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.     

Use of the Interact Short Form as a tool to evaluate emotion of people with profound intellectual disabilities

Background One of the essential purposes of intervention programmes for people with profound intellectual disabilities (ID) is to enhance the desirable mood and behaviour and decrease the undesirable ones through stabilizing their emotion. There is lack of validated instrument to offer a comprehensive measure that covers the mood and behaviour, both desirable and undesirable, appropriate for people with profound ID. Method This study aimed to examine the validity and reliability of the Interact Short Form for evaluating the mood and behaviour of people with profound ID, and at the same time, review their emotional profile using the Interact Short Form. Both content validity using expert panel review and construct validity by means of factor analysis were investigated. A total of 75 people with profound ID were recruited. Inter‐rater reliability was tested. The results of the Interact Short Form were described to reflect the emotional profile of this group of participants. Results Using the results of expert panel review and those from factor analysis, we found three subscales representing the mood and behaviour of people with profound ID. They were: ‘emotional expression’, ‘interests towards tasks’ and ‘behaviours to environment’. All three subscales were found to be internally consistent (α = 0.71–0.88). The Interact Short Form– People with profound ID version also showed good inter‐rater reliability (mean = 0.72). The results of the Interact Short Form showed that this group of participants had fairly stable emotion under the structured setting and activities in the residential institutions where data were collected. Conclusions The Interact Short Form– People with profound ID version serves as a helpful tool for both clinical and research use in assessing the mood and behaviour of people with profound ID in a simple, comprehensive and systematic way.     

Interpreting the communication of people with profound and multiple learning difficulties

The present paper highlights some of the issues involved in interpreting the communication behaviours of people with profound and multiple learning difficulties (PMLDs). Both inference and intention can play an important role in the communication process, and this raises a number of difficulties and dangers where one of the communication partners is not in a position to correct misunderstandings. The present authors discuss the importance of validating communication and pose a number of key questions to ask those who are most significant in the life of a person with PMLDs. A case study is provided that illustrates a number of these issues.     

Describing dialogue between persons with profound intellectual and multiple disabilities and direct support staff using the scale for dialogical meaning making

Background The dialogical approach of meaning making forms a rich and renewing theoretical perspective to study communication between presymbolic communicators and their interaction partners. The aim of this study is to investigate whether an observation scale based on the dialogical theory, the Scale for Dialogical Meaning Making (S‐DMM), has potential to describe these communicative interactions. Methods Eighteen videotaped observations of persons with profound intellectual and multiple disabilities and their support staff were coded using the S‐DMM and a consensus‐rating procedure. Results Sufficient inter‐rater agreement and an acceptable range in scores confirm the usefulness of the S‐DMM. Strong sub‐scale intercorrelations were identified. The quantitative scores and the qualitative arguments supporting the ratings, demonstrate how the S‐DMM aids to significantly describe staff–client dialogue. Conclusions Using the S‐DMM to describe dialogue with persons with profound intellectual and multiple disabilities appears to be promising. The value of the S‐DMM and its consensus‐rating procedure are reflected upon and discussed with regard to implications for research and practice.     

Leisure provision for persons with profound intellectual and multiple disabilities: quality time or killing time?

Background Information on the duration, frequency and content of leisure activities for persons with profound intellectual and multiple disabilities (PIMD) in residential facilities during weekends was not available. Method The project was carried out in 2003 and included seven facilities. Interviews were held with direct support professionals of 112 living units. Consequently, the actual leisure provision of 160 persons with PIMD was recorded over a period of four weekends. This study also investigated the relationship between setting characteristics and the distribution of the content, frequency and duration of leisure activities. Age and gender of persons with PIMD were under investigation. Results A total mean of 3.8 h of leisure activities is provided for during the full weekend, almost half of which includes watching television or listening to music. Leisure activities are almost exclusively offered by professionals. Parents or volunteers only provide a minimum of activities during weekends. The results suggest that the leisure provision for persons with PIMD is severely restricted and not bound to any service provider in particular. Generally, with increasing age the leisure provision for persons with PIMD declines in number and in variety. No effect was found for gender. Conclusions Leisure time for persons with PIMD contains more empty hours than quality time.     

The effects of tandem skiing on posture and heart rate in children with profound intellectual and multiple disabilities

Purpose: The objective of study was to determine the effect of tandem ski (TS) activity on postural control and cardiac activity in children with profound intellectual and multiple disabilities (PIMDs).

Method: Twenty children with PIMD and 20 age-matched controls (typically developed (TD) children) participated. Body segment movements were measured with inertial sensors (Physilog®) placed on the head, C7, trunk (including ECG) and pelvis with a seat reference. Each participant was measured during a 12-turn slalom pattern.

Results: In each group, significant differences were observed between the head vs. trunk and head vs. pelvis angular speeds (p<0.001). In both groups, heart rate differed significantly during rest (PIMD 99 bpm, TD 97 bpm), exercise (PIMD 140 bpm, TD 139 bpm; rest vs. exercise p<0.001) and recovery (PIMD 101 bpm, TD 107 bpm; exercise vs. recovery p<0.001).

Conclusions: In children with PIMD, TS elicits active postural control associated with cardiac activities similar to that of the controls.     

Analysis of staff reports on the frequency of challenging behaviour in people with severe or profound intellectual disabilities

The main goal of this study was to investigate whether staff members vary in their frequency reports on challenging behaviour concerning the same client. Because staff's approaches of challenging behaviour are affected by a range of staff characteristics, we hypothesised that these staff characteristics could explain this variability between staff members. We used questionnaires to investigate the influence of staff's age, gender, experience in working with people with intellectual disabilities, working hours, professional qualifications, sort of education, and their emotional reactions and beliefs regarding the challenging behaviour. This study involved 152 staff members and 51 clients with severe or profound intellectual disabilities who displayed self-injurious behaviour, stereotyped behaviour, and/or aggressive/destructive behaviour. A part of the variability between staff's reports on the frequency of challenging behaviour was indeed explained by differences between the staff members. Working hours, internal attribution, gender, and experience in working with people with severe or profound intellectual disabilities turned out to be influencing variables. Summarising, staff members differ in their reports on the frequency of challenging behaviour. To get an accurate picture of a client's challenging behaviour, perceptions of several staff members are needed.     

Psychometric evaluation of a questionnaire to measure the quality of life of people with profound multiple disabilities (QOL-PMD)

Because of a shortage of valid instruments to measure the QOL of people with profound multiple disabilities (PMD), the QOL-PMD was developed. In the present study, possibilities for item reduction as well as the psychometric properties of the questionnaire were examined. One hundred and forty-seven informants of people with PMD participated in the study. Fifty items were removed from the questionnaire on the basis of preset criteria. Internal consistency was good for the total questionnaire as well as for the subscales. Evidence of the construct validity of the questionnaire was found. Correspondence between the groups of informants was moderate. The results of this preliminary analysis of the psychometric properties of the QOL-PMD are encouraging, but further validation of the measure is warranted.     

Emotional well‐being for all: mental health and people with profound and multiple learning disabilities

This article considers the emotional well‐being of people with profound and multiple learning disabilities. It identifies the factors that have particularly affected this group of people: an historical failure to acknowledge their human status; deficit‐based services, a lack of voice and communication barriers. Whilst these factors are of importance to all people with learning disabilities, evidence is presented that those with profound and multiple learning disabilities are the most likely to experience challenges to their mental health and the least likely to receive appropriate support. A strategy for developing our understanding and good practice in the area is suggested. This prioritizes areas for future work and suggests that a collaborative approach is most likely to yield positive outcomes for these individuals.     

Motor activation in people with profound intellectual and multiple disabilities in daily practice

Background People with profound intellectual and multiple disabilities (PIMD) are at risk of being motorically inactive. This study investigated the degree and type of motor activation in daily practice and its relationship to personal and contextual factors.

Method A total of 58 participants with PIMD participated in the study. Data concerning the motor activation were collected by means of a diary over a period of 14 days. Relationships to personal and contextual factors were analysed using multilevel analyses.

Results The mean number of transfers was 3.1 times per day (range: 0–9, SD?=?1.4), the mean number of relocations was 7.7 times per day (range: 2–13, SD?=?2.5), and the mean number of motor activities offered was 1.5 per day (range: 0–10, SD?=?1.9). Relationships to age, gender, location, and day of week were found.

Conclusion Motor activation seems to be a minor part of the support provided to people with PIMD.     

The Life Satisfaction Matrix: an instrument and procedure for assessing the subjective quality of life of individuals with profound multiple disabilities

Background Assessing and measuring subjective quality of life (QOL) for individuals with profound multiple disabilities (PMD) remain amongst the most difficult challenges for theorists and practitioners in the field. The usual approaches using proxy reporting by familiar others have been demonstrated to be of questionable reliability and validity for persons with PMD. Method The author's continuing research into understanding the nature of subjective QOL of these individuals has led to the development and evaluating the Life Satisfaction Matrix (LSM), an instrument and procedure for assessing the subjective QOL of these individuals. Results Qualitative research that provides empirical evidence to support the assumptions underpinning, and face validity of, the LSM is described in this article. Conclusion Results of the study described herein demonstrate some potential to meet and overcome the above-mentioned challenges to assess and measure the subjective QOL of individuals with PMD.