Supporting the Supporters: Some Issues to Ponder

blockAbout the author: Dr Susan Block is a specialist in stuttering assessment and treatment across the lifespan. She works at the Department of Human Communication Sciences at La Trobe University in Melbourne, Australia where she co-ordinates the undergraduate speech pathology course. Susan also co-ordinates the stuttering program at the university and is responsible for the academic and clinical experiences the students receive in the area of stuttering. The integration of teaching, research and clinical practice in stuttering is her interest. Susan has taught speech pathology students in a variety of university programs both within Australia and internationally. She holds honorary positions at James Cook University in Townsville, the Murdoch Children’s Research Institute in Melbourne and the Australian Stuttering Research Centre at the University of Sydney. She is also a Fellow of Speech Pathology Australia and a Life member of the Australian Speak Easy Association.

We have all read descriptions of stuttering as a multidimensional or complex problem affecting the individual in a variety of ways. The World Health Organisation’s (WHO) International Classification of Functioning, Disability and Health (ICF) (2001) considers the impact of a disorder such a stuttering from the perspective of limitation to social participation. Such limitation, if it continues into adolescence and adulthood, affects quality of life and well-being (e.g. Iverach et al, 2009), not just of the individual who stutters, but also their family members. Family members often provide ongoing support to each other, but more importantly to the person who stutters. This support can take many forms. It can also take a toll, both emotionally and financially.

Self-help support

One of the significant contributions of self-help organisations for those who stutter is the support they offer. This may be in the form of support to seek treatment; support to maintain fluency; support to accept stuttering; support to participate in social situations; support to enhance quality of life and support with general information about stuttering and treatment. But the provision of this support also comes at a cost. Generally such self-help support is provided by volunteers; usually those who have experienced stuttering themselves. These volunteers have a social conscience and are trying to improve life for those impacted by stuttering. They commit time to meetings, camaraderie and friendship, leadership and often financial resources to maintain support groups. This is often done at great personal cost. It is often unacknowledged and frequently taken for granted, even by those who benefit most.

Another contribution of self-help organisations, in this case for those who stutter, is that they can relieve caseload pressure for speech-language pathologists. With increasing waiting lists, access to ongoing treatment is limited. Access to sufficient treatment is limited. Access to treatment for fluency maintenance is limited, and access to treatment for relapse is limited. Treatment can be expensive and at times, inconvenient. In many cases, self-help groups can compensate, to a degree, for some of these issues. They can provide a consistent opportunity for ongoing practice and support. However, they can also sometimes become an alternative to formal treatment. This can heavily burden group leaders as well as individual group members.

If support groups are burdened by those who have different goals or requirements, then the needs of all members may not be met. Thus, it is essential that those attending self-help groups are clear about what their goals are and what is appropriate and possible in the group setting. Social support should include opportunity for social participation. Fluency practice should include ample and challenging opportunity for speaking practice in a range of situations. Emotional support should include opportunity for sharing experiences and reflecting. Each of these things can enhance well-being and quality of life of each of those in attendance. However, group leaders can often feel unprepared or out of their depth in self-help meetings. This is particularly the case if those attending have not had any or sufficient treatment for either their stuttering or any resultant anxiety they may be experiencing.

Where this is the case, it can be difficult for group leaders to include these people actively in their group sessions. In particular, if they are not able to cope with the speech, social or emotional issues and demands encountered throughout a meeting. Leaders and group members may not always have the resources to manage issues that can arise: issues such as new members who are stuttering markedly while everyone is trying to practise fluency strategies; people who are reticent to interact at all; people who are angry about their situation. In such cases, the ideal situation would be collaboration between the self-help group members/group leaders and speech-language pathologists.

Support from speech and psychology professionals

Speech-language pathologists have the education and experience to support those supporting self-help group members. Collaboration around managing a range of people with different levels of fluency, different goals and experiences, different levels of anxiety (and thus, preparedness to be risk-takers with their speech) can be extremely helpful to reduce burden for all concerned. Psychologists have the education and experience supporting those with a range of behavioural challenges. Collaboration around managing personal crises, avoidance, social anxiety and challenging behaviours can also be helpful to reduce burden for all concerned. However, what is challenging is how to provide this support in a way that will be acceptable to all concerned.

For support groups to work well their activities need to be relevant, well planned, challenging and enjoyable to members. One of the greatest challenges for leaders is incorporating challenges and variety into meetings. This provides an ideal opportunity for professional input in various ways. Student speech-language pathologists are generally enthusiastic and interested to meet and talk to people who stutter. Volunteering to participate in self-help meetings can fulfil two purposes: it can provide group members with different speaking challenges as well as different feedback; and it can provide student speech-language pathologists with valuable insights into the lived experience of stuttering. It also provides an ideal opportunity to practise their fluency management skills as well as developing their feedback skills. This can support group leaders by decreasing their need to manage every aspect of speech feedback etc. Speech-language pathologists themselves can also be rostered to attend a self-help meeting to provide some input and support for the leader in particular.

However, families and parents of those who stutter also need support. Speech-language pathologists need to ensure they actively include parents or family members in the treatment process where appropriate. Many speech-language pathologists work in school settings. This requires prior contact with parents to ensure they attend the school for their child’s treatment sessions. Often acknowledgement of the issues they are facing can empower parents in particular to be able to manage their child who is stuttering. It also can reduce the burden parents may be experiencing as they accompany their child on their journey through the treatment process. Issues that parents may need support for include general behaviour management, implementation of treatment strategies, dealing with reactions to stuttering, including teasing and bullying, and the potential relapse of fluency,

Facing some of the same issues as parents are teachers, child care staff and other family members. They need support and strategies for managing periods of stuttering. They also need support for how to cue for fluency, rather than having to repair stuttering. They also need support for managing (and ceasing) teasing and bullying, for which those who stutter are highly at risk. Support also needs to extend to the home to increase the likelihood of treatment strategies being used in everyday communication situations.

Support for speech-language pathologists

Supporting those who stutter as they embark on a journey to enhance their fluency, communication and well-being can be an uplifting and positive experience for the speech-language pathologist. It can also be a very difficult and burdensome experience. The therapeutic relationship can be difficult for the person who stutters who may be challenging not only their ability to change their motor system, but also their sense of identity. This may result in frustration, particularly with the person who is trying to motivate and encourage them to make and sustain change.

It has been clearly established that anxiety can occur as a result of moving through life stuttering (e.g. St Clare et al, 2008). Anxiety can make people withdraw (and thus, not engage in the treatment process), it can make them aggressive (and thus difficult to manage or interact with), and it can make them sad or depressed (and thus difficult to motivate or engage). As a result, ongoing counselling, both informational and affective is an essential part of the treatment process. Facilitating change can be difficult. Facilitating the maintenance of that change can be even more difficult.  Andrews and Craig (1988) identified the importance of an internal Locus of Control to have a positive long term treatment outcome. For those people who relapse, they may blame the speech-language pathologist for their lack of maintenance.

A further consideration is that for some people who stutter, they may be unable to afford ongoing treatment, thus be disappointed and frustrated with their treatment limitation. Limited access to treatment or to specialist treatment providers can also frustrate those seeking help. While the advent of telehealth delivery will ease this situation (Carey et al, 2009; Erickson et al, 2012) it still provides a challenge for many clinicians.

Members of self-help groups are frequently supporters of speech-language pathologists. Indeed, they are usually working towards common goals. Mutual respect can result in support and collaboration. Alternatively, there can be a divide between those in the self-help movement and those who do not stutter but work with those who do. Accusations of a lack of understanding of the true dimensions of stuttering if you have never stuttered can be disrespectful and hurtful to those who seek to help those who do stutter. Differences of opinion regarding what is useful for those grappling with stuttering – self-help from those who have experienced the condition or direct treatment from those educated in evidence based practice can cause conflict and frustration.

Evidence suggests that speech-language pathologists will choose to work in areas in which they feel confident. Similarly, they will choose to work with people with conditions of which they have had positive experience as students (St Lewis & Lass, 1981). If speech-language pathologists are not supported in their work with those who stutter, it is likely that they will not continue to work with those who stutter. Thus, it is essential that speech-language pathologists are supported by both their colleagues as well as their consumers. To lose people from the profession who are committed to work with those who stutter, due to a lack of support, would indeed be a pity. It would be a pity from the point of view of the support they can provide to those who stutter and their families; from the point of view of the availability of evidence based effective treatments, and from the point of view of the rewards for the profession and those who stutter from the changes they can facilitate in the lives of those with whom they work, in terms of increased social participation and enhanced quality of life.

References

Andrews, G. and Craig, A. (1988), Prediction of outcome following treatment for stuttering. British Journal of Psychiatry, 153, 236–240.

Carey, B., O’Brian, S., Onslow, M., Block, S., & Jones, M. (2009) A randomised controlled non-inferiority trial of a telehealth treatment for chronic stuttering: the Camperdown Program. International Journal of Language and Communication Disorders, 45, 108–120.

Erickson, S., Block, S., Menzies, M., Onslow, M., O’Brian, S. & Packman, A. (2012). Standalone internet speech restructuring treatment for adults who stutter: a pilot study. Journal of Clinical Practice in Speech-Language Pathology, 14, 3, pp. 118-124.

Iverach, L., O’Brian, S., Jones, M., Block, S., Lincoln, M., Harrison, E., Hewat, S., Menzies, R., Packman, M., & Onslow, M. (2009). Prevalence of anxiety disorders among adults seeking speech therapy for stuttering. Journal of Anxiety Disorders, 23(7), 928-934.

St Clare, T., Menzies, R., Onslow, M., Packman, A., Thompson. R. & Block, S. (2008). Unhelpful thoughts and beliefs linked to social anxiety in stuttering: development of a measure. International Journal of Language & Communication Disorders. 1-14.

St. Louis K. O. & Lass, N. J. (1981). A survey of communication disorders students’ attitudes towards stuttering. Journal of Fluency Disorders, 7, 49-79.

World Health Organization (WHO). (2001). International classification of functioning, disability and health. Geneva: World Health Organisation.

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Supporting the Supporters: Some Issues to Ponder — 37 Comments

  1. I thought this was a great paper. I haven’t really thought much about supporting the supporters, but it is so true.
    I am one of those people who often gets looked at as a leader, and often winds up leading groups and activities, and sometimes wind up feeling, “hey, what about me? My own needs aren’t being met!” But it’s hard to say that, when you’re trying to provide a forum or venue for others to have a voice or feel supported.
    As a woman who stutters, I’m always looking for opportunities where I can participate in group discussions or activities that will meet some of my needs as well as meet the needs of others.
    Thanks so much for reminding us of how important it is to support the supporters. We should also remember that the supporters have needs as well, and that sometimes they may go unmet.
    Pam

    • Thanks for your feedback Pamela. I think we need to acknowledge the work of everyone and publically thank individuals. Thinking of actions such as having group members confirm what they have found useful about meetings etc is one small way of doing this; having members discuss how they can contribute to the next meeting is another way of easing the burden for the leaders. Sue

  2. Thank you for writing this paper! I am currently a first year graduate student, and just last week I had the opportunity to lead a NSA group with another student clinician. This was a new experience for the two of us, since all we really knew about stuttering was from an undergraduate class. Overall, the group members said they really enjoyed themselves and thanked us for leading the group. My question to you, how do you approach situations in which someone is unable to afford therapy? OR How do you handle situations where the individual does not have a supportive family?

    • Good to hear you are getting involved Jolene! The issue of being unable to afford therapy is very difficult. Offering group treatment is a way of decreasing costs (but does not necessarily address all the needs of each individual). Where the individual does not have a supportive family, you need to consider who else in the person’s environment is available: siblings, relatives, teachers etc. A ‘buddy’ from a support group can also be very useful. However, if you are talking about young children, that is a very difficult issue as I see the parents as having prime responsibility for helping their child. Sue

  3. Dr. Block,

    What a great paper! I am a graduate student in Speech-Language Pathology and I found this paper to be very beneficial and relative to what I’m learning in my fluency course right now.

    You mentioned internal locus of control and how it has a positive long term outcome, but that some clients may relapse. As a future SLP, how can I be sure that if my client does present internal locus of control that they will maintain it? Are there any strategies? How do you respond to a client if a relapse would occur and they do blame you for the lack of maintenance?

    Thank you!
    Elizabeth

    • Thanks for the feedback Elizabeth! I should say that locus of control is only one of the prognostic indicators for fluency outcome – the others have been referred to as demonstrating normal attitudes to communciation and mastery of techniques (which in this context means severity). In fact, it seems that evidence suggests severity is the strongest predictor of fluency maintenance in adults to date. Thus, it is important to facilitate fluency strategies that help the person prevent the stuttering from occurring/or to help them gain control of their motor process of fluent speech production. We need to be careful that we are not in the blame game. Changing behaviour such as stuttering is very difficult for some people (and very complex for some)thus, we should be supportive if someone is relapsing or finding it difficult to maintain fluency. Behaviour change is challenging and difficult – whether you are trying to stop stuttering, stop smoking or lose weight etc. David Shapiro wrote about stuttering and the journey to fluency being a collaborative journey. We need to remember this. Also, many adolescents and adults are trying to manage what has become a chronic condition – and they will need perhaps a range of input at different times of their lives. If you are being blamed for relapse, it might be useful to check that your people with whom you are working understand what stuttering is and what they need to learn to do (assuming they want to work on fluency) and how you can help without them feeling guilty if they have trouble from time to time. Sue

  4. Hey Sue, great paper and views. How do you think support groups for PWS will change say over the next 10-20 years?

    • Thanks Grant! I think that support groups will become even more international as the world wide web continues to increase accessibility to information for a large number of people who stutter. I also think the groups will increase access to practice opportunities and support on the web (e.g.through web-based meetings etc). However, there is a balance that will be needed to ensure that information that is disseminated is identified as evidence-based or otherwise. I also think that the support groups will have a deeper penetration into countries where there is currently no treatment. This will put them under pressure to offer advice and treatment that may be difficult maintain on an individual basis. Resources such as the scenarios you have developed with the Scenari-aid resource are an excellent way to spread information about how people can help themselves with practice of fluency, desensitisation etc. I would like to think that support groups would promote this sort of resource rather than focus on providing ‘frontline’ treatment, which is not the stated purpose of many such groups – and it burdens some people who are trying to support others who stutter. Sue

  5. Very interesting article. You brought up great points about supporters that usually don’t every get mentioned or thought about. I do have a question, though. In your experiences, how have you helped a person who stutters who also has severe anxiety issues? Is there a specific approach you would take with these types of clients?

    • Thank you for the comment! I would usually ask the person how anxious they felt about speaking, look at some anxiety measures and discuss whether they wanted to work on fluency/speech strategies first or whether they feel the anxiety is their priority. Some people will indicate that they feel they are anxious due to their stuttering. They will choose to learn some fluency strategies and then assess whether they experience less speech related anxiety. Indeed, for many people this is the case. However, for those people who feel so anxious that they cannot put fluency strategies into practice, they need different support as well as speech treatment. In the first instance it may be direct counselling and support or it may be informational counselling. However, in the case of severe anxiety, it may be a referral to a psychologist for some anxiety management strategies (e.g. cognitive behaviour therapy). There are currently some investigations underway with web-based self-administered anxiety reduction programs. Ideally, for those who experience severe speech related anxiety, you would aim to ensure they had good psychological support as well as good speech treatment. You might also keep in mind, not everyone is ready to seek psychological support when it might seem most appropriate. People grappling with stuttering often seek help from a speech-language pathologist first, then they might feel help with their anxiety might be important after that. Support groups of course can help some people who are experiencing speech-related anxiety. Similarly, having part of the speech treatment in a group context can also be useful for some people. Sue

  6. Dr. Block,

    Thank you for the thorough overview of supporting those who support the stutterers. As a graduate student in speech-language pathology, I feel grateful that our program supports our choices for whatever area in the field we would like to pursue as a clinician. I think the following statement from your paper is very true: “Evidence suggests that speech-language pathologists will choose to work in areas in which they feel confident. Similarly, they will choose to work with people with conditions of which they have had positive experience as students (St Lewis & Lass, 1981)”. I want to think about this more as I consider what area in speech-language pathology I would like to puruse. I want to make sure I am not “avoiding” certain areas in our field because of insecurities or perceived disappointment or ineffectiveness.

    Thanks for stimulating my thinking,
    Renee R., student clinician
    Idaho State University

    • Hi Renee, I hope you get some clinical experience with people who stutter while you are at university. It is a great field to work in and! Sue

  7. Dr. Block,
    As a second-year graduate student beginning to work with clients who stutter, I found your article very informative. In the article you mention that teachers, childcare staff, friends, and other family members also ‘require support and strategies for managing periods of stuttering’. What types of general strategies are most helpful for these people in the child’s life? What types of activities/ideas do you have for addressing bullying in a school setting? I feel that this is a very important subject to address in a school setting. I also liked the fact that you acknowledged that SLPs should consult and collaborate with psychologists, as we are not always equipped to deal with or manage mental health issues in our clients. It is important for SLPs to have a balance in working with people who stutter regarding counseling and therapy for stuttering. I look forward to your response!

    Marissa

    • Marissa,
      I think it truly is important that SLP’s collaborate with other professionals so that we are able to best meet the needs of our clients! Looking forward to hear Dr. Block address your questions!
      Kerry

    • Hi Marissa (and Kerry), I think parents in particular need support and information so they can feel optimistic that they can facilitate fluency in their child. They need information to ensure they do not feel guilty that they may have caused the stuttering. They need lots of support re how to manage the treatment process in the course of their daily lives. Strategies such as how to reinforce and when to do so (e.g. as in the Lidcombe Program) are essential. How to listen accurately to their child is also an important strategy as this is an important part that will affect our decision making in each session. They often just need help to manage their day so that there is sufficient opportunity to carry out what they often know they need and want to do, but it times get distracted from doing.
      This issue of teasing and bullying at school in particular is very worrying. Teachers need information from us about stuttering and how inappropriate comments etc can impcat on the child who stutters. They need feedback from us about the individual child’s responses to the classroom and talking demands – and then suggestions about how to ensure the classroom is a safe place to talk. Thus, we need to think about how to talk about stuttering in the class (if that is appropriate) and how to help teachers facilitate fluency. If the focus is not on fluency, but the child’s reactions etc, concepts from CBT should be discussed. This is where liaison with school psychologists is important, but we need to oversee the child at school to ensure they are receiving sufficient and regular support.

  8. Dr. Block,
    Thank you so much for writing this article. It gives me a different perspective on my own clinical experiences so far and like Renee mentioned how these experiences will shape my future work setting and clientele. I agree that support is an essential part of therapy for all members involved. My question, however, is about the support involved with my current client. Dr. Shapiro and I have a 20 year old male and the family has gone to an extreme supporting him that has now led to severe social deprivation. It has come to the point where I work with the client on social/fluency goals while Dr. Shapiro is with the family and we have goals for the family to experience daily social interactions with others. We are now switching our roles as clinicians and I am nervous about how to explain the implications of social isolation to the parents without offending them. The client is open to new experiences and is willing to learn typical social interactions. I understand it’s difficult to adapt the level of support for each specific client, but from your experience, how much support would be typical for a 20 year old and should I build off a hierarchy of slowly decreasing support? Also, I am looking into forming a social group for PWS and do you find that many people attend these meetings regularly once a month?

    • Hello Abby, It is indeed difficult when someone is as socially isolated as your person sounds. It may be an appropriate time to suggest some work for the family with a psychologist who cqan challenge some of the behaviours and help the family (and the client) change or feel confident enough to try some change. It sounds like the issues are complex and more than solely the speech. Sue

      • Thank you very much for your response. I am actually meeting with the family tonight, so I will look into local psychologists. Your comment is greatly appreciated!
        Abby

  9. Dr. Block, I enjoyed your article! It brings to light the need to support those who support stutterers. I am an graduate student and I have very little experience with clients who stutter. I am interested in support groups for PWS. In a support group, how do you design activities to be relevant, well planned, challenging, and enjoyable for all members of the group? If the members are all in different emotional states and have different personal goals, I was just wondering how you can personalize a support group to fit each person’s needs! I think support groups are so wonderful because they help PWS realize that they are not alone.

    Thank you so much!

    Kaitlan Bryan

    • Hello Kaitlin, the first thing to consider is what are the goals of the support group. In Australia, the Australian Speak Easy Association has as one of its main goals: to support the person maintain the fluency thay have learned in treatment. This assumes they have some strategies which they want to maintain. Thus, most meetings here would have a fluency focus for a large part of the meeting. However, some support groups want to offer support to feel comfortable if you do stutter, or to educate people about what it is like to stutter etc. The groups in Australia are run by people who stutter and are working to maintain fluency. Thus, in some states here, speech pathologists offer support and involvement only when asked. In some places, the groups need a speech pathologist to maintain some constructuve momentum or they may support a group as it starts up.
      I guess the first thing is to check what the members want to achieve and see why they are coming along. I do not think you can always meet every individual’s specific goals, but they need to be sufficiently wedded to most of what happens to feel they will benefit. If someone wants to come to practise social chit chat, there needs to be opportunity for that; if someone wants to practice commenting, there needs to be opportunity for that; if someone wants to talk about how to manage a situation at work there needs to be opportunity for that.It does vary according to each group composition. Sue

  10. Hello Dr. Block,

    As a Speech-Language Pathology graduate student, I have enjoyed reading all of the wonderful papers posted this year. I feel that each one is a puzzle piece to developing a well rounded clinical perspective. Parental training is one aspect of fluency treatment where I anticipate potential difficulties. Through my studies, I have heard many stories about how parents responded in harmful ways, with the best of intentions. Do you have any suggestions about how to approach a parent who believes they are being supportive, but are actually harming/hindering their child’s communication?

    Thank you,
    Jennifer Castleton
    Idaho State University

    • Hi Jennifer
      I would approach this with caution. We are not in the blame game, so we do not want parents to feel guily about what they are doing. If their behaviour is not leading to change in their child, you could suggest making some small changes to see whether they can facilitate fluency by doing something a little differently. It also would depend on what they were doing. Changing approaches to how they manage their child is a much larger issue for example than changing what they say or how they react when their child stutters. Sometimes a parenting course is timely and helpful – which is why a lot of kindergartenns offer these for parents,as that is the age when many of us struggle with challenging (but normal) behaviour in young children.
      Sue

  11. Hi Dr. Block,

    As a 2nd year grad student, I am lucky enough to be a part of a new NSA group starting in my area. I also like the idea of making an effort to support the supporters. I was wondering if there is a model for a supporters group or would your recommendation be that the supporters are involved in the same group as the PWS?
    Also, during my medical externship I saw 9 SLP’s run out of the room when a volunteer was needed for a client with fluency concerns. As a soon-to-be graduate, I immediately saw a niche! As I only have a few hours working in a clinical setting with this demographic, do you have any advice regarding how to become a skilled “go-to” SLP in my area?

    Thank you,
    Michelle Beaver
    Redlands University…go bulldogs!!

    • Hi Michelle, well I do not know about the bulldogs, but the Hawks won our grandfinal – so …go hawks!!!
      I know that the Australian Speak Easy Association did have a session for families at one of their conferences – to look at support, among other things. However, I am not aware of a model in this area. Support can take many forms – acknowledging the support, educating supporters, providing an opportunity to debrief ect. It really depends what they would like as that will influence what you can offer as well as when and where.
      TO become the person known as having the interest and thus developing some expertise in an area probably means you need to promote yourself as someone who is happy to see people who stutter or to provide some discussion or help for your colleagues in terms of management etc. You could look at the Specialist courses run by the Stuttering Foundation as they provide clinicians with some specialist knowledge in the ares.
      Good luck, Sue

  12. Hi Sue, very good to have the problems facing SLPs clearly described. I speak as a self-help group leader in Perth during the late 90’s, where I struggled to integrate people who didn’t fit the mould of well-adjusted fluency practice and who had deeper problems. Interesting how the needs of SLPs mirror the problems of support group leaders – groups who can sometimes become antipathetic even though they struggle with exactly the same problems.

    My question is how to make the very best use of interaction time between people who stutter and SLP students. By way of background, in London, England, City University’s speech and hearing department had a programme where students met with people who stutter and those with stroke induced aphasia. These meetings were for academic credit – much to the credit of course head, Roberta Williams, who facilitated the sessions, along with other staff. Thus core areas were discussed – personal change, identity, autonomy, and client/therapist relationships.

    There is a scheme here in Canada at Ottawa that I want to support, now I am involved with the Canadian Stuttering Association. If you have a similar programme at LaTrobe, what stands out as the most effective way for SLP students to gain the most lasting insight and value from such meetings?

    Many thanks,
    Andrew Harding

    • Hi Andrew, nice to hear from you – and I hope you are enjoying life in Canada! The students from La Trobe University do a visit to a Speak Easy meeting where they have prepared a speaking activity in case the group leader would like to do something different. They are advised to actively participate (which usually involves participating in practice tasks or giving feedback re strategies etc). The students report this as an extremely valuable and enjoyable experience as they can talk to people about their stutttering and how it affects them and how they are managing to maintain their fluency. The group members report they like the varaibility of having students there (who are usually enthusiastic!)and they present a challenge to speak to. We also try to have people who stutter come to speak to students during their academic program about various aspects of stuttering. Speak Easy members also come to the intensive treatment programs we run to speak to prospective members about the benefits of joining the Association. We also have films of a variety of people talking about their experiences stuttering or with treatment. These films accompany some of the resources available as students move through their course.

  13. Hi Dr. Block,

    I really enjoyed reading your paper. I found it to be very insightful and informative. I agree, “Evidence suggests that speech-language pathologists will choose to work in areas in which they feel confident” and I find this to be very motivating as I discover which area in speech-language pathology I would like to further my interest in. As of right now I know I would like to work with children, particularly in a school setting. I know that an important part of a speech therapist’s work is the counseling and support you provide individuals and families with (as you discussed in your paper), as well as teaching them how to cope with the stresses associated with stuttering. However, I am curious as to how speech language pathologists deal with stress themselves. Although a speech therapist’s job is not physically demanding by any means, it does require patience and compassion, as progress may be slow and halting.

    My question to you is: have you ever felt emotional strains or stresses yourself when working with an individual? If so, can you give an example? What kind of support did you seek out at the time? As a graduate student who is interested in working in a school setting one day, what kind of support do you recommend?

    Thank you,
    Christie Driscoll
    Graduate Student in Communication Sciences and Disorders
    Western Carolina University
    Cullowhee, NC

    • Hi Christie, you bring up an important issue – how we deal with stress in the workplace. If you are working in a team, I think it is imperative that everyone looks out for everyone else in the team. Speech Pathology Australia also has a mentoring system in place to support new graduates – and that would include all sorts of support. I use my colleagues for support – if I am concerned about how to manage parents reactions (or adolescents in particular) if they are very stressed about their speech and its implications. We also have a counselling service at the uni for staff as well as students, and that can be helpful. However, I do try to keep in mind, that the work I am doing in clinic is not about me; it is about how I can advocate best for my clients. Thus, I try to ensure that we end each session with an action plan of some sort – so they can feel optimistic (and I can too). Good luck! Sue

  14. Hello Dr. Block,

    Thank you for sharing your thoughts with us. Your call for more support for the supporters is very insightful. I am also glad that volunteers are a part of the process because if they weren’t, many things would NOT be possible.

    I am from Oakdale, Minnesota (a suburb of Minneapolis/St.Paul)and I looked up support groups to attend and there were VERY few. I contacted the names I received from the Minnesota chapter of the National Stuttering Association and only received information about one group that meets near my home and it was at the University of Minnesota. They are still limited in resources and support even though we have a decent amount of speech language pathologists compared to other cities.

    I agree there should be general objectives at each meeting so people attending those meetings get something out of it whether it is fluency enhancement practice or a place to express their feelings. I do agree that there needs to be more support but I don’t know if people in our field are able to or willing to invest time in training volunteers to run group meetings. Based on my experience, the SLPs I know are already strapped for time in whatever setting they work in.

    Do you think a viable solution would be to hold free accessible training classes for volunteers? Maybe there needs to be a place where SLPs or volunteers in an area to meet and talk about ways to improve support for those who are support people who stutter. Communication may be the best starting point.

    Thank you.

    Sincerely,
    Wa Yang
    Idaho State University Graduate Student

    • Hi Wa, from time to time speech pathologists have run group leader training days for members of Speak Easy in Victoria (the state I am in). Also, Speak Easy have a group leaders training kit they developed, with input from speech pathologists, to help group leaders with some ideas and skills. Now, several of the leaders have excellent skills themselves (through their workplaces etc). We also offer refresher sessions which some group leaders come to – to ensure they can demonstrate the level of fluency they desire. Speak Easy have also involved psychologists to provide input to their meetings. Sue

  15. This is a great perspective. I am a graduating CSD grad student and one of my interests has been researching how to support parents of children with disabilities because I am one. I know personally how difficult it is to watch a child struggle with something that is not their fault and that they feel they have no control over. My research centered on grief and how parents go through stages of grief when they learn of their child’s disability. I wonder if parents of children who stutter also go through a grief stage and if chronic grief is present? What do you think?

    • Hi Jamey, this is a really good topic. There is some emerging work looking as siblings and their reactions to their brother or sister with a disability. We have some preliminary data relating to parents and impact of having a stuttering child. I am sure grief would be one of the emotions some parents feel and I guess the chronicity of the grief depends in part on how well we can help the child become fluent! That is our biggest challenge I think. Sue

  16. Hello Dr. Block,

    As a future speech and language pathologist I found your paper and what you had to say to be very interesting. You made some great points, stating that it is not only the person who stutters that SLPs need to support, but also everyone else that is supporting the PWS (other SLPs, teachers, caregivers, support group leaders and family members.) I feel that support groups are an amazing place for PWS to go and find acceptance, confidence, counseling and different techniques used to promote fluent speech, but as you stated this alone may not be effective for all PWS. Are the majority of support groups that you know of led by SLPs or by PWS? As a coordinator of the stuttering program at your university, what do you do in order to instill confidence in your students that work with people who stutter?

    Thank you,
    Casi Reynolds

    • Hi Casi, In Australia most of the Speak Easy meetings are certainly led by people who stutter (or who have stuttered). Recently, in Victoria (my state) the city groups have asked speech pathologists to come along and help inject some variation into the groups. This has been a good opportunity for everyone to talk about what is helpful and what is not. We have a Stuttering Special Interest Group in Melbourne and members are very happy to support the self-help group in any way we can.
      Regarding the students I work with, I want them to see effective treatment. I want them to understand that people who stutter are very normal in every aspect except their fluency (and for some people, their level of anxiety). Thus, they talk with people who stutter. They watch treatment sessions. They listen to people telling their stories etc. Sue

  17. This was a very interesting article. You brought up a lot of important points that I found really helpful as a future SLP, currently in grad school. I have very little experience working with PWS and have thought that I may not be able to make connections with those clients because I can’t understand where they’re coming from and what they have experienced, so it’s nice to hear that addressed in your paper. Thank you

  18. Hi, Dr. Block!

    Thank you for this wonderful paper! As an SLP, when it comes to recommending a client to join a support group, I know their are many fears and anxieties some PWS have with speaking in a public setting. Is there any advice or “best practice” you feel is important for easing the concerns/anxieties of clients and/or their family who are nervous about taking that first step towards being placed in a group setting?

    Again, thank you!

  19. Hello,

    Great insight! As a graduate student we are constantly told to have empathy and understand PWS, but are rarely taught to support those who work with PWS. Would you say it is equally important to educate PWS about professionals who work with them? If so, what approach will be most effective in your opinion?

    Thank you,
    Maggie (Graduate student)