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Interactions with people with profound intellectual disability.

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1 Interactions with people with profound intellectual disability.
Sheridan Forster Teresa Iacono Centre for Developmental Disability Health Victoria, Monash University Presenting ongoing work for a Masters of Biomedicine at Monash University, Victoria Under the supervision of Teresa Iacono The following presentation looks at literature related to communication and adults with profound intellectual disaiblity. What is profound intellectual disability Issues related to research relating to people with profound ID Current themes of research and what can be gained from these Areas existing as current gaps and propose future research questions.

2 What is “profound intellectual disability”?
ICD-10 – Profound mental retardation “The IQ in this category is estimated to be under 20, which means in practice that affected individuals are severely limited in their ability to understand or comply with requests or instructions. Most such individuals are immobile or severely restricted in mobility, incontinent, and capable at most of only very rudimentary forms of nonverbal communication. They possess little or no ability to care for their own basic needs, and require constant help and supervision”. ICD-10 Guide for Mental Retardation.

3 What is “profound intellectual disability”?
IASSID – Persons with profound multiple disabilities Heterogeneous group No existing standardized tests are applicable Profound intellectual disability Physical disability Frequent sensory impairments Personal assistance for everyday tasks IASSID – Speical interest group Persons with profound multiple disabilities form a heterogeneous group. The ‘core group’ consists of individuals with such profound mental disabilities that no existing standardized tests are applicable for a valid estimation of their level of intellectual capacity and who often possess profound neuromotor dysfunctions like spastic tetraplegia as well. Apart from profound intellectual and physical disabilities, it is presumed that they frequently have sensory impairments. Individuals with PMD form a physically very vulnerable group of persons with a heavy or total dependence on personal assistance for every day tasks, 24 hours a day. Kobe, Mulick, Rash & Martin 1994 203 people with pmr Physical, developmental, behavioral characteristics Seizures 71.8% Scoliosis 31.5% Gastrointestinal feeding 24.7% Almost half the group SIB

4 People with profound intellectual disability in research
Terminology Methods of diagnosis Methods of describing studied group Limited number of studies Types of research Predominantly on children Terminology Inconsistent use of terminology in research Accepted interchangeable use of LD ID and MR Severe to profound developmental disabilities – frequently used – increasing the heterogeneity within the group further. THESE SAME ISSUES HAVE EXISTED FOR MANY YEARS. IN 1979 CHARLES CLELAND DESCRIBED THE PRATICE OF “LUMP”ING PEOPLE WITH BOTH PROFOUND AND SEVERE DISABILITIES TOGETHER AS INDEFENSIBLE, GIVEN THE INDIVIDUAL DIFFERENCES THAT EXIST EVEN WITHIN THE CATEGORIES, AND COMPLICATION OF GENERALISING THE RESULTS AND REPLICATION Profound multiple disabilities, PMLD Profoundly disabled (Hogg & Lambe, 1998, “people were identified as profoundly disabled if they had a developmental age of 3 years or less” Frequently in comm. research, term no functional speech, no symbolic communication, preintentional, intentional informal are used rather than a level of intellectual disability In addition, sub groups of people with profound intellectual disability are employed, again changing the applicability to of the data to people with a profound ID as a whole. For example Brady, McLean, McLean and Johnston 1995 had 26 people with profound MR in their study, however a selection criteria was that the person communicated intentionally but not symbolically. Similarly Ogletree, Wetherby and Westling (1992) in completing communication profiles for 10 children with profound ID looked only at children who were considered to be intentional communicators with expressive and receptive communication skills above in 8 months in age equivalence Methods of diagnosis Schedule of Growing Skills Standford-Binet in Kobe, Mulick, Rash & Martin, 1994 Bayley Scales of Infant Development – Mental Scale in Kobe et al Psyhcologist assessment usign the classification system of the American Association of Mental Retardation 1992 ( in Saunders et al 2003) No methods of diagnosis given. Methods of describing studied group. Often limited description of the varying skills within the group, causing difficulties in being able to generalise the finding. In particular the level of communication skills is often inadequately described despite it’s potentially significant effect on outcomes (Granlund and Olsson 1999 Number of studies Numerous researchers have expressed concern regarding the limited amount of research on adults with PID (Ross & Oliver, 2003) Kobe et al “most understudied population in the field of developmental disabilities” Similar concerns from qual researchers (Klotz) However there appears to be a growing interest in the area. Eg. multinational research being done by Lancioni – Netherlands, O’Reilly in Ireland and Singh in USA with others. Types of research Largely quantitative Some qualitative Some large group studies, often when people are living in institutions Mainly small group studies Mainly intervention studies, looking at short term changes in behavior Some descriptive studies Some looking at the behaviours of individuals with PID, and some looking at behavior of those who support them

5 Topics in current literature
Indications of preference and choice Contingent responding Multisensory rooms Objects of reference Behaviour states Interaction Qualitative studies

6 Indication of preference and choice
Many people with profound intellectual disabilities can express preferences. Preference is often displayed through changes in affect and some gestural means. Some individuals can not clearly demonstrate their preferences. In practice, meaning should be a negotiated outcome of interactions, always involving inference. Preference – subjective liking or disliking of a particular liking or disliking of a particular item or preference (CRL 2004) Choice – the act of selecting an item or activity form an array of options at a particular moment in time (CRL 2004) Cannella, Reily and Lancioni (in press) 2004 – reviewed 30 studies on choice and preference assessments for people with severe and profound developmental disabilities from 1996 to A large number of the studies reported positive results in choice intervention and preference assessments. This is very encouraging for practice. However not all studies demonstrated clear success and the authors caution that there is not enough data to suggest that choice intervention and preference assessment stragties will be effective at all times or for all individuals. Some individuals can not clearly demonstrate their preference. Invancic and Bailey 1996 – found a group that they labeled as having chronic training need that demonstrated an average of 5 minutes till their first response to the stimulus preference. NEED TO CONSIDER LATENCY TIMES TO RESPONSE IN LOOKING AT INTERACTIONS. IT CAN BE DIFFICULT TO JUDGE PREFENCES. ? Two levels of choice making Choices demonstrated in isolated controlled situations using methods that would be easily replicable Two is the level of practical choice making and inference development that staff engage in with people where they combine ideas of historical demonstration of response to situations. Increasingly research in this area is arising, particularly with the movements towards person-centred practice. Bunning et al 1999 discuss this sort of choice making in their discussion of the SWIM procedure: See What I Mean. Porter, Ouvry, Morgan and Downs (2001) describe that the responsibility for interpreting the ambiguous signals in accordance with feelings or meanding a great, and it is often difficult to verify these.

7 Expression of happiness
Methods of systematically measuring expressions of happiness have been developed In studies reasons for assessing happiness have been linked with understanding satisfaction with life. Expression of happiness has also been used as an dependent variable for interventions Singh, Lacioni, Winton, Walher, Singh & Sage 2004 Used expressions of happiness during leisure activities with pairs of staff, to measure the effectiveness of their intervention. Mindfulness methods “a unique method of cultivating awareness of and fully responding to whatever happens in each moment” (p. 209). Involved 8 weeks of training that incorporated readings, discussions and meditations. Increased levels of happiness observed when the individual interacted with the staff who received training in mindfulness. “Our informal observations suggested that, in their interactions with the individuals, they were more responsive than reactive and they appeared to b non-judgmentally accepting of the behaviors that the individuals displayed. They appeared to be totally involved with the individual during the leisure activity sessions and were more creative, flexible, and adaptable than during baseline” (p. 216). Expressions of mood (happiness being one area) are of assessed to look at quality of life (Ross & Oliver, 2003) Green & Reid 2003 (in ross and oliver 2003) found a group (low movement group) for whom displayed no indications of happiness or unhappiness within their study of “fun time”, however when looking at eye closing behaviour used between familiar and unfamiliar staff they found closed eyes did not occur with familiar staff. Using expression of happiness as the dependent variable - comparing interventions - Lancioni, O’Reilly, Singh, Oliva, Groenewag 2002 – impact of stimulation (presentation of pleasant stimulation) vs microswitch-based programs

8 Contingent awareness Contingency awareness occurs when the person attempts to create event with the awareness that their behavior causes the event. It is evidenced when the person shows a different reaction when an expected co-occurrence does not appear. Children with from a “mental age” of 2 months have demonstrated contingency awareness. Some children for who show limited gains in contingency awareness. These children are often in drowsy or asleep states throughout the day. Contingent responding “Contingency awareness occurs when a person attempts to create an event or spectacle with the understanding that his or her actions are linked to external (or internal) results” (Barber, 1994). “Contingency awareness is apparent in the child when a different reaction is shown, when an expected co-occurrence does not appear, for example when a normally noisy rattle is shaken but fails to sound on particular trials” (Barber, 1994). Barber describes contingency awareness base on two events occurring together in the individual (e.g,. closing eyes), within the environment (eg. mothers voice and visual presence), and an event in the individual occurs with an event in the environment (eg. touching a mobile that moves). The job of the educator of people with profound learning disabilities may be conceptualized as designing and developing an environment that allows the disabled person to cause dramatic change, contingent on specific actions already within the person’s repertoire, in order to generate accessible contingencies and, through these, contingency awareness” (Barber, 1994). O’Brien, Glenn, Cunningham 1994 children - “These results suggest that from a mental age level of 2 months children are equipped to detect cause and effect relationships and build up a picture of their world based on expectancies about such relationships: and that violations of these expectancies can lead to negative effects” Schweigert and Rowland 1992 children with severe multiple disabilities – provide instructional sequence for teachers, for teaching students different forms of contingency awareness – with all children starting with no clear intentional communicative behavior – and some showing no apparent voluntary behavior. However the children who demonstrated the least gains were also those who spent most of their days in drowsy state or asleep Non-contingent activation can cause difficulties learning

9 Multisensory rooms Frequently used intervention to facilitate relaxation or activity Limited research For some people multisensory rooms appear to affect relaxation or activity Facilitation by staff Tells us about how different environments facilitate relaxation or activity Bunning (ISE) Vlaskamp, de Geeter, Huijsmans, & Smit (2003) Concerns about the limited research into the efficacy of multisensory environments. Found little evidence for an increase in activity levels as a result of multisensory environments. However found relations between the level of activity and contextual variables such as staff touching or talking the person. Heterogeneity of the group with some clients responding to “overwhelming stimuli” and some being extremely passive in the multisensory room. Results from Vlaskamp et al suggest that it was the interaction received in the multisensory room that facilitated the persons activity. MSR’s are a popular method used for people with profound intellectual disabilities. The research indicates that for some people MSR can enhance relaxation or activity. The key feature of effective multisensory room use appears to be the facilitation by staff supporting people in rooms. This includes staff understanding of the person’s existing sensory skills and preferences. The interaction provided by staff within the rooms to facilitate participation needs further exploration.

10 Objects of reference Studies on children with varying disabilities
Some children have successfully learnt to use objects of reference Successful use of objects of reference has not been demonstrated with people with the most profound intellectual disability Concern raised regarding the grasp of theory in practitioners Objects of reference Park (1997) Explores how objects become objects of reference Rowland & Schweigert (2000) - Children with various disabilities with criterion of spontaneous and meaningful use of 10 or fewer abstract fewer symbols for expressive communication. There was only one child with pre-intentional communication, who did not succeed in using symbolic. Some of the students at the intentional behaviour (not intentional communication) progressed to learning to use tangible symbols, whilst some were unable to . They reported that the “success of such intervention is clearly related to the child’s current ability to communicate intentionally” (p 74) McLarty (1997) Critical of the grasp of theory and appropriate practices in the area. Discusses the origins of objects of reference from the area of deafblindness and the benefits of practitioners familiarising themselves with these theories and methods. Secure relationships, co-active movement and an environment that is reactive. An understanding of objects of reference arises not from the objects themselves, but from the actions and experiences of which they form a part. Objects of reference are frequently prescribed as interventions for adults with profound intellectual disability. Although some research exists to justify this decision, often this research has involved either people who operate at reactive or proactive levels of communication, not at reflexive levels of communication. An understanding of the origins of objects of reference is helpful for establishing whether objects of reference are an appropriate intervention, or whether a focus on relationships and co-active movement would be more appropriate. In practice objects of reference are often abandoned by staff as they have been unable to see any outcomes from their use. At times inadequate following of the program is suggested as the reason for nonsuccess, however we must also question the appropriate prescription of the intervention in the first place.  [T A1]year?

11 Behaviour states Investigations into the behaviour states of students with profound multiple disabilities Some people are rarely in positions for learning, given limited time periods spent in alert states. Some conditions may enhance alertness, such as activities and interaction. Conducted much of the pioneering work in the area of behavior state analysis and children with profound disabilities. Codes developed have been used by several others. Arthur (2004) Furthered research on behavior state on students with profound multiple disabilities. Observed the transitional probabilities and the potential relationships between states, communicative conditions and activities. Results demonstrated State stability Communicative interactions, though occurring at low rates contributed to sustained positive effects on state. Activities occurred for low proportions of the day, however were connected with increased engagement Significant amount of time is spent in a non-alert state The research on behaviour state fills a gap on understanding people with the most severe disabilities. It tells us that some people are not in optimal positions for learning, because of the limited amount of time spent in alert states. It helps us understand some conditions that may in enhance alertness such as communicative interactions. However, current research does not tell us about the types of interaction that facilitate enhanced alert and active states. An understanding of behaviour state would be beneficial for disability support workers as it provides recognition to the complex situation that they are in providing learning programs to people with profound intellectual disabilities.

12 Interaction Large number of studies looking at interaction of children with dual sensory impairments, students with severe intellectual disability in the classroom Often highlight the low level of interactions that occur. Small number of studies looking at communication between disability support staff and people with profound intellectual disability Staff training is often employed to improve levels of interaction Research on parent infant interaction Granlund & Ollson 1999 synthesis paper on efficacy of communication intervention for presymbolic communicators Suggest in considering research design for looking at communication interventions Single-subject designs – ideal for looking at specific behaviors that may change rapidly in response to intervention Case studies If looking at changes in interactions patterns, methods such as sequential analysis be used. These enable you to look at the continuous process of communication (rather than isolated events) and see how each partner simultaneously affects each other. Interaction parent-infant interaction teacher-student interaction Mirenda & Donnellan (1986) looked at the effects of adult interaction style on conversational behavior of students with severe disabilities Barber (1994) described one classroom with 10 students and 4 staff. Approximately half the day was spent in activities that were not direct teaching routines, like toileting, giving drinks and getting ready to go home. He advocated for using these routines for contingency awareness. Included within this should be the opportunity to express like and the opportunity to express dislike. staff-adult interaction Clegg, Standen & Cromby (1991) Investigated interactions between adults with profound intellectual disability (developmental ages 1-9 months) and staff. Short video observations identified five different interactive strategies. Staff then reproduced each of the strategies in interactional dyads and client responses were examined. Results indicated positive behaviours from clients when staff were talking to them and using social routines. Suggested that “staff may feel unsure about the way to interact with these people” (p. 378). This in some ways represents simulated interactions given the way staff were trained in each strategy and asked to complete on demand, whilst still be in the persons natural setting. Social routines (such as tickling games or other exchange rituals) strategy had to be newly developed in 6 of the 9 pairs. It was found to be a powerful strategy for generating positive responses. Clegg, Standen & Cromby, 1991 The analysis of talk sessions between staff and adults with profound intellectual disability Sequential analysis of three minute interaction sessions involving staff talking to clients. Clients responded positively during approximately one third of the session times to listening to staff talk. Staff were found to be very responsive to changes in clients behaviour. Acknowledge that a limitation of the study was that staff’s perception of their role was not investigated, nor the sense they made of their interactions with clients Nind & Hewett

13 Parent-infant interactions
Developmental models are frequently used to shape interventions (including for adults) Intensive Interaction Uses mother-infant interaction as a model Pleasurable interactions incorporating play routines Showing positive results in enhancing interactions with people with profound intellectual disability McLeod, Houston Seyfort 1995 2 ½ training session to teach staff principles of eye contact, being a the same physical; waiting; responding; and structuring the environment to encourage communication. Improvements were shown in a pre and post-test questionnaire and video analysis. The limitation of not observing interactions for application of the strategies was identified. However it is unclear whether another limitation was the validity of the measurement tools, which may have only be measuring recall of strategies, not learning. Intensive Interaction studies Challenged the existing concepts of “age-appropriateness” (see Nind and Hewett in Whose Choice?)

14 Qualitative methodology
Have attempted to explore interactions with people in greater depth Small number of qualitative studies Goode (1994) Participant-observation research Children with deafblindness Creation of meaning Relationship between the individual and those around them The rigour of qualtitative studies have varied considerably. Qualitative studies with people with profound ID have included - case studies - Porter, Ouvry, Morgan and Downs (2001) interviewing significant people in a childs life to build a picture of his communication, how people know things about him, and the roles that they perceive themselves to have in his life. Klotz (2004) Outlined the development of sociocultural study of people with an intellectual disability, in particularly those with severe and profound disabilities. Looks at the work of Edgerton, Bogdan and Taylor, Goode, and Gleason. Advocated for the recognition that people with intellectual disabilities are living socially meaningful lives despite not conforming to the dominant and socially prescribed norms and expectations. Long-term and intimate engagement with people is required to analyse the inherent meaning and significance of the symbolic systems that people with intellectual disabilities create and utilize. Gleason Goode Used ethnomethodology – participant observer techniques to understand the world of two children with deafblindness. One lived in an institution and the other in her family home. Explores many interesting themes - conflicting identities (1970s medical model who gave the official identity vs. custodial direct-care staff – to which he judged the direct- care staff to have the more reliable and concrete knowledge) (family identity vs. school identity – to which he explores a rift between the school and family based of differing judgments of skills, with David concurring somewhat with the families expression of “she understands” because of the shared knowledge that had developed in the home context through movement and routine (body knowledge) - play – Goode describe staff’s reduced ability to play with Chris “the institutional definition of their relations with Chris prevented them from simply cooperating with her”p39, he observed rare occasions eg. taking residents to the pool, where staff and residents appeared to enjoy themselves. “By the end of my stay on the ward, I had become a little sad about the way in which the institutional and medical “contexting” of the children seemed to victimize the staff as well as the children” (p. 39). - pursuing symbolic communication in the home, when informal methods are meeting living needs. - with Chris, the girl living in a the institution is focuses largely on the development of their interactional relationship, and only a little on the other staff there. He used simulation of her impairments on himself to try to understand her perpsective. In interactions he used mimicry and what he called obedient passivity that allowed Chris to initiate and organise the bodily interactions. Dennis (2002) Explored the perspectives of practitioners who work with people with severe intellectual disabilities. Narrative analysis. Used focus groups consisting of staff who were judged to have good communicative relationships with the people who they supported. Concepts of their role as a listener, strategies used for listening and how they verify their interpretations, were explored. Impediments to successful listening Environment – eg. historical practices, the physical environment Teller – eg. emotional fear or bad history, role confusion Listener – eg. attributes of laziness or too busy, practices of disinterest Personal values that influence a practitioner’s capacity to listen Values – eg. belief in the person as a person and in nonspeeech communication Personal attributes – eg. confidence to make mistakes, flexibility, experience. Strategies to ensure successful listening Environmental – eg. physical comfort, time in favourite places Teller-listener – eg. touch, proximity, hang out together, be comfortable with silences Importance of rapport and some common interests “insinuates that ‘liking each other’ should be a nonnegotiable criteria when recruiting and allocating support staff” (p. 247) “Thus, education and training that situates the workers’ role in personal values, and targets the development of practitioners’ sensitivity and their skills in pausing, patience, and observation would be beneficial

15 What does research say? Heterogeneity
Some people who respond to interventions such as using multisensory rooms, choice interventions and objects reference to aid understanding Difficulties in ascertaining the meaning of communication Fluctuations in alertness Interventions are often focused on staff Interacting with people with profound intellectual disabilities can be difficult due to fluctuations in alertness and difficulties in ascertaining the meaning of the communication that they do display.

16 What gaps exist? An understanding of the communication of
Adults In their daily environments With their most common interaction partners The subjective experience of staff interacting with people with profound intellectual disabilities. The majority of research that has been done has been intervention studies, however Goode (1994) argues that “If clinical work is about effecting the everyday behaviors of people, then understanding of what “everyday” consists of is an imperative part of the clinical corpus of knowledge.” p Very few studies have looked at the everyday interactions that occur. Interventions are often focused on staff. How well do we understand that thoughts of the staff? Research tells us often the many features complicating communication. How do these complicating features impact on the communication relationships? How do staff feel about the information that they have been taught, and the dominating theories impressing on their practice? Do they see conflicts between the theory and practice? What do they see as their role in communication? We can not work effectively with staff unless we understand where they are coming from. hat gaps exist? Much of the research is on children. Although isolated aspects of communication like expressions of preference and contingency awareness have been explored and are important, limited focus has been given to the larger scale of ongoing interaction over time. Extremely limited research into the qualitative aspects of the interaction between staff and the people they support. In particular there has been very little exploration into the staff perceptions of these relationships. Frequent calls for further education of staff are made in literature and practice, however research has not explored the factors that shape the interactions that staff participate in. (disempowered staff?)

17 Interactions with people profound intellectual disability… looking ahead
What is the nature of interactions between disability support workers and people with profound intellectual disabilities? What do disability support workers say about interacting with people with profound intellectual disabilities?

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