Why are you collecting psychology data?

Having a baby born with a cleft can be a stressful and emotional time for families. 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.

To date, very little evidence exists for psychological interventions used in cleft care. In addition, psychological research has often relied upon cross-sectional data and small samples. The Cleft Collective Cohort Studies will allow for the collection of longitudinal data from every cleft team in the UK, which will be used to inform future psychological support and intervention.

What psychology data are you collecting?

We will collect information about the wellbeing of the parents and children in our study through the use of standardised and specially developed psychology 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.

Download a comprehensive list of the Psychology measures (PDF, 109kB) being used in The Cleft Collective Cohort Studies.

What will happen to the psychology data?

We will store any psychological data that families provide securely and anonymously at the University of Bristol. This information will form a large dataset which researchers will be able to use to investigate the psychological impact of cleft lip/palate.

As part of the National audit process, we have also agreed to share the psychology data we collect at age five with the cleft psychologists. This will allow every psychologist working in cleft in the UK to collect a consistent core data set. We hope this data will help to provide evidence for both the need for psychology in cleft teams, and a record of the psychological wellbeing of the patients involved. Once a cleft team has begun recruiting families into The Cohort Studies and has agreed to take part in the proposed five-year audit process, with the families permission, we will send them a photocopy of Section F (‘Your Wellbeing’) for every questionnaire we receive at age five from their patients. We have also provided the cleft psychologists with information about how to score each of the psychology questionnaires, and a copy of a simple database which they can use to enter and analyse their data.
Please contact us for questionnaire scoring information and a copy of the database.

How can I get involved?

For information about how your cleft team is involved in The Cleft Collective Cohort Studies, please contact us.

If you are a health professional working outside of the UK, or in a related field, please contact us for more information about the research and about potential collaborations.