CHAPTER IV VALIDATION AND APPLICATION OF ABERRANT BEHAVIOUR ASSESSMENT CHECKLIST PREPARED IN TELUGU LANGUAGE

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1 CHAPTER IV VALIDATION AND APPLICATION OF ABERRANT BEHAVIOUR ASSESSMENT CHECKLIST PREPARED IN TELUGU LANGUAGE 4.1 Translation of Aberrant Behaviour Checklist and its Validation Until now, no translation of the ABC in Telugu was available. The team underlined the need for a Telugu version, which is easy to use by the non- English speaking team and by the families, in order to provide a stable evaluation of the behaviour disorders. The researcher decided to target behavioural problems since their occurrence in the population with intellectual disability is very frequent, and because such problems reduce the chances for community integration and access to educational, leisure and occupational activities. The greatest difficulty for the educational staff involves the management of disruptive behaviour, which is a source of stress for training teams, the families and the residents themselves. The ABC is a reference tool in the domain of intellectual disability and it has been largely used for more than two decades to rate the level of behavioural disorders in the population with intellectual disability. The aim of the project was to translate and validate the ABC in Telugu. A further step was to validate the translated version of the ABC in Telugu in persons with moderate to profound intellectual disability living, receiving education or working in the Lebenshilfe institution. Besides national differences in the two groups that could influence consistent assessment of the disorders due to a

2 129 differing socio-cultural tolerance, other differences such as nutrition, nursing and medication must be noted. Data analyses Descriptive analysis Descriptive analysis was done on the following areas: age, gender and intellectual disability level, based on ICD-10 criteria concerning the categories F71, F72, F73 (respectively moderate, severe and profound intellectual disability). Validity Analysis In a trans-cultural validation, one has to check the correctness of the translated tool structure compared with the original version. The construct validity indicates how well the instrument allows to measure the construct as it is defined by the reference theoretical framework (Vallerand, 1989). There are three ways to examine it: the test structure, convergent and divergent aspects compared with other instruments, and the effects of the psychological construct. In our study, we will analyze the test structure, that is its factor structure. Nevertheless, the researcher is limited in the convergence analysis since there is no other instrument assessing behavior disorders at the moment in Telugu language. To confirm the factor validity of our Telugu version, the researcher checked its factor structure in comparing it with the original version. Rating data was analyzed for the whole sample by the same procedure as that used in the original study (Aman et al., 1985a) to confirm the factor structure and

3 130 psychometric characteristics of the ABC. Factor analysis was conducted using the principal factoring method with iteration, followed by varimax rotation. Reliability Analysis Reliability analysis of a questionnaire informs on its accuracy, whatever it measures (Nunally, 1982). In other words, a reliable psychological test always evaluates the psychological construct the same way, whatever the construct. Among different reliability types, internal consistency, inter-rater reliability and the Test-retest reliability were checked. a) Internal consistency was estimated by Cronbach's alpha. An index higher or equal to 0.75 is satisfactory. It is observed that Cronback s Alpha was found to be 0.83 and it is signifies the internal consistency of the tool. b) Inter-rater reliability. Fifty subjects were rated by a pair of raters to confirm inter-rater reliability, which will be tested by Kappa coefficient. Sub group constitution and its size are confined to validation process of the original instrument (Aman et al., 1985a, 1985b; 1994). c) Test-retest reliability. Fifty subjects were rated twice with an interval of 4 weeks independently by the same staff member to confirm test-retest reliability. Spearman's rank correlation coefficient was calculated for each factor and the values obtained were found to have high positive correlation.

4 Application of ABC Checklist - Relationship between Staff's Satisfaction regarding Caring, Challenging Behavior and Psycho- Educational Profile (PEP-R) in a Population with Intellectual Disabilities Results Participants The participants in this study were 27 adults residents of the Lebenshilfe Institute at Visakhapatnam (Andhra Pradesh, India). These people are all subject to the same care and participate in different educational activities offered by the institution. The participants to the study (N = 27) were aged 16 to 50 years (mean = 28.7; sd = 6.9). Four of them (14.8%) were diagnosed with mild mental retardation, for 7 other (25.9%) a diagnosis of moderate mental retardation is proposed while for the last 16 persons (59.3%) the diagnosis is of severe to profound mental retardation (Table1). It is important to note that some people diagnosed with severe to profound retardation suffer from psychiatric comorbidity: a second diagnosis, autism, is proposed for 14 (52%) of them. Out of a total of 27 participants in the study only one is a female. Out of 27 participants, 8 people (29.6%) cannot speak.

5 132 Table 4.1 Demographic Data for each participant: Gender, Age, ID level and Second Diagnosis according to ICM 10 Subject Gender Age ID Level Second Diagnosis 1 Male 32 Moderate 2 Male 39 Profound Autism 3 Male 25 Moderate 4 Male 36 Profound Autism 5 Male 29 Severe 6 Male 35 Severe Autism 7 Male 32 Moderate 8 Male 22 Severe Autism 9 Male 32 Moderate 10 Male 31 Profound Autism 11 Female 20 Mild 12 Male 22 Moderate Autism 13 Male 26 Severe Autism 14 Male 25 Profound Autism 15 Male 21 Severe Autism 16 Male 32 Moderate 17 Male 22 Moderate 18 Male 27 Severe 19 Male 33 Profound Autism 20 Male 23 Severe Autism 21 Male 31 Mild 22 Male 30 Severe 23 Male 16 Profound Autism 24 Male 29 Severe Autism 25 Male 24 Profound Autism 26 Male 50 Mild 27 Male 30 Mild Descriptive statistics are summarized in Table 2. Beyond the great heterogeneity of responses for each participant, it is observed rather low levels of challenging behaviours in the sample under study. The dysfunctional behaviour most quoted is "hyperactivity / noncompliance" with a median of 5 (min = 0, max = 16). For the challenging behaviour "inappropriate language" (Mdn = 0; min = 0; max = 11) One must take into account that 8 participants

6 133 have no language capabilities and 8 subjects have some language skills without "inappropriate language": these two categories are indistinctly coted 0 in the "inappropriate language" items of ABC scale. Finally, 11 subjects have "inappropriate language". Table 4.2 Median Scores for the ABC, PEP-R and VAS Test Factor N Median Min. Max. ABC Irritability Lethargy Stereotypy Hyperactivity/ Non compliance Inappropriate Speech PEP-R Behaviour Scale Relationships/ Emotions Play/ Interest in Materials Sensory Response Language Development Scale Total Score VAS Satisfaction Effectiveness In terms of Spearman correlations (Table 3) between the behavioural (ABC) and skill levels (PEP-R), it is observed that two negative correlations between "stereotypy" and "relations / emotions" (ƒï = -0574, p.01) and between "stereotypy" and "play / interest for the material" (ƒï = -0,666, p.01). The "hyperactivity / noncompliance" factor is also negatively correlated to the "play / interest in the material" (ƒï = -0,406, p.05). Then, it is observed that a positive correlation exists between the "satisfaction" with the care quality (VAS) and "inappropriate language" (ƒï = 0.393, p.05) of ABC.

7 134 The researcher also observes a significant correlation between the "satisfaction" with care and the PEP-R "total development score" (ƒï = 0.384, p.05). The researcher also finds a significant correlation between two VAS assessments: "satisfaction" with care correlates significantly with the "effectiveness" of care (ƒï =.738, p.01). Correlations are observed within the PEP-R test: the four domains of the behaviour scale correlate significantly with each other and with the "total development score. Internal correlations in the ABC scale show significant correlations between the five factors (Table 3).

8 132 Table 4.3 Spearman Correlation between ABC, PER-P and VAS Irrita bility Letha rgy ABC PEP-R VAS Inappro Stereo Type Hyperactivit y noncompl.. Speech Relation ships/ Emotion s Play Interest Material s ABC Irritability Lethargy 0.583** Stereotypy 0.524**.578**.574**.666** PEP-R Behaviour Scale Devlpmnt. Scale Hyperactivity / Non compliance Inappropriate Speech Relationships/ Emotions Play/ Interest in Materials Sensory Response Sensor y respons 0.711**.406* Languag e Total Score 0.402*.409*.601**.393*.950**.557**.524** Language.718**.549*.545* Total Score.842**.805**.481*.530*.384* VAS Satisfaction Effectiveness.738** Significance ** p 01, * p 05 Satis factio n Effect ivenes s

9 4.3 Discussion The purpose of this study is to observe if there is a relationship between the level of skills (PEP-R) of people with ID and the challenging behaviours (ABC). The researcher seeks a link between challenging behaviours (ABC) and the feeling of educators about the effectiveness and satisfaction with their care (VAS). It can be observed that most people with ID have developed skills in the "relationships / emotions" and "play / interest in the material," unless they have behavioural problems such as "stereotypy". In addition, people with ID who have developed more skills in the "play / interest in the material" react less with inappropriate behaviour such as "hyperactivity / noncompliance." It is interesting to note that the identified correlations show a link between relational and emotional skills and challenging behaviours related to the isolation of the individual. Indeed, motor stereotypes are an obstacle to the relationship with the others because they cause the person to withdraw into himself. However, it is precisely noted that the more the relational skills are present, the less the isolation behaviours arise. Therefore the work aimed at the improvement of the relational skills, through activities inspired by the PEP-R items "play / interest for the material" and "relationships / emotions" becomes very relevant to reduce stereotyped behaviours. This is even more important as 52% of our sample suffers from mental retardation and autism. Gerber, Bessero, Robbiani et al. (2011) show that care via structured programs can decrease stereotypies and thus improve the quality of life of people with ID and autism. The results of the PEP-R allow

10 137 educators to create exercises and activities structured and tailored to the person with ID (Schopler, 1990; Panerai, Ferrante & Zingale, 2002). These people will then be stimulated by tasks suited to their needs and skills, which according to the results it is found, will depart them from stereotyped behaviours. The correlation identified between the items "play / interest for the material" and "hyperactivity / noncompliance" also goes in this direction. These results lead us to the question of the relation between occupational therapy and behavioural disorders. Hall, Oliver and Thorns (2003) tell us that stereotypical attitudes are more present in conditions of low stimulation while they are less present in conditions of social relationship. Furthermore, in a population with intellectual disabilities and autism, Wurbel (2001) argues that an impoverished environment is often associated with repetitive behaviours, whereas stimulating care helps decrease repetitive dysfunctional behaviours (Lewis & Kim, 2009). Our results also seem to show that most people have the ability to be occupied in an activity, whether manual, relational or educational, unless they show inappropriate behaviour or stereotyped activities. Regarding the correlation of the items "hyperactivity / noncompliance" and "play / interest in the material," it is interesting to note that the lower the level of the first factor, the higher is the second. In fact, playing involves a relational dimension, with acceptance of the other and understanding the rules. In its more solitary aspect, it implies rules that are fixed by the person, and requires curiosity and / or imagination. Being interested in the playing material means to connect with an object. So using the game by

11 138 adapting it to the individual may allow him to continue to work on learning the rules, whether from a structural, relational or social point of view. This probably has a direct influence on the attitudes of "hyperactivity / noncompliance." Therefore, improving interpersonal skills ("relationships / emotions" and "play / interest in the material") should lead to a decrease in challenging behaviours ("stereotype and "hyperactivity / noncompliance") that are precisely an obstacle to the relationships with others. The practical way to address these issues in the field with the ID people would be to work on the occupational activities and on the understanding of social interaction. However, to achieve this, the teacher must be able to establish a contact with the patient, find a way to communicate with him and thus, with the support of assessment tools such as PEP-R and ABC, specifically address his problems and needs. Murphy et al. (2005) found that challenging behaviours are greater in people with poor language skills and poor quality of social interactions. In agreement with our suggestion, Kevan (2003) also shows in his meta-analysis that expressive communication skills in people with ID and behavioural disorders must be promoted for: this can be done through targeted exercises to enhance the skills of the person with ID, or by changing the communication environment (e.g. the staff adapts communication by reducing the oral component and increasing the non-verbal one, using a visual program with pictograms, pictures, etc.). Regarding our second hypothesis, it is observed that the "satisfaction" and "effectiveness" of the treatment are not related to the first four factors of

12 139 the ABC. In contrast, the "satisfaction" with care is highly correlated with the "inappropriate language" factor. It can partially validate the initial hypothesis, which was to inquire whether there was a link between the level of "satisfaction" and "effectiveness" of educator care activity and the intensity of challenging behaviours. Thus it is affirmed that when there is more "inappropriate language", the score of "satisfaction" with care is higher. This correlation is difficult to interpret because inappropriate language does not seem to be perceived by Indian professionals as an obstacle in their care. This suggests that the presence of language in a person with ID is a factor of satisfaction for the teacher, independently of the appropriateness of the language itself. Several authors (Bradshaw, 2001; Smidt, Balandin, Reed and Sigafoos, 2007) show that the staff tends to overestimate the ability to understand of people with ID and it also tends to use more verbal communication than will be understood by them. Since communication involves a transmitter and a receiver, the illusion of verbal communication perceived by educators, leads them to answer in the same modality and despite the real capacities of people with ID to whom they address themselves. The illusion of communication through language is sufficient to create the educator sense of satisfaction with the care he delivers. So it is observed that, in the presence of a person speaking with a non-verbal language, the feeling of satisfaction of educators could remain positive. The question arises also for the care of people who are unable to communicate, those with the lowest skill levels. This question is all the more important as the more the

13 140 "satisfaction" with the care, the greater is the feeling of "effectiveness" of the care: a positive feeling of the professionals leads to a better quality of care. The research stresses the importance of this positive feeling in our results by observing the correlation between the "satisfaction" with care and the PEP-R "total developmental score". It is noted that the higher the level of competence of people with ID, the more positive is the educators perception of their care activity. This implies that the nursing staff seems to be more helpless when confronted with people with low level. However, among the seven areas investigated in the PEP-R developmental scale, three relate to the capacity of communication. Without being able to be sure about it, one can emphasize the strong likelihood that low developmental level involves poor communication skills. Once again, our results lead us to underline the importance of the communication skills for the person with ID. The deployment of strategies to improve communication by a training of the staff aimed at increasing non-verbal communication and decreasing verbal, in order to adapt to the capabilities of understanding of the person with ID, becomes specially relevant (Bradshaw, 2001; Kevan, 2003; Smidt et al., 2007). The assessment of the skills of the person with ID, using the PEP-R, allows the implementation of personalized educational strategies aimed at improving areas of development that are emerging. The implementation of these strategies, their monitoring and efficiency leads to a sense of accomplishment among educators. In addition, as demonstrated by Gerber et al. (2008, 2011) in a longitudinal study, whatever is the program deployed, it

14 141 brings a reduction in challenging behaviours and therefore an improvement of the quality of life for people with ID and autism. In case these people have a very low level of skills it is important to limit the expectations of educators to keep them motivated. In this case, support and awareness rising through training of the nursing team are needed to reduce burnout. Skirrow and Hatton (2007) show that staff working with people with ID is at risk of burnout, especially, according to Cheung Chung and Harding (2009), in the presence of challenging behaviours. However, being negative emotions as a mediator of the relationship between behavioural disorders and burnout (Mills & Rose, 2011), a regular assessment of the feeling of satisfaction of educators via VAS allows remaining vigilant and preventing the risk of burnout. Innstrand, Espnes and Mykletun (2004) show that job satisfaction is an indicator of the health and well-being of the personnel. In conclusion, this study allows identifying significant correlations between challenging behaviours in a group of young Indians with ID, their skill levels, educator satisfaction with care and their sense of the effectiveness of the care activity.

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