Improving decision‐making in caring for people with epilepsy and intellectual disability: an action research project

Abstract

This paper is a report of an action research study aimed at improving decision-making concerning risks in people with epilepsy and intellectual disability and the empowerment of participants to sustain this improvement. Residents of long-stay units in specialized epilepsy centres suffer severe epilepsy and are often intellectually disabled. Professional caregivers have to find a balance between risk-taking and protection, as both can have a negative effect on quality of life. Clients, their representatives and caregivers are involved in this decision-making process. A participative action research project was conducted. Data were gathered continuously over a 22-month period in 2004-2006 by interviews, observation, written reports of meetings and personal stories. The action research resulted in an ongoing process of improvement. Problems in decision-making about risk were clarified. The importance of consensus about risks and commitment to risk management between all involved became apparent. Phases in risk management were discerned and used to adjust caregiving to clients' needs and capacities Assessment of client risk became more systematic and 'steps to an individual framework for decision-making' were developed as a tool for a systematic approach. Using an action research model to improve decision-making provided the preconditions for improving decision-making and risk management and suggesting a way to improve this process in this and other institutions.