van der Annette Putten

Frequency and severity of challenging behaviour in people with profound intellectual and multiple disabilities

The main goals of this study were to determine the prevalence, frequency and severity of challenging behaviour in people with profound intellectual and multiple disabilities (PIMD). Because in the literature several health problems and sensory impairments are associated with the onset and existence of challenging behaviour, this relationship was also examined. This study involved 181 people with PIMD (age: mean: 35; SD: 19, 56% male). The Behaviour Problem Inventory was used to determine prevalence, frequency and severity of self-injurious (SIB), stereotypical and aggressive/destructive behaviour, and an additional questionnaire was used to determine the presence of sensory impairments and health problems among the participants. Results show a prevalence of 82% for SIB and stereotypical behaviour in the sample. Aggressive/destructive behaviour was seen in 45% of the participants. Concerning the frequency, on average SIB occurs on a daily or weekly basis. Stereotypical behaviour is seen on a daily basis and aggressive/destructive behaviour is usually reported once a week. All three types of challenging behaviour also occur on an hourly basis. The severity of challenging behaviour is usually rated by staff as of minor consequence for the person with PIMD. Furthermore, a relationship was found between having visual, tactile or psychiatric problems and the occurrence of challenging behaviour. Participants with visual impairments, tactile impairments or psychiatric problems showed significantly higher mean scores regarding challenging behaviour. Challenging behaviour within the target group of people with PIMD is very common. The prevalence figures are high, but direct support professionals are not inclined to rate such behaviour as of serious consequence.

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.

Risk factors associated with challenging behaviour in people with profound intellectual and multiple disabilities

BACKGROUND Several factors that correlate with the onset or continuation of challenging behaviour are mentioned in research. These are factors related to persons with ID, but also to direct support professionals and the context. Although many of these factors seem to affect the onset or continuation of challenging behaviour in people with ID in general, results are often inconclusive and have little focus on people with profound intellectual and multiple disabilities (PIMD). The present study aimed to assess the extent to which known factors related to challenging behaviour are also applicable to a group of 198 people with PIMD. METHOD To determine which factors were associated with challenging behaviour, univariate analyses on associations between known risk factors and challenging behaviour were conducted. The associated factors were then subject to a regression analysis to determine the extent to which they explain the prevalence of challenging behaviour and can thus be seen as factors associated with challenging behaviour. RESULTS The results show that, in particular, factors concerning the personal characteristics of people with PIMD, such as sleeping problems and auditory problems, were related to the variance in mean frequency of challenging behaviour. Only one factor related to the direct support professionals was found: when these professionals had been offered training on the subject of challenging behaviour in people with intellectual disabilities in general, they identified significantly more withdrawn behaviour. We found no contextual factors related to challenging behaviour. CONCLUSION These findings are generally consistent with findings reported in other studies, especially concerning the personal characteristics of people with PIMD. Further research should focus on the effects of providing safe auditory environments and appropriate sleep schedules for people with PIMD on the occurrence of challenging behaviour.

Relabelling behaviour. The effects of psycho‐education on the perceived severity and causes of challenging behaviour in people with profound intellectual and multiple disabilities

BACKGROUND Prevalence rates of challenging behaviour are high in children and adults with profound intellectual and multiple disabilities (PIMD). Moreover, many of these behaviours are observed daily. Direct support staff report that most challenging behaviour identified has little impact on the person with PIMD and attribute challenging behaviour in children and adults with PIMD mainly to a biomedical model. The purpose of this study was to evaluate whether an intervention (psycho-education) had any effect on direct support staffs assessment of challenging behaviour in terms of its severity and their biomedical causal explanations (attributions) for this behaviour. METHOD A stepped wedge study design was used to evaluate the effects of a psycho-education intervention on the perceived severity and the attributions offered for challenging behaviour of people with PIMD by 198 direct support staff. We used questionnaires assessing the perceived severity of challenging behaviour and staff views of its causes. Data on the dependent variables were collected at four 1-month intervals. RESULTS The intervention was found to have an effect on the perceived severity of challenging behaviour identified in people with PIMD in the sense that staff generally scored challenging behaviour as more severe in its consequences after the intervention. However, this effect was very small. No significant effects were found in terms of reduction in the biomedical scale scores. CONCLUSION No evidence for the effectiveness of a psycho-educational approach on the assessment of challenging behaviour in terms of severity and the biomedical attributions for behaviour was found. More research is required to explore further the effects of more elaborate training using methods to enable direct support staff to reflect on the behaviour of people with PIMD and on their own behaviour.