Exploring the experiences of self-determination of individuals with mild intellectual disabilities and epilepsy.

BACKGROUND: While epilepsy can decrease quality of life and self-determination in individuals without intellectual disabilities, the impact of epilepsy on experienced self-determination in people with intellectual disabilities remains unclear. METHOD: We conducted semi-structured interviews with six adults (four men, two women) aged 30-61 with mild intellectual disabilities and drug-resistant epilepsy to investigate their experiences of self-determination. The data were analysed using Interpretative Phenomenological Analysis. RESULTS: Three main themes were identified: (A) I am a competent person with epilepsy; (B) My social needs: being accepted as I am and stability in relationships; and (C) Being in control. CONCLUSIONS: In this study, the impact of epilepsy on experienced self-determination of people with mild intellectual disabilities outweighs the influence of intellectual disabilities. Identity formation, friendships with peers, and autonomy support in risk management are identified as important topics in supporting this group.

Multimodal nocturnal seizure detection: Do we need to adapt algorithms for children?

OBJECTIVE: To assess the performance of a multimodal seizure detection device, first tested in adults (sensitivity 86%, PPV 49%), in a pediatric cohort living at home or residential care. METHODS: In this multicenter, prospective, video-controlled cohort-study, nocturnal seizures were detected by heartrate and movement changes in children with epilepsy and intellectual disability. Participants with a history of >1 monthly major motor seizure wore Nightwatch bracelet at night for 3 months. Major seizures were defined as tonic-clonic, generalized tonic >30 s, hyperkinetic, or clusters (>30 min) of short myoclonic or tonic seizures. The video of all events (alarms and nurse diaries) and about 10% of whole nights were reviewed to classify major seizures, and minor or no seizures. RESULTS: Twenty-three participants with focal or generalized epilepsy and nightly motor seizures were evaluated during 1511 nights, with 1710 major seizures. First 1014 nights, 4189 alarms occurred with average of 1.44/h, showing average sensitivity of 79.9% (median 75.4%) with mean PPV of 26.7% (median 11.1%) and false alarm rate of 0.2/hour. Over 90% of false alarms in children was due to heart rate (HR) part of the detection algorithm. To improve this rate, an adaptation was made such that the alarm was only triggered when the wearer was in horizontal position. For the remaining 497 nights, this was tested prospectively, 384 major seizures occurred. This resulted in mean PPV of 55.5% (median 58.1%) and a false alarm rate 0.08/h while maintaining a comparable mean sensitivity of 79.4% (median 93.2%). SIGNIFICANCE: Seizure detection devices that are used in bed which depend on heartrate and movement show similar sensitivity in children and adults. However, children do show general higher false alarm rate, mostly triggered while awake. By correcting for body position, the false alarms can be limited to a level that comes close to that in adults.

Diagnostic accuracy of audio-based seizure detection in patients with severe epilepsy and an intellectual disability.

UNLABELLED: We evaluated the performance of audio-based detection of major seizures (tonic-clonic and long generalized tonic) in adult patients with intellectual disability living in an institute for residential care. METHODS: First, we checked in a random sample (n=17, 102 major seizures) how many patients have recognizable sounds during these seizures. In the second part of this trial, we followed 10 patients (who had major seizures with recognizable sounds) during four weeks with an acoustic monitoring system developed by CLB ('CLB-monitor') and video camera. In week 1, we adapted the sound detection threshold until, per night, a maximum of 20 sounds was found. During weeks 2-4, we selected the epilepsy-related sounds and performed independent video verification and labeling ('snoring', 'laryngeal contraction') of the seizures. The video images were also fully screened for false negatives. In the third part, algorithms in the CLB-monitor detected one specific sound (sleep-related snoring) to illustrate the value of automatic sound recognition. RESULTS: Part 1: recognizable sounds (louder than whispering) occurred in 23 (51%) of the 45 major seizures, 20 seizures (45%) were below this threshold, and 2 (4%) were without any sound. Part 2: in the follow-up group (n=10, 112 major seizures; mean: 11.2, range: 1-30), we found a mean sensitivity of 0.81 (range: 0.33-1.00) and a mean positive predictive value of 0.40 (range: 0.06-1.00). All false positive alarms (mean value: 1.29 per night) were due to minor seizures. We missed 4 seizures (3%) because of lack of sound and 10 (9%) because of sounds below the system threshold. Part 3: the machine-learning algorithms in the CLB-monitor resulted in an overall accuracy for 'snoring' of 98.3%. CONCLUSIONS: Audio detection of major seizures is possible in half of the patients. Lower sound detection thresholds may increase the proportion of suitable candidates. Human selection of seizure-related sounds has a high sensitivity and moderate positive predictive value because of minor seizures which do not need intervention. Algorithms in the CLB-monitor detect seizure-related sounds and may be used alone or in multimodal systems.

Action research: what, why and how?

Action research is a form of research that enables practitioners to investigate and evaluate their own work. It is increasingly used in health care research; it is a research strategy in which the researcher and practitioners from the setting under study work together in projects aimed at generating new knowledge and simultaneously improving practice. This article gives an overview of the theoretical background of action research, its international historical development and explanations of its varied forms and related practical applications. Ethical problems are discussed as are questions of rigour The article shows that action research can be used to bridge the gap between theory and practice by generating knowledge fitting the particular circumstances in the practical setting, thereby avoiding problems of implementation of research findings due to lack of fit or lack of motivation. Action research lastingly increases the capacities of practitioners to solve problems encountered in practice.

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.