By Rosemarie Hayhow
The Bristol Stammering Project aims to find out more about stammering and the effectiveness of stammering therapy. The first phase resulted in a review of the published literature and the second phase used a questionnaire to find out about:
1.people's beliefs concerning the cause and development of their stammering;
2.the therapy people have found helpful or unhelpful;
3.the alternative therapies that people have tried to find out how effective these have been;
4.what people want from speech and language therapy in the future.
Information from the questionnaires has been compared with information available from the literature.
Table 1 gives some of the background information about the people who filled in the questionnaires.
|Table 1: Background information on the people who responded to the questionnaire.|
|Number of Questionnaires sent||1,058 to BSA members||180 to specialist SLT|
|Number of Questionnaires returned||275 (26%) from BSA members||57 from SLTs|
|Gender mix||236 males (71%)||96 females (29%)|
|Age Range||16-86 years||Average age- 38 years|
|Occupation- the majority were:-||201(60%) managerial/ supervisor/ professional||88 (26.5%) not economically active what does this mean|
Severity of stammering
Rated on 1-10 scale
1 = mild, 10 = severe?
'On a Good Day'
264 (80%) rating of 1-3
'On a bad day'
Only 25 (7%) rating 1-3
143 (44%) rating 5-7
150 (45%) rating 8-10
|Age when people thought they started stammering||178 (64%) 0-5 years||113 (34%) 5-11 years|
Observations from this table include:
- This ratio of men to women respondents shows a higher proportion of women than is found in the population of people who stammer where the ratio is thought to be nearer to 4:1 (males:females).
- Most people experience their stammering as a variable problem from mild to severe depending upon the day or the situations they are in.
- It is difficult for adults to be certain of when they started to stammer. Parents of young children can find it hard to pin point exactly when stammering started. Sometimes people have very clear recollections, especially when the child was speaking fluently before sudden onset. Other children may have confusing "cycles" of stammering and fluency so age of onset is never clear. However, it is interesting that the literature identifies the pre-school years as the time when the majority of stammering starts indicating that this group has more people with later onset than might be expected. People may be reporting when they became aware or concerned about stammering which may or may not be the same time as onset. Parents can be more concerned and the child more aware once the child has started school.
The main Questions that the study explored:
1. What caused stammering and what keeps it going?
- 50% were either not sure why they started to stammer or their responses were impossible to classify.
- The most frequently cited cause was "unhappy childhood" or a specific traumatic event (28%).
- Only 11% thought it was a genetic problem yet in another question 153 (46%) reported that they had a relative who stammers. The literature reports that stammering runs in families for around half of those who stammer and suggests that there may be a predisposition to stammering that gets passed on.
- Only 5% thought their stammering was caused by parental mismanagement of early dysfluency.
|Table 2: What keeps stammering going and why does it vary|
|*What maintains stammering?||**Why does stammering vary?|
|Generalised Anxiety 30%||
|Fear of Stammering 15%||
Increasingly, stammering is viewed in some of the recent literature as a developmental problem affecting the very fine co-ordination between the different muscles that control the delicate balance between tension and relaxation for the micro-second timing of movements. These physical aspects of speaking interact with the child's cognitive and linguistic development and with the pressures that the child and environment impose on the developing speaker. Newly acquired skills can be vulnerable skills and it may take very little to disrupt the maturing behaviour patterns.
Also, children often talk in circumstances that can disrupt fluency as they compete with other speakers, background noise, other demands on people's time, tiredness, excitement and eagerness etc. Although it is thought unlikely that environmental factors cause stammering the environment can help or hinder a child's ability to deal effectively with those moments of difficulty when they feel "stuck with their speaking". Those who cited an unhappy childhood as the primary maintaining factor could well have been struggling with their speaking difficulties in an unsupportive and maybe hostile environment which would not have been conducive to the development of competence and confidence in their speaking skills.
Changes in child rearing practise may have had a positive effect on children's speaking over the last twenty to thirty years. In earlier times, policies of over correction or of "ignoring" the problem could certainly have also been maintaining factors. When children find stammering unpleasant they try to stop it happening, usually by putting more effort into getting the word out. As many readers know this is how the vicious circle of tension > more stammering > greater anticipation > more tension > more stammering etc. develops. In this way stammering is learned and becomes an automatic or habitual way of speaking under certain circumstances. "Habit" was cited by 25% of respondents as a maintaining factor for them.
In view of the accepted role of anticipation in stammering it is surprising that only 15% specifically mentioned "fear of stammering" as one of the maintaining factors. The 30% who cited "generalised anxiety" also contradict the literature which suggests that it is anxiety about speaking that is the problem rather than a higher level of general anxiety. Perhaps when people feel anxious about speaking this is a pervasive feeling and the subjective experience is of generalised or even overwhelming anxiety. Very few people offered suggestions as to why their stammering varies.
2. Speech and language therapy (SLT): what's helped and what hasn't?
This information was difficult to analyse since people responded to the questions in many different ways. However, some themes emerged as shown in Table 3.
|Table 3: Information on the speech & language therapy people had received|
|Numbers of people who've had 1, 2 or 3 (or more) courses of therapy|
|1 course - 298 (90%)||2 courses - 215 (65%)||3 courses or more - 141 (43%)|
|The therapy that 30 or more found helpful * (374 responses from 268 people)|
|Unspecified therapy - 169 (63%)||Rate Control - 63 (24%)||Block Modification - 56 (21%)|
|The benefits that 30 or more derived from the therapy* (360 responses from 261 people)|
||Talking about stammer, support, openness - 56 (21%)||Being with others who stammer - 35 (13%)|
|Short term benefit - 33 (13%)||Increased Control - 33 (13%)||
|Unhelpful aspects of therapy cited by 30 or more* (220 responses from 202 people)|
|Therapy as a child - 49 (24%)||Rate Control - 36 (18%)||Therapy not suited to individual - 30 (15%)|
|* % of number of people who responded to each question|
- The 49 people who found therapy unhelpful as a child represent 25% of those who had therapy at 16 years or younger.
- Some people commented that relaxation and breathing, on their own, were unhelpful but that when used in conjunction with other speech therapy approaches were more helpful.
- It is not clear why there were so many who didn't specify the nature of the therapy that was helpful. It may have been that they didn't see it as necessary or that they were unclear about the therapy they'd received.
- A recurring theme in this section was the importance of matching the approach not only to the person and their stammering but also to their particular needs and circumstances at the time. For example, some found they needed to work on attitudes first in order to be able to make use of a particular technique. Others needed to work the other way round. Some liked intensive therapy while others felt they needed to change more slowly.
3. Other therapies or approaches tried
In this sample, 268 (81%) had found their conventional therapy helpful so they may not have been looking for other things to try as much as a younger or less satisfied sample could have been.
At least one other approach had been tried by 163 (49%) and of these 92 (56%) had tried hypnotherapy with 90 of these commenting on its value. Only 12 people had found hypnotherapy "very good", 26 had derived "a little benefit" and the rest had not found it helpful. However, 46 had only tried hypnotherapy once or for a few sessions so it is not surprising that they derived little benefit.
Psychotherapy had been tried by 34 people but only 14 commented on its benefit and the length of therapy they had experienced. Of this tiny sample only five found it helpful, 4 of these having had therapy for six months or longer.
Although individual people had found other things helpful there were too few responses to give any clear indications of the alternative approaches that could be recommended. People who spoke positively of other therapies seemed to have found something that suited them as individuals as well as helping with their stammering. The importance of thinking about the underlying principles that a therapy is based on and considering how these fit with personal experiences and beliefs is highlighted once again.
4. SLT in the future
Many responded to this question and some had several ideas providing a total of 522 responses from 273 people. The responses fell into five categories with "more information", "more research" and "a cure" each being cited by about 50 people. "Information" covered both public awareness and more information on new techniques and developments. Research into cause and into therapy effectiveness was mentioned by 22 people and 13 specifically mentioned research into breathing.
There were many suggestions concerning therapy which were divided into service and content categories. The breakdown of these is shown in table 4 below.
|Table 4: Ideas for Stammering Therapy in the Future|
|Therapy Service Suggestions||No.||Therapy Content Suggestions||No.|
|Support when needed;||45||Better ways to control stammering;||58|
|More group therapy;||38||Therapy geared to individual needs;||34|
|More resources;||32||Help with acceptance, dealing with fear;||34|
|More specialist therapists;||18||Help with carry-over;||34|
|Earlier detection; and more therapy for children;||18||Help with carry-over;||34|
|More intensive therapy.||12||Counselling as part of therapy.||34|
We were pleased that so many people took time to respond to this section. There is plenty here to feed back to speech and language therapists and we hope the information can be used to increase resources to people who stammer.
Another area that was covered in this questionnaire was the effect that stammering has had on people's lives. The results are shown in Table 5.
|Table 5: Effect of Stammering on different aspects of people's lives|
|Effects||'a lot'||'a bit'||'not at all'||total responses|
|Life at School||186 (56%)||128 (39%)||11 (39%)||327|
|Occupation choice||127 (39%)||151 (46%)||40 (12%)||318|
|Leisure activities||45 (14%)||152 (46%)||129 (40%)||326|
|Friendships||65 (20%)||146 (45%)||112 (34%)||323|
|Relationships||79 (24%)||124 (38%)||113 (35%)||316|
Life at school was reported as being most affected and many have strong and unpleasant memories. The BSA has a schools project which attempts to address some of the problems raised. In a previous section some respondents described negative memories of therapy received during childhood so there is a need to develop more evidence based therapy options for this age group. Many NHS Trusts are forced to prioritise work with younger children and the needs of school age children are not always adequately met. Managers may need convincing that time spent in therapy with children at school is effective and represents a good use of resources in the longer term. On a more positive note - as we get better at working effectively with pre-school and primary age children so the numbers needing help later should reduce.
Occupational choice was also influenced by stammering. Surprisingly, people felt that their social lives, leisure activities and relationships were much less affected than might have been expected and this may in part, explain why relatively few people request speech therapy and why people find long term work on their stammering so hard to maintain. It is also possible that if the sample had included more people in their late teens and early twenties there would have been a different picture.
This study was well worth doing. There was so much information in the questionnaires and this article can only give a flavour of it all. Within the responses there were stories of great courage, some with happy endings and some that were sad. We have felt privileged to be able to read such thoughtful accounts of people's experiences and views. We hope that the information gained will help to improve services for people who stammer and that future surveys of this type will benefit from the work we have done. On behalf of all those involved in the Bristol Stammering Project, we would like to thank everybody who completed a questionnaire and we will ensure that the information is disseminated as widely as possible.
We wish to acknowledge the Underwood Trust for their continued support of this work and Anne Marie Cray, who started this project and then left to have a baby daughter. Rosemarie Hayhow was appointed to the project in December 1998. and can be contacted at: The Frenchay Speech & Language Therapy Research Unit, Frenchay Hospital, Frenchay Park Road, Bristol BS16 1LE
From the Summer 1999 edition of Speaking Out