Pervasive Refusal Syndrome(PRS): Parents' and children perspectives-V1
Research type
Research Study
Full title
Pervasive Refusal Syndrome (PRS): Perspectives of Parents’ and Childrens’ Views (About the Diagnosis and their Experiences)
IRAS ID
160511
Contact name
Emma Smith
Contact email
Sponsor organisation
University of East London
Duration of Study in the UK
0 years, 10 months, 31 days
Research summary
This exploratory study aims to increase understanding of children and parents’ views of the diagnosis of Pervasive Refusal Syndrome (PRS), their lived experience and their opinions on what aspects of their care they found useful over the longitudinal course of treatment. A more general aim of this study is to afford an opportunity for children and parents to provide an additional contribution towards the commentary which at present is influenced by dominant medical narratives around PRS. The personal experiences of children who have been given a label of PRS do not exist within the literature. Similarly parents’ perspectives are limited. Little is known about children and parents’ views of the diagnosis, their experiences of being given a diagnosis, treatment of the symptoms and the journey to recovery. This research aims to address this gap within the existing literature by seeking to answer the research questions: How do children/young people make sense of their experiences and what is their view and understanding of the label of PRS? How do parents/caregivers understand and view the label of PRS given to their child and what is their experience of caring for a child with this range of experiences? In addition the study aims to measure children and young peoples' current level of functioning and well-being in order to provide information about what recovery constitutes in this population.
REC name
London - Bromley Research Ethics Committee
REC reference
14/LO/1651
Date of REC Opinion
21 Oct 2014
REC opinion
Further Information Favourable Opinion