Research Opportunity: Speech Outcome Measurements at GOSH
Children and young people born with a cleft and their parents are invited to discuss the ‘Outcome Measures’ used in Speech and Language Therapy at Great Ormond Street Hospital.
“My name is Holly Stanford, and I am a Speech and Language Therapy Student at UCL working with the Cleft Speech and Language Therapy Service at Great Ormond Street Hospital. My supervisors at GOSH are Nicole Prendeville, a Specialist Speech and Language Therapist, and Marie Pinkstone, the Joint Head of Speech and Language Therapy.
We are running engagement group sessions with parents, young people and children. These discussions will help us review the Outcome Measures that are used in our Cleft Palate +/- lip speech service.”
There will be three Engagement Groups held over zoom; one for parents and carers, one for young people (12-20 years old), and one for children (9-11 years old)
If you’re interested in taking part, please let GOSH know which dates you can make using the form for parents/carers or for children and young people.
What are ‘Speech Outcome Measures’?
An ‘Outcome Measure’ is a way of showing the impact of a treatment, such as speech and language therapy.
The outcome measures in this care are used to understand how a cleft impacts a child’s speech and quality of life. The ones being evaluated in this project are questionnaire-type forms completed by both parents/carers and children aged 8 or older when they attend the clinic. The questions are around things like how often someone worries about not being understood by others and how they feel about their voice sounds.
The information provided on these questionnaires helps the Speech and Language Therapist understand what is most important to parents/carers and the child and what further support might be offered to help meet these needs.
For Parents/Carers
Do you have a child with a cleft palate (with or without a cleft lip) who is a patient at GOSH’s Cleft Speech and Language Therapy Service?
We would like to invite you to an Engagement Group to hear your thoughts on Speech Outcome Measures.
We are trying to find out what type of Outcome Measure best reflects the communication needs and interactions of your child. We’d also like to know how easy it is for you and your child to complete these questionnaires and if you think anything is missing from them.
We will send you the Outcome Measures before the engagement group via email.
You can participate even if your child does not have speech difficulties – all experiences and perspectives are valuable and will enrich the discussion.
For Young People (12-20 years old)
Do you have a cleft palate (with or without a cleft lip), and are you a patient at GOSH’s Cleft Palate Speech and Language Therapy Service?
We’d like to invite you to join an interactive discussion about Speech Outcome Measures. These help Speech and Language Therapists understand how your cleft palate and speech impact your life. We’ll send these to you before the session so you can look at them beforehand.
Your views and opinions are really important to us and will help us support you and other young people and children with cleft palate.
This will also be an opportunity to meet other young people with cleft palate and share your experiences in a safe space.
For Children (8-11 years old)
We want to talk to you and other children with cleft palate about Outcome Measures.
Outcome Measures are questionnaires that your Speech and Language Therapist uses to learn more about you and your speech.
We will also talk about:
- Your hobbies
- Your friends and family
- School
- Your speech
How to Take Part
We would like to encourage people from all backgrounds to participate, including those who speak English as a second language.
With your consent, we would like to video-record the sessions to refer back to following the sessions to capture your feedback accurately.
If you think you and your child will be able to take part in the engagement groups, please email [email protected] as soon as possible to confirm your attendance. In this email, please tell us if you or your child has ever had an x-ray of their speech.
Participation is optional and you can opt-out at any time, even if you have confirmed your attendance.
If you have any questions, please email [email protected]
