The relation between intrapersonal and interpersonal staff behaviour towards clients with ID and challenging behaviour: a validation study of the Staff–Client Interactive Behaviour Inventory

Background   Interpersonal staff behaviour is one of the instigating factors associated with challenging behaviour in clients with intellectual disabilities (ID). There are several studies focusing on the influence of intrapersonal staff characteristics – such as beliefs, attributions and emotional reactions – on staff behaviour. Little is known, however, about interpersonal staff behaviour itself. This study describes the development and validation of the Staff–Client Interactive Behaviour Inventory (SCIBI), measuring both intrapersonal and interpersonal staff behaviour in response to challenging behaviour in clients with ID.
Method   A total of 292 staff members, employed in residential and community services, completed the SCIBI for 34 clients with ID and challenging behaviour.
Results   Confirmatory factor analysis of a seven-factor model – with assertive control, hostile, friendly and support-seeking interpersonal behaviour; proactive thinking; self-reflection; and critical expressed emotion as reliable factors – showed an exact fit to the data, indicating construct validity and reliability of the SCIBI. A series of multilevel regression analyses showed higher age of the client to be negatively associated with assertive control. Job experience, level of education, type and sex of staff predicted interpersonal behaviour. Also, intrapersonal staff behaviour, including critical expressed emotion, proactive thinking and self-reflection, predicted interpersonal behaviour.
Conclusions   The SCIBI can be used to identify staff intrapersonal and interpersonal behaviour towards clients with ID and challenging behaviour. Results obtained with the SCIBI can provide new directions for individual client treatment plans and staff training programmes.     

Sexuality and personal relationships for people with an intellectual disability. Part II: staff and family carer perspectives

Background   Recent ideological shifts in service provision promote appropriate sexual expression for people with an intellectual disability (ID), although there is little evidence that such advances in ideology are matched by current service provision. Part II of the current two-part study assessed the attitudes of staff and family carers to the sexuality of people with an ID.
Method   A questionnaire survey which included case scenarios was carried out with family ( n  = 155) and staff carers ( n  = 153) of people with an ID in the west of Ireland.
Results   In general, staff carers were more inclined than family carers to openly discuss issues of sexuality with service users, and to suggest environmental, rather than service-user characteristics, as impediments to such discussions. Attitudinal differences emerged with significant differences between staff and family carers and between younger and older carers. Staff carers were more likely to support service-user engagement in intimate and non-intimate relationships whereas the majority of family carers (80%) showed a preference for low levels of intimacy in service-user relationships.
Conclusion   When compared with the attitudes of family carers towards the sexuality of people with ID, the attitudes of staff carers more closely match those promoted by ideological developments. However, differences in attitudes between carer groups may lead to inconsistent approaches to the management of sexuality. As a consequence, we conclude that there is continued need to provide staff and family carers with opportunities for dialogue and an ongoing need for training in the area of sexuality.     

Brief report: Aggressive challenging behaviour in adults with intellectual disability following community resettlement

Background   Aggressive challenging behaviour is common in adults with intellectual disability (ID) in long-term care facilities. The government's commitment to the closure of all facilities in England has led to concerns over how to manage this behaviour in the community. The aim of this study was to assess changes in aggressive challenging behaviour and psychotropic drug use in adults with ID following resettlement using a person-centred approach.
Method   The Modified Overt Aggression Scale was administered to carers of 49 adults with ID prior to discharge from a long-stay hospital and 6 months and 1 year after community resettlement.
Results   All areas of aggressive challenging behaviour reduced significantly between baseline and 6 months following resettlement ( P  < 0.001). This reduction remained (but did not decrease further) at 1-year follow-up.
Conclusions   Further work is needed to evaluate the role of environmental setting on aggressive challenging behaviour in adults with ID.     

A revised sexual knowledge assessment tool for people with intellectual disabilities: is sexual knowledge related to sexual offending behaviour?

Background The aim of the current study was to update an existing short measure of sexual knowledge and generate some initial reliability and normative data. Comparisons of sexual knowledge across several groups were made to examine whether or not a lack of sexual knowledge is related to sexual offending. Methods The Bender Sexual Knowledge Questionnaire (BSKQ) was revised, and a new questionnaire, the General Sexual Knowledge Questionnaire (GSKQ), was created and administered to four groups of participants: (1) sex offenders with an intellectual disability (ID) and a history of engagement in treatment (n = 12); (2) sex offenders with an ID and no history of treatment (n = 13); (3) non‐offenders with an ID (n = 28); and (4) non‐offenders without an ID (n = 10). Between‐group comparisons were made; internal consistency, split‐half reliability and correlations were examined. Results The internal consistency and the split‐half reliability of the entire questionnaire was good. Non‐offenders without an ID scored significantly higher than non‐offenders with an ID on all sections of the GSKQ. Sex offenders who had undergone treatment scored significantly higher than non‐offenders with an ID on several sections of this questionnaire. Conclusions The initial findings from this study suggest that the psychometric properties of the GSKQ are promising. The assumption that lower sexual knowledge may be related to the risk of committing a sexual offence by people with IDs is possibly erroneous, and further research is required to clarify this possibility.     

'It's pretty hard with our ones, they can't talk, the more able bodied can participate': staff attitudes about the applicability of disability policies to people with severe and profound intellectual disabilities

Background   The level of resident's adaptive behaviour and staff facilitative practices are key sources of variation in outcomes for residents in community-based residential services. The higher the resident support needs the poorer their outcome. Although substantial investment has been made in values-based training for staff, their attitudes and the impact of these on practice is largely unexplored.
Method and findings   The first study used ethnographic and action research methods to examine the daily lives of 25 residents with severe and profound intellectual disabilities (ID), who lived in five small group homes, and the attitudes of the staff supporting them. Thematic analysis of the data led to a proposition that although staff accept principles of inclusion, choice and participation for people with ID in general, they do not consider it feasible to apply these to the people with severe and profound ID to whom they provide support. The findings from a second study that used a group comparison design and administered a short questionnaire about staff attitudes to 144 direct-care staff and first-line managers working in disability services confirmed this hypothesis.
Conclusions   The study suggests more focused attention is needed to staff understanding the values embedded in current policies and their application to people with more severe disabilities.     

The treatment of challenging behaviour in intellectual disabilities: cost-effectiveness analysis

Background   Antipsychotic drugs are used in the routine treatment of adults with intellectual disabilities (ID) and challenging behaviour in the UK despite limited evidence of their effectiveness. There is no evidence on their cost-effectiveness.
Methods   The relative cost-effectiveness of risperidone, haloperidol and placebo in treating individuals with an ID and challenging behaviour was compared from a societal perspective in a 26-week, double-blind, randomised controlled trial. Outcomes were changes in aggression and quality of life. Costs measured all service impacts and unpaid caregiver inputs.
Results   After 26 weeks, patients randomised to placebo had lower costs compared with those in the risperidone and haloperidol treatment groups. Aggression was highest for patients treated with risperidone and lowest for patients treated with haloperidol; however, quality of life was lowest for patients treated with haloperidol and highest for patients treated with risperidone.
Conclusion   The treatment of challenging behaviour in ID with antipsychotic drugs is not a cost-effective option.     

Annotation: New research into general psychiatric services for adults with intellectual disability and mental illness

Background   There are a variety of models for the mental health care of adults with comorbid intellectual disability (ID) and mental illness. There has been a long-running debate as to whether this should be provided by general psychiatric or specialised ID services. A previous review concluded that there was no clear evidence to support either model with research being often of a poor quality, lacking replication, and outcome measures were often inappropriate or varied between studies. This review aims assess differences in outcome for patients with ID and mental disorders treated in general or specialised ID mental health services.
Method   A literature review was conducted using electronic databases and websites of ID and mental health organisations to locate all references where people with ID receive mental health care in general psychiatric services from 2003. No meta-analysis was attempted because of the divergent nature of the studies.
Results   People with ID (especially severe ID) have reduced access to general psychiatric services. General psychiatric inpatient care is unpopular especially with carers but can be improved by providing specially trained staff and in-reach from community ID teams. Opportunities may exist to enhance the care of people with borderline intellectual functioning within general psychiatric services.
Conclusions   Although no new randomised controlled trials have been published, the weight of research is accumulating to suggest that provision of general psychiatric services without extra help is not sufficient to meet the needs of people with ID.     

The use of melatonin to treat sleep disorder in adults with intellectual disabilities in community settings – the evaluation of three cases using actigraphy

Background   Sleep disorders are known to be very prevalent in adults with intellectual disabilities (ID) but to date there has been limited objective assessment of either sleep disorders or of interventions such as the use of melatonin.
Methodology   A protocol-driven assessment and intervention procedure was followed with three people with moderate to severe ID identified as having a possible sleep disorder. Actigraphic assessment was used to determine the nature of the sleep disorder, after which sleep hygiene advice and then individual treatment with melatonin were provided, following which further actigraphic assessment was carried out. Behavioural disturbance was formally assessed before and after the intervention phase.
Results   Following treatment with melatonin, changes in circadian rhythm were noted, together with improvements in challenging behaviour, but no significant effects were noted with regard to either quantity or quality of sleep.
Conclusions   A standardised procedure for assessment and treatment of sleep disorders in people with ID was established. Although no apparent effects on sleep quantity or quality were noted, this may reflect factors inherent in the sample, rather than the relative efficacy of melatonin treatment per se .     

Responsiveness to staff support: evaluating the impact of individual characteristics on the effectiveness of active support training using a conditional probability approach

Background Active support training was fully conducted in 38 community houses accommodating 106 adults with intellectual disabilities (ID; group 1), but not in a further 36 accommodating 82 adults with ID (group 2). The aims of the present study were to analyse whether staff became more effective in supporting resident activity after the implementation of active support, and whether there was evidence of differential responsiveness by people with differing status in relation to adaptive behaviour, psychiatric diagnosis, challenging behaviour or autism. Methods Observations of staff:resident interaction and resident engagement in activity were taken before and after active support training. Changes in Yule's Q statistics, indicating the likelihood that resident engagement in activity followed staff giving residents verbal instruction or non‐verbal assistance, were compared for the two groups. In addition, changes in similar statistics were compared for residents within group 1: (1) with Adaptive Behaviour Scale (ABS) scores above and below 180; and (2) with and without severe challenging behaviour, the triad of social impairments and mental illness. Results Yule's Q for engagement given non‐verbal assistance significantly increased post‐training among group 1, but not among group 2. Similar significant increases were found among group 1 residents with ABS scores below 180 without challenging behaviour, with and without the triad of social impairments, and without mental illness, but not with an ABS score above 180, with challenging behaviour and with mental illness. Conclusion The present analysis reinforces previous studies on the effectiveness of active support training for adults with more severe ID (i.e. with ABS scores below 180). Active support was as effective for people with the triad of social impairments as for those without it. However, the effectiveness of support offered to people with challenging behaviour or mental illness did not significantly increase.     

Impulsiveness as a factor in sexual offending by people with mild intellectual disability

Background It has been suggested that sexual offending by people with intellectual disability (ID) results from a pattern of impulsive behaviour that is consistent with psychosocial disadvantage, rather than sexual deviancy. This study aimed to explore this hypothesis by assessing levels of impulsiveness in sexual offenders, non‐sexual offenders and non‐offenders with mild ID. Method Impulsiveness was assessed using a modified version of the Barratt Impulsiveness Scale (11th edition). Total impulsivity scores were compared between sexual offenders, non‐sexual offenders and non‐offenders, all with mild ID. Results There was a significant difference in the levels of impulsiveness between sexual offenders and non‐sexual offenders with ID (t = 2.83, P < 0.01). The sexual offenders were less impulsive than non‐sexual offenders. Conclusions This study did not support the hypothesis that sexual offending by people with ID is better explained by impulsive behaviour rather than sexual deviancy. It supports recent findings that among the general population, sexual offenders are less impulsive than controls and violent offenders.     

Overcoming the barriers experienced in conducting a medication trial in adults with aggressive challenging behaviour and intellectual disabilities

Background   Aggressive challenging behaviour in people with intellectual disability (ID) is frequently treated with antipsychotic drugs, despite a limited evidence base.
Method   A multi-centre randomised controlled trial was undertaken to investigate the efficacy, adverse effects and costs of two commonly prescribed antipsychotic drugs (risperidone and haloperidol) and placebo.
Results   The trial faced significant problems in recruitment. The intent was to recruit 120 patients over 2 years in three centres and to use a validated aggression scale (Modified Overt Aggression Scale) score as the primary outcome. Despite doubling the period of recruitment, only 86 patients were ultimately recruited.
Conclusions   Variation in beliefs over the efficacy of drug treatment, difficulties within multidisciplinary teams and perceived ethical concerns over medication trials in this population all contributed to poor recruitment. Where appropriate to the research question cluster randomised trials represent an ethically and logistically feasible alternative to individually randomised trials.     

Melatonin decreases daytime challenging behaviour in persons with intellectual disability and chronic insomnia

Background   Persons with intellectual disability (ID) and sleep problems exhibit more daytime challenging behaviours than persons with ID without sleep problems. Several anecdotal reports suggest that melatonin is not only effective in the treatment of insomnia, but also decreases daytime challenging behaviour. However, the effect of melatonin treatment on daytime challenging behaviour in persons with ID has not been investigated in a randomised controlled trial.
Method   We investigated the effects of melatonin on challenging behaviour using data from two randomised controlled trials on the efficacy of melatonin on sleep problems in 49 persons (25 men, 24 women; mean age 18.2 years, SD = 17.1) with ID and chronic insomnia. Participants received either melatonin 5 mg (<6 years 2.5 mg) or placebo during 4 weeks. Daytime challenging behaviour was measured by the Storend Gedragsschaal voor Zwakzinnigen – Maladaptive Behaviour Scale for the Mentally Retarded (SGZ; Kraijer & Kema, 1994 ) at baseline week and the end of the fourth treatment week. Salivary dim light melatonin onset (DLMO) was measured at baseline and the last day of the fourth treatment week. Sleep logs were used to gather information on sleep parameters.
Results   Melatonin treatment significantly reduced SGZ scores, sleep latency, and number and duration of night wakes, and treatment increased total sleep time and advanced DLMO. However, after 4 weeks of treatment, change in SGZ scores did not significantly correlate with change in sleep parameters, nor with change in DLMO. Relatively strong correlations were found between change in SGZ scores, change in DLMO and number of night wakes.
Conclusions   Melatonin treatment in persons with ID and chronic insomnia decreases daytime challenging behaviour, probably by improving sleep maintenance or by improving circadian melatonin rhythmicity.     

Sexuality and personal relationships for people with an intellectual disability. Part I: service-user perspectives

Background   Despite a recent ideological shift towards the recognition of sexual autonomy for people with an intellectual disability (ID), there are continuing social and cultural barriers to sexual expression. Part I of the current two-part study assessed the sexual knowledge, experiences and aspirations of service users through focus groups and also examined their perceptions of impediments to achieving sexual autonomy.
Method   Thirty-two participants (20 male, 12 female) attending an ID service participated in focus groups delineated by gender and age group (13–17 years; 18–30 years; 31+ years).
Results   Analysis of the focus groups showed that service users, especially those over the age of 18 years, had an understanding of their sexual rights but also identified a number of social and cultural barriers that they felt prevent them from achieving sexual autonomy. Those under the age of 18 years had only rudimentary knowledge of sexuality issues, for example pregnancy and sexual anatomy, but aspired to relationships and marriage similar to those over the age of 18 years. Family and staff attitudes appeared to be very influential in the views of respondents. All service users had received some form of sex education, although the benefits of such education appeared most enduring for those over 18 years.
Conclusion   Service users had an understanding of their sexual rights and the social and environmental barriers that prevent them from fulfilling their rights. The provision of sex education training and promotion of positive attitudes towards appropriate sexual expression is critical to the realization of sexual autonomy for people with an ID.     

Penile hygiene: puberty, paraphimosis and personal care for men and boys with an intellectual disability

Background   Supporting men and boys with an intellectual disability (ID) to meet their penile hygiene needs is perhaps one of the least acknowledged but most confronting issues facing care staff. The delivery of intimate hygiene can be a challenging topic particularly as it has been drawn into the emerging sexuality discourse and the ongoing abuse narrative. Compounding this challenge is the lack of guidance in intimate care for support staff. In addition, whereas the male with an ID outnumber the female, female care staff greatly outnumber male staff. Whether this situation affects outcomes for men and boys with an ID is unknown but it is an issue which should be examined.
Method   This paper reports data from two separate studies, one quantitative the other qualitative, which sought to explore penile hygiene as a male health issue.
Results   Results show the practice of care staff to be inconsistent, the views and values of care staff to be divergent. Some patterns and contextual differences were identified depending upon the gender of care staff. An emerging dialogue described some of the positive contributions that male staff make to men and boys with an ID.
Conclusions   The penile health needs of men and boys with an ID are being compromised by a lack of guidance, training, knowledge and limited gender-sensitive care.     

Staff attributions about challenging behaviours of people with intellectual disabilities and transactional stress process: a qualitative study

Background   Staff explanations about challenging behaviours of people with intellectual disabilities are purported to play a significant role in the way they respond to them. Despite attempts made in research to understand the mechanisms of causality, a lack of association between attributions, emotions and behaviours is reported. This study investigates these relationships within a broader framework including attributions in the transactional stress model of Lazarus and Folkman.
Method   A qualitative design has been selected; semi-structured interview format was used in order to investigate implication of attributions in stress regarding Weiner's model of helping behaviour. A case study method has been adopted to allow consideration of ecological data, a case study representing a special encounter with a challenging behaviour. Categorical analysis was conducted.
Results   The results suggest three main issues. First, it appears that Weiner's model is too restrictive in order to explain the complexity of contextualised encounters. Second, a need to differentiate types of attributions within a temporal perspective is highlighted. Finally, consideration of the coping role of attributions is suggested.
Conclusions   A need to extent the research concerning attribution is suggested. The insertion of research into ecological contexts and the introduction of coping concept regarding staff attributions of challenging behaviours would allow a broader view of the role of attributions.     

Behavioural flexibility in individuals with Angelman syndrome, Down syndrome, non-specific intellectual disability and Autism spectrum disorder

Background   Little is known about behavioural flexibility in children and adults with Angelman syndrome and whether people with this syndrome have more or less problems in being behaviourally flexible as compared with other people.
Method   Behavioural flexibility scores were assessed in 129 individuals with Angelman syndrome using 11 items from the Behavioural Flexibility Rating Scale-Revised ( Green et al. 2007 ). Level of behavioural flexibility scores in individuals with Angelman syndrome ( N  = 129) was compared with that of people with non-specific intellectual disability (ID) ( N  = 90), Down syndrome ( N  = 398) and Autism spectrum disorder ( N  = 235).
Results   Comparative analyses show that individuals with Angelman syndrome were more flexible than those with non-specific ID ( P  < 0.001) and those with Autism spectrum disorder ( P  < 0.01). There were no differences in behavioural flexibility scores between individuals with Angelman syndrome and those with Down syndrome ( P  = 0.94).
Conclusion   It is concluded that individuals with Angelman syndrome are comparatively flexible in their behaviour.     

Offending by adults with learning disabilities and the attitudes of staff to offending behaviour: implications for service development

The aims of this study were: (I) to identify all adults with learning disabilities living in residential homes or attending day services in the Cambridge Health District in contact with the criminal justice system during 1992; (2) to evaluate the responses of services involved; and (3) to investigate the attitudes of staff and the policies of the services to ‘offending behaviour'. Details of offences committed and the response of the police, health and social services, and other agencies were obtained by direct interview with the senior staff and through examination of case records. The attitudes of staff to offending behaviour was investigated by the use of a semi-structured questionnaire. Seven (2%) out of 358 adults with learning disabilities were reported to have had contact with the police during 1992. The eight offences allegedly committed by the seven people were two acquisitive offences, two sexual offences, one assault, one wasting of police time, one offence against the Public Order Act and one traffic offence. One offender was cautioned after the Crown Prosecution Service discontinued the case because of lack of evidence, while the other alleged offenders received informal warnings. None of the seven alleged offenders were prosecuted. Three alleged offenders lived in hostel accommodation, yet hostel accommodation only accounts for 7.8% of adults with learning disabilities living in the Cambridge Health District. Because of a lack of operational policies on offending behaviour, there were no existing referral structures for people who might need specialist health service support. Referrals tended to be inconsistent, with a considerable time-lag between offence and referral. Tolerance levels towards offending behaviour were extremely high in the two hostels, 20 group homes and day centres which were included in this study. Theft and criminal damage was hardly ever reported. Thirty establishments were visited during the course of this study. Of these establishments, staff in 12 said they would ahvays report a major assault. In only three would a sexual assault or indecent exposure always be reported if it was to occur. Staff at one residential establishment said they would hesitate to report rape and the staff in another two would consider the circumstances before reporting it to the police.     

Social support and intellectual disabilities: a comparison between social networks of adults with intellectual disability and those with physical disability

Background   Social support has been identified as a major protective factor in preventing mental health problems and also as a major contributor to quality of life. People with intellectual disabilities (ID) have been identified as having limited social support structures. Interventions have been focused on promoting their social presence and integration. However, previous studies have shown that this does not always lead to the formation of social relationships. To date few studies have looked at how having an ID leads to impoverished social networks. This study aimed to do this by contrasting the social relationships of people with physical disabilities (PD) and people with ID.
Methods   Two groups of participants were recruited; 30 people with mild ID and 17 people with PD. Social and functional support networks were assessed, in addition to life experiences. Between and within group differences were then explored statistically.
Results   Adults with ID had more restricted social networks than PD, despite being involved in more activities. Social support for adults with ID was mainly provided by family and carers and few relationships with non-disabled people were identified. In contrast adults with PD had larger social networks than had been reported in the mainstream literature and had a balance of relationships with disabled and non-disabled people.
Conclusions   The results suggest that there are additional processes attached to having an ID, which lead to continued impoverished lifestyles. The findings also endorse other work that suggests being physically integrated and engaged in a wide range of activities does not guarantee good social and emotional support.