Category Archives: Research

Stammering Pride & Prejudice, City Lit, 3rd Nov 2016

I must admit I arrived with a little apprehension, this was the first time I had attended a public event related to stammering. I was aware that I was wearing two hats, as a person who stammers and a psychologist who has a special interest in working with PWS.

The opening remarks by Mark Malcomson were warm and welcoming, there was a real sense of excitement in the room around exploring this novel and perhaps controversial way of viewing stammering. As a psychologist I’ve tended to think about how a person relates to their stammer and the psychological processes that may or may not help in living well with a stammer. Whilst I have an appreciation that the social world we live in will influence this, I had never fully considered that stammering as a problem can be viewed as a socially-constructed phenomenon and so I really was intrigued to learn more about the social model of stammering.

The first talk was by Prof Michael Boyle who is looking at how one might go about reducing stigma around stuttering. This was an interesting look at the stereotypes around stuttering and how these are reinforced in the media. Michael is clearly doing some great work looking at ways to influence public attitudes to stammering. One of the things presented in his research was how people sometimes associate stammering with anxiety and there was the idea that this is a negative stereotype that should be refuted, with stammering presented as something separate to anxiety. I was interested to find that this evoked an emotional reaction in me. As a psychologist, I was struck by the parallels in how PWS are stigmatised in many similar ways to people with mental health difficulties. We are consistently given messages about how we ‘should’ be… whether it be happy, calm or confident. Anything other than these desirable mind states are ‘wrong’ and need to ‘fixed’ or controlled. Those of us who don’t easily fit this, again whether it be disfluency, anxiety, lack of confidence, I could go on… are given the idea, even as children, that we must change this. This can lead to a sense of shame around  normal human experiences and emotions and presents a narrow and limited view of what it is ‘ok’ to be like. My concern with some of the ideas alluded to in Michael’s talk around anxiety as separate to stammering is that we risk reinforcing negative stereotypes around mental health and potentially invalidating the experience of the many PWS (me included) for whom stammering AND anxiety are intimately interrelated aspects of ourselves. Ultimately PWS will have a diverse range of experiences and personalities, so as a community let’s celebrate this diversity.

Next up was a hard-hitting and thought-provoking talk by Katy Bailey. Katy talked about how negative attitudes toward stammering is akin to a person without legs being denied a wheelchair. How we are constantly given the message that to be different is wrong or bad. She recounted her personal experience to highlight how the way that stammering is approached, even within the world of stammering research and therapy, can reinforce this ‘damaged’ narrative. Internalisation of these narratives leads to an internal struggle to control stammering. For me, Katy hit the nail on the head here! Social and cultural norms will tell us it’s wrong or bad when we don’t fit the mould, when you couple this with our problem-solving brains that tell us we should be able to control our internal experiences in the way we can our external world, we end up with the makings of a lifelong, futile struggle to control what can’t easily be controlled. Moreover, this struggle ultimately comes at the cost of pursuing a rich, and meaningful life. PWS often sacrifice important personal values and goals in an attempt to control or hide this part of themselves. These sacrifices or costs will come in small packages, a latte when you wanted a cappuccino, and really big packages, giving up on the dream of a particular career or vocation. Katy highlighted the role of acceptance or letting go of the struggle as a meaningful way forward for her in living with and coming to find meaning in her stammer. As a therapist who teaches acceptance-based therapies (namely Acceptance and Commitment Therapy or ACT) and someone for whom working to let go of these struggles has been so liberating and empowering, Katy’s talk really resonated with me. Moreover, it highlights the need for more work clinically and research on the potential role for acceptance-based therapies (which are gaining momentum in the world of psychology) in working with PWS. Here the move is away from control and towards willingness to experience uncomfortable feelings, such as stammering, in order to move toward values life goals. This theme of self-acceptance was echoed later in discussions between Chris Constantino, Josh St Pierre and Dori Holte, and in Walter Scott’s talk about how his stammering was approached in school.

The rest of day saw talks by Iain Wilkie on the wonderful work he is doing with the Employers Stammering Network (ESN). Iain talked about how it’s to everyone’s benefit if people who stammer can feel more comfortable and able to be open about their stammer at work. Even more, people who stammer bring particular strengths and value to an organisation.

Other highlights included Sam Simpson and Rachel Everard talking about how speech therapy might inadvertently reinforce unhelpful social norms, and the need for PWS to develop a positive, empowering collective identity to be able to ‘live choicefully’. This echoed the conspiracy of silence Iain referred to earlier in the day. Sam and Rachel’s talks brought up the need to educate SLTs in this complex interplay between social, psychological and physical factors that affect how people live with a stammer.

Some light relief from the hard-hitting stuff was provided by Patrick Campbell, Ian Hickey and Nisar Bostan who entertained us with comedy and poetry. The day ended with a bang with Ian leading a reading from an excerpt from one of King George VI speeches. Anyone in the audience who was, as Ian beautifully put it , ‘lucky enough to stammer’ was invited to join in. Such a moving end to the day and truly put meaning to the idea of pride in stammering.

I’m so grateful I was able to be part of this day, I feel sure that these ideas are the start of something really important in changing and challenging how we conceptualise stammering both for PWS and crucially for the therapists working with them. Sam said it when she said PWS are best placed to challenge the status quo, from the inside AND I know therapists can play such a powerful role in empowering people to find the courage required to do this work. Let’s get to work!

 

Lorraine Maher-Edwards
Email: lorraine_maher@yahoo.co.uk
Twitter: @LorraineEdwar

 

The Neuroscience of Stammering

Most of us will likely agree that the brain of a person who stammers works somewhat differently to the brain of someone who is fluent. What is not so clear, is how it is different. Earlier this year Dr Soo-Eun Chang at the University of Michigan spoke to Peter Reitzes from StutterTalk about her research on the causes of stammering. We used this opportunity to discuss the neuroscience of stammering at a recent Open Space session.

Open Spaces provide a forum for people who stammer to come together and share their experiences and views on stammering. At this particular session we chose to focus the discussion on some of the scientific developments being made in the field of stammering research and what we felt this meant for us and the wider stammering community.

neuroscience2Dr Chang’s research has discovered that neural connectivity is a critical factor in producing fluent speech. In her work with children, she has found that those who stammer appear to have slower connections between the brains regions that control speech. Interestingly, this difference is also seen in kids who have ‘grown out’ of their stammers.

This could mean that stammering permanently changes the activity of the brain, or it could show us that children with this type of brain activity are more likely to start stammering. Dr Chang says more data is needed before we can be certain one way or the other.

What researchers do know is that timing is an essential component of speech production. When we speak, we string together a series of movements to produce the right sounds in the right order, and at the right time. In stammering, the timing of these movements appears to be impaired so that the flow of speech is disrupted.

A brain structure, called the basal ganglia, may play a starring role in all this. Buried in the centre of the brain, one of the many functions of the basal ganglia is to control movement. Scientists think that people who stammer could have too much of a chemical, called dopamine, which interferes with the ability of the basal ganglia to provide timing cues for speech. They have shown that when people who stammer take drugs to block the action of dopamine, their speech becomes more fluent.

Dr Chang explained that there is a link between rhythm – a product of timing – and stammering. A study carried out by a different research team has found that children who stammer have a weaker sense of internal rhythm compared to those who do not stammer. When these children are provided with an external rhythm – in the form of song lyrics, for example – they are able to produce speech more fluently. This suggests that independently finding and sticking to an internal rhythm is key to speaking fluently.

These insights into the ‘stammering brain’ were met with mixed feelings among the group. Some people said they felt comforted by having a physiological explanation for why they stammer, while others were uneasy with being labelled as different by science. For me, it was almost a vindication; it has given me something to fight back with against assumptions that I may be partly to blame for my stammer.

I’m aware that a focus on science – and the drugs and treatments that may ultimately arise from it – is helping to feed our medicalised approach to biological difference. It has been argued by some in the stammering community that, instead of fixing people who fall outside the norm of fluent speech, the onus should fall on society to change its expectations of what it means to speak normally.

In an ideal world there would be room for both approaches, with science providing us with knowledge and society offering us change. Indeed, despite the group’s contrasting views, what we all seemed to share was a huge appreciation for the progress being made in stammering research and the prospect of one day having answers to our many questions. My hope is that this will be paralleled by progress outside the laboratory, too.

Cara Steger

 

 

Finding meaning in therapy

As a speech and language therapist and researcher, Mark Ylvisaker inspires my work. Mark was both a speech and language therapist and philosopher, and someone who passionately devoted his life to working with people with brain injury. Back in 2007, he said “in the absence of meaningful engagement in chosen life activities, all interventions ultimately fail”. A phrase like this really resonated with me as a therapist. Therapy needs to be meaningful. However, it wasn’t until a few years ago when a Professor asked me “but what is meaning?” that I started to consider the importance of this term.

In our interactions involving people with brain injury the term “meaningful” is regularly used; meaningful goals, meaningful activities, meaningful roles, meaningful participation and meaningful engagement. But what I found particularly interesting to learn was that philosophers couldn’t agree on the definition of meaning owing to its complex, fluid and multifaceted nature. In fact, philosophers argue that meaning does not surrender itself to a definition. They do agree however, that meaning is comprised of three features: connectedness, coherence, and subjectivity. Connectedness refers to the linking of experiences so that they can be understood and interpreted. Coherence refers to a person making an evaluation of their life or experiences as making sense or being coherent. This is usually done within a bigger context that may include a goal, motivation or life at large. Both connectedness and coherence relate to meaningfulness, as a disconnected and fragmented (incoherent) life is considered meaningless. Subjectivity refers to the subjective experience of connectedness and coherence, as the experiences in a person’s life have no meaning unless they are meaningful to someone.

This started me thinking about how we as therapists create meaning for people with brain injury. Some people may have a notion of what is meaningful to them but need our help to connect and make sense of their experiences. Others have lost meaning in their lives so we need to help them find it again. Meaning can be derived in many ways, from multiple contexts (or sources). An activity or action alone cannot create meaning. It is the emotional response to those activities or actions and the link to a higher purpose, motivation or goal, which is important to the creation of meaning. As a therapist, I’m often left wondering how to do that for people with brain injury. A few years ago, I came across some research by Levasseur and colleagues (2010) who described contexts according to a person’s involvement in an activity (alone through to interaction with others) and the goals of that activity (to satisfy basic needs through to helping others and contributing to society).

Taxonomy

 

 

 

 

 

Proposed taxonomy of social activities

This “taxonomy” made me realise that much of the therapy I was offering was at some of the lower levels (individual or small group activities focused on fulfilling basic needs e.g. buying a coffee, ordering lunch, having a conversation). Little therapy was focused on helping others or contributing to society in interaction with others. That is not to say we should do that, but rather, doing therapy in multiple contexts (or sources), which includes Levels 4-6, may serve to increase opportunities in which a person with brain injury can derive meaning.

The creation of meaning during the therapy process is considered essential for a person with brain injury to engage with the rehabilitation process. People with brain injury just want to take part in something, give something back to others and be someone important, in spite of their injury. If we can help people with brain injury take part in meaningful activities reflective of their desires, they may also report a better quality of life, which some would consider the ultimate goal of therapy. Some ways in which we could achieve this include: individual and group therapy; therapy in real-life contexts chosen by the person with brain injury; video-taping interactions involving people with brain injury and family members, friends and/or significant others; completion of projects designed to help others learn more about brain injury or help brain injury survivors cope with the experience of sustaining a brain injury; setting goals that relate directly to something bigger (e.g. getting a girlfriend, getting a job). These are just some examples of the contexts that may help people with brain injury find meaning in their lives.

Ultimately, I wrote this blog to convey a simple message: how important it is to help a person with brain injury find meaning in their lives. This message attests to Mark’s legacy who was dedicated to making lives for people with brain injury both meaningful and satisfying. Not losing sight of what is meaningful to our patients and clients is what we can do as therapists to take his life’s work forward.

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Dr Nicholas Behn
Speech and Language Therapist
City University London

 

 

Power, professionals, privilege and person-centredness…

DSC01389_lightAs an allied health professional and educator in the health and social care sector, I interview a lot of would-be health and social care professionals. Almost without fail, these university applicants talk about caring and their desire to work with people, of communication skills and understanding. In due course the successful students study hard to achieve their professional registration. The academic Caroline Ellis-Hills and her team have written that rehabilitation is about helping people to live a life not dominated by their disability; a shift from the traditional medical ‘fix-it’ models. With professional registration comes the opportunity to use newly acquired knowledge to support people to live such lives. This privileged opportunity is one of both position and potential power.  In policy, education and as health and social care professionals, we talk about being ‘patient-centred’; in reality and borne out in the research literature, we may be falling short in this aspect of our practice. It is my observation that many therapists, including me, readily slip into a ‘gift’ model of rehabilitation; one where as a product of our knowledge, we tend to hold the power and suggest what is best in the light of available evidence. As a result we tend to dominate and drive rehabilitation and in turn lose sight of the person at the centre. Again the research literature reflects this. For some years now, William Levack and his colleagues have looked in detail at what happens in goal setting; a central tenet of rehabilitation practice. They have observed that while therapists talk about person-centredness and empowerment, when there is disagreement between patients and teams about which goals to set, patient preferences seem to get lost. Regrettably, I recognise my own practice in Levack’s observation of therapists steering a patient to set less ambitious, more realistic goals; a goal Levack and his colleagues call a ‘privileged goal’. In the past I have rationalised this as therapeutic, avoiding raising unrealistic expectations and supporting the development of insight, but I am increasingly ill-at-ease with this element of practice and it is fast joining my list of behaviours and practices to eliminate in rehabilitation along with the over used and thinly considered phrase: ‘no rehab’ potential’. Furthermore, I’m asking myself (and my students), what’s the more normal behaviour; setting a realistic goal or setting an unrealistic goal? Hands-up …. I set a lot of unrealistic goals … for myself, over and over again …. so, I don’t really demonstrate very good learning either. Is this a health condition?

It’s reassuring that the research literature is documenting these phenomena and encouraging practitioners to think about practices that have become so embedded that we have ceased to examine what is really happening in these powerful interactions. However, notwithstanding the contribution of evidence based practice in recent years, we need to be wary of being too dependent on the research literature. For me, the most powerful prompt to re-evaluate my practice came from two ad hoc personal interactions. The first with a social work colleague who many years ago told me: ‘when someone is told they have ‘no rehab’ potential’, they feel like they have scored ‘null points’ for life’. The second was hearing the experiences of my school friend’s husband, David. David had an aggressive brain tumour in 2005, (http://www.braintumourresearch.org/david-grant_725 ). When diagnosed he was told his life expectancy was about 15 months. A decade later, David is still here. He’s only recently retired from fulltime work and remains both independent and active, contributing to student education, cancer charity and policy work.

When I first heard David talking about his goals I remember worrying that he lacked insight about the gravity of his condition. David’s goals were big, ambitious and emotionally laden; things like, ‘I’m going to walk my daughter to school on her first day at school’. As a friend, I struggled with how to react. I felt empathy for any therapists who might have been trying to rein him in and recalibrate his expectations. Actually, it was me who had to recalibrate; David did not and does not lack insight. He is absolutely realistic about the gravity of his condition, but this does not mean he cannot also be active and hopeful. The importance of supporting and nurturing hope features little in health and social care education but is an area gathering attention. Returning to the research for a moment, there’s evidence that, just like David, patients can remain hopeful but equally grasp the seriousness of their condition. Bright and her colleagues reviewed the literature about hope in relation to stroke and suggest that while there’s some evidence that health and social care professionals can have a positive role in fostering hope, they are just as likely to dash hopes, to justify this as setting realistic expectations and what’s more, seldom see fostering hope as their role.

Clearly there is a balance to be struck, but I have always thought that there is huge merit in the phrase David recalls his oncologist using: ‘David, you have a very nasty brain tumour, but a small minority of people do very well; join them!’. After all, how do the health and social care professionals ‘know’ what a realistic expectation is?  For a couple of decades now we have been encouraged to look at the evidence, the statistics and empirical research; to embrace evidence based practice. There is of course value in such evidence, but it doesn’t tell us the whole story. David, for example, is excluded from brain tumour survivor research because …… well, he’s survived too long! The occupational therapist and writer in the field of rehabilitation, Karen Whalley Hammel, encourages us to tease apart the ties between knowledge and power. As far back as 1999, Coulter wrote in the British Medical Journal: ‘….while the professional is knowledgeable about the individual’s condition, only service users and carers know about their experiences, circumstances, habits, preferences and values; the partnership approach to care should be based on mutual respect.’ There are echoes here of George Kelly’s characterisation of two experts in the room. A decade and a half later we still talk about patient-centredness as if it is a new concept and campaigns such as Kate Granger’s (http://hellomynameis.org.uk/), suggest there is still a way to go and that there are small things that can make an enormous difference.

I’m encouraged that increasingly I see issues of hope and person-focus thoughtfully discussed by both therapists in training and those more established in practice and I find myself thinking: ‘Is an experienced practitioner the one with the most up-to-date disease-specific research knowledge or the wise one, open to possibility, practising their craft with care and respect and above all with a focus on the individual?’

Deborah Harding
Senior Lecturer, Rehabilitation
Faculty of Health and Social Care Sciences
St George’s, University of London
Email: d.harding@sgul.kingston.ac.uk
Twitter: @HardingDebs

Sadly – not all academic journals are open access yet, but for those who are interested here are the references for any literature I have cited:

Bright, F.A.S., Kayes, N.M., McCann, C.M. and McPherson, K.M. (2011) Understanding hope after stroke: A systematic review of the literature using concept analysis.  Topics in Stroke Rehabilitation. 18(5): 490-508

Coulter, A. (1999) Paternalism or partnership? Patients have grown up – and there’s no going back. British Medical Journal, 3 19: 719–20

Ellis-Hills, C., Payne, S. And Ward, C. (2008) Using stroke to explore the Life Thread Model: An alternative approach to understanding rehabilitation following an acquired disability. Disability and Rehabilitation, 30(2): 150-159

Kelly, G. (1963) A theory of personality: The psychology of personal constructs. New York : Norton

Levack, W., Dean, S.G., Siegert, R.J. & McPherson, K.M. (2011) ‘Navigating patient-centred goal setting in inpatient stroke rehabilitation: How clinicians control the process to meet perceived professional responsibilities’, Patient Education and Counseling. 85(2): 206-213

Whalley Hammel, K., (2006) Perspectives on Disability and Rehabilitation: contesting assumptions; challenging practice. London: Churchill Livingston

Stammering and the social model of disability: challenge and opportunity

Where does the real problem of stammering lie?

How does society communicate its values and norms about fluency and how does this affect people who stammer?

How does the SLT tread the delicate path between helping their client manage their stammering more effectively (and increase ease of communication) without reinforcing unhelpful ideas about stammering (and fluency)?

These are just some of the questions Katy Bailey, Sam Simpson and I posed in a joint presentation to the Oxford Dysfluency Conference on 19 July 2014.

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At the presentation’s heart was a conviction we all share that the social model of disability has much to tell us – people who stammer, speech and language therapists, and wider society – about stammering, and how by working together we can challenge and overcome some of the stigma out there and self-oppression in here which can make life so difficult for those of us who stammer.

Katy began by tracing the origins and development of the social model in the disabled people’s movement which disputed the traditional medical conception of disability as the individual’s problem requiring impairment expertise, cure, therapy and care. Instead, the social model locates the ‘problem’ of disability in society: in the physical barriers, but also in the negative stereotypes and prejudices which can push disabled people to the margins of society, whilst upholding powerful notions of ‘normality’. The physical barrier of a voicemail which does not let me finish saying my name may be familiar to people who stammer, but far more insidious and interesting for me is the stigma around stammering which operates along psychological and emotional pathways, and is there, Katy argues, in the struggle of stammering itself.

Sam then recounted her own development as a speech and language therapist and the disturbing realisation that she was training within a tradition firmly underpinned by the medical model in which she, the ‘impairment expert’ was expected to ‘fix’ and restore the client to normality (fluency), without any awareness of the social norms and stigma the therapy was reinforcing. Times have moved on since then – Sam’s book which she co-edited with Carolyn Cheasman and Rachel Everard, Stammering Therapy from the Inside is evidence enough – but there is still plenty of stammering therapy for which fluency is the overriding preoccupation, and which fails to take the client’s voice into account, and to grasp the broader factors of self-identity, society and social stigma.

Finally, I assessed some of the cultural pressures we face: the performance-driven and perfectionist zeitgeist in which we live and the haunting and destructive appeal of the ‘fluency god’ which I am happy to say more and more people who stammer are starting to renounce. That certainly seems to be the impression I get from a range of blogs, podcasts and websites: StutterTalk, Stuttering is Cool, British Stammering Association, Free Speech, Diary of a Stutterer and the latest, Did I Stutter? project. If you haven’t done so already, check them out! The internet and social media has been a wonderful way of bringing people who stammer together, to share our stories, insights and experiences, and to provide some collective resistance to the powerful social norms which tell us either to keep quiet and get it fixed, or at least to keep up the façade of fluency. This is the good news. And the other piece of good news is that speech and language therapists also have an important part to play in helping people who stammer overcome these barriers. Approaches such as mindfulness and cognitive behaviour therapy enable us to look at our thoughts around stammering differently, and foster healthier and more self-accepting thoughts and behaviours. There is much good work to build on, and more opportunity to continue this conversation between therapists, clients and self-help groups on how we can all work together to help people who stammer on our ongoing journey from oppression to liberation.

St John Harris
website: www.free-speech.org.uk

email: stjohn.harris@free-speech.org.uk
twitter: @StJohnHarris

Helping people with aphasia have better conversations

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Aphasia is the name given to a condition where speaking, understanding, reading and writing are damaged. If you experience aphasia, it can be devastating. Speaking is a bit like blinking – it is something you take for granted until that bit of grit lands in your eye, then you realise just how much you rely on it. In the UK around 152,000 people have a stroke each year, and one third of them will be left with aphasia.

Living well with long-term aphasia has been linked to an ability to maintain close friendships and relationships as well as a sense of control and independence over one’s life (Brown, Davidson, Worrall, & Howe, 2013; Cruice, Worrall, & Hickson, 2006). The ability to have a conversation is central to this. Just think about how many conversations you have with different people every day. Whether it’s having a good gossip with neighbours, chatting to our children about their day at school or speaking with friends and colleagues, we need to be able to speak and understand to have those conversations. Aphasia can make conversation almost impossible, devastating the quality of people’s lives, and the lives of those nearest and dearest to them.

For this reason I applied to the Stroke Association to do a PhD to further explore how we, as speech and language therapists, help people with aphasia develop skills and strategies to have more enjoyable conversations.

Left aligned logoPrior to my PhD I was part of a UCL based research group that developed the ‘Better Conversations with Aphasia’ (BCA) therapy (Beeke et al., 2013). BCA helps people with aphasia and a regular conversation partner of their choice learn about how conversations work in general, and then explore how their conversations are working. The aim being for them to then make informed decisions about how they may (or may not) want to change the ways they currently accommodate aphasia within their conversations. Watching videos of their own conversations, and the conversations of others is key to this approach. However, some clinical settings access and permission to use video with clients is not always easy. For this reason, I am keen to find out how speech and language therapists working clinically work on communication strategies with people with aphasia and their partners. My end goal is to then compare ‘typical’ clinical practices to the BCA approach, to better understand how different therapy techniques might change peoples’ communication strategy use.

If you would like to find out more, or you have aphasia and are interested in taking part in my PhD project, please visit my blog http://www.firleb.wordpress.com. You can also follow me on twitter @firleb.

There is also a free, aphasia friendly, e-learning tool for people with aphasia, their family and speech and language therapists, which can be accessed via this link: https://extendstore.ucl.ac.uk/product?catalog=UCLXBCA

All you need to do is register and then you can access it.

Firle Beckley

PhD Student University College London/Stroke Association Junior Research Fellow

Beeke, S., Sirman, N., Beckley, F., Maxim, J., Edwards, S., Swinburn, K., & Best, W. (2013). Better Conversations with Aphasia: an e-learning resource. UCLeXtend.

Brown, K., Davidson, B., Worrall, L. E., & Howe, T. (2013). “Making a good time”: the role of friendship in living successfully with aphasia. International Journal of Speech-Language Pathology, 15(2), 165–75. doi:10.3109/17549507.2012.692814

Cruice, M., Worrall, L., & Hickson, L. (2006). Perspectives of Quality of Life by People with Aphasia and Their family: Suggestions for Successful Living. Topics in Stroke Rehabilitation, 13(1), 14–24. Retrieved from http://thomasland.metapress.com/index/4jw57vg8g6x31qvj.pdf