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People who have an advanced laryngeal cancer will often be faced with major surgery to remove the larynx (total laryngectomy|). This results in permanent separation of the upper and lower respiratory tract and leaves the person with a permanent neck stoma. These changes alter the way in which a person can perform vital functions, such as breathing, eating and producing voice. These then result in many rehabilitation challenges, including adapting to changes in body image and learning a new way to produce voice.
One of the ways in which laryngectomees and their carers in Brighton receive support is through Yakity Yak|, a local laryngectomy support group at the Sussex Cancer Centre, which is part of the Sussex Cancer Network. Our project In 2009, during one of the Yakity Yak meetings, several stories were shared within the group about the challenges of communicating in public places.
Following this, the group decided to design an education tool to share with the local community about communicating after laryngectomy. We sought funding and approval from Macmillan and the network to create two short films - the first to educate the public about communication issues, and the second for people living with the long-term effects of laryngectomy. Funding was approved in December last year and we got to work.
Several focus groups were arranged and we also worked with another support group called Necks Best in Sussex|. With the help of Michael Danks, a professional film producer, we designed the films with a local theme, including local figures such as the police. We also filmed in buses and at the local train station.
Michael said, ‘Questions across the subjects elicited a rich variety of responses. The individual contributions were edited together to provide a seamless voice of a group with a coherent message.’
We wanted to make the films widely available to the public and also target specific local groups. This gave us the idea of sharing the films on YouTube.
After weighing up the risks and benefits of sharing information of a personal nature, the group agreed unanimously to post the first film on the website. It was then agreed the second film would be used to support laryngectomees, their carers and families after surgery.
You can watch the film about communication on YouTube|. Both films are also on Learn Zone|. The films are also in DVD format from Chris and Jo, for £5 each, as a contribution towards postage and package (see the end of this article for contact details).
Making time to meet the film producer and ensuring the films delivered the key messages were the two main challenges. It was a struggle meeting specific deadlines while working with outside agencies, as well as carrying out our daily clinical duties.
An important aspect of filming was to allay fear among some of the group members when being filmed. The producer gained their confidence very quickly by attending support group meetings and filming as and when needed. This allowed a relaxed environment, creating a trusting friendship between the producer and the laryngectomees.
Since posting the first film about communication issues on YouTube it has become clear to us how useful others find and use this resource. The film has had over 38,000 hits and 34 people have taken the time to write specific comments. Some of the comments we received include how the film has given support and reassurance to families and carers, and people before and after laryngectomy.
We ran a small local survey of people within the hospital who had viewed the film to gather some feedback. So far 100% of those who have watched the film would recommend it to others. 60% felt it could be used in the workplace as part of a training package. 40% of those who watched the film said they come into contact with a person who has a communication difficulty at least once a day. Overall, 80% felt that it was a positive experience to watch the film, with 60% stating they had gained new knowledge.
The members of the support group were all surprised at how much they learned and enjoyed the experience. One particular member has put his thoughts in writing:
‘When it was first suggested I was doubtful I could make a positive contribution, as I was concerned about the quality of my voice. When we all started chatting about the subject, I realised what a great idea it was. It was a very worthwhile project and one that I am proud to have been asked to contribute to.’
The positive feedback we have received from YouTube and from the survey responses has encouraged us to share the DVD with specific groups to support education and health promotion.
Our local hospital Trust and the community NHS services have shown interest in using this communication film within their staff induction programmes. We have shared the films with other local services including the police force, ambulance service, fire and rescue services and Gatwick airport.
Email Chris Payten|, Macmillan Head and Neck Speech and Language Therapist Sussex Cancer Network, Brighton.
Email Jo Kerr|, Macmillan Head and Neck Clinical Nurse Specialist, Sussex Cancer Network, Brighton.
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