Specialist Versus Generic Models of Psychiatry Training and Service Provision for People with Intellectual Disabilities

Background Models of service provision and professional training differ between countries. This study aims to investigate a specialist intellectual disabilities model and a generic mental health model, specifically comparing psychiatrists’ knowledge and competencies, and service quality and accessibility in meeting the mental health needs of people with intellectual disabilities. Method Data were collected from consultant and trainee psychiatrists within a specialist intellectual disabilities model (UK) and a generic mental health model (Australia). Results The sample sizes were 294 (UK) and 205 (Australia). Statistically significant differences were found, with UK participants having positive views about the specialist intellectual disabilities service model they worked within, demonstrating flexible and accessible working practices and service provision, responsive to the range of mental health needs of the population with intellectual disabilities, and providing a wide range of treatments and supports. The UK participants were knowledgeable, well trained and confident in their work. They wanted to work with people with intellectual disabilities. In all of these areas, the converse was found from the Australian generic mental health service model. Conclusions The specialist intellectual disabilities model of service provision and training has advantages over the generic mental health model.     

Mental Health Needs in Adolescents with Intellectual Disabilities: Cross‐Sectional Survey of a Service Sample

Background Little research has been conducted on the mental health needs of adolescents with intellectual disability, despite the severity and rates of such needs being high throughout childhood and in adulthood. We have investigated the prevalence and predictors of mental health needs and service use in adolescents with intellectual disabilities. Materials and Methods Service‐based sample (n = 75) in one catchment area. Individual assessments were carried out. The main outcome was the presence of mental health needs measured by the Developmental Behaviour Checklist. Results Prevalence of mental health needs increased from 51% as reported by parents to 67% as judged by clinical interviews. Caseness was associated with low adaptive functioning, diagnosis of autism and family history of mental illness. High scores on parent reports of participant mental ill‐health showed negative correlations with adaptive functioning scores. Most individuals were in receipt of social and health care. Half of the participants had sought help for mental health needs. Almost half of those receiving medication were on psychiatric medication. Conclusions Adolescents with intellectual disabilities may have considerable mental health problems which are functionally impairing yet frequently unidentified and hence untreated. Identification of those at risk and undertaking of a comprehensive needs assessment are essential to maximize potential and quality of life and to reduce further deficits and social exclusion.     

The Prevalence,Incidence, and Factors Predictive of Mental Ill‐Health in Adults with Profound Intellectual Disabilities

Background There are no previous studies of the prevalence and incidence of mental ill‐health in adults with profound intellectual disabilities. Method In this population‐based prospective cohort study, adults with profound intellectual disabilities underwent psychiatric assessment (n = 184), with further assessment after 2 years (n = 131). Results Point prevalence of mental ill‐health was 52.2% by clinical, 45.1% by Diagnostic Criteria for Psychiatric Disorders for use with Adults with Learning Disabilities (DC‐LD), 10.9% by the ICD‐10 Classification of Mental and Behavioural Disorders Diagnostic Criteria for Research (1993) (DCR‐ICD‐10) and 11.4% by Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (2004) (DSM‐IV‐TR) criteria. The highest 2‐year incidence rates were for affective disorders (6.1%) and problem behaviours (6.1%). Type of accommodation/support, and the number of preceding life events were predictive of incidents of mental ill‐health, but age, gender, living in areas of greatest deprivation, and having special communication needs were not. Conclusions Mental ill‐health is more commonly experienced by adults with profound intellectual disabilities than the general population, or other adults with intellectual disabilities, warranting proactive supports/interventions. Predictive factors differ, compared with the general population.     

Nurses' knowledge of constipation in people with learning disabilities

Constipation is considered a preventable problem in health care, yet this condition has received little attention in terms of preventive interventions and management in people with intellectual disabilities. While constipation is acknowledged as an important general health issue for this population group, symptoms are frequently masked as the intellectual disability often takes precedence, resulting in diagnostic overshadowing. Underestimations of the condition may result in delays in recognition and treatment which are further compounded by an inability among people with an intellectual disability to express discomfort verbally. Long-term, untreated constipation can have serious and potentially life-threatening consequences if symptoms go unrecognized or are not treated promptly. Therefore, all registered nurses treating people with intellectual disabilities must possess an in-depth knowledge of the condition to be able to prevent and manage this common condition.     

Inclusive nursing care for people with intellectual disabilities using urology services

The need to address the health needs and provide equity of access to health care for people with intellectual disabilities has been highlighted nationally within the UK, as well as internationally. Despite a similar likelihood (if not an increased likelihood) of urological problems among people with intellectual disabilities, this topic appears to have received limited attention within the wider nursing or the specific intellectual disability literature. This paper considers the potential challenges that may be encountered in seeking to provide care and support a person with intellectual disabilities who may require the support of a urology nurse and provides some suggestions for practical actions to respond effectively.     

Behavioural sleep problems in children and adults with intellectual disabilities: An integrative literature review

Background

People with intellectual disabilities are more likely to experience sleep problems, which can affect quality of life, physical health, mental health and well-being.

Methods

An integrative literature review was conducted to investigate what is known about behavioural sleep disturbances in people with an intellectual disability. The search used the following databases: Scopus, PsycInfo and Cinahl, to find papers published since 2015.

Results

Within intellectual disability research, sleep appears as a common issue due to its high prevalence, negative relationships with an individual's physical and mental health, their quality of life, and impact of sleep problems on family or carers. The growing evidence base appears to support the use of behavioural, lifestyle and pharmacological interventions to improve sleep in people with an intellectual disability.

Conclusion

A wide array of literature provides evidence that people with intellectual disabilities are affected by and need support with their sleep.     

Attitudes of Catholic religious orders towards children and adults with an intellectual disability in postcolonial Ireland

SWEENEY J. Nursing Inquiry 2010; 17 : 95–110
Attitudes of Catholic religious orders towards children and adults with an intellectual disability in postcolonial Ireland The purpose of this paper is to examine the intersecting roles of Catholic religious orders and psychiatrists in the development of residential care for people with an intellectual disability in Ireland during the fifty‐year period after political autonomy from the UK in 1922. The context is the postcolonial development of the country and the crucial role played by the Catholic Church through several of its religious orders in developing and staffing intellectual disability services. The paper will consider the divergent positions of church and psychiatry in the foundation and contemporary position of what was originally known as the care of people with a mental handicap nursing in the 1960s. The development of this form of nursing during the mid‐twentieth century can be seen as part of a wider postcolonial response to health and social care by the newly independent Irish state. The author argues that intellectual disability nursing in Ireland has been nuanced by association with the nation’s struggle for self‐determination from colonial oppression through adoption of a religious identity. This conflation of education and social care combined with a specific form of Catholic nursing has left an enduring legacy on the service provision to people with an intellectual disability in contemporary Ireland.     

Emergency Psychiatric Services for Individuals with Intellectual Disabilities: Caregivers’ Perspectives

Background Strains on the mental health system and inaccessible services for individuals with intellectual disabilities (ID) often force caregivers to bring individuals with ID to the emergency department (ED) when in psychiatric crisis. The purpose of this study was to understand the experience of caregivers and adults with ID and mental health issues, according to caregivers’ perspectives. Method Focus groups were conducted with one group of unpaid caregivers (i.e. family members) and two groups of paid caregivers (i.e. staff from community agencies) from Ontario, Canada. Results Caregivers identified a number of issues centering on a lack of services, on respect, on knowledge and on expertise. Diagnostic overshadowing and overmedication were also prevalent concerns. Conclusions Input from caregivers points to deficiencies in the system that lead them to use the ED when other options have been exhausted. A number of recommendations can be implemented to improve the emergency psychiatric care of adults with ID in the ED.     

Comparison of the WAIS‐III and WISC‐IV in 16‐Year‐Old Special Education Students

Background Previous research with earlier versions of the WISC and WAIS has demonstrated that when administered to people who have intellectual disabilities, the WAIS produced higher IQ scores than the WISC. The aim of this study was to examine whether these differences still exist. A comparison of the Wechsler Adult Intelligence Scale – Third Edition (WAIS‐III) with the Wechsler Intelligence Scale for Children – Fourth Edition (WISC‐IV) was conducted with individuals who were 16 years old and receiving special education. Materials and Methods All participants completed the WAIS‐III (UK) and WISC‐IV (UK). The order of administration was counterbalanced; the mean Full Scale IQ and Index scores on the WAIS‐III and WISC‐IV were compared. Results The WAIS‐III mean Full Scale IQ was 11.82 points higher than the mean Full Scale IQ score on the WISC‐IV. Significant differences were also found between the Verbal Comprehension Index, Perceptual Reasoning/Organization Index and Processing Speed Index on the WAIS‐III and WISC‐IV, all with the WAIS‐III scoring higher. Conclusions The findings suggest that the WAIS‐III produces higher scores than the WISC‐IV in people with intellectual disabilities. This has implications for definitions of intellectual disability and suggests that Psychologists should be cautious when interpreting and reporting IQ scores on the WAIS‐III and WISC‐IV.     

The UK psychiatrists' experience of rationalising antipsychotics in adults with intellectual disabilities: A qualitative data analysis of free-text questionnaire responses

Background

Overprescribing of off-licence psychotropic medications, particularly antipsychotics, for challenging behaviours in people with intellectual disabilities without a psychiatric disorder is a significant public health concern. In the United Kingdom, the National Health Service England launched an initiative in 2016, ‘STopping Over-Medication of People with learning disabilities, autism or both (STOMP)’, to address this concern. STOMP is supposed to encourage psychiatrists in the United Kingdom and elsewhere to rationalise psychotropic medication use in people with intellectual disabilities. The current study aims to gather UK psychiatrists' views and experience of implementing the STOMP initiative.

Methods

An online questionnaire was sent to all UK psychiatrists working in the field of intellectual disabilities (estimated 225). Two open-ended questions allowed participants to write comments in response to these questions in the free text boxes. One question asked about the challenges psychiatrists faced locally to implement STOMP, and the other asked for examples of successes and positive experiences from the process. The free text data were analysed using a qualitative method with the help of the NVivo 12 plus software.

Results

Eighty-eight (estimated 39%) psychiatrists returned the completed questionnaire. The qualitative analysis of free-text data has shown variation within services in the experience and views of the psychiatrists. In areas with good support for STOMP implementation provided through adequate resources, psychiatrists reported satisfaction in the process with successful antipsychotic rationalisation, better local multi-disciplinary and multi-agency working, and increased awareness of STOMP issues among the stakeholders such as people with intellectual disabilities and their caregivers and multidisciplinary teams, and improved quality of life caused by reduced medication-related adverse events in people with intellectual disabilities. However, where resource utilisation is not optimum, psychiatrists seemed dissatisfied with the process with little success in medication rationalisation.

Conclusions

Whereas some psychiatrists are successful and enthusiastic about rationalising antipsychotics, others still face barriers and challenges. Much work is needed to achieve a uniformly positive outcome throughout the United Kingdom.     

A SURVEY OF INTELLECTUAL DISABILITIES AMONGST MEN ON REMAND IN PRISON

Men detained in a South London prison on remand were screened for intellectual disabilities (mental handicap) over a three-month period. Of 157 men screened, 33 reported having intellectual disabilities. Twenty-one of these completed the General Health Questionnaire (GHQ) and were tested for IQ (on the WAIS-R), for reading and numeracy (on the British Ability Scales). An equal number of men were selected for the control group, on a ‘next man in’ basis, and they were assessed in an identical way. None of the index men had an IQ in the intellectual disabilities (mental handicap) range but the mean Verbal IQ, mean Full Scale IQ, mean reading age and mean numeracy age were all significantly lower in the index group than in the control group. Moreover, the index group had significantly higher scores on the GHQ and often had a recent history of mental illness or psychiatric hospital admission. It is concluded that men with intellectual disabilities were not over-represented in prison but that there were a number of men close to the disability range who were psychologically very vulnerable.     

Learning disabilities within mental health services: are we adequately preparing nurses for the future?

Current government policy dictates that where possible patients who have learning disabilities should be cared for within the framework of ordinary generic national health services, with specialist provision kept to a minimum. The mental health care of this client group may be problematic and diagnostic overshadowing can occur because of complex physical, emotional and behavioural issues. If the government agenda is to be followed, this will have an impact on both the pre- and post-registration education of mental health nurses and therefore this must be addressed by the nursing regulatory bodies. There is also an argument for people who have a learning disability in addition to mental health problems to be considered a specialist group within generic mental health services as are other specific groups because of the complexity of their conditions.     

Indexing Psychological Distress in People with an Intellectual Disability: Use of the Symptom Checklist-90-R

The development, usage and clinical utility of psychometric tests for the assessment of mental health problems experienced by people with an intellectual disability has only recently become a clinical issue and subject of methodological debate. In general there are a paucity of measures, little consideration for reliability/validity issues and lack of intellectual disability group norms. In this paper we describe the application of the Symptom Checklist (SCL-90-R) with people with intellectual disabilities. Results suggest that the measure has high reliability and validity with this population and that the SCL-90-R effectively indexes mental health concerns. Significant differences were observed across symptom dimensions and global indices between community and clinical groups. Preliminary norms on the SCL-90-R for intellectually disabled people are provided. The data are discussed in terms of the potential for the SCL-90-R to be used as an outcome measure for intellectually disabled people with mental health problems regardless of the mode of intervention. Guidance is provided for applying the measure with intellectually disabled individuals.     

Age Recognition in Adults with Intellectual Disabilities: a Literature Review and an Exploratory Study

The ability of children to classify accurately their own ages and the ages of others has been the subject of very limited research. However, the literature is largely in agreement on there being progressive increases in skill with chronological age, although there is disagreement on the age at which this ability becomes well developed. The processes look similar in the field of intellectual disabilities, although this area is extremely under‐researched. Key factors may include age, the amount of time spent in institutions (e.g. long‐term hospitals for people with intellectual disabilities), developmental level and IQ. The present paper provides a review of the relevant literature and an exploratory study investigating the age recognition of self and colleagues in a group of 20 adults with intellectual disability, some from within what has been a major hospital for people with intellectual disabilities and some from the wider community. Measures of age recognition using photographs, as well as standardized measures of intellectual ability and social adaptive behaviour, were administered, and correlations were found between the ability to recognize age in others and developmental age, and also IQ. Success on the task of age discrimination appears to be more likely if the IQ of the individual is around 60–65 or above, and if the person shows social adaptive behaviour equivalent to 8 or 9 years of age and over. Also included in the study was a task in which only the discrimination of whether the photographs were of adults or children was required, and this proved to be a simpler process for the participants. The present study also demonstrates some of the discriminative stimuli used by adults with intellectual disabilities to ascertain the approximate age of a person.     

Overcoming ignorance and stigma relating to intellectual disability in healthcare: a potential solution

while a.e . & clark l.l. (2009) Journal of Nursing Management  18, 166–172
Overcoming ignorance and stigma relating to intellectual disability in healthcare: a potential solution Aim To propose a strategy for overcoming stigma and discrimination against people with intellectual disabilities within healthcare. Background Evidence of poor healthcare for those with intellectual disabilities resulted in an independent inquiry. The subsequent report has charged healthcare organizations to address current organizational failings. Evaluation The origins of discriminatory practices in health services and the evidence of persisting poor care and stigmatization of this patient group despite UK Government policy are set out. Key issue The stigmatization and resulting discrimination of people with intellectual disabilities persists. Conclusion In addition to investment in core training, organizational change is needed to bring about change and a reduction in health inequality. Implications for nursing management The development of a new framework for nursing is recommended with leadership at all levels of healthcare so that people with intellectual disabilities and their families can expect to receive high quality care in all healthcare settings.     

A Preliminary Investigation into the Utility of the Adult Behavior Checklist in the Assessment of Psychopathology in People with Low IQ

Background Achenbach & Rescorla (2003) recently developed the Adult Behavior Checklist (ABCL) to assess psychopathology in the general population. The ABCL should be completed by a proxy informant. The use of proxy informants, instead of self‐reporting, makes the ABCL potentially suitable for the assessment of psychopathology in adults with intellectual disability. The aim of the present study was to examine reliability and validity of the ABCL in 124 adults with mild intellectual disability or low IQ, and severe challenging behaviour referred for residential treatment. Methods The ABCL was completed by two independent informants to assess inter‐rater reliability. To examine the validity of the ABCL, its relationship with three measures of functioning was assessed. Furthermore, association between scales of the ABCL and DSM‐IV axis I disorders was examined. Results The ABCL was reliable in terms of internal consistency of its scales, and inter‐rater reliability. Relationships between clusters of axis I DSM‐IV disorders and scales of the ABCL were found as expected. Moreover, ABCL scales predicted different measures of functioning. Conclusions The ABCL appears to be a reliable and valid measure to assess psychopathology in persons with mild intellectual disabilities or low IQ, admitted for treatment in facilities for adults with mild intellectual disability and severe challenging behaviour.     

Functioning and disability associated with mental disorders: the evolution since ICIDH

The International Mental Health Task Force participated actively from the outset of the revision of the ICIDH and development of the ICF. The Task Force was responsible for development of all aspects of functioning and disability associated with mental disorders. Building upon knowledge gained since the publication of the ICIDH, it had unique responsibility for development of the ICF chapter on mental functioning. It was also responsible to assure the ICF section on activities and participation integrated and reflected the functioning and disability associated with mental disorders without the redundancy of ICIDH. As context to the revision, the article describes the relationship of diagnostic classifications of mental disorders with disability, and analyses the mental disorder aspects of impairments and disabilities in the ICIDH. Membership in the Task Force represented diversity in geographical, cultural, professional, and personal perspectives on disabilities. This diverse acumen was focused on a range of activities that both specified the unique aspects of functioning and disability associated with mental disorders and assured inclusion of the mental health perspective on the domains of functioning and disability common to physical conditions. Finally, the article notes four current applications of the ICF that are inclusive of the mental health perspective.     

Functioning and disability associated with mental disorders: the evolution since ICIDH

The International Mental Health Task Force participated actively from the outset of the revision of the ICIDH and development of the ICF. The Task Force was responsible for development of all aspects of functioning and disability associated with mental disorders. Building upon knowledge gained since the publication of the ICIDH, it had unique responsibility for development of the ICF chapter on mental functioning. It was also responsible to assure the ICF section on activities and participation integrated and reflected the functioning and disability associated with mental disorders without the redundancy of ICIDH. As context to the revision, the article describes the relationship of diagnostic classifications of mental disorders with disability, and analyses the mental disorder aspects of impairments and disabilities in the ICIDH. Membership in the Task Force represented diversity in geographical, cultural, professional, and personal perspectives on disabilities. This diverse acumen was focused on a range of activities that both specified the unique aspects of functioning and disability associated with mental disorders and assured inclusion of the mental health perspective on the domains of functioning and disability common to physical conditions. Finally, the article notes four current applications of the ICF that are inclusive of the mental health perspective.     

Toward mainstream nursing roles specialising in the care of people with intellectual and developmental disability

ProblemThere is international evidence that people with intellectual and developmental disabilities experience barriers to health care and inequalities in health. Nurses are well placed to assist in reducing these inequalities, but countries differ in the way they prepare nurses to meet the needs of people with intellectual and developmental disabilities. Concerns have been expressed regarding a lack of appropriate educational preparation and the impact that this has on the health of this population.AimThis discussion paper describes and explores the model of specialist nursing in Wales, UK with a specific focus on the role of community nurses and the hospital liaison nurse. This is then compared with the current situation in Australia which, it is argued, is fragmented and uncoordinated.DiscussionAlthough some promising developments are noted, it is argued that to effectively identify and meet the health needs of Australians with intellectual and developmental disabilities, a transformation is required to the educational preparation and recruitment of nurses.ConclusionModels of care that are widespread in Wales, UK, offer insights into how mainstream health services in Australia can accommodate specialist intellectual and developmental disability roles for nurses.     

Cross‐Cultural Validation of a Measure of Felt Stigma in People with Intellectual Disabilities

Background One trade‐off for increased independence of adults with intellectual disabilities in developing countries is that they may find themselves more exposed to the negative perceptions held by the general population regarding the mentally ill and disabled. The aim of this study was to adapt and translate a tool to measure felt stigma in people with intellectual disabilities designed in the United Kingdom (UK) to make it culturally viable, and to determine its reliability and validity in the multi‐ethnic and multilingual context of South Africa (SA) and to compare the item responses and factor structures of the tool between the UK and SA. Methods We translated the tool into local languages and refined it by conducting focus groups and pilot studies with professionals and adults with intellectual disabilities, after which test–retest reliability, factor analysis and internal consistency were calculated. Results Participants were from three different population groups: Afrikaans (n = 71; 37%), English (n = 67; 35%) and Xhosa (n = 53; 28%), who had mild (n = 106; 56%) or moderate intellectual disabilities (n = 85; 44%). 98 (51%) were re‐interviewed. The resulting international version of the perceived stigma measure consisted of 10 questions with good test–retest reliability (κ ranging from 0.41 to 0.59) and a similar factor structure to the UK version, despite including a different set of questions. Conclusions There is evidence for the validity of felt stigma ratings reported by adults with intellectual disabilities, despite different cultural and health service contexts.