Irish Stammering Association board member Sarah McCormack discusses her study into the experiences of people who stammer, and the role of support in mental wellbeing.
I did a Masters in Health Psychology in 2012 at Ulster University. Health psychology focuses on how people behave in relation to their health, which includes factors like stress and coping. Research has shown that those who seek emotional support have greater quality of life outcomes and a better quality of life is increasingly linked to measures of success in stammering therapy. I myself stammer, and for my university research module I chose to explore the availability of emotional support for people who stammer as they grew up, for my thesis Emotional Support in Stuttering: Childhood Experiences Recollected.
A child who is not used to open discussion of stammering when they are young might well find it difficult later on.
I chose to use an in-depth interview method with a small number of participants, an approach known as Interpretative Phenomenological Analysis (IPA), which seeks to explore the lived experience of a person. IPA is particularly suitable when trying to find out how individuals are perceiving the particular situations they are facing and how they are making sense of their personal and social world. Invitations to participate were sent to the Irish Stammering Association (ISA) support groups. Three people responded; two men and one woman, with an age range of 29-40 years. I recorded the interviews, typed all the transcripts, then carefully analysed them for major themes and ideas.
Among themes which emerged from my research was that participants had feelings of helplessness and a lack of control in relation to stammering. I also found that they had personalised stammering, that there was a lack of openness in discussion and that the psychological burden of stammering went unsupported. Another prominent feature was that people in the study had experienced a silence about stammering when they were children. There was little or no discussion about it in the home. They felt isolated from some social groups, and as children they thought they were the only ones who stammered. They also felt that their difficulty in speaking was misunderstood by others. School was recalled as having been a particularly negative experience for those I interviewed.
Implications for the role of support from parents and others
For participants in my study, there was evidence that no realistic explanation for the causes of, or any basic knowledge about, stammering was provided to them as children. The lack of an obvious cause or explanation of stammering in some cases led them to conclude that they themselves were somehow to blame for their stammer. Furthermore, this lack of knowledge meant they had no information to provide to others (such as classmates) as an explanation for their difficulty speaking, and this caused them some concern as children.
I also found that there had been little or no open and objective discussion of stammering in the normal family, school and social situations. Thus, for those people and their families a culture of avoidance was created. This lack of openness had a limiting effect on the contexts into which stammering could be brought. For these participants, stammering was really only talked about in the speech therapy setting - if they had attended speech therapy. One participant said that although he was comfortable talking about stammering whilst in speech therapy, he was very uncomfortable discussing it outside that context, and considered the discussion of it to be a ‘threat’. Previous research has shown that people who normalised their attitudes towards their speech (i.e., felt comfortable discussing their stammer) had lower risks of relapse than those who did not (Guitar, 1998 and Helps & Dalton, 1979). It was expressed by all three participants in this study that they wished stammering had been more openly discussed in the home when they were children.
In my research, the participants as children reported being keenly aware of their parents’ discomfort about their stammering. One person said they had the view that their parent felt guilty about it, and this made that child feel even worse about themself. As children, the participants seemed to draw their own conclusions about their stammers, leaving them feeling bad about themselves. They had nowhere to discuss their feelings or their experience of stammering. It would follow that a child who is not used to open discussion of stammering when they are young might well find it difficult later on. It is interesting to observe that actively ‘not discussing’ it might serve to protect from difficult feelings, but it may create another issue of a significant silence as a by-product.
It is interesting that research published in recent years with parents of children who stammer found that parents have similar feelings as the child (Plexico & Burrus, 2012). They experience anxiety associated with being the parent of a child who stammers. They are concerned and want to do what is best for their child. The parents in that study were uncertain whether to acknowledge the stammering; they were afraid it would make the child embarrassed or uncomfortable. Parents also felt that if the stammering could not be fixed then it should not be discussed. The majority of parents said they had a general unease about discussing stammering in the home; some parents felt guilty in case they had somehow caused the stammering or had failed in fixing it.
The parents interviewed said that family and friends could also be a source of stress, as they had to deal with reactions to and criticism of how they manage their child’s stammer. This highlights that parents of children who stammer may have to seek out the right sort of support, and that sometimes relatives and friends may not provide it in the context of stammering. Although often well-meaning, they may lack awareness of it and the best things to do.
Speech therapists and support organisations such as the BSA and ISA can help to figure out how best to discuss stammering in the home and how to be more open about it. Nowadays the internet provides great sources of information for parents, such as the BSA website and its parents’ resources. Plexico & Burrus’ study, mentioned above, found that discussions with other parents of children who stammer through a parents’ support group were very useful. Support groups can help in the process of desensitisation to stammering (for both parents and children) and provide information on how to support the child who stammers to cope with school and other situations outside therapy. BSA’s closed Facebook group is a good place to start. Parents could even think about setting up groups in their own areas. BSA has resources for doing this. Open discussion can help ‘normalise’ stammering in the same way as other topics, and therefore create a forum where the child, adult or parent can discuss their feelings about stammering.
Stress in adulthood
The stammering condition can be a considerable stressor on the person at various points in their life. Research on coping skills has found that when a person does not have access to resources, they become more vulnerable to stress and have reduced ability to adjust (Lazarus & Folkman, 1984). People become less vulnerable to stress and more resistant to negative effects of stress when resources and support become available. From my research the participants reported that they carried a significant extra burden of emotional pain. As people who stammer, if we have not discussed or shared this burden, then we may have carried this difficult ‘companion’ alone a very long way. Studies show that seeking emotional and social support is a coping strategy that results in higher quality of life outcomes (Plexico & Burrus, 2012). Developing a perspective of selfunderstanding and compassion provides emotional support; the understanding that we didn’t choose to have the condition of stammering, and that in all situations we deal with things as best we can, with the resources and support, or lack of, that we have at that point in time and place.
Emotional support can take many forms and there are a lot of options out there. It can begin in the form of discussing our feelings about stammering in a variety of everyday or therapeutic settings. It can be telling a trusted friend how it feels to be a person who stammers. It can be joining a self-help group, or an online stammering forum, such as BSA’s closed Facebook group. Social support can be as simple as being determined to maintain friendships in spite of a fear that we will stammer. Other approaches can be used as standalone support or in conjunction with speech therapy, and indeed are increasingly being used by Speech and Language Therapists. Approaches such as Cognitive Behaviour Therapy (CBT), Personal Construct Therapy (PCT), Acceptance & Commitment Therapy (ACT), Narrative Therapy and Mindfulness are support models for stammering that can help to manage psychological distress, increase awareness, develop non-judgemental self observation and de-personalise stammering.
Seeking emotional and social support is a coping strategy that results in higher quality of life outcomes
Stammering can affect us over our lifespan, and there are many forms of support that we can access at various points in our life. The context of how we talk about things (when, where, with whom and what words we use) or indeed how we choose not to talk about things, matters because it influences and frames how we view the world and ourselves.
The Irish Stammering Association’s website can be found at www.stammeringireland.ie
Guitar, B., (1998). Stuttering: An integrated approach to its nature and treatment. Baltimore, MD: Williams & Wilkins.
Helps, R. and Dalton, P., (1979). The effectiveness of an intensive group of speech therapy programme for adult stutterers. British Journal of Disorders of Communication, 14, pp. 17–30.
Lazarus, R. and Folkman, S., (1984). Stress, appraisal, and coping. New York: Springer.
Plexico, L. W. & Burrus, E., (2012) Coping with a child who stutters: A phenomenological analysis. Journal of Fluency Disorders. 37 (4), 275-288.
How to start a conversation with your child about stammering
When and why is it important to speak with the child? As soon as you observe that the child notices their stammering you should no longer ignore it. It is easier to deal with problems when one can identify and discuss them. It is also better for the child to talk with you first, before they experience negative reactions. It is easier to find solutions for problems arising from stammering when the dysfluency has a name. This name does not necessarily have to be ‘stammering’. You can use expressions like ‘bumpy speech’, ‘making words jump’, ‘stumble’, ‘get stuck’, etc.
How can I start talking about stammering? Choose an everyday situation, not loaded by emotions, to start the conversation, to avoid giving stammering more importance than necessary. Showing pity or making light of problems (if there are any) is inappropriate. Assume a basic attitude of interest, without claiming to find an immediate solution or to have an answer for all of the child's questions. Once you have made a start further talks are generally easier.
Taken from the BSA website. Read more, including an example conversation, at The first time... How do I start a conversation with my child about stammering?
From Speaking Out Spring 2014, pages 16-17