Utilising digital services to empower the unpaid carers of individuals with long-term complex needs

Abstract

This study is developing sociotechnical responses to the challenges that families in England experience as they provide unpaid care for their children with profound disabilities such as autism, cerebral palsy and genetic disorders. A point of commonality between the families being the intense and enduring care work that is placed upon them, their complex lives inhibiting social interactions and negatively affecting their health and quality of life. The National Health Service in England is promoting a policy of "Personal Health Budgets" to address this burden of care, and although successful in some regions of England, has not been adopted nationally and lacks infrastructural support. This project seeks to address the families' challenges through Participatory Action Research and Participatory Design, providing a set of design criteria for a technology to share assets and knowledge between the families, exploring trust and governance such that families can build an infrastructure to support one another in realising the potentials of Personal Health Budgets.