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.     

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.     

From the inside looking out – an Intensive Interaction group for people with profound and multiple learning disabilities

This paper describes the use of a new project, ‘from the inside looking out’ (FILO) (N. Richardson Unpublished data), to develop communication, interaction and emotional literacy skills with people with profound and multiple learning disabilities. The authors utilized tools derived from Intensive Interaction Therapy [D. Hewett & M. Nind (1994) Access to communication. London, David Fulton Publishers; D. Hewett & M. Nind (1998) Interaction in action: reflections on the use of Intensive Interaction. London, David Fulton Publishers] and applied these within a FILO paradigm to run an 8‐week group with five participants where the aim was to build relationships and enhance awareness of emotional variables. The results were measured using both quantitative and qualitative analysis and it was found that a number of discreet observable behaviours related to interactive ability were positively changed across all participants. Important processes within the group are analysed and recommendations for expanding this approach in the future are discussed.     

Ascertaining the views of people with profound and multiple learning disabilities

There has been a welcome recent shift towards taking account of the views of those who have traditionally been seen as lacking competence, including those with learning disabilities. Innovative methods have been devised to help people express their views and research demonstrates that people with learning disabilities can be taught this skill. However, none of this work has involved people with profound and multiple learning disabilities and serious doubts have been raised about the extent to which it is possible to ascertain the views of this group. Those operating at a preintentional level may not express, or have, views in the usually understood sense. Methods which attempt to ascertain the views of this group are highly inferential and it is often only possible to infer immediate preferences. It is important that the limitations of such methods are acknowledged. A case study is used to demonstrate that, in relation to major life decisions, taking account of a wide range of assessment information may give a clearer picture of the preferences of someone with profound and multiple learning disabilities than subjective interpretations of their behaviour or proxies. This should be combined with a focus on teaching the person so that they acquire as much control over their own lives as possible.     

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.     

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.     

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 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.     

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.     

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.     

The documentation of health problems in relation to prescribed medication in people with profound intellectual and multiple disabilities

Background   Persons with profound intellectual and multiple disabilities (PIMD) suffer from a wide range of health problems and use a wide range of different drugs. This study investigated for frequently used medication whether there was a health problem documented in the medical notes for the drug prescribed.
Method   Persons with PIMD with an estimated intelligence quotient of 25 and profound or severe motor disorders were studied. Data on health problems were taken from medical notes and prescribing data were obtained from pharmacies. Data covering 1 year were analysed. For four therapeutic areas (anticonvulsants, laxatives, drugs for peptic ulcer and gastro-oesophageal reflux disease and psycholeptics), we determined whether we could find an indication for prescribed medication.
Results   Some 254 persons with PIMD (46% male, 54% female; median age 49 years, range 6–82) from eight residential facilities participated. Some 226 participants (89%) were prescribed medication over the course of 1 year. An indication for the prescribed medication was documented for 92% ( n  = 130) (95% confidence interval 88–96%) of 141 participants on anticonvulsants, for 68% ( n  = 112) (61–75%) of 165 participants on laxatives, for 44% ( n  = 58) (36–52%) of 132 participants on drugs for peptic ulcer and gastro-oesophageal reflux disease, and for 89% ( n  = 102) (83–95%) of 115 participants on psycholeptic drugs.
Conclusions   The best level of documentation was found for anticonvulsants the worst for drugs for peptic ulcer and gastro-oesophageal reflux disease. Lack of documenting an indication may be due to off-label use, inadvertent continuation of no longer indicated medication, inadequate documentation and underdiagnosis. Adequate documentation practices are essential because of the communication problems that are characteristic for persons with PIMD.     

Staff attributions of the causes of challenging behaviour in children and adults with profound intellectual and multiple disabilities

A study has shown that staff do not generally perceive challenging behaviour in people with profound intellectual and multiple disabilities (PIMD) as being of serious consequence. In this study we aimed to gain a better understanding of the causal explanations that direct care and support staff give for challenging behaviour in this group. The purpose of this study was twofold: (1) to determine the way staff attribute challenging behaviour in children and adults with PIMD; and (2) to analyse whether more experienced staff attribute challenging behaviour in children and adults with PIMD differently than less experienced staff. In total, 195 direct support staff and an equal number of children and adults with PIMD participated in the study. Direct support staff filled out the Challenging behaviour Attribution Scale (five causal explanatory models of challenging behaviour) to explain challenging behaviour in one individual that they supported. The results show that direct support staff as a whole report the biomedical model as the most plausible explanation for challenging behaviour in children and adults with PIMD. However, in the present study the mean scores on all models are low. This might indicate that a large number of staff found none of the models particularly useful as possible explanations of challenging behaviour in people with PIMD. This could mean that staff have difficulties stating the cause of challenging behaviour in this group. Another possible explanation could be that there is little scientific knowledge about causing and maintaining factors of challenging behaviour in people with PIMD. It could also mean that staff have additional explanations for challenging behaviour in this target group that are not mentioned in the instrument used. Future research should address these issues. No differences were found between more experienced and less experienced direct support staff.