Stammering under lockdown

5th June 2020

Over April and May 2020 we sent out a series of surveys to find out about life under lockdown. Thank you to everyone who gave their time to respond. You also gave us great feedback on what you want from Stamma.

We asked parents of children who stammer on our database about their experiences, as well as speech & language therapists (SLTs) about theirs. Finally we asked all our supporters about the impact lockdown has had on the lives of people who stammer and the services available to them.

This summary highlights the key messages from those surveys, focusing on those questions which received a significant number of responses. Some of the commentary draws on multiple questions, pulling together the picture from across the surveys. The percentages quoted are of those who answered each question. Not everyone answered every question.

Many stammering more under lockdown

58% of parents said their children were stammering more under lockdown (see fig. 1), with a third becoming more worried about their child’s speech.

In adults, 39% reported that they were stammering more (see fig 2).

In May we received the highest number of calls in a single month to our helpline from parents. While we can see demand for help is high, unsurprisingly the ability to get that help has reduced. Our survey of speech & language therapists (which we reported on in April, see our article here), found that 43% were offering only a limited service and 10% had been redeployed because of the coronavirus outbreak, working as healthcare assistants for example. Where therapy remains available, it has moved online, using video calling platforms such as Zoom, Facetime, Skype or WhatsApp, or over the phone.

Pros & cons of lockdown

Over half of the respondents who stammer said they were talking less in day-to-day life, though this may reflect the reduced interactions during lockdown rather than a deliberate choice. When asked specifically about work, the majority of respondents affected pointed to greater use of phone and video conferencing. Many agreed this was exhausting (55%).

Feedback on lockdown wasn't all negative. The 'positives' included enjoying talking less and seeing the extra phone practise as an opportunity. One said, "The home environment is quieter than the office and possibly more relaxing, so I think it has helped my stammer." Another said, about Zoom, "Lots of people's speech becomes 'dysfluent' with the technical glitches…people become more used to being asked to accept glitchy speech!" 

What support is needed?

The main ask of Stamma from parents of children who stammer was for information. 50% of the 52 respondents wanted to know how to support a child at home (see fig. 4). The survey also asked parents about their use of our existing information: 60% said they had already used the literature and 75% asked to be sent more. This included requests for information to pass on to a child's teacher. 

The last few months have been all about adapting to a changed world, so we thought it worth asking about people's priorities in terms of what Stamma is offering (see fig. 5). The responses to these questions keep us focused on planning our work ahead. The top three asks from members were:

• To be kept up to date with activities and services (68%).
• To help connect with others (33%).
• To get involved with campaigns (24%).

We asked pretty similar questions back in January 2019, out of which emerged the need for a webchat service, which we launched this May. It's worth noting that this new service will help meet the requests highlighted here, providing another route to give information and help meet people's needs, whether offering ideas for connecting with others or empathetic listening.

Putting resources into helping people meet others who stammer ranks highly for many members. This finding echoed another question, where 40% of respondents said they'd like contact details for their local group. Following discussions with local group organisers in May, we've added a calendar to our website, so people can see which groups are meeting online and when.

Feedback

We  also asked for feedback on our existing services, and 87 supporters responded (see fig. 6). Three areas were marked as 'good' or 'excellent', these were:

• The website.
• Our literature.
• Our campaigns.

The helpline and Facebook group received positive feedback, but here there were far fewer responses. This may reflect the fact that many helpline and Facebook users are not members of Stamma and so didn't receive or see this survey.

There were also lots of comments and suggestions on our services. A clear point was a desire to raise Stamma's profile – several said they had only recently realised it existed. 

Other suggestions included, "I would love to see more information I could share with my current or future employer", "People who don't stammer need to be targeted as part of campaigns."

Conclusions 

As with all small surveys, the results are indicative. Having said that, the key takeaways are:

1. The insights into lockdown reinforce the point that 'one size does not fit all' for people who stammer. What is a problem for one person may be an opportunity for another. 
2. Membership/representation. Whilst our Facebook group is huge, responses here are slim which suggests that many of our Facebook group members are not on our mailing list. Similarly, we've had fewer responses from those using our services. There's scope for reaching out.
3. Stamma's reach. Are we targeting wide enough, do we reach enough teachers, do we reach enough employers?

The surveys also reinforce that Stamma's work has two audiences – people who stammer, and people who don’t.  We need to raise the profile of Stamma among those who stammer and raise awareness of stammering among those who don't.

Once again, many thanks to all who contributed to the surveys, and thank you to Helen Allen for her diligent work in analysing the data for us.

Notes

The surveys were conducted over April and May. Parents survey: a link was sent via email to those who indicated they were parents of children who stammer. 141 clicked the link and 53 (38%) completed all or part of the survey. Membership survey: a link was sent via email. 1,141 opened the email, 114 (10%) clicked on the link and completed all or part of the survey. The SLT survey: a link was sent via email to 196 members who indicated that they were an SLT, and further shared within relevant UK SLT professional networks and on social media. 114 SLTs completed all or part of the survey.