doesn’t get it why I, if I am on phone I shutter less. If I am with friends I shutter less, but why is it that when I come to him, him being my father, why I shutter. It’s been there since childhood, him being strict and all, all has contributed to it, that I am still not comfortable in his presence. Ato
I remember, there was a French teacher and that stayed in my head. He was just insulting me: “Tu es stupide, tu es imbécile, tu es idiote!”. So French up till now I don't do French only out of that. Erama
Laughing During school years all the participants experienced peers laughing when their speech was not fluent. This was more frequent from primary until junior high school and reduced commonly during secondary. However, for others this could increase in this period. Memories are shared of the whole class laughing, sometimes including the teacher. Participants describe these experiences as tough and hurtful, resulting in the decision not to speak in class again or wanting to quit school. This was experienced so often that participants got to describe this as ‘normal’. In line with this, stammering is often the subject in daily ‘jokes’. When the participants got older, laughing at their speech reduced, which was then explained by people being more mature and understanding. Laughing at stammering can however still take place occasionally during adulthood.
Our teacher gave us a book and asked each of us to read a paragraph. So when it came to my turn, the whole class was laughing at me. Since then I vowed not to speak in class again. Steven
We used to have this session for jokes, so most of the time this jokes had to do with stammering. … deep inside me, I know it is crazy. I know it has a direct impact on me, though we all laugh, I am laughing outside but inside not. Michael
Othering Specific perceptions and expectations expressed by the environment, discriminate participants on personality traits, how qualified they are for certain professions, or
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being perceived different from normal. Distinguishing can result simply from staring at the person while speech is dysfluent. Or in using particular personality traits to describe participants: for example being called timid when refusing to be the Master of Ceremony for a program. Peers describe someone as antisocial because of only talking to people in whose presence one feels comfortable. One participant explains how she internalized these perceptions of others but realized this is not how she actually is but how certain behaviour is interpreted. Even more, a client literally advised a participant to change his job in sales because of his speech. Participants are confronted with the fact that people need to speak fluent to be seen as qualified in their professional role or to perform certain occupations like journalism and teaching. Participants show the complexity of internalizing and/or obtaining these opinions from others themselves. It is reported that society is obsessed with fluent speech and that people see you as different from normal and even classify you as disabled and therefore for example not fit as a partner.
I have come to accept being shy because it becomes a part of me because you avoid people. … And the way they term that is being shy. It makes more sense where it is like I know I am not shy but it is how it is interpreted as being shy. Because when you get to know me and we are laughing I don't come across as the shy girl. Because I am not. Erama Our part of the world they have this mind set on people who have that speech deficiency they are some how different from normal person, I know how they see us. Steven
Pity Some people demonstrate sympathy, however, unfavourably expressed as pity. One participant mentions people feeling sorry for him and avoiding eye contact when he is talking. Others offer prematurely help by completing sentences or talking for the person in a meeting. In school this can be a teacher asking a student who stammers to sit down to prevent embarrassment.
Some teachers think they are helping me out by not asking me questions. At the university, when we are doing some presentation and stuff most of them skip my part. But I would be happy if they had some time for me. Steven
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3.1.3 Support Besides undesirable reactions, participants share multiple supportive experiences, received from various people in their social network. Family Parents can demonstrate patience and may advise to see a speech therapist. Siblings are described to be able to offer moral support and encouragement, and to recommend not to mind others opinion. Furthermore, participants can share difficult moments or discuss certain aspects of stammering with their family. Partners can be accepting, encouraging and understanding.
So my older sister, she is actually the first one. I was complaining about it, about a month and a half ago. She said that from her opinion I should just try to accept the fact that I stammer, I should try my best to deal with it. I should feel free anywhere I go, and I shouldn't think it is trouble. She is actually the reason why I decided that I wouldn't think of the opinions of others. And that it is high time I accept. Ben
Friends Friends equally express their support by accepting the person and the stammer. Then participants feel comfortable with them, also if their speech is dysfluent. Friends can also encourage doing something in spite of the stammer, or sticking up for the person if others laugh. However one participant perceives the latter as if he can’t defend himself.
I have this friend from Senior High school, up to now we are friends now. He is comfortable; he can look me in the eye, he waits for me to finish, so I am free with him, I can even can even shutter freely, I can even stammer freely. Ato
I am terrified going anywhere alone. I always need that back up. You don't have to do anything. Just when I have a friend of two with me when I go to a place, it is easier. So some of them they will know that if it is an important meeting, their job is to deal with the small talk and that it flows enough that I relax and flow with it. Erama
Teachers and employers Participants describe teachers demonstrating patience by giving time to answer questions. They can make a participant feel relax and feel free to speak. Other
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teachers are able to prevent class from teasing or encourage a student who stammers to take on a leadership role. At work, support is experienced when employer or co-‐workers make a participant feel comfortable, understood or given opportunities. Any other person can be helpful and accommodating by being patient. One employer sets an unique example by financing speech therapy.
But those I was with in the same class they would not tease me. Because my class teacher by than told then they should, they chose me to be the class captain, so they shouldn't take me for granted because of my condition or tease me or do bad to me because they chose me to be class captain. Albert
Professional therapy Only limited participants of this study have limited participants. For one person it was positive, however felt as ‘too late’. She states it’s more effective if followed at a young age, before patterns to deal with stammering are formed. Another person describes therapy as stressful and difficult to continue. Participants recognize the need and desire for professional support; however, they have no knowledge of its existence in Ghana. They would consider therapy if they could afford it and felt ready.
I remember the two things: it is ok to stammer, this is me and take it all. Erama
I will say, any time I enter in to her office, it makes me feel like I am a stammerer. It made me very conscious of myself. It makes me tensed, very very tensed, extremely. … It is like H. speak speak speak speak. David Generally there is no institution I know of to handle anybody that stammers. In our schools nothing happens, no guidance no speech therapy, nothing. So either you get the privilege I have, to get over it over the time. Yaw
Religion Participants find courage in their beliefs. They describe gaining encouragement and strength to continue. For someone religion even makes him see a purpose in having a stammer. Furthermore, attending church service every week or participating in the choir or Sunday-‐school are sometimes the only social activities participants attend to, and moreover, no undesirable reactions are reported in this context.
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I believe the creator as God, he has a purpose for doing everything so I believe there is a reason I have this. Kofi I would say God. Looking at where I am coming from, combining stammering with my education was very hard, difficult, so it was only God who saw me through it, I wouldn’t have done it on my own, because I pray him to answer me. Ebo
3.2 Stammering contains more than speech challenges The second theme portrays experiences of the invisible part of stammering. This encloses emotions and restricted social participation.
3.2.1 Feelings Fear
It is very big. I don't think we can put it in words enough. What fear does to us, the impact on our lives. Erama
Different kinds of feelings are described, of which the most prominent appears to be the fear related to talking. Participants are nearly always afraid for the stammer to occur, or scared for reactions from others like laughing or impatience. This fear increases particularly when meeting a new person. A participant explains this fear as not knowing what reaction to expect. At school there can be fear to answer questions, to read out loud or to talk to an audience. Job interview is described in terms of “hating it or never wanting to experience it again”. Another potential situation for fear is talking to someone of the opposite sex or to a supervisor at work.
At times when you are even asked questions. For a fear of being laughed at if you didn't know the person you don't want to even come out. Kwesi When it comes to that the moment am asked a question in the mix of people I become so frightened. Because I know I would definitely stammer. Which in society you be laughed at, definitely you be laughed at. That is it. Mabena
Embarrassment and frustration When speech is not fluent, participants very often experience embarrassment or frustration because the sharing of an opinion is impeded. When this happens, anger and distress can be felt. A different kind of anger is when participants recall reacting aggressively towards those who teased or bullied them at school.
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I did the presentations, some were very embarrassing, I just didn't want to come to school anymore. I just can’t watch the video. The length is like 15 min but if I watch it for a minute I just cant watch no more. David
Feeling down Participants express also to have felt sad or upset due to reactions of others. They feel they have missed opportunities and developmental challenges because of the stammer. Furthermore participants mention that accumulated feelings and experiences led or added to suicide thoughts.
Emotionally I am usually down, the reactions of people make me feel bad. Sometimes not the reactions, even if the person is patient and understanding, even if (I) have spoken and I stammered, I (am) still sad. Ben
Accepting stammering? Besides emotions participants describe challenges in the psychological process of accepting stammering. These are discussed in various ways. Participants report how accepting their stammer depends on the opinions of others, saying that once they stop minding the opinions of others, acceptance is easier. Acknowledging the stammer is possible with certain people but not with everyone. Another participant states that it’s necessary to eradicate the stammer in order to improve his chances.
Now I try not to care about it, I decided a few months ago that it is how I am, if I cant do anything to really change who I am, I think it is high time I just accept who I am. If anyone doesn't accepts me in a way it is their own problem. I just started to feel that way, it is not that I feel that way all the time, I am trying. Ben
Remarkable is when participants do not see or refer to themselves as a person who stammers, or do not consider stammering as part of their identity: the presence of the stammer is not denied but limited to its actual occurrence. For example identifying with the stammer was there when it was more frequent at a younger age, and currently limited to the presence of stammering on certain words or in certain situations.
If I speak to someone and they say “Oh H. You are a stammerer?”, even though I Say “Yes”, in my mind I say “I am not a stammerer”. I am only a stammerer if I can’t speak, if I am finding it difficult to than speak. David
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3.2.2 Restricted participation Like … its … it doesn’t make me do … what I want to do and what I want to say, who I want to be, where I want to go, how I want to be like. Kofi
Participants describe different gradations of concealing the fact that they stammer, avoiding speaking situations or restricting participation in certain activities. This is situated in different contexts such as school, social life and professional occupation.
I don't think we even know that we are hiding intentionally. But I think we all hide it, but because we are hiding it, we (are) always troubled. Erama Even though she has accepted that I shutter, I’m still coming to terms with that, I feel I don’t want her to see. Even though I shutter one or two, I try my best not to shutter to severe. Ato
Education: “To ask or not to ask, that is the question?”
Talk less, so it means I stammer less. Eric During the years in school and university participants report reducing the frequency of talking to prevent peers from laughing or to avoid the stammer showing up. Ways to achieve this could be participating less in class by pretending not to know the answer or whispering it to a friend. Participants could undertake more invasive measures like going to the bathroom each time it came to their turn to read, skip classes or avoid taking up certain positions by staying at home on the election day. Due to lacking awareness, teachers misinterpreted these actions in thinking the student was stubborn, never knowing the real reason why.
I would rather sit down and pretend I don't know. Mabena
From Senior High School (to) my final year I played hide and seek with them (teachers). Some noticed but they were thinking, since I skipped their class, I was being stubborn. They never knew real reason. Steven
Social life
I am very social, with (who) I want to be with. Kojo Trying to avoid the stammer frequently takes place in social life and therefore can affect it. Participants mention contributing less in conversations with friends or limiting interactions with people in general. They restrict themselves to address crowds or sing in front of an audience even though they know they have the capacities for it. More specific ways of avoiding can be replacing words by a
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synonym or translating it in another language. Another participant shares that he drinks alcohol to relax and to enable him to speak more fluently, even though it creates other challenges. These avoiding measures can impact social life in various ways: friends not knowing at all that the person stammers; participants not engaging in free time activities or keeping opinions to themselves. Someone formulates the stammer prevents him from being himself, a calm though outgoing person. However, participants state as well that for them, participating less in social activities, should not be confused with restricting themselves, it is their preference or personality.
Maybe you have some ideas or something you like to share, but you are wondering weather if you begin you end up stammering. Eric
So like this girl, and I didn't want her to know that I stammer, so I used to drink whenever I meet her. When I am drunk, it is the same thing like when you are relaxed, I don't stammer. But she didn't like alcohol too when I was with her. And I didn't want her to know that I stammer. I am not proud if that. It solves my issue that I stammer. But my drinking too has his own problems. Kojo
Professional life: ICT or statistics versus law or journalism In the professional context participants clearly experience being restricted by the stammer, taking it into account while choosing a career based on its demands for talking. Therefore IT can be chosen over business or computer science – it can be selected even though interest for it still has to develop over time. Others will divert from law studies or not follow a childhood passion for acting. A participant shares he would have liked to study something different, and would have chosen another career and would have been able to achieve more if it was not because of the stammer. Besides this, participants describe as well following career choice aspirations to their field of interest without considering their stammer.
Business, there is more probability of more talking. So I am like, no, I am not getting in to business school I am going for IT program, because I knew what I wanted to do. I read about it. I read a lot about careers, like which career. So I learned that IT, you won’t talk much, it is all about getting the job done. So I think now because of the shutter I have taken this particular path. Ato
A job interview is described as highly challenging to speech fluency. Moreover, participants report that when the speech is dysfluent during the interview, it limits their chances to be selected significantly.
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‘Job interview, “I hated it”. If I can't find a job I will create one.’ Erama.
So I apply for teaching job in some school and than the head of that school, told me that how come a stammerer (wants to) teach in a class. So the moment the man said that, I felt so bad. And than I told him to give me chalk and give me an hour to meet the class and teach for them to judge me. The man was like doubting, he sent me out of the office not to come there. So I spoke to some few teachers that they should plead on my behalf. This time the man gave me an hour to go meet the form three class. I went there and than I taught. I chose a math’s topic that was a change of topic. I didn't look (in) any text book. I taught the class for an hour. Than the man came to the class and asked me to go and wait for him at the staff common room. So he judge me with the students. But, grace to God, the class told him I was good and they didn't know that I am a stammerer. Albert
Executing a profession, participants search for ways to limit talking. This can be by restricting answers to yes and no or working very precisely to prevent mistakes that will have to be explained. Someone else would work hard to increase the chance to receive the same assignment, that doesn’t require talking, again. Hard work can also be applied to become your own boss, being able to decide yourself when and where to talk. This allows as well sending someone or going together with an employee to meetings.
Well, you know, the truth is, if you stammer in front of your boss or your supervisor or even your colleagues, it really brings you down. It affects your self-‐esteem. So I don't talk much in office and I almost make my answers short. I usually stick to yes or no. Steven
3.3 Who am I and what can I do?
3.3.1 Much more besides stammering!
I stammer whatever! I know whatever you can say I can also say! Kojo Sharing their story, participants demonstrated how intrinsic characteristics being of support in dealing with stammering or increasing resilience towards the impact of challenges related to stammering. For one participant this is having developed a strong will, being optimistic and liking challenges, allowing him to work on his stammer. Another person is very social which developed his self-‐confidence. Someone finds encouragement in knowing he
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is a good student, in hard working and in his a sense of humour. This shows how identity and personality can counter the impact of stammer.
I think I am a strong willed person. I have a strong will. Very optimistic. I love to take challenges, very difficult challenges. I think that has really, that self fighting ability, I think has really helped me. Michael
I try to come out and not allow anything to hinder me. For me, I try to be me, irrespective of, I try to be me. Kwesi I was just this loud guy, playing with everybody and all that. Though the stammering was there, don't care, let’s play. Yaw
Talents Being talented is also described as helpful. It improves confidence and self-‐esteem. One can be very qualified for graphic work, or being a competent teacher being able to teach without stammering, or being a talented singer or musician and perform in front of an audience.
I was called for an interview. I had to introduce myself but I stammered a bit, and they told me that I should not worry so much about the stammering because my work is good, it speaks for itself. As soon as I heard it, I think it really built my confidence. So I started to speak. David
When I am teaching I hardly stammer. When you know what you are about to teach you don’t feel nervous. Eric
3.3.2 How to deal with stammering?
I think you adopt things depending on your nature, your circumstances, your environment, your family, everything. You come out, we all come out with different things. So what I might do will be different from what somebody else will do. Erama
Fluctuation Participants report how stammering can fluctuate over time and in different situations. It is described how there are times or moments that speech dysfluency increases or goes down. Yet, it is difficult to know the specific triggers. Therefore a person calls his stammer a mystery.
At times it comes so much that before I talk I have to struggle, some two months, some three months. Than after it calms down and I can talk
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freely. It is something like a chronic thing. That is how I experience it. Mabena
I wish I could find that something. As soon as I wake up the first word, it tells me if I am goanna be fluent or not. David
There are certain situations or contexts in which participants commonly describe increased dysfluency, such as in particular school tasks, a job interview or talking in a public setting. Pragmatic approach
Everybody has to talk one way or the other. Kwesi Besides intrinsic talents participants share actions that help them manage stammering. The following illustrates different aspects such as searching for a comfortable environment, breathing techniques, personal adaptations, active working on or disclosing the stammer. Participants mention that feeling relaxed and comfortable limits dysfluent speech, they can achieve this if feeling upset or angry is avoided and pressure reduced. Therefore someone can search for the company of friends or people who won’t laugh. Others can find common interest to talk about or use humour to break the ice and create the preferred environment to speak comfortable. However, feeling comfortable can also allow the stammer to occur more, because they feel no need to control it.
I think the basic thing for me is keeping a calm composure. Once you are very calm, relaxed and comfortable I think it is easy for the speech to flow. Kwaku
(I) introduce some humour in there just to make the environment very soft. So that the focus is not on the stammer. Jerry
Several ways are described to work actively on stammering. Taking time while talking and paying attention to breathing, because speaking in haste can bring about the stammer. Participants practice speech by means of a tape with exercises on challenging sentences. Someone will have an image in mind of how he wants to come across and imitate that image when giving a presentation or during a meeting. It has also been shared, that making sure to know the content very well concerning certain aspects of the job, proved to increase fluency.
Psychologically, I think, in my mind I create an image, I create a personality in my mind, I try to imitate that. It is not always, it depends on the audience I
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am talking to. You pick a favourite guy you like to watch, it is Obama who ever. Than I play, it is more of acting. I think that I like the person, so I see some traits. It’s a trait because you need to absorb it and than you amplify it in your actions and your speech. Jerry
Additionally participants find personal approaches to manage situations that are challenging for them. For someone that is, sitting in front of the class to reduce the distance to the teacher when answering a question. Another person will be the MC of a group-‐work presentation, so he can participate however doesn’t have to talk a lot. A radio interview can be recorded upfront to reduce pressure and to be able to to approve or redo it before airing. To manage challenging phone calls a participant will cough to let the other side know her presence when the words aren’t coming. At work, meetings are supported with diagrams to produce flow, or prepared and contributed to on paper. Challenging oneself In courageous ways to work on stammering, participants challenge themselves to reduce or prevent the stammer from limiting them. This could be frequently putting your hand up in class to read or answer questions in order to control the fear for these activities, or participate regularly in social groups requiring talking in front of an audience. Someone challenges himself in contributing to conversations where before he only listened. Another person makes sure to sometimes leave his comfort zone. In line with this participants can work on their confidence, which supports them in managing the stammer. Others don’t allow it to limit or bother them for example by controlling negative thoughts.
In fact, telling my story I wont leave Sunday school (in church) out because that has helped me build my self confidence to even stand in front of people, not large group but at least. Mabena
So it is either I stay in my room and tell myself I am going to be a stammerer for life and just be there but if I tell myself, maybe next five to six years I want to be a successful graphic designer, if it is going to be tough for me I still have to go through it because it is life. So I know, I am very sure. I don't see stammering to be a block in my success. David Lets say I have a bad stammer in a day, it may worry me until evening and the next day I wake up and have a good day, end of story, it is done. Jerry
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Accepting and disclosing Participants share that accepting stammering enables them to deal with it or to find ways to work on it. Accepting is something participants try and will sometimes succeed in, other times they still feel like hiding their stammer. Someone tells understanding or explaining stammering benefits acceptance. In line with this participants can disclose their stammer, which reduces fear and makes sure the listener understands the situation better. This could be a teacher disclosing towards hiss class, or someone disclosing his stammer in a job interview or to a new person.
So I feel as I have accepted it now, that I have a stammer, but not in a way that I have accepted in that I don't want to try and find a way to minimize it or go away. Ben
Yes at times when I am talking to them I have to tell them my challenge. … If I don't want the person to have perception or the impression that it is intentionally. So once I start talking and it is coming I say, boss I stammer a bit so just try and bear with me. Kwesi
3.3.3 Positive influence: not all bad Not generally agreed to however, some participants share how having a stammer had a constructive effect in a particular area. A participant tells to have mastered summarizing, which developed his capacities for logic and improved his overall problem-‐solving skills or finding the determination to become the head of a successful real estate company. For another person it has made him come closer to friends who understand and encourage him. Another participant explains how he explored other talents besides speaking and put all his time and energy to become the promising graphic designer he is today.
Personally, it may be very positive. It made me love adventure. As in researching in to things. Stammering made me read, normally reading would not be part of me. I have loved reading. I have gotten, I have mingled with a number of social groups and clubs that actually gave me a lot of networking. Michael
Shutter has played a role. A mayor role for me being hard working and challenging myself, because of the shutter. Yes it is a blessing; it is just that my mind was not on it. Ato
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4. Discussion Ghana Stammering Association and the only speech therapist who focuses on stammering, among a total of five speech therapists in Ghana, are working together to raise awareness on stammering. There is a high suspicion, but yet to be confirmed by research, that the prevalence of PWS in Ghana is high compared to the average of one percent in other populations as reported in literature. There is no previous research available on stammering in Ghana or the whole West Africa. Therefor this study explored the lived experiences of adults who stammer in Ghana in order to broaden the understanding of the phenomenon, reveal the current level of awareness, identify what is supportive and inform policy to incorporate the needs of PWS.
4.1 Discussion of results Misconceptions The results of the present research explore the experiences of people who stammer and demonstrate the rather unique experiences of participants in terms of misconceptions of how stammering is acquired. Mostly, family members point out to participants that, the cause of their stammering is through ridiculing someone or imitating their dysfluent speech. Another misconception about cause, consistent with previous studies, is the notion that a person is pretending to stammer because the stammer is not regular (Flynn & St. Louis, 2011). Both explanations of cause place the responsibility of acquiring the stammer in the individual person. Additionally, participants can encounter people who suggest myths about 'cures’ or ways to eradicate the stammer. Misconceptions on stammering are previously reported by PWS in qualitative research or mentioned in research on others’ perceptions of PWS (Hearne, 2008; Craig et al., 2003; Gabel et al., 2004; Hughes et al., 2010; Langevin, 2009). A more accurate assumption on how participants reason to have acquired their stammering is gaining it by birth through the family bloodline because a parent or other family member also stammers. This can be confirmed by the inheritable nature of stammering revealed in genetic research (Dworzynski, et al., 2007; Rautakoski et al., 2012). Straining reactions of the environment Besides misconceptions, participants have to deal with various unfavourable reactions from people in their surroundings. These unfavourable reactions can impact them in different ways. First, there is a lack of reaction of people on the stammer. This creates an environment in which participants, while growing up, cannot talk about their
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stammer or its related experiences. Participants in other research equally share not talking about their stammer (Blood et al., 2003). This reveals a straining nature of challenges that a minor has to deal with alone, and it can also give the impression that stammering is not acceptable (Hearne et al., 2008). Potentially due to placing responsibility of acquiring the stammer in the individual person, participants report reactions of family members such as complaining, blaming, shouting and physically punishing them for speaking dysfluently. This can happen in school as well because a student is often misinterpreted when he or she gets stuck on words and cannot answer a question. These experiences clearly illustrate how stammering can impact the relationship with parents (Klompas & Ross, 2004) and every day school-‐life (Blood & Blood, 2004; Davis et al., 2002; Langevin et al., 1998; Murphy & Quesal, 2002) due to the lack of understanding and impatience (Erickson & Block, 2013). School life can be further impacted by the multiple experiences of being laughed at when the stammer occurs. This takes place mostly during primary school and hence primary aged children who stammer experience a higher risk to be teased (Langevin et al., 1998; Davis, et al., 2002). For some participants in the present study, these reactions become more frequent during secondary school. This confirms the likelihood that adolescents who stammer become targets of bullying (Davis et al., 2002; Evans et al., 2008). In adulthood being laughed at while stammering takes place occasionally likewise participants in Klein and Hood (2004) who mention being mocked at work. The perceptions of others as shared by participants in the present study, confirm how most PWS experience stigmatization by adulthood (MacKinnon et al., 2007; Blood et al., 2003). The components of the social process of stigma stated by Link and Phelan (2001) emerge in the experiences of participants in the present study, including labelling, connecting differences to stereotypes, separation, status loss and discrimination (cited in Daniels et al., 2007). People use stereotyping personality traits such as timid, quiet and anti-‐social to describe the participants. Analogous to those pronounced in the perception research are descriptions of PWS being shy, nervous and introvert (Silverman & Paynter, 1990; Bebout & Bradford, 1992; Crowe & Walton, 1981; Ham, 1990; Kalinowski et al., 1993; Ruscello et al., 1994). Expectations to be fluent, of parents or society label participants in the present study as different, not normal or disabled. It becomes discriminating when fluent speech is required for professions as journalism, teaching or reception work. This view is consistent with research of people perceiving PWS as unfit for professions like teaching, sales, or law (Gabel et al., 2004; Swartz et al., 2009). In line with this, is the concern shared by participants in the present study, that stammering is seen as unqualified in ones occupation, which could result in status loss. This is equally the
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worry of participants in Bricker-‐Katza et al. (2013) that stammering is perceived as incompetent or unprofessional. Difficult emotions and restricted participation Participants in the present study describe different emotions and restricted participation besides more observable speech challenges. The domains in which emotions and restricted participation are experienced mainly relate to the domains in which discussed misconceptions and unfavourable reactions took place. This confirms that negative self-‐perception and social anxiety leading to concealing their stammer or avoiding speaking through various strategies (Crichton-‐Smith, 2002; Plexico et al., 2009; Erickson & Block, 2013, Beilbya et al., 2012; Klompas & Ross, 2004; Corcoran & Stewart, 1998; Daniels et al., 2012), probably due to previous negative communication experiences (O'Brian, 2011; Beilbya et al., 2012; Daniels et al., 2012). Further this provides support that the severity of the impact of stammering differs from and goes beyond the frequency of dysfluent speech (Erickson & Block, 2013) with psychological and social consequences (Iverach et al., 2009; Tran et al., 2011). The most prominent emotion in the stories of participants is fear. In education fear is experienced when answering questions, reading out loud or presentation. This is consistent with the findings of Daniels et al. (2012) where participants report how the same tasks induce anxiety. Consequently participants in the present study can reduce the frequency of talking or limit participation for example by whispering the answer to a peer or skip a task or class. These coping strategies are in line with the approaches previously reported (Klompas & Ross, 2004; O’Brian, 2011; Daniels et al., 2012) and confirm the potential impact of stammering on school-‐participation of adolescents who stammer (Erickson & Block, 2013). Subsequently this can hinder academic achievement (Klompas & Ross, 2004; Crichton-‐Smith, 2002; Daniels et al., 2012); which also takes place for a participant in the present study who is not able to do presentations. This affects clearly his grades in school. In social life a frequently mentioned situation where participants in the present study experience fear, is meeting a new person. Someone explains this as not knowing what reaction to expect, as reported correspondingly in Plexico et al. (2009). This can trigger, as multiple findings of the present study demonstrate, participants to restrict participation such as contributing less in conversations or limiting interactions with people in general. This provides support to literature stating that PWS can avoid words, people or social situations (Corcoran & Stewart, 1998; Beilbya
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et al., 2012; Guitar, 1985; Blood et al., 2001). Subsequently, social withdrawal could be the outcome (Blood et al., 2001), which corresponds with participants in the present research, not engaging in free time activities or the stammer preventing someone from being outgoing. Strategies used to appear more fluent can be replacing words by synonyms or translations and for example drinking alcohol to relax. This is consistent with participants in Plexico et al. (2009) who can equally apply word substitution or use a substance. In the professional context the most prominent reporting is participants making career choices based on its limited demands for talking, like professions as ICT instead of law or acting. Comparable considerations were narrated in earlier research (Klompas & Ross, 2004) selecting a profession according to speech competence (Crichton-‐Smith, 2002; Klein & Hood, 2004). However participants in the present study also report the opposite. They follow career aspirations according to their field of interest without considering their stammer. Correspondingly, this is also shared in the research of Bricker-‐Katza et al. (2013) where both alternatives are possible. Job interviews are of great concern to the participants in the present study due to the discriminative consequences. This confirms previous research stating that increased dysfluency during the interview, reduces their chances to be selected (Bricker-‐Katza et al., 2013; Klein & Hood, 2004). At work, the findings of the present study show ways to restrict talking which can lead to hindering promotion (Klompas & Ross, 2004; Klein & Hood, 2004; Bricker-‐Katza et al., 2013; Crichton-‐Smith, 2002). Further, participants describe feeling embarrassed if their speech is dysfluent and upset due to the reaction of others, missed opportunities and challenges related to stammering. These feelings are repeatedly shared by PWS in previous qualitative research (Crichton-‐Smith, 2002; Corcoran & Stewart, 1998; Plexico et al., 2004) and confirm that shame and suffering are psychological consequences of stammering (Iverach et al., 2009; Tran et al., 2011). Participants in the present study also experience frustration and anger what can affect the emotional and mental health (Bloodstein et al., 2008; Menzies et al., 1999). Some participants in the present study who shared that accumulated feelings and experiences added or led to suicide thoughts can establish this. Challenges in the process of acceptance Besides feelings, participants portray challenges with the psychological process of accepting stammering. Remarkable are persons that indicate they do not refer to themselves as a person who stammers even though participating in the present research. It is however important to note that the stammer is not denied and it is acknowledged in certain words or at particular moments. This could imply that these
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participants don’t identify with a stammerer or PWS because it labels their whole person or whole speech by stammering, opposite to the reality they described. Moreover not identifying with these labels or accepting the stammer is not surprising considering the increased negative connotation stammering receives through the discussed unfavourable experiences. In particular the silence on stammering and misconceptions on cause and how to eradicate it, potentially leads to the blaming and punishing a PWS and can implies the stammer is not acceptable. Therefor identifying with stigmatised stammering or labels can be separating (Link & Phelan, 2001 cited in Daniels et al., 2012) which influences ones sense of belonging (Daniel 2007). This impression receives support from participants in the present study, describing that acknowledging the stammer depends on the opinion of others and where there is more knowledge and understanding of the stammer, opposite to stigma, enables acceptance. Fluctuation of the stammer frequency Participants in the present study describe fluctuation of ones stammer over time and increased dysfluency in particular contexts. These settings are mainly similar to the context where unfavourable reactions and experiencing fear take place, for example, in school or in public places where the listeners are unknown or many. This is consistent with research indicating that anxiety plays a role in stammering (Bloodstein, 1995; Miller & Watson, 1992). The fluctuation of dysfluency is further in line with previously shared experiences reporting that the severity of speech dysfluency can vary depending on the setting and how a person feels physically and emotionally (Klompas & Ross, 2004). Support from the environment Contrasting with difficult and challenging experiences and feelings, all participants in the present study could contribute on experiences of support received from surrounding people and support emanating from within the person. This confirms people desirably managing challenges related to stammering with and without formal treatment (Anderson & Felsenfeld, 2003; Finn, 1996; Plexico et al., 2005 in Pexico et al., 2009). Of which the support of the social network can counter, as stated in literature, the impact of undesirable reactions, like teasing and bullying, considerably (Hearne et al., 2008: Erickson & Block, 2013). Parents, siblings, partners or friends of participant in the present study have been described as supportive through accepting, encouraging or understanding. This is similar to previous research where the close social network provides support by being open and honest, understanding and respectful (Beilbya et al., 2012; Plexico et al., 2004).
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In the context of Ghana a not dismissible supportive factor is religion. Participants describe finding encouragement and strength to continue in ones faith. Further, attending church services weekly and participating in the choir or Sunday school can offer a place of acceptance and belonging due to the lack of unfavourable reactions or stigmatisation (Daniel 2007). Therapy Only limited participants in the present study attended professional therapy, describing both supportive and challenging experiences that are in line with previous research (Klompas & Ross, 2004; Craig, 1998; Daniels et al., 2006). Others describe the lack of available therapy and desire for it. They are not aware of any of its existence in Ghana. Someone describes that managing stammering therefore depends on having the ‘privilege’ to get over it over the time. Even, when there is knowledge of available speech therapy, it is not affordable to attend. This combined with the fact that Ghana only has five speech therapists, based in the capital city of Accra of which only one of them focuses on stammering, demonstrates the great vacuum of available and affordable professional support. Support from personal intrinsic features Portraying support from within participants in the present study describe how personality features and talents can be of great help countering challenges and managing the stammer. This is equally reported before as in perceiving strengths in others fields and experiences of persistence or success in talents are supportive to transform the impact of stammering (Plexico et al., 2004). In the findings of the present study different successful factors of managing stammering can be recognized as found in previous research as in behavioural modifications, fluency modification techniques, motivation and determination, environmental change and changes in attitude towards oneself and stammering (Anderson & Felsenfeld, 2003; Finn, 1996; Crichton-‐Smith, 2002). Participants actively search for a context where oneself and the environment are relaxed and comfortable which will enable to improve the speech flow, this closely sides with the successful factor of environmental change (Anderson & Felsenfeld, 2003; Finn, 1996; Crichton-‐Smith, 2002). In contrast, the speech of some participants will be less fluent when they are comfortable. Participants in Crichton-‐Smith (2002) describing similar experiences like feeling more comfortable stammering at home and with friends. This could imply that because the communication partners in this context are known, they do not experience the fear in anticipation of the negative reaction (Plexico, et al., 2009; Beilbya, et al., 2012) and therefore not feel the need to apply effort to manage the stammer.
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Participants in the present study point out the need to work on their stammer and apply various methods doing so. For example taking time and talking slow or paying attention to breathing techniques and practicing speech. This approach, fluency and stammering modification techniques, is a successful factor of managing stammer (Anderson & Felsenfeld, 2003; Finn, 1996; Crichton-‐Smith, 2002). Another way participants in the present study work on stammering is by challenging oneself that requires leaving their comfort zone. This proves that they obtain the successful factor motivation and determination (Anderson & Felsenfeld, 2003; Finn, 1996; Crichton-‐ Smith, 2002) and take risks, which can bring down fear and avoidance (Plexico et al., 2009). Following, improving confidence has shown to be supportive for participants in the present study. This can relate to participants in earlier research reporting, in a different order, that speech therapy improved ones self-‐confidence (Klompas & Ross, 2004; Plexico et al., 2004). Accepting ones stammer is described by participants in the present study enabled them to work on their stammer. This can be confirmed by acceptance stated to be a feature of the on-‐going activity of successfully managing a stammer (Plexico et al., 2004). A next step is participants in the present study disclosing ones stammer, which reduces fear and allows other persons to understand better. Participants in Plexico et al. (2009) report it brings, besides fear, avoidance down as well. Furthermore Bricker-‐Katz et al. (2013) state how facilitating the understanding of stammering is helpful to reduce misconceptions. Additionally, research revealed that PWS recognizing ones stammer are perceived more positive than those who don’t (Collins and Blood, 1990 cited in Klein & Hood, 2004). Closing this discussion, it appears that challenges not only bring hardship but they can also create opportunities to learn or make hidden strength and talents shine. Participants in the present study experienced this through improving over all problem-‐solving skills, finding the determination to become the head of a successful real estate company or exploring other talents combined with motivation to work hard, becoming a promising graphic designer.
4.2 Implications of the results The revealed themes from the experiences shared by participants in this study entail various implications. These can inform and be useful to persons who stammer, their environment, policy makers and professionals that work with PWS such as speech therapists, psychologists and teachers. The discussion shows how straining reactions and perceptions of people surrounding PWS can lead to stressing emotions, restricted participation and increase the challenge on speech. Further the findings of this research show the existence of several misconceptions about stammering such as to cause, how to deal with it and
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expectations. Additionally there is great unawareness of the impact of straining reactions on the PWS, the fluctuating nature of stammering and impact of endured emotions and restricted participation. As participants share they were limited in talking about their stammer and related challenges while growing up, it is highly desirable to break this silence in every context: at home, at school or at the work place. In order to create the open space in which it is possible to share and discuss which reactions are unfavourable and what is supportive. In this open space one can to get to know the complete person: he/she is much more than the speech challenges. This can counter discriminative stereotypes. It is further vital to demystify the misconceptions on cause and cures to undo PWS from the responsibility of requiring the stammer, which potentially leads to complaining, blaming and punishing the PWS plus certain expectations on how to manage it. Moreover this can make acceptance of the stammer less challenging, which can enhance managing it. Being aware of the fluctuating nature of stammering will prevent people interpreting the person to be pretending. Furthermore it is important to be aware of this in the professional context. People who conduct job-‐interviews should not generalise the potential dysfluency during the interview to every situation or context in order to provide equal chances to be hired. PWS in Ghana can make a change by coming together like in GSA, support each other, raise awareness. Through this they can challenge restricted participation in the domains of in social life, school and work opportunities. This way they can tackle experienced barriers to increase their chances to participate and contribute to society to reach their full potential. To reduce challenges, improve experiences and support PWS, people in the social network can undertake various actions. Parents could support their children for example by not pressuring the child to speak fluent but rather give the opportunity to talk freely and feel comfortable while talking. Talking about stammering and its related experiences can demonstrate acceptance and support the child in coping with difficult experiences. Friends and siblings can be of support through accepting the PWS, encourage and demonstrate patience. Many of the impacting experiences take place at school or during the educational years. Therefore, teachers could work on preventing bullying or limitations and support actively and consciously the pupil who stammers. For instance, some experiences of students suggest that even though it is difficult to read out loud and answer questions in class, being given the opportunity at school is seen as important
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to reduce the fear of speaking in public and to be able to demonstrate understanding of taught subjects. Hence, students should not be forced but rather encouraged to feel comfortable enough to try and practice while unfavourable reactions of peers are prevented. Further, a teacher with awareness of stammering could pass information to parents to reduce misconceptions and advice or work together with the parents to offer appropriate support to the pupils who stammers. The awareness of stammering could be enhanced during teachers training at colleges, universities or through sensitisation projects with schools. In the context of Ghana, the church community and religion can be significant supportive actors. Participants report to experience encouragement through their faith. The church community can be a place for PWS to feel comfortable to participate in social activities and experience acceptance and belonging. People from different backgrounds and professions attend church services, therefore this could be a location for PWS and GSA to organise sensitisation projects in order to enhance the awareness and provide correct information about stammering to reduce undesirable reactions and perceptions that have an unfavourable impact. For example through personal testimonies combined with accurate information. The third theme portrays possible supportive factors within the person who stammers. A person can explore and develop intrinsic strengths and talents in order to counter impact of stammering. Further experiences illustrate ways of how participants manage their stammer. These examples could inspire or be considered to be supportive by a PWS. For example searching how to create a comfortable context, challenging oneself or work towards acceptance and disclosing. The potential widespread impact of stammering implies the requirement for available and affordable professional support. Therefore, there is an urgent need for more trained speech therapists in Ghana and more spread over the country in order to provide support to all PWS in Ghana. The awareness on stammering could be increased for many other professionals like health and social workers, psychologists, amongst others, in order to recognize children and adults who stammer and provide appropriate information or referral for support. The professionals can also be in the position to interact with the parents to inform them about stammering to reduce unfavourable reactions and to improve support.
4.3 Limitations and strengths of this study and suggestions for further research A limitation of this study is the lack of an official diagnosis for the participants’
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stammer. Due to limited number of speech therapists in Ghana and other reasons that can still be researched on, most PWS are not diagnosed. Due to budget constraints, the research could not seek official diagnosis of the participants’ stammer. However, during the interviews, dysfluent speech was clearly observable for most of the participants. For some, it was less prominent but still noticeable. Observations of the researcher describe different characteristics of stammering, such as blocking and silence or repetitions of words and sounds. The participants describe the severity themselves which can vary with time and context. Participants of this study were contacted through the Ghana Stammering Association (GSA). GSA is a young organization often found by the members through an internet search on stammering. The personal initiative for this search could imply that many members are determined and motivated to manage their stammer (Anderson & Felsenfeld, 2003). This motivation and determination could likewise be present in educational attainment, confirmed by most participants in this study with multiple achievements in education. Individuals with more severe stammer or higher anxiety in several communicational settings that correlate with overall poorer educational accomplishments or academic performance (O’Brian et al, 2011; Blood et al, 2001), might not have been able to find their way to GSA or are not reached yet by GSA and therefore are not represented in this study. Further older generations are not yet connected with GSA. The background of the researcher and most available literature is different from participants’ background. The differences in background could reduce recognition by participants. It could also have increased the stress of the participant during the interview concerning their speech. Therefor the researcher worked closely together with GSA and the local Speech therapist to adapt the research approach to what was most appropriate to the context. Several modifications took place based on their feedback. Additionally the research was continuously and spread over a wide period of time, one year, allowing thoroughness and deeper insight. After the first interviews, feedback was asked on how to approach and improve attitude during an interview. Extended, personal and detailed interviews confirm how comfortable the participants were. Afterwards copies of the transcribed interviews were sent back to each participant allowing to add, remove or adapt any content, as they preferred. The difference in background could influence as well the coding and analysis of the interviews. More steps of the analysis could have been brought back to participants for them to revise. Time limitation, response speed and geographical distance from participants restricted this. However, the resulting themes and quotes from the interviews that supported each theme were sent to all participants and founder of GSA for feedback. Eleven of the seventeen participants and the founder of GSA responded before handing in this study and confirmed that the themes represent
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their experiences accurately. Participants received as well a copy of the full research report. Multiple experiences shared in this research are retrospective of adult describing memories while growing up. It is possible that negative experiences are remembered more vividly (Daniels et al., 2012). Therefore, specific questions were asked for positive and supportive experiences. Qualitative research has proven to enhance insight on stammering (Bricker-‐Katza et al, 2013; Corcoran & Stewart, 1998; Crichton-‐Smith, 2002; Klompas & Ross, 2004). This study gathered personal experiences situated in their context. Discussion of the revealed themes portrayed the complexity of stammering experience by discussing the connection and interaction of different factors. This allowed illustrating the P & A Model, representing the multifactorial nature of stammering (Packman, 2012) with individual experiences. This can broaden the understanding and insights of (theoretical model of) stammering. The goal of this study is to explore experiences of PWS in Ghana and reveal themes that enable support for participants, PWS and their environment. Further the themes can be applied as fields to explore the specific experiences of a PWS, in order to find adapted, to those experiences, ways to support a person to counter or prevent impact. This research explores a context that hasn’t been researched before on the particular topic of stammering, in Ghana. Applying quantitative research would narrow the field being explored, because options would be limited through pre-‐determined questions (Plexico et al, 2004). Therefore qualitative interviewing is the most suitable to explore a wide range of experiences, giving space to capture those of which there is no previous knowledge or literature available (Van Hove & Claes, 2011). In addition, qualitative research allows collecting broad and detailed information (Van Hove & Claes, 2008) situated in its context (Plexico et al, 2004). This is in order to generate hypothesis rather than test hypothesis (Van Hove & Claes, 2011). The open research questions of the interview explore three major contexts in a person’s life, family and social context, educational and professional context. This offers many experiences to discuss. An interview time of one to two hours can therefore be limited to discuss all the experiences and in detail. Moreover, a person who stammers could need more time to formulate their thoughts and talking continuously could be tiring (Minichiello et al., 1999 in Hearne et al., 2008). On the other hand these broad interviews give an overview of common and more
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unique experiences related to stammering throughout the entire life. This allows participants to assign what is important to them in this context. The study does not explore one context or one factor in depth. However, it explores a broader overview of several contexts and factors in an attempt of mapping the field of stammering experiences. The phenomenological approach states that people who experience stammering, can offer broad descriptions that permit clarifying the central outline of the phenomenon (Moustakas, 1994 in Plexico et al, 2004). In this way the present research offers a basic structure, which further research can broaden and refine to continue mapping the field of stammering. There are multiple further researches required in the context of Ghana or West Africa. This study is explorative research and has highlighted several important aspects of the stammering experience. Further research can focus on each aspect explored and investigate broader and generate more deep insight per aspect. This can be completed for example for the experiences at school, in social life, with family and at work. A more specific topic can be career choices made by PWS and how the job search and interview is experienced and influenced. Furthermore, the results of present study highlight particular reactions and perceptions of the environment. Specific research on perceptions with different parties such as teachers, parents, health workers, employers etc., is wishful given its potential wide impact and contribution to understanding the complexity of stammering experiences. More qualitative research can be conducted on experiences of PWS involving different age classes of participants, and different backgrounds of education in order to broaden and refine the continuum of reactions, perceptions, awareness, impact and supportive factors. The captured experiences, broad potential impact and assumed high prevalence demands for quantitative research to define the prevalence of PWS in Ghana and other countries in (West) Africa. Furthermore, many participants mention a family member with a stammer, what could motivate the research on inheriting factor of stammering. If the prevalence of PWS is higher than 1 % of the population it could be interesting to research the causing factor like inheritance, lack of professional treatment or early support and guidance.
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5. Conclusion The stories of participants in present study offer a rich insight and understanding in the complex nature of stammering. Early experiences as the lack of sharing difficulties, being laughed at and punishment, attaches stammering to distressing emotions such as fear and sadness. This combined with experiencing frustration and embarrassment when hindered to express oneself. Subsequently it can instigate participants to escape these experiences through restricting participation. Growing up, reactions and perceptions can become rooted, resulting in participants having to deal with stigmatisation and discrimination. Experiencing this sequence in certain contexts can influence the fluctuating feature of stammering in these settings. This process can either be intensified or countered by either unfavourable reactions and subsequent restricted participation or reactions of acceptance, encouragement and understanding. Further it can be intensified or countered by the own personality or countered through developing talents or undertaking actions to deal with stammering (see figure 2). The numerous experiences of participants demonstrate different existing misconceptions about stammering as to cause, how to deal with it and perceptions. This goes combined with pronounced unawareness of the impact of the reactions on the person who stammers, the presence and impact of endured emotions, restricted participation and the fluctuating nature of stammering. Before, professional therapy support can come from different directions. From family, friends and teachers through talking about stammering, understanding what it is, avoiding unfavourable reactions and demonstrating acceptance and patience. Support can also arise from within the PWS, through personality and talents strengthening resilience. Further different kinds of actions can benefit managing the stammer. Religion can offer encouragement and meaning besides a setting enabling social participation and sense of belonging. However, these potential supportive elements still appear to be limited, in this context, when compared to the described challenges. This implies there is the need to break the silence surrounding stammering. PWS in Ghana can make a change by coming together like in GSA, support each other, raise awareness. This way they can tackle experienced barriers to increase their chances to participate and contribute to society to reach their full potential.
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Figure 2: Visualisation of Conclusion
Emotions &
Restricted participation
Managing of stammer
+ Personality &
talents
Straining and supportive Reactions
Speech Dysfluency
Genetic -‐Neurological factor
THEME 1
THEME 3
THEME 2
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Nederlandse samenvatting Inleiding De Ghana Stammering Association en de enige van de vijf logopedisten in Ghana die werkt rond stotteren, werken samen om meer bewustzijn te creëren rond stotteren. Er is een sterk vermoeden dat de prevalentie van personen met een stotterproblematiek in Ghana hoger is dan beschreven in de literatuur (1% van de populatie) -‐ dit moet echter nog bevestigd worden door onderzoek. Tot op heden is er nog geen onderzoek rond stotteren uitgevoerd in Ghana of in heel West Afrika. De beschikbare literatuur stelt dat stotteren invloed heeft op de verschillende levensgebieden van een persoon (Bloodstein et al., 2008) met beperkende gevolgen (Yaruss & Quesal, 2004). Opzet van het onderzoek Deze elementen hebben er toe geleid om, samen met begeleidende promotor en in nauwe samenwerking met GSA-‐oprichter Elias Apreku en logopediste Nana Akua Owusu, een kwalitatief onderzoek op te zetten, aanpast aan de context. Het onderzoek kreeg vorm rond volgende onderzoeksvragen: ervaringen van personen die stotteren (PDS) en het proces van stotteren beter kunnen doen begrijpen; vaststellen wat de huidige kennis is van de participanten en hun omgeving over stotteren; onderzoeken wat PDS als ondersteunend ervaren; het beleid informeren over de ondersteuningsnoden van PDS. In totaal werden zeventien (17) participanten in Accra en Kumasi werden bevraagd over hun ervaringen met familie, onderwijs, sociale context en professioneel leven. Na het uittypen van de interviews werd een thematische analyse er op toegepast. Bespreking van de resultaten aan de hand van de literatuur Misvattingen De bevindingen van deze studie tonen misvattingen aan rond oorzaak en ‘genezen’ van stotteren, zowel bij de participanten als in hun sociaal netwerk. Zoals: de stotter die blijft ‘plakken’, wanneer men iemand imiteert. Of, consistent met eerder onderzoek, mensen die denken dat de persoon die stottert simuleert, omdat de stotter niet constant is (Flynn & St. Louis, 2011). Beide verklaringen leggen de verantwoordelijkheid voor het ‘krijgen’ van een stotter bij de persoon zelf. Verder horen participanten mythes over hoe ze hun stotter kunnen genezen of ervan af geraken. Genoemde misvattingen kwamen ook voor in eerder kwalitatief onderzoek en perceptie-‐onderzoek (Hearne, 2008; Craig et al., 2003; Hughes et al., 2010; Langevin, 2009).
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Een meer accurate opvatting over de oorzaak van stotteren bij enkele participanten in de huidige studie (PHS) is de opvatting dat de stotter aangeboren en/of erfelijk is, omdat men een familielid heeft dat ook stottert. Dit wordt bevestigd door de vaststellingen in genetisch onderzoek (Dworzynski, et al., 2007; Rautakoski et al., 2012). Ongewenste reacties van de omgeving Naast misvattingen moeten PHS omgaan met negatie en/of ongewenste reacties en de impact daarvan. Zoals in eerder onderzoek beschreven, groeiden ook deze participanten op in een context waar het beperkt tot onmogelijk is om over stotteren en gerelateerde ervaringen te praten (Blood et al., 2003). Hierdoor kunnen minderjarigen alleen staan met moeilijke ervaringen en leven met de opvatting dat stotteren niet aanvaardbaar is (Hearne et al., 2008). Participanten rapporteren reacties van familieleden zoals klagen, verwijten en fysieke straffen voor het niet vloeiend spreken. Afstraffen gebeurt ook op school, waar leerlingen frequent verkeerd begrepen worden als de spraak blokkeert en ze niet kunnen antwoorden. Deze ervaringen tonen duidelijk aan hoe stotteren de relatie met ouders (Klompas & Ross, 2004) en het dagelijkse schoolleven (Blood & Blood, 2004; Davis et al., 2002) beïnvloedt door onbegrip en ongeduld (Erickson & Block, 2013). Het schoolleven wordt verder beïnvloed door het frequent uitgelachen worden als men stottert. Dit komt zowel voor in het lager onderwijs met groot risico op pesten (Davis, et al., 2002), alsook in het middelbaar onderwijs waar adolescenten die stotteren evenzeer het doel van pesten kunnen zijn (Evans et al., 2008). Eens men volwassen is, gebeurt dit occasioneel zoals voor de participanten in Klein en Hood (2004). De verschillende percepties meegedeeld door PHS bevestigen dat de meeste personen die stotteren stigmatisatie ervaren tegen dat men volwassen is (MacKinnon et al., 2007; Blood et al., 2003). Dit is herkenbaar in de stereotyperende beschrijvingen van PHS zoals stil, timide en antisociaal, -‐ vergelijkbaar met verlegen, nerveus en introvert beschreven in perceptie-‐onderzoek van PDS (Silverman & Paynter, 1990; Ruscello et al., 1994). De algemene verwachtingen om vloeiend te spreken, labelen PHS als anders, niet normaal en invalide. Dit wordt discriminerend wanneer vloeiende spraak een voorwaarde is voor een job als journalist, lesgever of receptionist. Dit wordt ook beschreven in onderzoek dat PDS niet geschikt ziet voor beroepen zoals lesgeven, verkoop en advocaat (Swartz et al., 2009). Moeilijke emoties en beperkte participatie
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Participanten van de huidige studie beschrijven verschillende gevoelens en beperkte participatie. Dit bevestigt dat de ernst van de impact van stotteren verder gaat dan de frequentie van de stotter (Erickson & Block, 2013) en psychologische en sociale gevolgen heeft (Iverach et al., 2009; Tran et al., 2011). De domeinen waar deze emoties en beperkte participatie ervaren worden, zijn grotendeels dezelfde domeinen waar de besproken misvattingen en ongewenste reacties plaatsvinden. Wat bevestigd wordt door onderzoek dat stelt dat negatieve zelfperceptie en sociale angst leiden tot het verbergen van de stotter en het vermijden van spreken aan de hand van verschillende strategieën (Crichton-‐Smith, 2002; Erickson & Block, 2013, Beilbya et al., 2012) door voorgaande negatieve communicatieve ervaringen (O'Brian, 2011; Daniels et al., 2012. De meest naar voor komende emotie uit de verhalen van de participanten is angst. In het onderwijs is dit tijdens het stellen en beantwoorden van vragen, voorlezen of presentaties, gelijkaardig als in Daniels et al. (2012). Als gevolg van deze angst gaan PHS het antwoord fluisteren aan een buur, het voorlezen of een bepaalde les skippen. Deze strategieën werden eerder gerapporteerd (O’Brian, 2011; Daniels et al., 2012) en bevestigen de impact van stotteren op schoolparticipatie bij adolescenten (Erickson & Block, 2013). Dit kan ook de academische prestaties hinderen (Klompas & Ross, 2004; Crichton-‐Smith, 2002) zoals een PHS vertelt: zijn resultaten waren beïnvloed door het niet kunnen geven van presentaties. In het sociaal leven ervaren participanten in de huidige studie angst wanneer men iemand nieuw ontmoet. Omdat men, zoals in Plexico et al. (2009), niet weet welke reactie men kan verwachten. De bevindingen in huidge studie demonstreren dat dit participanten kan aanzetten tot gelimiteerd participeren in bijvoorbeeld conversaties of interacties met anderen. Dit wordt bevestigd door de literatuur die stelt dat PDS woorden, personen en sociale situaties kunnen vermijden (Corcoran & Stewart, 1998; Beilbya et al., 2012) met mogelijks sociale terugtrekking als gevolg (Blood et al., 2001). Dit is herkenbaar in PHS die niet deelnemen aan vrijetijdsactiviteiten of iemand die belemmerd wordt sociaal te zijn. Om vlotter te spreken gaat men synoniemen of vertalingen gebruiken of bijvoorbeeld alcohol drinken om relaxter te zijn, zoals participanten in Plexico et al. (2009) die ook woordsubstitutie of het gebruik van een middel toepassen. In de professionele context is een betekenisvolle bevinding dat PHS de keuze voor een beroep maken op basis van hoeveel men ervoor moet praten, zoals eerder voor ICT kiezen dan voor advocaat of acteur. In eerder onderzoek beschrijft men een zelfde keuzeredenering (Klompas & Ross, 2004; Crichton-‐Smith, 2002). Het tegenovergestelde, beroepskeuzes maken naargelang de persoonlijke interesses en talenten, werd ook gerapporteerd in voorliggende studie. Verder ervaren PHS grote
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stress bij een jobinterview uit angst voor de discriminerende gevolgen. Dit bevestigt eerder onderzoek dat stelt dat stotteren tijdens een interview of het uitvoeren van een job, de kansen doet afnemen om aangenomen (Klein & Hood, 2004) of gepromoveerd (Bricker-‐Katza et al., 2013) te worden. Verder ervaren PHS schaamte bij het stotteren en verdriet door ongewenste reacties, gemiste kansen en andere moeilijkheden. Deze gevoelens werden eerder gedeeld door PDS (Corcoran & Stewart, 1998; Plexico et al., 2004) en bevestigen dat schaamte en lijden psychologische gevolgen zijn van stotteren (Tran et al., 2011). Verder vertellen PHS over frustratie en kwaadheid wat de emotionele en mentale gezondheid kan beïnvloeden (Bloodstein et al., 2008; Menzies et al., 1999). Sommigen bevestigen dit door ervaren zelfmoordgedachten. Uitdagingen in het aanvaardingsproces PHS beschrijven de uitdagingen in het psychologische proces van het stotteren te aanvaarden. Moeilijkheden met stigmatisering en het accepteren van stotteren zijn niet verwonderlijk, gezien de negatieve beeldvorming die stotteren krijgt door de besproken ongewenste ervaringen. Meer specifiek: stilte rond stotteren, misvattingen over oorzaak en hoe elimineren, die dan leiden tot het verwijten en straffen van PDS, en het beschouwen van stotteren als onaanvaardbaar. Hierdoor kan het identificeren met gestigmatiseerd stotteren of labels verwijderend zijn (Link & Phelan, 2001 cited in Daniels et al., 2012) wat het gevoel, deel te zijn van, negatief beïnvloedt (Daniel 2007). Dit wordt ook in voorliggend onderzoek door PHS die beschrijven dat het erkennen en aanvaarden van en omgaan met stotteren afhankelijk is van de opvattingen van anderen en dat meer kennis en begrip, aanvaarden van stotteren bevordert. Het is opmerkelijk dat er toch ook participanten zijn die, ondanks hun deelname aan dit onderzoek, zichzelf niet zien als iemand die stottert. Het is belangrijk daarbij te vermelden dat de stotter niet ontkend wordt, en erkend wordt bij bepaalde woorden en situaties. Dit betekent dat men zich niet identificeert met het stotteren. PHS beschrijven het stotteren als fluctuerend doorheen de tijd en melden verhoogde moeilijkheden met vloeiend spreken in bepaalde contexten. Deze contexten zijn voornamelijk dezelfde als waar ongewenste reacties en ervaren angst beschreven werden. Dit is consistent met onderzoek dat stelt dat angst een rol speelt in stotteren. De fluctuerende vloeiendheid is gelijkaardig aan eerder beschreven ervaringen waar de vloeiendheid kan verschillen afhankelijk van de setting en hoe de persoon zich fysiek en emotioneel voelt (Klompas & Ross, 2004). Ondersteuning, therapie en intrinsieke persoonlijkheidskenmerken Naast de moeilijke ervaringen kunnen alle PHS ondersteunende ervaringen delen, afkomstig van omringende personen of intrinsieke eigenschappen. Dit bevestigt dat
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personen hun stotter kunnen beheersen met en zonder formele therapie (Anderson & Felsenfeld, 2003), waarbij de steun van het sociale netwerk de impact van ongewenste reacties, zoals pesten, aanzienlijk kan tegengaan (Hearne et al., 2008). Familieleden, vrienden of partners werden beschreven als ondersteunend door aanvaarding, begrip en aanmoediging, wat gelijkaardig is als beschreven steun in eerder onderzoek door openheid, eerlijkheid, begrip en respect (Beilbya et al., 2012). Hierbij spelen in de context van Ghana, kerkgemeenschap en geloof een belangrijke rol. Participanten beschrijven steun en doorzettingsvermogen te vinden in hun geloof. Door wekelijks naar de kerkgemeenschap te gaan, kan men participeren: koor of zondagschool zijn plaatsen van aanvaarding en ‘behoren tot’, door de afwezigheid van negatieve reacties of stigmatisering (Daniel 2007). Slechts een beperkt aantal PHS volgden professionele therapie, waarbij men, zoals in lijn met eerder onderzoek, zowel moeilijke als ondersteunende ervaringen beschrijft (Craig, 1998; Daniels et al., 2006). Anderen beschrijven het gebrek aan beschikbare therapie en de wens ernaar. Men is vaak niet op de hoogte van de mogelijkheid tot therapie in Ghana. Is men hiervan wel op de hoogte, blijkt het onbetaalbaar te zijn. Deze bevindingen, samen met het feit dat er slechts vijf logopedisten in het land werkzaam zijn, getuigen van het grote vacuüm aan beschikbare en betaalbare professionele steun. Intrinsieke persoonlijkheidskenmerken tonen zich in ervaringen hoe een sterke persoonlijkheid en talenten kunnen helpen de moeilijkheden tegen te gaan en het stotteren te beheersen. Dit werd eerder beschreven in hoe sterktes in andere gebieden en ervaringen van doorzetting en succes met andere talenten ondersteunend zijn om de impact van stotteren om te buigen (Plexico et al., 2004). In de bevindingen van de huidige studie, kunnen verschillende succesvolle factoren van het beheersen van stotteren, herkend worden, zoals gedragsmodificaties, vloeiendheid, modificatietechnieken, motivatie en determinatie, omgevings-‐verandering en attitudeveranderingen naar zichzelf en de stotter (Anderson & Felsenfeld, 2003). PHS gaan actief op zoek naar een omgeving waar men zich comfortabel voelt, wat de spraak bevordert. In tegenstelling hiermee spreken sommige participanten minder vloeiend wanneer men ontspannen is. Wat gelijkaardig is aan eerdere bevindingen waar men gemakkelijker stottert thuis of bij vrienden (Crichton-‐Smith, 2002). Dit kan betekenen dat men de reacties van deze interactiepartners kan inschatten, geen angst ervaart in anticipatie van negatieve reacties (Plexico, et al., 2009) en daardoor het niet nodig acht om technieken om stotteren te beheersen toe te passen. PHS wijzen op de nood om aan hun stotter te werken en passen daarvoor
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verschillende methodes toe. Bijvoorbeeld de tijd nemen om traag te spreken, aandacht schenken aan hun ademhaling en hun spraak oefenen. Dit zijn voorbeelden van de succesvolle factor modificatietechnieken (Anderson & Felsenfeld, 2003). Een andere manier waarmee PHS aan hun stotter werken is zichzelf uit te dagen en hun comfortzone te verlaten. Dit getuigt van de succesvolle factor ‘motivatie en doorzettingsvermogen’ (Anderson & Felsenfeld, 2003) en de factor ‘risico’s nemen’ die angst en vermijden kunnen doen dalen (Plexico, 2009). Vervolgens is het verhogen van zelfvertrouwen ondersteunend gebleken voor PHS. Dit ligt in lijn met participanten in eerder onderzoek waarbij logopedie hun zelfvertrouwen verbeterde (Klompas & Ross, 2004). Stotteren aanvaarden wordt door PHS beschreven als bevorderlijk voor het werken eraan. Dit wordt bevestigd door onderzoek waar gesteld wordt dat aanvaarden een kenmerk is van de continue activiteit van het succesvol beheersen van de stotter (Plexico et al., 2004). Een volgende stap is waar PHS hun stotter openbaar maken, wat de angst doet afnemen en waardoor begrip bij de ander toeneemt. In Plexico et al. (2009) rapporteerde men dat dit naast angst ook vermijden doet afnemen. Verder stelt literatuur dat het faciliteren van het begrijpen van stotteren, misvattingen kan tegengaan (Bricker-‐Katz et al., 2013). Bovendien ontdekte onderzoek dat personen die hun stotter erkennen, positiever gepercipieerd worden dan zij die dat niet doen (Collins and Blood, 1990 cited in Klein & Hood, 2004). Hieruit blijkt dat uitdagingen niet enkel moeilijkheden maar ook mogelijkheden brengen om te leren en verborgen sterktes en talent naar buiten te laten komen. PHS ervaren dit bijvoorbeeld door het verbeteren van hun algemene probleemoplossingsvaardigheden, het vinden van de doorzetting om hoofd van een succesvolle organisatie te worden, of door talenten te exploreren gecombineerd met de motivatie om hard te werken en daardoor een veelbelovende grafisch ontwerper te worden. Conclusie en implicaties De verhalen van de participanten bieden een rijk inzicht in de complexiteit van het stotteren. Vroegtijdige ervaringen zoals het gebrek aan uitwisseling over stotteren, uitgelachen en gestraft worden, -‐ verbinden stotteren met moeilijke emoties zoals angst en verdriet. Daarbovenop komen de gevoelens van frustratie en schaamte wanneer men zichzelf niet kan uitdrukken. Als gevolg kan men hieraan willen ontsnappen door sociale participatie te beperken. Deze gebeurtenissen in bepaalde contexten kunnen de fluctuerende aard van stotteren beïnvloeden in deze settingen. Eens volwassen kunnen ingewortelde reacties en percepties, participanten
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stigmatiseren en discrimineren. Dit hele proces kan versterkt of tegengegaan worden door respectievelijk ongewenste reacties gevolgd door beperkte participatie, ofwel reacties als aanvaarding, ondersteuning en begrip. Hierin spelen de kracht van de eigen persoonlijkheid en het benutten van de eigen talenten ook een belangrijke rol samen met het actief omgaan met stotteren. De diverse ervaringen van participanten tonen aan dat er verschillende misvattingen bestaan over de oorzaak, het omgaan met en de perceptie van stotteren. Dit gaat gepaard met een beduidend onbewust zijn van de impact van de reacties ten aan aanzien van PDS, de aanwezigheid en impact van moeilijke emoties, beperkte participatie en het fluctueren van stotteren. Voordat men professionele hulp inschakelt, kan ondersteuning vanuit verschillende richtingen komen. Bij familie, vrienden en leerkrachten kunnen, door het spreken over stotteren, door het leren begrijpen wat het is, ongewenste reacties vermeden worden, en kan acceptatie en geduld groeien. Steun kan ook vanuit de PDS zelf komen door het inzetten persoonlijkheidskenmerken en talenten, wat de veerkracht kan versterken. Verder kunnen verschillende ondernomen acties het beheersen van de stotter bevorderen, zoals bijvoorbeeld een comfortabele context creëren, op de ademhaling letten of zich zelf uitdagen door de comfort zone te verlaten. Religie in het leven kan moed geven, een plaats bieden voor sociale participatie, en de PDS de ervaring bieden deel uit te maken van een gemeenschap. Deze ondersteunende mogelijkheden zijn echter nog beperkt aanwezig in de context van de participanten in huidig onderzoek, in vergelijking met de beschreven uitdagingen. Deze bevindingen tonen aan dat de stilte rond stotteren in Ghana doorbroken moet worden. PDS in Ghana kunnen het verschil maken door samen te komen, bijvoorbeeld binnen GSA, om elkaar te steunen, bewustzijn te vergroten en sensibilisering aan te zetten. Hierdoor kan men barrières doorbreken die PDS ervaren, om zo hun kansen te vergroten om te participeren en bij te dragen aan de samenleving als mensen die iets te bieden hebben.
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Appendix
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Annex 1: Call to participate in qualitative research around stammering Participants are invited to share their experiences to help improve understanding of the experiences of persons with a stammer in Ghana There has not been any research in Ghana yet that tends to give a better understanding of the experiences of persons with a stammer. In the whole of Africa there has been only one similar study in South Africa. This research intends to interview persons with a stammer individually and through focus groups about their experiences of having a stammer. It will also explore what it means to have a stammer in different stages of life such as education, work, social lives and any other experiences. I am a Master Student in orthopedagogy (a mix between social work and psychology) from Belgium. This research is being carried out as part of a master qualification and is supervised by Dr. Elisabeth De Schauwer, researcher at university of Ghent. As a master student researcher I aim to increase validity of the study by closely working together with Ghana Stammering Association (GSA) that is initiated and executed by persons who have a stammer and a speech Therapist, specialized in this matter. What does taking part involve? If you decide to take part, you participate in an individual interview. This would last approximately one and a half hours to two hours. During this meeting you will be asked about your experiences of stammering. What are the benefits of taking part? Although you may not benefit personally from the interviews, by communicating your experiences of stammering, it is hoped that the research may provide better understanding and improve awareness of stammering in Ghana. Unfortunately we are unable to offer payment for taking part but your participation will be greatly appreciated. How do I take part? For further information please contact the researcher, Marianne Debrouwere (master student): Email: [email protected] GSA: [email protected] Ethical Issues If you decide to take part, you can withdraw at any point, without giving a reason and without any disadvantage to you.
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Annex 2: Informed consent Ghent University Consent to participate in qualitative research in the context to acquire a Master degree in Educational Science. An exploration of the experiences of persons with a stammer. I have read the participation information sheet relating to the above program of research in which I have been asked to participate and have been received a copy to keep. The nature and purposes of the research have been explained to me, and I have had the opportunity to discuss the details and ask questions about this information. I understand what is being proposed and the procedures in which I will be involved have been explained to me. By signing this form I give: 1. Consent to the digital audio recording 2. Consent to the transcription of interview data 3. Consent to the inclusion of anonymised interview material in the thesis and any publications or presentations resulting from it. I understand that my involvement in this study, and particular data from this research, will remain strictly confidential. Only the researcher involved in the study will have access to the raw data. It has been explained to me what will happen once the research has been completed. I hereby freely and fully consent to participate in the study, which has been fully explained to me. Having given this consent I understand that I have the right to withdraw from the program at any time without disadvantage to myself and without being obliged to give any reason. Participant’s Name …………………………..……………………………………………. Participant’s Signature……………………………………………………………………... Investigator’s Name …MARIANNE DEBROUWERE…………………………………. Investigator’s Signature……………………………………………………………………. Date: ………………………………….
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Annex 3: Questions for semi-‐structured interviews
• Introduction of researcher and the study
• Basic information Participant o Name o Age o Place of birth o Growing up o Education
• Could you tell about the moment you first realized you had a stammer?
• How would you describe the severity of your stammer?
o Could the severity change?
• Can you tell about your experiences o During Pirmary o During junior high school o During senior high school o During higher education: university or other o Teachers o Peers
• How would you describe
o Your performance in school o Your participation in the classroom o Your participation with peers beside the classroom o What role did stammering play?
• Can you describe your experiences
o After completing education o Selecting occupational choice o During job search
• Can you describe your experiences at work
o With employers o With colleagues o Communication at work o Promotion
• How would you describe your experiences with?
o With family and friends o In social situations, church? o Intimate relations
• Could you describe perceptions of others about speech challenges, yourself?
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• Does for you stammering play a role in: o Your sense of self-‐esteem or how you value yourself o Confidence in yourself o Overall health and physical well-‐being o Your identity
• How do you see your quality of life?
• What has/is supportive to you in dealing with your stammer or what you think can be supportive for others?
• Did you or are you attending speech therapy and what are your experiences with it?
• Has having a stammer had any positive effect in your life?