Why are you collecting Psychology data?

Having a baby born with a cleft can be a stressful and emotional time for families. Diagnosis, birth, feeding and surgery are all key milestones for parents. As the child grows older, they may also encounter challenges associated with looking and sounding a little different from their peers. While most people affected by cleft cope very well with these challenges, having the right support in place when it is needed is crucial.

The main aim of the Psychology aspect of the Cohort Studies is to address one of the three key questions that parents often ask: “Will my child be OK?”
By asking the parents and children in our study questions about their wellbeing, we hope to identify the key difficulties that families may experience, and to develop and improve the support that is available to anyone affected by cleft lip/palate.

What Psychology data are you collecting?

We are asking parents and children in our study to complete questionnaires about the impact of cleft lip/palate on their wellbeing over recent months. This includes questions about stress, support from friends and family, satisfaction with the child’s treatment and the child’s development.

How and when are you collecting Psychology data?

We will collect information about the wellbeing of the parents and children in our study through the use of standardised and specially developed questionnaires. These questionnaires have been carefully chosen with the help of the cleft psychologists working in cleft teams around the UK.

We will send these questionnaires to families at key points during their child’s development. Families will receive questionnaires at the time they enrol into the study and when their child is 18 months old, 3 years old, 5 years old, 8 years old and 10 years old.

What will happen to the Psychology data?

The psychology data will be used to identify the key difficulties that families experience and to develop and improve support that is available to anyone affected by cleft lip/palate.
We will store any information that you provide securely and anonymously at the University of Bristol. In the future researchers will be able to access this data to carry out studies on the psychological impact of cleft lip/palate.

When your child is aged 5 years, we may also share Section F (‘Your Wellbeing’) of the questionnaire with your cleft team. This is so the cleft team can use this information at their 5-year audit clinic, and so that you do not have to answer the same questions twice. Information about this is provided in your Participant Information Sheet, and you will have been asked permission to share this data with your cleft team. If you have any questions about this, please contact us directly or speak with your cleft team.

How can I get involved?

If you are eligible to take part in The Cleft Collective Cohort Studies, please contact your cleft team. For other opportunities with us and to receive updates on the research progress, please visit our involvement page.

Useful links:

The Cleft Lip and Palate Association provide support and information to anyone affected by cleft lip/palate in the UK.