Vera Munde

Alertness in individuals with profound intellectual and multiple disabilities: A literature review

Direct support persons (DSPs) often face problems in observing and determining alertness in individuals with profound intellectual and multiple disabilities (PIMD). A literature study was carried out to gather information about the problems just described. A search of two electronic databases and the references found in relevant hits revealed 42 relevant publications. The results show that two types of descriptions of alertness can be distinguished: (1) those with a focus on the individual only or (2) those with a focus on the interaction of individual and environment. Several observation categories were used in the studies that were found. The reliability of the observations turned out to be a core problem in most of the studies. Only a limited number of environmental conditions that were expected to have an impact on alertness in individuals with PIMD were investigated. While modifications of the environment, interaction strategies, stimulation strategies and staff training were found to have a positive impact on alertness, studies about treatment activities led to conflicting results. Finally, we will formulate the resulting implications for future studies and for the development of an instrument for DSPs in order to observe alertness in individuals with PIMD in clinical practice.

The tell-tale: What do heart rate, skin temperature and skin conductance reveal about emotions of people with severe and profound intellectual disabilities?

Identifying emotions in people with severe and profound intellectual disabilities is a difficult challenge. Since self-reports are not available, behaviour is the most used source of information. Given the limitations and caveats associated with using behaviour as the sole source of information about their emotions, it is important to supplement behavioural information with information from another source. As it is accepted that emotions consist of language, behaviour and physiology, in this article we investigated if physiology could give information about the emotions of people with severe and profound intellectual disabilities. To this aim we tested hypotheses derived from the motivational model of Bradley, Codispoti, Cuthbert, and Lang (2001) about the relation between heart rate and the valence of emotions and between heart rate, skin conductance and skin temperature and behavioural expressions of emotions of people with severe and profound intellectual disability. We presented 27 participants with 4 staff-selected negative and 4 staff-selected positive stimuli. The situations were videotaped and their heart rate, skin conductance and skin temperature was measured. Each behaviour of the participant was coded using the observational method developed by Petry and Maes (2006). As hypothesized, we found a lower heart rate when participants were presented with negative stimuli than when they were presented with positive stimuli in the first 6s of stimuli presentation. Their skin temperature was higher for the expression of low intensity negative emotions compared to the expression of low intensity positive emotions. The results suggest that, as with people without disability, heart rate and skin temperature can give information about the emotions of persons with severe and profound ID.

Initiation of activities and alertness in individuals with profound intellectual and multiple disabilities

BACKGROUND When providing activities to individuals with profound intellectual and multiple disabilities (PIMD), direct support persons (DSPs) often face questions that are, among other things, related to the alertness of the person with PIMD. While previous studies have revealed that stimulation might have a greater impact on levels of alertness than the internal conditions of the individual, they have also emphasized the importance of interaction in order to influence the level of alertness. Because the initiation of this interaction has been described as one of its core components, the present study has focused on the relationship between the stimuli presented, the initiation of the activity (by the person with PIMD or the DSP), and the level of alertness of the person with PIMD. METHOD Videotapes of the one-to-one interactions of 24 individuals with PIMD and their DSPs in multisensory environments have been scored using the Alertness Observation List. In a sequential analysis, the percentages of stimuli presented were related to the percentages of initiation. Furthermore, two other analyses focused on the relationship between the level of alertness and the preceding and subsequent percentages of initiation respectively. RESULTS The results show that high percentages of the activities are initiated by the DSPs. In addition, activities that were initiated by the individual with PIMD were preceded and followed by higher percentages of alert behaviour than those initiated by the DSP. Outcomes differed for the different types of stimuli. CONCLUSIONS These results have striking implications for the lives of individuals with PIMD. It is quite possible that DSPs often act too quickly, whereas they would be better off waiting for a reaction on the part of their client. In general, DSPs need to find a balance between being passive themselves and promoting in the individual with PIMD a state of being as active and alert as possible.

Staff interactive style during multisensory storytelling with persons with profound intellectual and multiple disabilities

BACKGROUND Multisensory storytelling (MSST) is an individualised activity for people with profound intellectual and multiple disabilities (PIMD) in which a story is being told with an emphasis on sensory experiences and social interaction. MSST is a promising approach, but needs more empirical research evidence. In general, there is a lack of research about staff interaction during specific activities with people with PIMD. In the present study, we explored the possibility to describe staff interactive style during MSST making use of a global coding instrument. METHODS Twenty dyads of a person with PIMD and a professional caregiver participated in an observation study. The caregivers received training in MSST and told a multisensory story to their client once a week, for a period of 10 weeks. The first, fifth and last session were recorded on video. Staff interactive style was coded using an adapted version of the Maternal Behavior Rating Scale, with a consensus rating procedure. RESULTS Professional caregivers scored moderately on the Maternal Behavior Rating Scale. Repeated measures analyses showed no change in time. We did not find a relationship between staff interactive style and client or staff characteristics. CONCLUSIONS The Maternal Behavior Rating Scale contributes to our understanding of staff interactive style during activities with people with PIMD. Specifically for MSST, the moderate scores on the interactive style dimensions were unexpected, because the individualised MSST activity created an optimal situation for high-quality interaction with people with PIMD. Because the interactive style did not improve through the repetition of the activity either, these results might point to a need for staff training in achieving high-quality interaction during activities like MSST.

Observing and influencing alertness in individuals with profound intellectual and multiple disabilities in multisensory environments

While alertness is widely acknowledged as one of the most important preconditions for learning and development, individuals with profound intellectual and multiple disabilities (PIMD) experience a wide range of difficulties in the contact with their environment. The aim of the present study was to identify aspects of stimulation situations that influence the alertness levels of individuals in the target population. Based on video recordings of 24 participants, alertness levels and environmental conditions were scored. Descriptive analyses and multilevel logistic regression analysis were used to identify the aspects of the stimulation situation that were related to occurrence of alertness. The results show that visual stimuli (optimally in combination with auditory stimuli) produced the highest alertness levels. Furthermore, the effects of stimuli outweighed the effect of time. The role of direct support persons is thus especially important in alertness stimulation of individuals with PIMD.

The role of attention in the affective life of people with severe or profound intellectual disabilities

Although it is shown that attention plays an important role both in the onset and in the regulation of emotions in people without disabilities there is no information about how attention is related to emotions in people with severe or profound intellectual disability (ID). Therefore, in our study, we investigated the role of attention in the onset and regulation of the emotions of persons with severe or profound ID. We presented 27 participants with 4 staff-selected negative and 4 staff-selected positive stimuli. The situations were videotaped and their heart rate and attention was measured. Contrary to the expected higher attention to negative stimuli during the onset of negative emotions, we did not find differences in attention in the fourth to sixth second of stimulus presentation. However, in support of the emotion regulation theory of Gross (2008) we did find less attention to the negative stimuli than to the positive stimuli after these first 6s of stimuli presentation. As expected from research in people without disabilities, there was also a negative relationship between the heart rate and the probability of being attentive. Our results suggest that people with severe and profound ID use attentional deployment to regulate their emotions and that, as in people without disabilities, a low heart rate is associated with attention.

Physiological Measurements as Validation of Alertness Observations: An Exploratory Case Study of Three Individuals with Profound Intellectual and Multiple Disabilities

Although observation largely takes into account the needs and abilities of individuals with profound intellectual and multiple disabilities, several difficulties are related to this assessment method as well. Our aim in this study was to investigate what possibilities the use of physiological measurements make available to validate alertness observations. Measurements of five physiological parameters were compared with video observations of three individuals with profound intellectual and multiple disabilities. Because our first findings are broadly in line with those of studies involving individuals in the general population, we hypothesize that physiological measurements can be used to validate alertness observations in individuals with profound intellectual and multiple disabilities. Future studies are needed to compensate for the limitations of this study and to answer ensuing questions.

Look closer: the alertness of people with profound intellectual and multiple disabilities during multi-sensory storytelling, a time sequential analysis

Introduction: Multi-sensory storytelling (MSST) is a storytelling method designed for individuals with profound intellectual and multiple disabilities (PIMD). It is essential that listeners be alert during MSST, so that they become familiar with their personalised stories. Repetition and the presentation of stimuli are likely to affect the alertness of listeners during MSST. Previous studies have only examined the overall level of alertness during MSST. This study focuses on changes in alertness over time during storytelling. Method: In this study, 27 direct support people read an MSST book 20 times with a person with PIMD. The 1st, 5th, 10th and 20th storytelling sessions were recorded. The relation between alertness and the active presentation of stimuli is analyzed using a time-window sequential analysis. We examined changes in alertness levels by comparing the four different storytelling sessions. Results: Higher levels of active alertness were observed when stimuli were actively presented. Alertness was not constant within storytelling sessions, and was related to the presentation of stimuli. Actively presented stimuli were associated with larger fluctuations in alertness. Discussion: Storytellers should present stimuli actively and for longer periods, in order to increase the alertness of listeners during storytelling.