Fighting the Invisible Enemy: Being a Parent of a Child Who Has Been Given Diagnosis of Pervasive Refusal Syndrome

Pervasive Refusal Syndrome was introduced to the child and adolescent psychiatric literature by Lask, Britten, Kroll, Magagna and Tranter in 1991. It is not a formal diagnosis classified within the DSM-V (APA, 2013) or ICD-10 (WHO, 1994). However, it is employed clinically as a descriptive label to denote a specific constellation of symptoms. It is understood to be characterised by a profound and pervasive refusal across different domains: eating, drinking, speech, mobilisation, and personal care (Lask et al., 1991). It is reported to be accompanied with an active rejection of help, social withdrawal and school refusal (Lask et al., 1991; Thompson & Nunn, 1997). A literature review highlighted that perspectives on PRS are predominantly based on expert professional opinion; the experiences and perspectives of children and their families are underrepresented. This exploratory study aimed to address this gap in the literature by examining how parents made sense of their child being given a diagnosis of PRS and what it was like to experience their child being unwell. Furthermore it aimed to explore how parents experienced and negotiated the treatment process. Semi-structured interviews were conducted with eight participants. The data generated from the interviews was analysed using Interpretative Phenomenological Analysis. Three superordinate themes were identified and represented: parents’ perspectives and experiences of PRS and its treatment; parents’ experiences of and relationships with professionals; and the personal “journey” that parents experienced. The findings suggested that parents’ experiences and meaning making processes were delineated by stages, which reflected the trajectory of their child’s difficulties. It seemed each stage brought new experiences, understandings and challenges. This study has provided a novel contribution to the literature and has offered new insights into the diagnosis from the perspective of a parent. The implications for clinical practice and recommendations for future research are outlined.