Understanding posterior drooling in children and young people with neurodevelopmental disabilities: a parental perspective.

Background: Saliva control problems in children and young people with neurodevelopmental disabilities are classified as anterior drooling (i.e. loss of saliva from the mouth) and posterior drooling (i.e. saliva spillage into the oropharynx). Posterior drooling poses serious health risks, but is often missed or misinterpreted. This study explored how parents perceive its symptoms and impact on daily life.

Methods: Semi-structured focus group discussions were conducted with parents of children with posterior drooling, directed toward observable signs and impact on children as well as family. Sessions were recorded, transcribed, and thematically analysed.

Results: Three focus group sessions were conducted (total n = 12). Posterior drooling generally manifested across four domains: (1) head and throat, (2) airways, (3) stomach, and (4) whole body. The impact of posterior drooling encompassed effects on children's well-being, social participation, independence, and interference with other conditions. For parents, posterior drooling posed practical, emotional, and social challenges and burdens - such as constant vigilance due to fear of choking, frustration about lack of effective treatment, and limited ability to participate in family or social activities - placing a considerable burden on daily life and caregiving.

Conclusions: This qualitative study offers valuable initial insights into how parents characterise posterior drooling, shedding light on crucial information to enhance recognition and diagnosis. The findings underscore the need for earlier detection and identification of posterior drooling symptoms, supported by improved communication between healthcare professionals and families through a shared language that bridges clinical and everyday observations. The extensive impact on children and families also highlights the urgency of providing clearer guidance to parents on managing fluctuating or worsening symptoms, and of developing more comprehensive, tailored care strategies.