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Parenting a child with a cleft: the father’s perspective

Flo was born with a bilateral cleft lip and palate. Photo used with kind permission of the family. This image must not be re-used elsewhere

Flo was born with a bilateral cleft lip and palate. Photo used with kind permission of the family. This image must not be re-used elsewhere

15 October 2013

New research by the Cleft Collective reports on fathers experiences of having a child with a cleft lip/palate. Fathers play a key role in their child's development but have so far been neglected in cleft research. This study shows that fathers have a number of information and support needs which are not currently being met.

Cleft lip/palate is the most common congenital craniofacial condition, affecting one in every 700 babies born per year in the UK.  Following a diagnosis of cleft in their child, parents are likely to feel shocked and daunted by the potential challenges that lie ahead. Being able to access the appropriate support when it is needed is vital to the psychological adjustment of families affected by cleft.

Fathers play a key role in their child's development and have a strong influence over the wellbeing of the family unit as a whole.  Despite this, research in this field has focused almost exclusively on the experiences of mothers, and has neglected the views of fathers of children born with a cleft.

In response to the need to provide appropriate support to all members of the family, Nicola Stock (Research Associate for The Cleft Collective) interviewed fifteen fathers from across the UK about their experiences of having a child with cleft lip/palate.

Fathers reported a number of experiences which are comparable to those reported by mothers in previous research.  Specifically:

  • Non-specialist health professionals (including sonographers, midwives, GPs and health visitors) often lack the knowledge, experience and skills necessary to provide appropriate support to families following the diagnosis and birth of a child with a cleft lip/palate.  This can have long-term damaging effects on the psychological adjustment of families.  Standardised training for non-specialists, as well as the provision of appropriate information and materials at the time of the diagnosis is needed to offer support to families until they are referred to a specialist cleft team.
  • Families may need additional support around the following areas: dealing with other people’s reactions, coping with their child’s change in appearance following surgery, knowing how to raise the topic of cleft with their child once their child is old enough to understand, getting access to genetic counselling and understanding the environmental and genetic contributors to cleft lip/palate.
  • Many positives come from having a child with a cleft lip/palate, including personal growth, developing resilience and being able to support other families in a similar position.

In addition, this research raised a number of issues specific to fathers:

  • Fathers felt there was little support available for expectant fathers in general.  Having a child with ‘additional needs’ made this more evident.
  • Following their child's diagnosis, fathers often adopted an information-seeking and support-giving role.  They believed they had to remain proactive, strong and positive in order to support their partner and child effectively, but in doing so felt there was no outlet for their own thoughts and emotions.
  • There are fewer networking opportunities for fathers and they often do not get the chance to speak to a health professional about their concerns without their partner being present.  Better support for fathers which addresses their individual information and support needs should be established.
  • The adequate inclusion of fathers in future studies should be a priority for researchers in this and associated fields.

A number of other original findings resulted from this research:

  • Although the support provided by the cleft teams is highly regarded, this support tends to trail off after the child’s initial operations are completed.  Direct access to multidisciplinary support should be available throughout the child’s lifespan.  The type and intensity of the support needed is likely to vary.  A range of support options should therefore be made available, based on a ‘stepped’ approach to care.
  • Research with children who have additional conditions, such as Pierre Robin Sequence and cleft-related syndromes is lacking.  Further research with parents who have a diagnosis of cleft themselves is also needed.

Thank you to all of the fathers who took part in this research and to the Cleft Lip and Palate Association for all of their support with this study.  Please direct any questions about this research to Nicola Stock, Research Associate for The Cleft Collective: Nicola2.Stock@uwe.ac.uk.

 

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