Restrictive practice in the care of people with Prader Willi Syndrome - a review of literature

Abstract

Most people with Prader-Willi Syndrome (PWS) aspire to live independently. However, their condition means they never feel full, so they always want to eat. They can also tolerate much larger amounts of food in their stomach than people without PWS can and are therefore at increased risk of life-threatening gastric rupture. If access to food is not restricted they are at risk of rapid deterioration of health, increased safety risk and premature death. Parents, carers and authorities struggle with the tension between maximising individual choice and control, satisfying carers duty of care and providing a safe workplace for support workers. There is a need for clear, justifiable, evidence-based guidelines for the care of adults with PWS, which are consistent with international human rights law and are possible to implement in a variety of settings around the world. The ‘Choice and Control’ project aims to produce such guidelines. As part of this project, we are undertaking a review of law regarding restrictive practices for people with PWS in multiple jurisdictions. We will present our findings and discuss how they relate to the development of guidelines on restriction of access to food.