'Doing the "right" Thing': How Parents Experience and Manage Decision-making for Children's 'normalising' Surgeries

Using cleft lip and palate as an exemplar, this article examines parents' decision-making for children in the context of elective treatments which aim to 'normalise' a child's function, appearance, communication or identity. Using purposive and theoretical sampling, 35 parents with children from infancy to young adulthood were recruited through a specialist cleft centre in England. Parents were interviewed in-depth between 2006 and 2008 about their beliefs and motivations in relation to treatment decision-making in this context. A grounded theory approach was used to analyse the data. Findings revealed a core category, 'doing the "right" thing', that encapsulated parents' main concern in relation to their children's treatment and highlighted several emotional, social and cultural considerations underpinning their decision-making stance. Parents fulfilled a perceived 'moral' obligation to be 'good' parents by pursuing the 'normalising' treatments, particularly surgeries, made available to their children. Such treatments were viewed as a way of facilitating their child's social inclusion and helping them reach their full potential. In order to enable their continued pursuit of treatments over the long-term, parents also constructed specialist practitioners as highly competent and particularly trustworthy. This article captures the complexities involved in parents' decision-making for children's elective 'normalising' treatments, where both functional and appearance-related concerns are involved. It suggests that social norms about parenting, physical appearance and healthcare practitioner power may significantly shape decision-making in this context, so that such choices may be viewed primarily as 'moral' rather than social. Services could support parents with such challenges, by gauging their needs for information about surgery and its likely outcomes and providing emotional/decisional support to consider all available options.