Background Pierre Robin Sequence (PRS) is a rare condition with an incidence of approximately 1:15,500 births. The condition involves a cleft palate, a small lower jaw and a tongue that can sit high up into the cleft palate, causing partial or full airway obstruction and feeding difficulties. The treatment depends on the severity of the condition, with most cases in the United Kingdom being managed by a nasopharyngeal airway - a plastic tube inserted via the nose, which sits on the tongue pressing it down and preventing it from obstructing the airway.Research Karine Latter, lead clinical nurse specialist in the Trent regional network for cleft lip and palate, recruited 25 families into the study from five national cleft networks, through the lead nurses, and conducted in-depth, open-ended interviews at home to explore experiences, views and feelings concerning the care and support they received.
Three key themes emerged from the study: impact, coping and communication.
Solution - Standards of Care and Service provision developed with service users. The standards were ratified at April's annual general meeting of the National Nursing Clinical Excellence Network for Cleft Lip and Palate, which is affiliated to the Craniofacial Society of Great Britain and Ireland. They will be audited in the first year.
You can read more about the research here http://bit.ly/1L7IGPr