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.
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.
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.
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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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