Articles

The Dominic Barker Research into Stammering Project
by Isobel Crichton-Smith, Research Fellow, The Dominic Barker Research Project, Suffolk College
Issue 20, Winter 2003

The Dominic Barker Research into Stammering Project was launched in 1998 by the charity, Dom's Fund. The charity was set up by the family and friends of Dominic Barker, a young Suffolk man with a stammer, who committed suicide because he found it hard to make progress with his chosen career path.

The charity chose to base the project in its local area and has been supported from the outset by Suffolk College in Ipswich, whose principal, Professor Dave Muller, will be known to many speech and language therapists for his work in aphasiology.

The project aims to: undertake research into the treatment of stammering disseminate research findings to a local and global audience provide a local resource for speech and language therapists and people who stammer.

Dom's Fund recognises that, although research into stammering is being carried out all over the world, there are only a few dedicated research projects in this country. The fund is committed to providing an arena for independent research that will enhance the knowledge and understanding of stammering in this country and at an international level.

The research team consists of one full time research fellow and speech and language therapist (myself), one part-time researcher and speech and language therapist (Fiona Stewart) and a research assistant (Dr Claire Teevan-Hanman). The team works closely with National Health Trusts in the East Anglia region and currently focuses its research in its local area. The project has already completed three studies.

Adult study
In 1998, when the Trust was launched, the media coverage inspired many people to make contact with the project. The majority had a story to tell about their experience of living with a stammer. About this time, Corcoran and Stewart (1998) published research based on the qualitative analysis of interview narratives from adults undertaking therapy that identified a common theme of suffering. No published research existed on the lived experience of people who stammer in the UK, hence, a project was undertaken to formally gather these stories and look for any common elements. The resultant piece of research was entitled Communicating in the real world: accounts from people who stammer. It involved undertaking qualitative interviews with fourteen adults from varied backgrounds who had all grown up with a stammer. Some participants had received help for their speech, others had not. The accounts appeared to differ greatly. However, when compared more closely, a common theme of limitation' emerged. Participants all shared feelings of being limited in their education and employment and all felt self-esteem had been affected by their experience of stammering.

Management of stammering
During the interviews participants were asked how they managed their speech on a day-to-day basis. The responses could be categorised into four strategies.

Some participants did nothing and this was labelled as "no change". Others used techniques they had been taught by a professional (these "taught changes" were not mentioned as often as I was expecting!) Some participants chose to "highlight" their stammering with humour, labelling or swearing. However, most frequently mentioned were "intuitive changes" such as rehearsing, planning and using run-ups, word and situational avoidance.

Situational dependence
One similarity across participants was that the way they managed their speech was situation dependent. However, situations varied between participants. For example, some participants said that they would only use a taught fluency technique at home whereas others would apply it only in a work situation such as a meeting.

Similarities and differences
All in all, the accounts of living with a stammer were like life itself very varied. That is not to say that there weren't common experiences shared by all respondents. The differences arose out of the different ways that the individuals responded to and handled these experiences.

Personal reflections
The interview process led me, as a researcher, to wonder what type of comments I would have elicited if I had been operating in my other professional role as an SLT. I certainly felt that in my researcher role I was privy to very candid accounts of the management of stammering. As with all interviews, I accepted what I was told as truthful though without additional methods (or triangulation) it was difficult to corroborate the information. Since completing this particular piece of research I have thought a lot about the concept of disclosure and how important this may be when working with adults who stammer. Sometimes I was offered unexpurgated warts and all accounts of life in great detail, while other accounts were more guarded and lacked cohesion, as if bits had been edited out. I reflected on the amount of information I would be prepared to tell a researcher and how that might differ from what I would tell a therapist. One lesson (or perhaps bias?) I have learned is that a discussion between therapist and client may be strongly influenced by what the client feels the therapist wants them to say. This, in itself, can produce one of those roadblocks that get in the way of the therapeutic process.

Therapists' attitudes and confidence study
In 2000, following completion of the adult study, I undertook a research project as part of an MSc in Human Communication. For this, I focused on SLT attitudes towards and confidence levels in working with stammering. My personal interest in this area began in my previous job as an SLT with an interest in stammering but with no recognised specialist post in paediatric dysfluency available in my NHS Trust. I was one of the few therapists interested this client group and, as such, my caseload expanded accordingly. I was occasionally (and still am, unfortunately) confronted with other therapists' negative perceptions of stammering. I wanted to discover whether these attitudes were symptomatic of my local area or whether they represented more wide spread attitudes. From a review of the literature I discovered that attitudes towards stammering had been investigated in a variety of ways. Mainly, research stemmed from the USA. One particular paper by St Louis and Durrenberger (1993), reported on therapists' preferences for working with different client groups. They found that working with children and adults who stammer (and cluttering) were rated towards the bottom of the majority of respondents' preferences. More popular areas included language delay, phonological disorders and aphasia.

The only published study regarding therapists in the UK was a joint study by Lena Rustin and Eugene Cooper in 1985. They compared US and UK attitudes and reported universally held attitudes towards stammering, eg, that stammering was multi-factorial in nature. Unfortunately, they also found that therapists held negative/stereotypical attitudes regarding people who stammer as well as the parents of children who stammer.

Using the same inventory of questions, I surveyed 261 therapists in the UK to discover whether attitudes had changed. I specifically targeted a mixture of therapists with varying levels of interest in dysfluency, from those with no clients to those with a specialist caseload. I included therapists who were and were not trained in Lidcombe therapy. The results showed that some attitudes had remained constant whereas others had changed. Of particular interest was a significant move toward early intervention, which had not been so clearly indicated in the previous study. The good news was that therapists' attitudes towards clients who stammer and their parents showed much less evidence of negative stereotyping.

Intra-group differences
The sample characteristics made it possible to compare results from different therapists within the group. As a whole, generalist therapists were less clear in their responses to the questionnaire than specialists. The study indicated that specialists held some firm ideas about intervention and about other therapists' ability to work with people who stammer. Unfortunately, they felt that therapists were not adept at treating stammering which, as previously indicated in other studies, appears to be a continuing area of concern. Interestingly, therapists trained in the Lidcombe Programme held more positive attitudes towards people who stammer and working with stammering than therapists not trained in this approach. There are a multitude of possible explanations for this finding, including that these therapists tended to work with a paediatric caseload. It is possible that they had a different experience from therapists working predominantly with adults. Alternatively, of course, there may be something about the Lidcombe Programme which makes therapists positive about working with stammering. In the absence of any additional research we shall just have to guess!

Confidence levels
I also asked therapists about their confidence levels regarding managing a paediatric and adult caseload. Therapists were asked to write down factors influencing their confidence levels. The findings indicated that the majority of therapists felt confident working with a familiar caseload (ie, a paediatric therapist would indicate that they felt confident working with a paediatric caseload). An intra-group analysis of the results did however, indicate that the majority of recently qualified therapists did not feel confident working with adults and over a third did not feel confident working with children. Telephone interviews were undertaken with ten therapists to investigate the area of confidence. These interviews, in combination with the findings of the survey, highlighted the importance of training, experience and professional support as key factors for maintaining confidence.

Parent-child interaction study
The research project is now focusing entirely on pre-school children. The arrival of the evidence-based Lidcombe Programme in the UK highlighted the need to critically evaluate similar therapies such as parent-child interaction therapy (PCI, Rustin et al, 1996) and investigate their place in the therapist's repertoire of interventions for children. To begin our investigation, five detailed case studies were conducted in 2000, using PCI with children under five years of age. The study lasted twelve months and consisted of three phases: baseline, therapy and maintenance. During the therapy phase the children received six sessions of weekly therapy at home. The results indicated that, from the baseline to the therapy phase, levels of dysfluency reduced in all five children. Three children were described by their parents as fluent at a six month follow up after the end of the project. One child was greatly improved at three months post maintenance but has since left the area and the final child, with a concomitant language disorder, was still experiencing levels of dysfluency similar to the start of the project. Therefore, initial, albeit limited findings suggested that PCI was effective for the children in the study. Interviews with the parents revealed that they enjoyed the study, they liked the play based approach and particularly appreciated the therapy being carried out in their homes. A single case study, looking at changes in parent and child interactions over the course of the study, was presented at the 6th Oxford Dysfluency conference and will be available in the forthcoming proceedings. Additional results from the case studies are still undergoing analysis and will be available in 2004.

The fourth project to be funded by the Trust, to investigate the relationship between play and fluency in both fluent and dysfluent children, is currently underway. The results from this study will inform the ongoing evaluation of current therapies and hopefully provide a foundation for the development of an innovative approach to intervention for pre-schoolers who stammer.

References
Corcoran, J.A. & Stewart, M. (1998). Stories of stuttering: A qualitative analysis of interview narratives. Journal of Fluency Disorders 23, 247-264

Crichton-Smith, I., (2002) Communicating in the real world: accounts from people who stammer. Journal of Fluency Disorders, 27, 333-352

Crichton-Smith, I., Wright, J. & Stackhouse, J., (2003) Attitudes of speech and language therapists towards stammering'. International Journal of Language and Communication Disorders, 38, 3, 213-235.

Rustin, L., Botterill, W. & Kelman, E., (1996) Assessment and Therapy for Young Dysfluent Children'. Whurr.

For details of the Dominic Barker Research Projects see www.suffolk.ac.uk/dbt-healthresearch/
or for details of Dom's Fund contact http://www.dominicbarkertrust.org.uk/