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.     

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.     

Changes in coronary heart disease risk profile of adults with intellectual disabilities following a physical activity intervention

Background   Regular physical activity is one of the modifiable risk factors for coronary heart disease (CHD). With an increasing age profile and similar patterns of morbidity to the general population, persons with intellectual disabilities (ID) and their caregivers would benefit from data that indicate CHD risk factors. Knowledge of the CHD risk factors and the changes a physical activity intervention may have on theses risk factors will facilitate future intervention programmes.
Methods   A cohort of 100 men and women between the ages of 21 and 73 years with ID living in a community group home in the North-West Province of South Africa was recruited. A CHD risk profile was compiled by means of a questionnaire and physical assessment that included resting blood pressure, body mass index, non-fasting glucose and cholesterol and cardiorespiratory fitness. A 12-week physical activity intervention was then conducted 3 days/week after which the baseline measurements were repeated.
Results   The results indicated that 85% of the participants were inactive, while 67% were overweight and obese. Hypertension (6.1%) and smoking (6.1%) were relatively low in this population with ID. Glucose concentrations above the recommended cut-off values were observed in 28% of the participants. Total cholesterol concentrations above normal were measured in 23% of the participants. The physical activity intervention reduced inactivity to 50% and resulted in a significant increase in cardiorespiratory fitness and a decrease in percentage body fat in both men and women.
Conclusion   Inactivity is a major risk factor in this population with ID living in a community group setting. The implementation of the physical activity intervention significantly reduced the risk factors for CHD.     

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.     

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.     

Women with intellectual disability at risk of adverse pregnancy and birth outcomes

Background   An increasing number of women with intellectual disability (ID) have children. Cross-sectional, clinical population data suggest that these women face an increased risk of delivering preterm and/or low birthweight babies. The aim of this study was to explore the prevalence of poor pregnancy and birth outcomes in women with ID and/or self-reported learning difficulties in an antenatal population.
Methods   A total of 878 pregnant women attending their first antenatal clinic visit were 'screened' for ID. Pregnancy and birth outcomes data were extracted from medical records post-partum. These data included pregnancy-related health conditions, including pre-eclampsia and gestational diabetes, and birth outcomes, including gestational age, birthweight, Apgar score and admission to neonatal intensive care and/or special care nursery.
Results   A total of 57 (6.5%) pregnant women with ID and/or self-reported learning difficulties were identified. These women experienced an unusually high rate of pre-eclampsia (odds ratio = 2.85). Their children more often had low birthweights (odds ratio = 3.08), and they were more frequently admitted to neonatal intensive care or special care nursery (odds ratio = 2.51).
Conclusion   Further research is needed to understand the reasons for the adverse findings of this study and identify potentially changeable factors contributing to adverse pregnancy and birth outcomes for women with ID and/or self-reported learning difficulties and their children. To ensure quality antenatal care, health professionals may need to consider innovations such as extended consultation times, communication aids and audio-taping consultations.     

Unnoticed post-void residual urine volume in people with moderate to severe intellectual disabilities: prevalence and risk factors

Background   Increased post-void residual urine volume (PVR) is often seen in geriatric populations. People with intellectual disabilities (ID) have risk factors in common with these populations.
Aims   To investigate in adults with ID:

• • 

  Feasibility of portable ultrasound bladder scanning;
• • 

  Prevalence of PVR; and
• • 

  Relations with proposed risk factors for PVR.

Methods   In a cross-sectional design, PVR was measured using ultrasound scanning in 346 adults with moderate to severe ID aged 18–82 years. Relationship between increased PVR and the following risk factors was assessed: age, level of ID, gender, ambulancy, medication, chronic illnesses, incontinence and profound multiple disabilities (PMD). Acceptation of scanning and manageability were noted.
Results   Feasibility: All participants were cooperatively undergoing the ultrasound scan and all outcomes were sufficiently interpretable. Prevalence: PVR ≥ 150 mL was newly identified in 30/346 persons (8.7%, 95% confidence interval 5.92–12.14). Associations: Higher age ( P  = 0.001), laxative use ( P  = 0.001), chronic illnesses other than epilepsy ( P  = 0.005), profound ID ( P  = 0.008), incontinence ( P  = 0.048) and immobility ( P  = 0.005) are determinants that were associated with urinary retention.
Conclusions   The bladder ultrasound scan is a feasible method to identify increased PVR in adults with more severe levels of ID. The prevalence of PVR in adults is similar to prevalences found in the geriatric general population.     

Ethnic variation in service utilisation among children with intellectual disability

Background   This study examined whether service utilisation among children with intellectual disability (ID) varied by ethnic cultural group.
Method   Survey carried out in four special schools in London. Information was provided by school teachers using case files, and 242 children aged 7 to 17 years with mild and moderate ID were identified. Ethnic categories were derived from self-reported main categories. Service utilisation categorised as use of: child and adolescent mental health services (CAMHS), social services, physical health and education services.
Results   Child and adolescent mental health services uptake was lower for South Asians than for White British ( P  = 0.0487). There were statistically significant differences among ethnic groups for community-based social services uptake (being the highest for the Black groups and the lowest for South Asians, P  = 0.015) and respite care uptake (being the highest for the Black and White European groups and the lowest for South Asians, P  = 0.009). In regression analysis family structure predicted CAMHS service utilisation and social service community support. Ethnicity predicted use of respite care.
Conclusions   Significant ethnic differences in service utilisation among children with ID were found for both CAMHS and social service contact. There was particularly low service use for the South Asian group. These differences might arise because of differences in family organisation, as more South Asian children lived in two-parent families, which may have been better able to provide care than single-parent families. Other factors such as variation in parental belief systems and variation in psychopathology may be relevant. Implications are discussed.     

Health professionals' attitudes and emotions towards working with adults with intellectual disability (ID) and mental ill health

Objectives Mainstream mental health services are providing more care for individuals with an intellectual disability (ID); this has implications for staff and service users. Attitudes of staff towards people with ID in mental health services may be negative and negative staff attitudes may have a detrimental impact on service provision. Design A cross‐sectional design was used. Methods A questionnaire designed to investigate the attitudes and emotions of staff towards delivering mental health care to adults with ID was completed by 84 staff from mainstream and specialist ID services. Results Staff in both services experienced more positive emotions when working with clients whom they are currently employed to work with. When the frequency of contact with adults with ID, the number of individuals worked with and the amount of formal ID training received were considered, there was no significant difference between the attitudes of staff in both services. Positive correlations were found between attitude scores and positive emotional experiences in both services. Conclusions The research suggests that numerous factors, including the role of emotional experience and a number of environmental aspects, need to be considered in the context of providing mental health services to adults with ID to ensure the highest quality. Research limitations and clinical implications of the study are also considered.     

Suicide amongst people with intellectual disability: An Australian online study of disability support staff experiences and perceptions

Background

Individuals with intellectual disability (ID) have a higher likelihood of exposure to identified risk factors for suicide when compared with the general community and have been recognised as being both capable of forming intent for suicide and acting on this intent. However, in spite of research outlining these concerns from the 1970s, there remains a dearth of studies that examine suicide amongst the population of people with ID.

Method

An online cross‐sectional survey was purposively developed, with questions aimed at identifying both the experiences and current practices of support staff who assist people with ID in relation to suicide, suicidal behaviour and suicide assessment. It was undertaken across both rural and metropolitan areas in Australia. The survey was open for a period of 12 months. A total of 139 respondents (109 female/30 male), with a mean age of 41 and an average 12 years of experience in supporting people with ID, completed the tool.

Results

A total of nine suicides by people with ID were reported. Seventy‐seven per cent of the respondents reported that they had individuals with ID display suicidal behaviours, and 76% noted that a person had specifically talked about wishing to end their life. Only four participants (3%) noted that they did not support individuals with a dual diagnosis of ID and mental health concern. Sixty per cent of participants reported that no one in their organisation had ever completed a suicide risk assessment, and only 28% reported that they would do a suicide risk assessment if an individual that they supported was diagnosed with a mental health issue.

Conclusions

The current findings indicate that support staff recognise the capacity of people with ID to conceptualise suicide, note the existence of suicidal discussions and behaviours and report on actual suicides. This represents one of the few Australian studies that has specifically considered suicide amongst this cohort of people and reinforces the fact that suicide is not unknown in this population. The data indicate a possible divide between the reports of people with ID actively talking about and acting on suicidal thoughts and the lack of any proactive use of any tools to assess for this risk.     

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.     

Procedural discourse in intellectual disability and dual diagnosis

Background   Knowledge of discourse abilities of adults with intellectual disability (ID) and mental illness is limited. The present study examined the procedural discourse skills of two cohorts of adults with ID – one cohort with ( n  = 7) and one cohort without ( n  = 7) a psychiatric diagnosis of psychosis.
Methods   Participants completed the 'dice game', a procedural discourse elicitation procedure that has been used by previous researchers.
Results   Results revealed that while all participants demonstrated an understanding of the task, participants with ID alone were more able to communicate the key elements of the game than the participants in the dual diagnosis group.
Conclusions   Results of this investigation suggest that individuals with dual diagnosis have difficulties that may relate to previously identified discourse impairments in people with schizophrenia, and this may relate to a larger difficulty in taking into account the listener's needs.     

Mental Health of Children in Palestinian Kindergartens: Resilience and Vulnerability

Background:  Exposure to adversity does not necessarily lead to the development of psychopathology in all affected children. This study examined the factors associated with resilience and vulnerability in mental health in the Gaza Strip in 2007.
Methods:  Children selected from a random sample of kindergartens (3-6 years old, N  =   350) were assessed for growth and their mothers administered an interview including a psychometric test battery.
Results:  Factors associated with resilience were maternal rated good health, higher maternal level of education, and less child exposure to traumatic events. Factors associated with vulnerability were poor maternal mental health, and male gender.
Conclusions:  Our findings highlight the importance of maternal health and education in affecting children's mental health.     

The relationship between intellectual disability, Indigenous status and risk of reoffending in juvenile offenders on community orders

Background   Intellectual disability (ID), age and aboriginal status have been independently implicated as risk factors for offending to varying degrees. This study examined the relationship between age, ID and the Indigenous status of juvenile offenders. It also examined the outcomes of the sample's offending in terms of court appearances and sentencing, criminogenic needs and risk of reoffending.
Method   The sample comprised 800 juvenile offenders on community orders of whom 19% were Indigenous, who completed the New South Wales Young People on Community Order Health Survey between 2003 and 2005. Risk and criminogenic needs were evaluated using the Youth Level of Service/Case Management Inventory (Australian Adaptation) (YLS/CMI: AA).
Results   Those with an ID were found to have a higher risk of reoffending than those without an ID. Those with an ID were also more likely to be younger and Indigenous. For Indigenous young offenders, there was no difference between those with and without an ID in risk category allocation or number of court dates. For non-Indigenous young offender, those with an ID had higher risk scores and more court dates.
Conclusions   This study provided evidence that Indigenous status may play a significant role in the relationship between ID and offending in juvenile offenders on community orders. These findings have clear implications for the 'risk', 'needs' and 'responsivity' principles of offender classification for treatment. Emphasis is placed on the requirement for addressing the needs of Indigenous juvenile offenders with an ID.     

Informal Role Expansion in Australian Mental Health Nursing

PURPOSE.  This study aims to determine the extent to which community mental health nurses are currently practicing beyond the traditional scope of nursing practice .
DESIGN AND METHODS.  A self-administered questionnaire was distributed to community mental health nurses in Victoria, Australia.
FINDINGS.  The majority of participants reported routine involvement in practices that would normally be considered beyond the scope of nursing practice, such as prescribing, ordering diagnostic tests, and referral to specialists.
PRACTICE IMPLICATIONS.  The extent to which the current mental health service system is dependent upon nurses transgressing professional and legal boundaries warrants further study. Psychiatrists and community mental health nurses need to work collaboratively to understand their respective knowledge and skills and to be clear about how they take responsibility for client care.     

Characterisation of user-defined health status in older adults with intellectual disabilities

Background   Older adults with Intellectual Disabilities (ID) have an excess disease burden that standard health assessments are designed to detect. Older adults with ID have a broader concept of health with dimensions of well being in addition to absence of disease in line with the World Health Organization's health definition. We sought to characterise user-defined health status in a sample of older adults with ID.
Methods   We administered a user-led health assessment to 57 adults with ID aged 40 years and over. Cluster analysis on user-defined health themes of participation, nutrition and hygiene/self-care identified clear separation of participants into a healthier and a less healthy group.
Results   Disease burden ( P  = 0.002) and medication use ( P  = 0.003) were greater in the less healthy group. The healthier group were taller ( P  = 0.005), stronger ( P  = 0.005) and had better vision ( P  < 0.001) than the less healthy group. Constipation ( P  = 0.014), urinary incontinence ( P  < 0.001) and faecal incontinence ( P  < 0.001) were commoner in the less healthy group. There were few significant differences between health groups on the majority of standard physical-examination items.
Conclusions   There is considerable overlap between user-defined health and that assessed by standard instruments. In addition, user-defined health encompasses aspects of physical fitness not captured by traditional disease-based health models.     

Suicidal Behaviour Among Youth in Five Public Sectors of Care

Background:  Rates of suicidal ideation and behaviours as well as associated risk factors are examined among youth recruited from five public sectors of care (i.e. child welfare, juvenile justice, special education services, alcohol and drug services, and county mental health).
Method:  1057 youth (ages 11–18) completed a diagnostic interview and questionnaires assessing relevant suicide risk factors at baseline and 2-year follow-up.
Results:  While past year thoughts about death (28%) and talking about killing oneself (7.1%) were comparable to community norms, rates of lifetime suicide attempts (20.1%) were considerably higher in this sample. However, youth in the special education sector reported significantly more suicidal thoughts and behaviours relative to the other sectors. In multivariate analyses, longitudinal predictors of suicidality included major depression, female gender, and involvement in the special education sector.
Conclusions:  Efforts to implement screening and evidence based interventions for depression and suicide in the public sector, particularly special education services, are necessary.     

Clinical outcomes of a specialised inpatient unit for adults with mild to severe intellectual disability and mental illness

Background   Limitations of general psychiatric services have led to the development of specialised psychiatric programmes for patients with intellectual disability (ID) and mental health needs. Few studies have examined treatment outcomes of specialised inpatient units, and no studies have explored how the effects of intervention may differ for individuals at varying levels of cognitive ability. The present study examined clinical outcomes of inpatients with mild ID in contrast to inpatients with moderate to severe ID within the same service.
Method   Thirty-three patients (17 with mild ID and 16 with moderate to severe ID) discharged between 2006 and 2008 from a specialised inpatient unit in Canada for adults with ID and mental illness were studied. In addition to examining change in scores on clinical measures, outcomes with regard to length of stay, diagnostic change, residential change and re-admission to hospital were explored.
Results   Both groups demonstrated clinical improvement from admission to discharge. However, only patients with mild ID demonstrated improvements on the Global Assessment of Functioning.
Conclusions   This study is one of the first to consider outcomes of higher and lower functioning individuals with ID on a specialised inpatient unit. Results suggest that outcomes may be different for these groups, and some clinical measures may be more sensitive to changes in patients with more severe disabilities.