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

AIM: 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. BACKGROUND: 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. METHOD: 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. FINDINGS: 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. CONCLUSION: 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.

Decision-making about risk in people with epilepsy and intellectual disability.

AIM: This paper reports a study of the process of risk-evaluation and subsequent decision-making in the care for people with epilepsy and intellectual disability. BACKGROUND: People with intellectual disability and severe epilepsy are at risk of suffering accidents during seizure, and often need protection. Whether to implement protective measures or to accept risk is a complex decision, burdened with uncertainty. Taking risks can lead to dangerous, sometimes life-threatening situations, while protective measures are restrictive and may raise ethical concerns. METHODS: In 2003 a multiple embedded case study was conducted with 15 clients. In each case, the client, their representative, care-manager and nurse were interviewed. FINDINGS: The decision about whether to accept risks or implement protective measures was always taken in relation to specific events, and varied from medication and supervision to total restriction of the client's mobility. Decision-making was influenced by frequency, type, predictability and consequences of seizures; the effectiveness and practicability of protective measures; additional disabilities; characteristics of the client and their representative; and characteristics of nurses and organization. The predominant factor was the attitude of the representatives. They determined the relative weight of the other factors involved. CONCLUSION: A systematic approach to risk management could considerably improve the balance between risk and quality of life. Continuous evaluation would make it possible to tune the application of protective measures to the severity of the seizures at any time, and to avoid protective measures being maintained only because care providers have become accustomed to them. A systematic assessment of clients' capabilities to participate in this complex decision-making process is equally indicated.