Pervasive Refusal Syndrome (PRS). Understandings and Perspectives of Treating Professional Working with Children and Young People.

Pervasive refusal syndrome (PRS) is a descriptive label given to a constellation of difficulties with predominating features of refusal and rejection of help across several domains - walking, talking, eating, drinking and self-care. The severity of the presentation is often life threatening. It is a contested diagnosis, with debate regarding both its diagnostic specificity and aetiology.

Despite the fact that management almost always requires extensive input from a multi-disciplinary team (MDT) at a tertiary level of care, there is considerable opacity surrounding what constitutes an effective intervention. This research is the first to qualitatively analyse the understandings and perspectives of professionals, from a range of disciplines, who have experience of working with children and young people given a label of PRS. The overarching research question is: what are the understandings and perspectives of treating professionals working with children and young people who have been given the clinical diagnosis of PRS?

Semi-structured interviews were used with eleven participants who had experience of working with presentations termed PRS in an inpatient psychiatric service. Thematic analysis yielded three core themes: Making Sense, Uncertainty and Our way.

The findings expand on previous literature regarding clinical management with this population. They add new insights to the area, contribute towards practice-based evidence and inform service development. Recommendations are clearly outlined with the aim of increasing consistency, coherence and confidence amongst services working with this population. These include the need to facilitate strong therapeutic relationships with both individuals and their families, enable consistent and clear communication amongst teams and establish novel clinical networks. Theoretical and research recommendations, which widen the lens and draw together different frameworks, are also suggested as a means of developing a more holistic paradigm to understand the distress.