The effects of cleft lip and/or palate on mealtime behaviour
Research type
Research Study
Full title
The effects of being born with a cleft lip and/or palate on mealtime behaviour
IRAS ID
231749
Contact name
Matthew Hotton
Contact email
Sponsor organisation
Oxford University Hospitals NHS Foundation Trust
Duration of Study in the UK
1 years, 9 months, 4 days
Research summary
Research Summary
Research consistently demonstrates that feeding problems result from a combination of biological, social and behavioural factors (Crist & Napier-Phillips, 2001).
Babies with a cleft palate (CP) require specialist feeding assessment and support due to structural anomalies in the mouth which make breast feeding not possible. As a result, mothers of babies with a CP often experience significant emotional challenges related to difficulties with feeding (e.g. Lindeberg & Berglund, 2014). Difficulties with feeding are often associated with fears around not being a good or capable parent and subsequently much attention of families and professionals focuses on feeding. Furthermore, there is a strong emphasis from professionals on feeding and body weight.
It is therefore hypothesised that parents of a child with a CP are more likely to be distressed by normal disruptions to feeding following initial surgery or typical mealtime behaviour once their child grows older, compared to parents of children with a cleft lip only or without a cleft, for whom initial feeding is generally less challenging. Furthermore, it could be argued that children develop a conditioned aversion to swallowing after palate repair, which may disrupt feeding initially after surgery (Di Scipio & Kaslon, 1982). The child may develop avoidance patterns, such as fussy or slow eating. Parents may therefore stick to “safe” foods, not encouraging their child to explore a wider variety of foods.
We therefore aim to carry out an investigation of the factors which impact on mealtime behaviours in children born with a cleft lip and/or palate. We will do this by requesting parents of children under the care of the Spires Cleft Centre to complete Behavioural Paediatric Feeding Assessment Scale and demographic questionnaires when they attend their child’s routine cleft clinic appointments.
Summary of Results
Infants with a cleft often have difficulty latching onto the breast and with creating effective suction, although these difficulties are less common in children with a cleft lip only. These early feeding issues may not only be associated with additional physical health issues, but have been shown to be associated with high levels of parental anxiety and low parental self-efficacy. In the United Kingdom (UK) parents of babies with a cleft receive expert feeding advice and support from Clinical Nurse Specialists and other feeding specialists.
A biopsychosocial model can be used to conceptualise how physiological, behavioural and social factors all contribute to the development of feeding difficulties throughout childhood. Children may develop a conditioned aversion to swallowing initially after palate surgery or due to factors such as nasal regurgitation or reflux, and it has been argued by some that this may lead to operant avoidance patterns, such as fussy or slow eating later on in childhood.
In addition, parental anxiety regarding early childhood feeding may lead to negative or unhelpful parental mealtime feeding behaviour, such as pleading/coaxing, which subsequently reinforces unhelpful childhood feeding behaviours
We therefore wanted to explore this idea by measuring child and parent feeding behaviour in children born with a cleft and to work out which factors impact on this behaviour and we hypothesised that children born with a cleft lip only, and their parents, will engage in fewer unhelpful mealtime behaviours than those born with a cleft palate or cleft lip and palate
Following ethical approval we recruited parents of children born with a cleft aged between 18-24 months, and those between their 5th and 6th birthdays and those between their 10th and 11th birthdays. Although we mainly recruited through our clinic in Oxford, Covid had a significant impact on the number of children we were seeing face-to-face and as such we enlisted the support of the Cleft Lip and Palate Association to help advertise our research via social media.
We did exclude certain parents, such as those with children with an unrepaired cleft, those currently tube fed, those with developmental delay or neurodevelopmental disorders, and those with any other condition which might impact on eating but unrelated to the cleft.
We asked parents to fill out a demographic questionnaire, asking a variety of questions about their child’s early life and any medical interventions they may have undergone, as well as about the wider family. We also asked them to complete the Behavioural Paediatric Feeding Assessment Scale which, amongst other things, measures the frequency of unhelpful child mealtime behaviour and the frequency of unhelpful parent mealtime strategies.
We ended up with 101 participants in total, with an even distribution of boys and girls and just as in the general population, they were just as likely to demonstrate unhelpful mealtime behaviours. Although we recruited a higher proportion of mothers, mothers and fathers were found to report similar levels of mealtime difficulties
Children born with a cleft and their parents were statistically more likely to demonstrate unhelpful mealtime behaviours if the child required medication for reflux in infancy or if they required a feeding tube of some kind.
Things that were shown not to have an effect were whether the child was born prematurely, ever on a ventilator or still had a gap in their palate following palate repair.
Children who were allowed screens, such as a tablet or television at mealtimes demonstrated significantly poorer mealtime outcomes, although it is not possible to infer causality, as the use of screens may be an attempt to manage already difficult childhood mealtime behaviour.
There was no relationship between mealtime behaviours and the number of operations a child had undergone or the age that they were at their first surgery. Nor was age of weaning associated with later problems. However, parents of children with difficult mealtime behaviours were more likely to engage in unhelpful parental feeding strategies themselves.
We explored the effect of age and cleft type and found that age predicted the total frequency of mealtime behaviours, with 10 year olds scoring significantly lower, and therefore having fewer problems, than those aged 18-24 months or 5 years of age.
Cleft type was also found to significantly predict the total frequency of mealtime behaviours, above and beyond the role of age, with children born with a cleft lip and palate and their parents, but not a cleft palate only, demonstrating significantly more unhelpful mealtime behaviours than those with a cleft lip, although cleft palate did near significance
Children born with a cleft, and their parents, may therefore experience a greater frequency of difficult mealtime behaviours if they: have a cleft lip and palate, compared to a cleft lip, if they required medication for reflux, if they required a feeding tube or are allowed screens at mealtimes. As in the general populations these difficulties tend to reduce with age.
There are some clear limitations of this study. Partly due to the study being paused because of the covid pandemic, we had a relatively small sample size and there may be a potential role of selection bias, with parents who were already concerned about their child’s eating potentially being more likely to take part in the research. In addition, we did not separately analyse sub-groups potentially at higher risk, such as those with Pierre Robin Sequence, nor did we separately analyse those with a unilateral or bilateral cleft lip and palate, in order to avoid there being too few participants in any one group.
In terms of clinical implications, it it important to continue to provide feeding support beyond infancy, particularly for those who might be at higher risk. In addition, there is a clear role for the involvement of clinical psychologists, particularly where there are behavioural elements to feeding difficulties or in situations where parents are experiencing anxiety regarding feeding.
REC name
South Central - Berkshire Research Ethics Committee
REC reference
19/SC/0081
Date of REC Opinion
20 Feb 2019
REC opinion
Favourable Opinion