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Interviews with fifteen teachers and educators delivering sex and relationships education to people with intellectual disabilities were conducted. The aim of the study was to investigate their experiences and views. Thematic analysis was used to look for patterns and themes in the verbatim transcripts. Three main themes were identified: challenges when delivering sex education, how to overcome these difficulties, and important topics for sex and relationships education. Implications for delivering sex and relationships education for people with intellectual disabilities and support needed for teachers are discussed. [ABSTRACT FROM AUTHOR]

Background: People with epilepsy (PWE) and people with intellectual disabilities (ID) both live shorter lives than the general population and both conditions increase the risk of death further. We aimed to measure associations between certain risk factors for death in PWE and ID. Methods: A retrospective case–control study was conducted in ten regions in England and Wales. Data were collected on PWE registered with secondary care ID and neurology services between 2017 and 2021. Prevalence rates of neurodevelopmental, psychiatric and medical diagnoses, seizure frequency, psychotropic and antiseizure medications (ASM) prescribed, and health activity (epilepsy reviews/risk assessments/care plans/compliance etc.) recorded were compared between the two groups. Results: 190 PWE and ID who died were compared with 910 living controls. People who died were less likely to have had an epilepsy risk assessment but had a greater prevalence of genetic conditions, older age, poor physical health, generalized tonic–clonic seizures, polypharmacy (not ASMs) and antipsychotic use. The multivariable logistic regression for risk of epilepsy-related death identified that age over 50, medical condition prevalence, antipsychotic medication use and the lack of an epilepsy review in the last 12 months as associated with increased risk of death. Reviews by psychiatrists in ID services was associated with a 72% reduction in the odds of death compared neurology services. Conclusions: Polypharmacy and use of antipsychotics may be associated with death but not ASMs. Greater and closer monitoring by creating capable health communities may reduce the risk of death. ID services maybe more likely to provide this holistic approach. [ABSTRACT FROM AUTHOR]

Purpose: The aim of this study was to investigate whether socio-demographic variables and physical disability (e.g. sensory impairment and mobility problems) were associated with self-reported stigma in people with intellectual disabilities (ID), and to examine whether age, sex and ethnicity modified the relationship between severity of intellectual disability and self-reported stigma.Methods: 229 participants with mild or moderate intellectual disabilities were recruited from 12 centres/sites in England from community intellectual disability services, day centres, supported housing schemes, voluntary organisations and invitation letters. Information on physical disability and socio-demographic variables were obtained using a structured data collection form. Self-reported stigma was measured using a validated questionnaire.Results: Age was associated with self-reported stigma, with older adults reporting more stigmatising experiences. Participants with moderate intellectual disabilities were more likely to report being treated differently such as being made fun of and being treated like children. Physical disability such as sensory, mobility and speech problems were not associated with self-reported stigma. Gender modified the relationship between severity of ID and self-reported stigma as participants who were male and had moderate ID were more likely to report stigma compared to females with moderate ID. Categorical age also modified the relationship between severity of ID and self-reported stigma as older participants who had moderate ID were more likely to report stigma compared to younger people with moderate ID.Conclusions: Older adults and those with moderate ID are potentially at higher risk of being targets of public stigma or are more likely to report stigma. Interventions to help individuals cope with stigma could be targeted to this group. [ABSTRACT FROM AUTHOR]

During transition to adulthood, emerging adulthood is characterized by continuous identity negotiations (Deaux and Perkins in Individual self, relational self, collective self. Psychology Press, Philadelphia, pp 299-313, ). However, for young people with intellectual disabilities (ID) the ID identity may overshadow the development of sexual identity (Burns in Clin Psychol Forum 137:137-139, ). This study conducted an in-depth exploration of four young people and four of their carers' experiences of the development of sexual identity alongside the ID identity. Interviews were analysed using interpretative phenomenological analysis. Young people struggled for an ' as normal as possible' adult identity, and to develop sexual identity as a ' normal' identity, in the context of the overshadowing ID identity. Despite believing they should be enabled to develop sexual identity as part of their transition to adulthood, young people faced many obstacles, including stigma related to their ID. Carers described their challenges in proactively supporting sexual identity education and exploration, due to concerns about risk. Equality and protection need not be either/or priorities; however, there remains need for considerable change in UK practice and policy if the principles of rights, independence, choice and inclusion (Department of Health in Valuing people now: a new three-year strategy for people with learning disabilities. The Stationary Office, London, ; Department of Health in Valuing people. The Stationery Office, London, ) are to be met in relation to sexual identity development in people with ID transitioning to adulthood. [ABSTRACT FROM AUTHOR]

Background: A quarter of people with Intellectual Disability (ID) in the UK have epilepsy compared to 0.6% in the general population and die much younger. Epilepsy is associated with two-fifths of all deaths with related polypharmacy and multi-morbidity. Epilepsy research on this population has been poor. This study describes real-world clinical and risk characteristics of a large cohort across England and Wales. Methods: A retrospective multi-centre cohort study was conducted. Information on seizure characteristics, ID severity, relevant co-morbidities, psychotropic and antiseizure drugs (ASDs), SUDEP and other risk factors was collected across a year. Results: Of 904 adults across 10 centres (male:female, 1.5:1), 320 (35%) had mild ID and 584 (65%) moderate-profound (M/P) ID. The mean age was 39.9 years (SD 15.0). Seizures were more frequent in M/P ID (p < 0.001). Over 50% had physical health co-morbidities, more in mild ID (p < 0.01). A third had psychiatric co-morbidity and a fifth had an underlying genetic disorder. Autism Spectrum Disorder was seen in over a third (37%). Participants were on median two ASDs and overall, five medications. Over quarter were on anti-psychotics. Over 90% had an epilepsy review in the past year but 25% did not have an epilepsy care plan, particularly those with mild ID (p < 0.001). Only 61% had a documented discussion of SUDEP, again less likely with mild ID or their care stakeholders (p < 0.001). Conclusions: Significant levels of multi-morbidity, polypharmacy and a lack of systemised approach to treatment and risk exist. Addressing these concerns is essential to reduce premature mortality. [ABSTRACT FROM AUTHOR]

The skills and social impairments of a total population of children with severe intellectual disabilities and/or autism from Camberwell, South London (Wing and Gould, 1978 and 1979), were assessed using the Handicaps, Behaviours and Skills schedule, and they were reassessed when they were adolescents and young adults (Shah, 1986). Changes in social impairment over time are presented here. As Shah (1986) had found with a smaller sample, social impairment remained relatively stable over time: on a simple “socially impaired” versus “sociable” dichotomous grouping, 93% did not change social group. Within the socially impaired group, there was a significant increase in impairment over time (i.e., people who were passive at Time 1, were aloof at Time 2). Implications of these results and predictions for a further follow-up study are discussed. [ABSTRACT FROM AUTHOR]

Limited research has examined methods to investigate the views, preferences and experiences of young people with autism and complex needs. The aim of this study, based at a specialist residential school in England, was to develop and pilot an innovative method for this purpose—a 'Talking Wall'—that was trialled over a 6-month period. Thematic analysis of data from focus groups and semi structured interviews with staff, combined with structured observations of pupils, resulted in three key themes: supporting the expression and evaluation of emotions that underlie preferences; recognising the impact of transitions; and the important role of familiar adults in interpreting communication bids. These positive, initial findings suggest the Talking Wall approach merits further development and evaluation. [ABSTRACT FROM AUTHOR]

Background: Two measures in the English Mental Health Act allow requirements to be imposed upon patients living in the community. These are Guardianship (Section 7) and Supervised Discharge (Section 25A).Aims: The paper aims to compare patients with mental illnesses, made subject to Guardianship or Supervised Discharge.Method: Data on patient characteristics, impairment, needs and interventions were collected from keyworkers in a random national sample of Trusts and local authorities. Ratings were obtained on standardised measures of disability, impairment and needs.Results: Patients placed on Supervised Discharge were more likely to have problems of treatment compliance and drug misuse, whilst those on Guardianship were more likely to have problems of social welfare and higher ratings of disability and impairment. Supervised Discharge has a higher proportion of African-Caribbean patients. Interventions delivered are rated as effective for both measures.Conclusions: Legal changes proposed in England include a single power for supervision in the community. This should not mean a focus on risk management to the neglect of social welfare interventions. [ABSTRACT FROM AUTHOR]

Diagnosing Autism Spectrum Disorders (ASD) is important throughout the lifespan. The objective was to investigate the transcultural diagnostic validity of the Social Communication Questionnaire (SCQ) in a clinical sample of 451 adults with Intellectual Developmental Disorder (IDD) with and without ASD in Germany, the U.S.A. and Great Britain. Variables associated with higher SCQ sum-scores were higher levels of IDD, male gender, a diagnosis of ASD and the study site (Germany > U.S.A > G.B.). An ROC analysis revealed a cut-score of 13, which resulted in a sensitivity of 0.87 and a specificity of 0.58. It is recommended to adjust the cut-score according to level of IDD and gender. Further research is needed to align diagnostic assignment of ASD across different sites and countries. [ABSTRACT FROM AUTHOR]

We employed a clinical sample of young children with ASD, with and without intellectual disability, to determine the rate and type of psychiatric disorders and possible association with risk factors. We assessed 101 children (57 males, 44 females) aged 4.5-9.8 years. 90.5 % of the sample met the criteria. Most common diagnoses were: generalized anxiety disorder (66.5 %), specific phobias (52.7 %) and attention deficit hyperactivity disorder (59.1 %). Boys were more likely to have oppositional defiant disorder (OR 3.9). Higher IQ was associated with anxiety disorders (OR 2.9) and older age with agoraphobia (OR 5.8). Night terrors was associated with parental psychological distress (OR 14.2). Most young ASD children met the criteria for additional psychopathology. [ABSTRACT FROM AUTHOR]

The challenges of providing appropriate reproductive healthcare to women with intellectual disabilities are set within the context of a primary health care system. The rationale for this study was to explore the prescribing practices and attitudes of General Practitioner's (GP) when women with intellectual disabilities come to them for contraception. The data reported in this paper come from a cross-sectional postal questionnaire survey conducted with 162 GPs across two counties in England. The majority of respondents had 10 or fewer women with intellectual disabilities of child bearing age on their caseloads. The most commonly prescribed methods of contraception were the Pill (39.7%) and depot medroxyprogesterone acetate (DMPA), (34.2%). The difficulties faced by GPs in determining 'best interests' are explored, as are the issues related to the women's capacity to consent to sex. [ABSTRACT FROM AUTHOR]