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The prevalence of mental disorders plays an important role in identifying the state of mental health of the community and estimate the required facilities at any time.
Therefore, the purpose of this study was to investigate the prevalence of psychological disorders in caregivers of children with intellectual disabilities and motor disabilities in Shiraz.
The research was descriptive and cross-sectional survey. The statistical population consisted of all mothers of children with disabilities who were admitted to welfare centers and clinics of Shiraz in 2019. Of these families, 35 mothers with children with intellectual disability and 35 mothers with children with motor disability were selected as the sample group. SCL-90-R (1976) was used to collect of data. For analyze the data, MANOVA test was used.
The results of this study showed that the most common psychological disorders in caregivers of children with intellectual disability were aggression (hostility), hypersensitivity to interpersonal relationships, anxiety and depression, and in caregivers of children with motor disabilities were physical complaints, sensitivity to interpersonal relationships, paranoid thoughts and anxiety.
According to the findings of this research, it can be concluded that caregivers of children with special needs in terms of mental health are not in a favorable situation, which is due to the lack of proper adaptation with the disability of their child and the failure to meet their needs.
The International Classification of Functioning, Disability and Health (ICF) provides a framework rooted in patient-centered care and the biopsychosocial model that facilitates a comprehensive description of a person’s health and their level of societal participation. The importance of the ICF for assessing the needs of individuals with mental health problems (MHP) and intellectual disabilities (ID) is growing, especially in the social medicine.
To describe the benefits and limitations of the ICF in clinical practice, pertaining to the assessment of healthcare needs and societal participation in persons with MHP and ID.
Comprehensive literature search in medical databases using the Keywords: ICF, mental health, intellectual disabilities, social and occupational participation.
ICF-based instruments such as the Mini-ICF-APP, with which impairments and competencies in social and occupational participation can be described, are playing an increasingly important role in healthcare and rehabilitation. In Germany, for example, in accordance with the Federal Participation Act, the entitlement to disability support benefits is assessed using ICF-based instruments, which therefore play a decisive role in social medical care.
The functional descriptions of the ICF provide the opportunity for a standardized, yet individualized assessment of medical needs, general health and societal participation, thus facilitating the provision of a comprehensive package of care and support for people with disabilities. ICF-Core Sets and the Mini-ICF-APP are effective tools to describe level of function. It would be clinically valuable to further develop these instruments for use in persons with ID and MHP in the field of social medicine.
The diagnosis of intellectual disability (ID) alone does not predict the level of required care, functional outcomes or limitations in social and occupational participation. The International Classification of Functioning, Disability and Health (ICF) is a taxonomy of health and health-related domains. It provides a common language and framework for describing the level of functioning of a person within their unique environment. Furthermore, it helps to describe health problems of a person in line with the International Classification of Diseases (ICD-10).
Introducing the ICF taxonomy exemplary in the care of individuals with ID and mental health problems in Germany.
Comparison of the ICF’s comprehensive multidisciplinary approach to assess an individual’s level of functioning and care in relation to assessing the needs of persons with ID based on clinical experience.
The ICF provides a standardised assessment instrument to determine individual functional needs for the care, rehabilitation and societal integration of individuals with disabilities, which is a statutory requirement in many European countries.
Using the ICF for the assessment and management of patients with chronic health conditions, mental disorders and ID can help to accurately define individual therapeutic goals and monitor functional outcomes. A comprehensive narrative description of the patient’s functional status and clinical needs is comparatively time-consuming, requires greater effort by the assessing clinician and carries a higher risk of omission of pertinent functional domains; furthermore, a single ICF item confers little additional benefit to the patient in terms of the treatment or care they subsequently receive.
This is a systematic review of systematic reviews of secondary health conditions, health promotion interventions, and employment in people with intellectual disabilities. Articles were included if they reported a systematic review of health and employment, secondary health conditions, and health promotion interventions for people with intellectual disabilities. The methodological quality of the included reviews was reviewed using the A MeaSurement Tool to Assess systematic Reviews quality rating system, a measurement tool to assess systematic reviews. Twenty-five systematic reviews were included. There was evidence that people with intellectual disabilities (ID) were at elevated risk for secondary health conditions, health promotion interventions can improve physical and mental health conditions, and employment is associated with better health-related quality of life. Health promotion intervention to help people with ID engage in health promoting behaviors can improve health and their ability to find and maintain employment.
Psychiatric disorders, such as depression and anxiety, are commonly associated with epilepsy in the general population, but the relationship between psychiatric disorders and epilepsy among adults with intellectual disabilities is unclear.
To conduct a systematic review and meta-analysis to assess whether epilepsy is associated with an increased rate of psychiatric disorders in adults with intellectual disabilities.
We included literature published between 1985 and 2020 from four databases, and hand-searched six relevant journals. We assessed risk of bias by using SIGN 50 and the Cochrane risk of bias tool. Several meta-analyses were carried out.
We included 29 papers involving data on 9594 adults with intellectual disabilities, 3180 of whom had epilepsy and 6414 did not. Of the 11 controlled studies that compared the overall rate of psychiatric disorders between the epilepsy and non-epilepsy groups, seven did not show any significant inter-group difference. Meta-analysis was possible on pooled data from seven controlled studies, which did not show any significant inter-group difference in the overall rate of psychiatric disorders. The rates of psychotic disorders, depressive disorders and anxiety disorders were significantly higher in the non-epilepsy control groups compared with the epilepsy group, with effect sizes of 0.29, 0.47 and 0.58, respectively. Epilepsy-related factors did not show any definite association with psychiatric disorders.
It is difficult to pool data from such heterogeneous studies and draw any definitive conclusion because most studies lacked an appropriately matched control group, which will be required for future studies.
People with severe mental illness and intellectual disabilities are overrepresented in the criminal justice system worldwide and this is also the case in Ireland. Following Ireland’s ratification of the United Nations’ Convention on the Rights of People with Disabilities in 2018, there has been an increasing emphasis on ensuring access to justice for people with disabilities as in Article 13. For people with mental health and intellectual disabilities, this requires a multi-agency approach and a useful point of intervention may be at the police custody stage. Medicine has a key role to play both in advocacy and in practice. We suggest a functional approach to assessment, in practice, and list key considerations for doctors attending police custody suites. Improved training opportunities and greater resources are needed for general practitioners and psychiatrists who attend police custody suites to help fulfill this role.
The policy background is provided that underpins the assessment of needs in intellectual disabilities mental health services. Developments since the publication of the 1st edition of the CANDID are provided along with an updated list of measures and instruments used to assess needs in this population.
The Camberwell Assessment of Need for Adults with Developmental and Intellectual Disabilities (CANDID) is introduced. It was developed at the Institute of Psychiatry, Psychology and Neuroscience, King’s College London in 1999, and published in book form in 2003. It was developed by modification of the Camberwell Assessment of Need (CAN), the most widely used needs assessment approach for people with severe mental health problems. In addition to CANDID, a number of other variants of CAN have been developed including needs assessment for forensic patients, for mothers and pregnant women, for older adults and for people in disaster and relief situations. In this 2nd edition, the need rating for the presence or absence of need and met or unmet needs is discussed. In addition, a need rating algorithm has been introduced. Both changes are in line with changes in the 2nd edition CAN. Moreover, the terminology in this 2nd edition has changed to reflect terminology used in contemporary intellectual disabilities services.
The Camberwell Assessment of Need for adults with Developmental and Intellectual Disabilities (CANDID) is a widely used tool for the assessment of health and social needs of people with intellectual disabilities and mental health problems. It uses the assessment approach adopted by CAN, the world's leading mental health needs assessment measure. Two versions of the CANDID are available: CANDID-S (short version) and CANDID-R (research version). Both versions are aimed at researchers and practitioners working with people with intellectual disabilities, and are suitable for clinical use in community and hospital-based services. Fully updated based on current policy, practice and terminology, this second edition introduces a more intuitive need rating system and an accessible rating algorithm. Guidance on how to use the measures is provided, as well as an overview of research developments since the first edition. The assessment forms are freely available to download from the CAN website (researchintorecovery.com/can) and cambridge.org.
Psychotropics are overprescribed for adults with intellectual disabilities; there are few studies in children and young people.
To investigate antipsychotic and antidepressant prescribing in children and young people with and without intellectual disabilities, and prescribing trends.
Scotland's annual Pupil Census, which identifies pupils with and without intellectual disabilities, was record-linked to the Prescribing Information System. Antidepressant and antipsychotic data were extracted. Logistic regression was used to analyse prescribing between 2010 and 2013.
Of the 704 297 pupils, 16 142 (2.29%) had a record of intellectual disabilities. Antipsychotic and antidepressant use increased over time, and was higher in older pupils; antipsychotic use was higher in boys, and antidepressant use was higher in girls. Overall, antipsychotics were prescribed to 281 (1.74%) pupils with intellectual disabilities and 802 (0.12%) without (adjusted odds ratio 16.85, 95% CI 15.29–18.56). The higher use among those with intellectual disabilities fell each year (adjusted odds ratio 20.19 in 2010 v. 14.24 in 2013). Overall, 191 (1.18%) pupils with intellectual disabilities and 4561 (0.66%) without were prescribed antidepressants (adjusted odds ratio 2.28, 95% CI 2.03–2.56). The difference decreased each year (adjusted odds ratio 3.10 in 2010 v. 2.02 in 2013).
Significantly more pupils with intellectual disabilities are prescribed antipsychotics and antidepressants than are other pupils. Prescribing overall increased over time, but less so for pupils with intellectual disabilities; either they are not receiving the same treatment advances as other pupils, or possible overprescribing in the past is changing. More longitudinal data are required.
Previous systematic reviews showed no significant association between epilepsy and challenging behaviours in adults with intellectual disabilities.
To identify whether there is an association between epilepsy and challenging behaviour in adults with intellectual disabilities by carrying out a systematic review of published data. PROSPERO registration number: CRD42020178092.
We searched five databases and hand-searched six journals. Two authors independently screened titles, abstracts and full articles using a standardised eligibility checklist. Several meta-analyses were carried out.
The narrative analysis of data from 34 included articles (14 168 adults with intellectual disabilities, 4781 of whom also had epilepsy) showed no significant association between epilepsy and challenging behaviour. Meta-analysis was possible on data from 16 controlled studies. This showed no significant intergroup difference but after sensitivity analysis meta-analysis of 10 studies showed a significantly higher rate of overall challenging behaviour in the epilepsy group (effect size: 0.16) compared with the non-epilepsy group. Aggression and self-injurious behaviour both showed a statistically significant higher rate in the epilepsy group, with very small effect sizes (0.16 and 0.28 respectively). No significant intergroup difference was observed in the rate of stereotypy.
The findings are contradictory and must be interpreted with caution because of the difficulty in pooling data from varied studies, which is likely to introduce confounding. Where significant differences were found, effect sizes are small and may not be clinically significant, and there are major methodological flaws in the included studies, which should be addressed in future large-scale properly controlled studies.
A high proportion of adults with intellectual disabilities are prescribed off-licence antipsychotics in the absence of a psychiatric illness. The National Health Service in England launched an initiative in 2016, ‘Stopping over-medication of people with a learning disability [intellectual disability], autism or both’ (STOMP), to address this major public health concern.
To gain understanding from UK psychiatrists working with adults with intellectual disabilities on the successes and challenges of withdrawing antipsychotics for challenging behaviours.
An online questionnaire was sent to all UK psychiatrists working in the field of intellectual disability (estimated 225).
Half of the 88 respondents stated that they started withdrawing antipsychotics over 5 years ago and 52.3% stated that they are less likely to initiate an antipsychotic since the launch of STOMP. However, since then, 46.6% are prescribing other classes of psychotropic medication instead of antipsychotics for challenging behaviours, most frequently the antidepressants. Complete antipsychotic discontinuation in over 50% of patients treated with antipsychotics was achieved by only 4.5% of respondents (n = 4); 11.4% reported deterioration in challenging behaviours in over 50% of patients on withdrawal and the same proportion (11.4%) reported no deterioration. Only 32% of respondents made the diagnosis of psychiatric illness in all their patients themselves. Family and paid carers’ concern, lack of multi-agency and multidisciplinary input and unavailability of non-medical psychosocial intervention are key reported factors hampering the withdrawal attempt.
There is an urgent need to develop national guidelines to provide a framework for systematic psychotropic drug reviews and withdrawal where possible.
In Ontario, there are approximately 66,000 adults living with a diagnosis of intellectual and developmental disabilities (IDD). These individuals are nearly twice as likely to experience an injury compared to the general population. Falls are an important contributor to injuries in persons with IDD and in the general population, and are consistently found to be the leading cause of traumatic brain injury (TBI). There is currently no literature that quantitatively examines TBI among persons with IDD. The purpose of this study was to compare the risk of TBI for adults with and without IDD in Ontario over time and by demographic information.
Using administrative health databases, two main cohorts were identified: (1) adults with IDD, and (2) a random 10% sample of adults without IDD. Within each cohort, annual crude and adjusted incidence of TBI were calculated among unique individuals for each fiscal year from April 1, 2002 to March 31, 2017.
Over the 15-year study period, the average annual adjusted incidence of TBI was approximately 2.8 new cases per 1000 among Ontario adults with IDD, compared to approximately 1.53 per 1000 among those without IDD. In both cohorts, a higher proportion of TBI cases were younger (19–29 years) and male.
During the study period, persons with IDD experienced a significantly higher risk of TBI compared to the general population indicating the possibility, and need, for targeted TBI prevention.
Low levels of blood cholesterol have been found in some children with autism spectrum disorders (ASD). Psychotropic medications, commonly used by people with ASD and people with intellectual disabilities (ID) are frequently associated with altered metabolic profiles.
We aimed to compare metabolic features of adults with ASD or ID with those of a community-based population.
Subjects and methods
Data on blood fasting glucose (FBG), lipid profile, liver enzyme profile, TSH, BMI, medications and diagnoses of 80 adults with ASD, 77 adults with ID and 828 control adults were drawn from medical charts/database. Candidates that used glucose or lipid lowering medications were not included.
Total-cholesterol levels of people with ASD and ID were significantly lower than those of the controls (168.3 ± 32.78, 168.2 ± 32.91, 185.4 ± 40.49 mg/dL, respectively, P < 0.001) but after adjusting for gender, age and BMI and using Bonferroni correction, the significance was lost. Compared to controls, ASD and ID had significantly lower FBG (by –14.45 ± 1.81, –14.58 ± 1.54 mg/dl, respectively; P < 0.001 for both) and liver enzymes, despite using psychotropic medications.
Discussion and conclusion
In contrast to other psychiatric patients receiving similar medications, people with ASD and ID have unaltered lipid profiles and lower glucose and liver enzyme levels compared to a community-based population.
Approximately 18% of adults with intellectual disabilities living in the community display behaviours that challenge. Intensive support teams (ISTs) have been recommended to provide high-quality responsive care aimed at avoiding unnecessary admissions and reducing lengthy in-patient stays.
To identify and describe the geographical distribution and characteristics of ISTs, and to develop a typology of IST service models in England.
We undertook a national cross-sectional survey of 73 ISTs. A hierarchical cluster analysis was performed based on six prespecified grouping factors (mode of referrals, size of case-load, use of outcome measures, staff composition, hours of operation and setting of service). A simplified form of thematic analysis was used to explore free-text responses.
Cluster analysis identified two models of IST provision: (a) independent and (b) enhanced provision based around a community intellectual disability service. ISTs aspire to adopt person-centred care, mostly use the framework of positive behaviour support for behaviour that challenges, and report concerns about organisational and wider context issues.
This is the first study to examine the delivery of intensive support to people with intellectual disability and behaviour that challenges. A two-cluster model of ISTs was found to have statistical validity and clinical utility. The clinical heterogeneity indicates that further evaluation of these service models is needed to establish their clinical and cost-effectiveness.
The CRPD recognises that the measures that are appropriate for one category and severity of impairment may not be appropriate for others. This leads to substantial challenges for crafting regulatory options that support the most vulnerable people in the disability community, without holding back those who are more able, as well as not adopting models which enable those who can become highly competitive in the open labour market to do so at the expense of those who cannot. These policy challenges are being experienced when considering the right to work and the sheltered work debate. In 1955, the ILO issued a recommendation that called for the adoption of sheltered work arrangements for workers “who cannot be made fit for ordinary competitive employment … for those disabled persons who, for physical, psychological or geographical reasons, cannot travel regularly to and from work.” The regulation of ability diversity at work has substantially shifted over the last few decades and, as analysed in this chapter, there has been considerable pressure inside and outside the disability community to close sheltered workshops.
The Transforming Care national plan for England to develop community services and close hospital beds for people with intellectual disabilities and/or autism was published in October 2015 and is due to finish in March 2019. In this editorial the key plan objectives are evaluated, with particular reference to people with intellectual disabilities and/or autism who offend or are at risk of offending. The conclusion is that, to date, the plan has failed to meet its targets to reduce the number of in-patients with intellectual disabilities and/or autism and to invest in community services, and the number of patients in independent sector beds is increasing.
In its concluding observations for Cyprus, the UN Convention on the Rights of Persons with Disabilities (CRPD) Committee stated that it ‘is concerned about the insufficiency of legal provisions and accessible mechanisms to detect, report, prevent and combat all forms of violence’.1 This paper focuses on the independent monitoring obligation Article 16(3) CRPD places on states parties, and discusses the implications of the insufficient implementation of Article 16(3) as it affects adults with intellectual disabilities in Cyprus. It examines the existing monitoring frameworks, explains why they do not meet with Article 16(3) CRPD requirements and explores the relationship of the national human rights institutions (NHRIs) with Article 16(3). This paper enables understanding as to how, despite pre-existing monitoring frameworks in place, no independent monitoring action has been taken since the ratification of the CRPD. It argues that there is an immediate need for measures to achieve the implementation of Article 16(3) and makes recommendations for Cyprus and other states parties.
Background: It is well documented that mothers of children with intellectual disabilities experience elevated mental health difficulties and that these are exacerbated by the presence of challenging behaviour. However, comparatively little is known about the effect of specific coping strategies for managing such behaviours. Aims: This paper aims to document coping strategies used by mothers of children showing multiple forms of challenging behaviour and to explore how these relate to positive and negative maternal mental health. Method: Eighty-nine mothers of children with intellectual disabilities completed questionnaires assessing maternal mental health (Hospital Anxiety and Depression Scale, Positive and Negative Affect Scale) and maternal coping strategies (Brief COPE). Results: Coping strategies were not associated with child age or ability, but were associated with maternal mental health. Higher levels of problem- and positive-coping strategies were associated with higher positive affect. Although active-avoidance coping was the least frequently reported, it was associated with higher levels of negative affect and increased anxiety and depression. Moderated mediation analyses identified that active-avoidance coping mediated the relationship between the number of forms of challenging behaviour and poor maternal mental health, but only in mothers with lower levels of problem-focused coping. Conclusions: Active-avoidance coping is associated with poorer negative mental health in mothers of children with intellectual disabilities who have average to low levels of problem-focused coping. This is reflective of that noted within a range of populations, highlighting it as a key area for intervention.
There have been few published controlled studies of multi-component weight management programmes that include an energy deficit diet (EDD), for adults with intellectual disabilities and obesity. The objective of this study was to conduct a single-blind, cluster randomised controlled trial comparing a multi-component weight management programme to a health education programme. Participants were randomised to either TAKE 5, which included an EDD or Waist Winners Too (WWToo), based on health education principles. Outcomes measured at baseline, 6 months (after a weight loss phase) and 12 months (after a 6-month weight maintenance phase), by a researcher blinded to treatment allocation, included: weight; BMI; waist circumference; physical activity; sedentary behaviour and health-related quality of life. The recruitment strategy was effective with fifty participants successfully recruited. Both programmes were acceptable to adults with intellectual disabilities, evidenced by high retention rates (90 %). Exploratory efficacy analysis revealed that at 12 months there was a trend for more participants in TAKE 5 (50·0 %) to achieve a clinically important weight loss of 5–10 %, in comparison to WWToo (20·8 %) (OR 3·76; 95 % CI 0·92, 15·30; 0·064). This study found that a multi-component weight management programme that included an EDD, is feasible and an acceptable approach to weight loss when tailored to meet the needs of adults with intellectual disabilities and obesity.