What do people with intellectual disabilities, their family members and paid carers understand about psychotropic medication? A rapid review.

BACKGROUND: People with intellectual disabilities are more likely to be prescribed psychotropic medication than the general population and are frequently prescribed multiple medications. Understanding people with intellectual disabilities and carer perspectives is essential to improving the quality of psychotropic medication prescribing and usage. METHOD: A rapid review explored people with intellectual disabilities' understanding of psychotropic medications, as well as family members and paid carers, and how this understanding can be improved. RESULTS: Twenty-one journal articles were included. Lack of understanding of medication was universal, with participants often unaware of adverse effects, alternatives, and rights around medication. There was also a lack of involvement in decision making for all participants. Some interventions aimed at people with intellectual disabilities or paid carers helped to improve knowledge. CONCLUSION: Evaluating how best to improve psychotropic medication understanding for people with intellectual disabilities, family members and paid carers should be a focus for future research.

Online social connections and Internet use among people with intellectual disabilities in the United Kingdom during the COVID-19 pandemic.

Having a disability, in particular, an intellectual disability, is associated with Internet non-use. This article explores how people with intellectual disabilities used the Internet across the United Kingdom during the COVID-19 pandemic. In April to May 2021, 571 adults with intellectual disabilities were interviewed. Participants most commonly used the Internet for being with family and friends, social media or doing online activities with other people. People who lived with family were the most likely to use social media; people who lived with other people with intellectual disabilities were the least likely. People who self-reported as not lonely were more likely to use the Internet for online activities with others and play video games with others. Social connections were identified as the best thing about the Internet. Many participants chose not to identify a worst thing about Internet use, while others reported issues with technology, online harm and threats to well-being.

Behavioural activation for depressive symptoms in adults with severe to profound intellectual disabilities: Modelling and initial feasibility study.

BACKGROUND: Almost no research has been published reporting on evaluations of the effectiveness of psychological interventions for people with severe to profound intellectual disabilities and depression. This paper describes the development and initial feasibility testing of an adapted Behavioural Activation therapy (BeatIt2) for this population. METHOD: Phase 1 of the study examined participant recruitment and willingness to be randomised in the context of a planned Randomised Controlled Trial (RCT). Phase 2 examined the feasibility of delivering the intervention. RESULTS: Twenty adults with a severe or profound intellectual disability and clinically significant depression were recruited to Phase 1 of the study. In Phase 2, there was 100% participant retention for those recruited to the study at 6-month follow-up. The BeatIt2 therapy was reported to be acceptable for participants. CONCLUSION: COVID disruption meant that it was not possible to complete the planned feasibility RCT. The positive findings suggest that additional evaluation of BeatIt2 is warranted.

Adapting psychological interventions for people with severe and profound intellectual disabilities: A behavioural activation exemplar.

BACKGROUND: People with severe to profound intellectual disabilities experience similar or higher levels of depression than those with more mild intellectual disabilities. Yet, there is an absence of evidence about how to adapt existing psychological therapies for this population. METHOD: A behavioural activation intervention (BeatIt) for people with mild to moderate intellectual disabilities was adapted for people with severe to profound intellectual disabilities and depression. Key considerations include: (i) beginning with a more in-depth assessment process; (ii) including the person in session activities and developing a relationship with them; (iii) formulation and the use of film to document the link between activity and mood; and (iv) addressing barriers to change at an individual and inter-personal level and considering how the carer could support the person's engagement in activity. RESULTS: Successfully adapting BeatIt represents a first step towards gathering evidence about the effectiveness of behavioural activation for people with severe to profound intellectual disabilities.

Understanding covid-19 outcomes among people with intellectual disabilities in England.

BACKGROUND: Evidence from the UK from the early stages of the covid-19 pandemic showed that people with Intellectual Disabilities (ID) had higher rates of covid-19 mortality than people without ID. However, estimates of the magnitude of risk vary widely; different studies used different time periods; and only early stages of the pandemic have been analysed. Existing analyses of risk factors have also been limited. The objective of this study was to investigate covid-19 mortality rates, hospitalisation rates, and risk factors in people with ID in England up to the end of 2021. METHODS: Retrospective cohort study of all people with a laboratory-confirmed SARS-CoV-2 infection or death involving covid-19. Datasets covering primary care, secondary care, covid-19 tests and vaccinations, prescriptions, and deaths were linked at individual level. RESULTS: Covid-19 carries a disproportionately higher risk of death for people with ID, above their already higher risk of dying from other causes, in comparison to those without ID. Around 2,000 people with ID had a death involving covid-19 in England up to the end of 2021; approximately 1 in 180. The covid-19 standardized mortality ratio was 5.6 [95% CI 5.4, 5.9]. People with ID were also more likely to be hospitalised for covid-19 than people without ID. The main determinants of severe covid-19 outcomes (deaths and/or hospitalisations) in both populations were age, multimorbidity and vaccination status. The key factor responsible for the higher risk of severe covid-19 in the ID population was a much higher prevalence of multimorbidity in this population. AstraZeneca vaccine was slightly less effective in preventing severe covid-19 outcomes among people with ID than among people without ID. CONCLUSIONS: People with ID should be considered a priority group in future pandemics, such as shielding and vaccinations.

The relationship between subjective socioeconomic status and health in adults with and without intellectual disability.

BACKGROUND: This study investigated if subjective socioeconomic status (SSS) is related to self-rated health (SRH) and objective indicators of health in people with and without intellectual disability. METHODS: Participants were 217 adults with, and 2350 adults without intellectual disability in Jersey. In the intellectual disability sample, 85 (39.2%) participants consented independently, while 132 (60.8%) participants consented through proxy procedures. The MacArthur Scale of Subjective Social Status was used to measure SSS. The Euro-Qol EQ-5D-5L and a five-point scale ranging from poor to excellent health were used to measure SRH. RESULTS: Higher SSS and younger age were predictors of better SRH for the proxy-report intellectual disability group. Being employed was associated with higher EQ-5D-5L index values for all intellectual disability groups. CONCLUSION: As SSS was only related to SRH in the proxy intellectual disability group, further research with a larger intellectual disability sample is needed to explore its utility further.

The impact of the COVID pandemic on working age adults with disability: Meta-analysis of evidence from four national surveys.

Concern has been expressed about the extent to which people with disabilities may be particularly vulnerable to negative impacts of the 2020 COVID-19 pandemic. However, to date little published research has attempted to characterise or quantify the risks faced by people with/without disabilities in relation to COVID-19. We sought to compare the impact of the early stages of the COVID-19 pandemic and associated government responses among working age adults with and without disabilities in the UK on; COVID-19 outcomes, health and wellbeing, employment and financial security, health behaviours, and conflict and trust. We undertook secondary analysis of data collected in four UK longitudinal surveys; the Millennium Cohort Study, Next Steps, the British Cohort Study and the National Child Development Study. Combining analyses across surveys with random effects meta-analysis, there was evidence that people with disabilities were significantly more likely to report having had COVID-19 and had significantly increased levels of stress, less exercise, poorer sleep patterns, more conflict with their partner and others in their local area, and to have less trust in the government. While most outcomes did not differ significantly between participants with and without disability, the findings suggest that in the early days of COVID-19 a detrimental impact emerges for those with disabilities which is more pronounced among older people with disabilities. Future research is needed to determine the longer-term impact of the pandemic.

COVID-19 infection and outcomes in a population-based cohort of 17 203 adults with intellectual disabilities compared with the general population.

BACKGROUND: Adults with intellectual disabilities (ID) may be at higher risk of COVID-19 death. We compared COVID-19 infection, severe infection, mortality, case fatality and excess deaths, among adults with, and without, ID. METHODS: Adults with ID in Scotland's Census, 2011, and a 5% sample of other adults, were linked to COVID-19 test results, hospitalisation data and deaths (24 January 2020-15 August 2020). We report crude rates of COVID-19 infection, severe infection (hospitalisation/death), mortality, case fatality; age-standardised, sex-standardised and deprivation-standardised severe infection and mortality ratios; and annual all-cause mortality for 2020 and 2015-2019. FINDINGS: Successful linkage of 94.9% provided data on 17 203 adults with, and 188 634 without, ID. Adults with ID had more infection (905/100 000 vs 521/100 000); severe infection (538/100 000 vs 242/100 000); mortality (258/100 000 vs 116/100 000) and case fatality (30% vs 24%). Poorer outcomes remained after standardisation: standardised severe infection ratio 2.61 (95% CI 1.81 to 3.40) and mortality ratio 3.26 (95% CI 2.19 to 4.32). These were higher at ages 55-64: 7.39 (95% CI 3.88 to 10.91) and 19.05 (95% CI 9.07 to 29.02), respectively, and in men, and less deprived neighbourhoods. All-cause mortality was slightly higher in 2020 than 2015-2019 for people with ID: standardised mortality ratio 2.50 (95% CI 2.18 to 2.82) and 2.39 (95% CI 2.28 to 2.51), respectively. CONCLUSION: Adults with ID had more COVID-19 infections, and worse outcomes once infected, particularly adults under 65 years. Non-pharmaceutical interventions directed at formal and informal carers are essential to reduce transmission. All adults with ID should be prioritised for vaccination and boosters regardless of age.

Health and healthcare for people with disabilities in the UK during the COVID-19 pandemic.

BACKGROUND: While emerging evidence shows increased mortality from COVID-19 among people with disability, evidence regarding whether there are disability-related inequalities in health during the pandemic is lacking. OBJECTIVE: This study compares access to COVID-19 and non-COVID-19 related health care and mental health of people with and without disability. METHODS: Longitudinal analysis of 12,703 adults (16-64 years) who participated in W9 (2017-2019) and the April and/or May COVID-19 special surveys of the UK Understanding Society study. Descriptive analyses and Poisson regression (adjusted for age, gender, ethnicity and financial stress) were conducted to estimate associations between disability (measured at Wave 9) and a number of different COVID-19-related health and health care outcomes (COVID-19 symptoms, testing and hospitalisation), mental health and loneliness, and non-COVID-19 related health care (e.g. outpatient and inpatient hospital care, prescription medications). RESULTS: Results from the fully-adjusted regression models found that people with disability were more likely: to be hospitalised if symptomatic (adjusted PRR 3.0 95% 1.07-8.43); to experience current symptoms of psychological distress (PRR 1.15, 95% CI 1.05-1.26) and to report being lonely (PRR 1.75, 95% CI 1.46-2.09) compared to non-disabled people. People with disability reported much higher levels of comorbidities than people without disability. However, inability to access health care and treatment were similar. CONCLUSIONS: As the UK opens up, it is important that health care services and social policy address the poor mental health and social isolation of people with disability so that the inequalities occurring early in the pandemic do not become further entrenched.

Infection-related morbidity and mortality among older patients with DLBCL treated with full- or attenuated-dose R-CHOP.

Infection-related morbidity and mortality are increased in older patients with diffuse large B-cell lymphoma (DLBCL) compared with population-matched controls. Key predictive factors for infection-related hospitalization during treatment with rituximab plus cyclophosphamide, doxorubicin, vincristine, and prednisone (R-CHOP) and deaths as a result of infection in older patients during and after treatment with R-CHOP remain incompletely understood. For this study, 690 consecutively treated patients age 70 years or older who received full-dose or attenuated-dose R-CHOP treatment were analyzed for risk of infection-related hospitalization and infection-related death. Median age was 77 years, and 34.4% were 80 years old or older. Median follow-up was 2.8 years (range, 0.4-8.9 years). Patient and baseline disease characteristics were assessed in addition to intended dose intensity (IDI). Of all patients, 72% were not hospitalized with infection. In 331 patients receiving an IDI ≥80%, 33% were hospitalized with ≥1 infections compared with 23.3% of 355 patients receiving an IDI of <80% (odds ratio, 1.61; 95% confidence interval, 1.15-2.25; P = .006). An increased risk of infection-related admission was independently associated with IDI >80% across the whole cohort. Primary quinolone prophylaxis independently reduced infection-related admission. A total of 51 patients died as a result of infection. The 6-month, 12-month, 2-year, and 5-year cumulative incidences of infection-related death were 3.3%, 5.0%, 7.2%, and 11.1%, respectively. Key independent factors associated with infection-related death were an International Prognostic Index (IPI) score of 3 to 5, Cumulative Illness Rating Scale for Geriatrics (CIRS-G) score ≥6, and low albumin, which enabled us to generate a predictive risk score. We defined a smaller group (15%) of patients (IPI score of 0-2, albumin >36 g/L, CIRS-G score <6) in which no cases of infection-related deaths occurred at 5 years of follow-up. Whether patients at higher risk of infection-related death could be targeted with enhanced antimicrobial prophylaxis remains unknown and will require a randomized trial.

The experiences of therapists providing psychological treatment for adults with depression and intellectual disabilities as part of a randomised controlled trial.

BACKGROUND: Health professionals were trained to deliver adapted psychological interventions for depression to people with learning disabilities and depression alongside a supporter. Exploring the delivery of psychological interventions can help increase access to therapy. METHOD: Twenty-seven participants took part in six focus groups, and the data were subject to a Framework Analysis. RESULTS: The structure and focus of the manualised therapies, and the use of specific techniques were perceived as key to service-user engagement. Supporters' involvement was valued by therapists if they had a good relationship and regular contact with the individual they supported. Regular clinical supervision was regarded as vital in understanding their role, assessing progress and delivering the interventions. CONCLUSIONS: The findings highlight that health professionals can embrace a focussed therapeutic role and increase access to psychological therapies for people with intellectual disabilities.

Short report and initial evaluation of the factor structure of the Lancaster and Northgate Trauma Scales (LANTS).

BACKGROUND: Research suggests exposure to adverse life events is elevated in people with intellectual disabilities. We developed the Lancaster and Northgate Trauma Scales (LANTS) to address the limited availability of screening questionnaires for people with intellectual disabilities affected by adverse traumatic experiences. AIMS: The aims of this study were to (i) evaluate the factor structure of the self-report LANTS and (ii) assess compatibility with the International Classification of Diseases Eleventh Revision (ICD-11) criteria for complex PTSD. METHODS AND PROCEDURE: Ninety-eight people with mild to moderate intellectual disability (86 % men; mean age 41 years) completed the self-report LANTS. Exploratory factor analysis was undertaken using a polychoric correlation matrix, appropriate for the LANTS ordinal response options. OUTCOMES AND RESULTS: Seven items including self-harm and anger were non-normal in distribution and excluded from the analysis; a four-factor structure was identified for the 22 remaining items. We make suggestions for correspondence of LANTS items to ICD-11 criteria for complex PTSD. CONCLUSIONS AND IMPLICATIONS: This is the first exploratory factor analysis of the LANTS. Items pertaining to anger and self-harm may be prone to response bias and development of these items using qualitative methods would be useful. The findings require replication with a larger group of people with intellectual disabilities, including more women.

The impact of disability on employment and financial security following the outbreak of the 2020 COVID-19 pandemic in the UK.

BACKGROUND: The coronavirus disease 2019 (COVID-19) pandemic may have a greater impact on people with disabilities than non-disabled people. Our aim was to compare the short-term impact of the 2020 COVID-19 pandemic and first lockdown on the employment and financial security of working age adults with and without disabilities in the UK. METHODS: Secondary analysis of data collected in Wave 9 and the special April, May and June COVID-19 monthly surveys of 'Understanding Society', the UK's main annual household panel study. RESULTS: During the first 3 months of the introduction of the COVID-19 lockdown in the UK, respondents with disability were more likely than their peers to be working reduced hours and experience higher levels of financial stress. These differences were attenuated, but not eliminated, when estimates were adjusted to take account of pre-lockdown financial status. CONCLUSIONS: Working age adults with disability were particularly disadvantaged by the financial impact of the COVID-19 lockdown in the UK. The UN Secretary-General António Guterres has stated the need for a disability-inclusive COVID-19 government response. The results of our analysis suggest that these pleas have either not been heeded, or if measures have been implemented, they have so far been ineffectual in the UK.

A comparison of the prevalence of health problems among adults with and without intellectual disability: A total administrative population study.

INTRODUCTION: There is considerable international research indicating health disparities between people with and without intellectual disabilities. It is important that comparative studies use representative population samples. This study compares a total administrative population of adults with intellectual disability to a random stratified general population sample. METHODS: An administrative population of 217 adults with intellectual disability and a random stratified sample of 2,350 adults without intellectual disability participated. A questionnaire using the International Classification of Diseases (ICD-10) Chapter Headings was administered to all participants to enable a like-for-like comparison. FINDINGS: Unadjusted comparisons identified that adults with intellectual disability have a greater prevalence of health problems. These problems start early in adulthood and continue throughout life. However, they were less likely to experience cancers and musculoskeletal diseases. CONCLUSIONS: These findings are consistent with the hypothesis that adults with intellectual disabilities have greater prevalence rates of health problems than the general population.

Improving health care for disabled people in COVID-19 and beyond: Lessons from Australia and England.

COVID-19 has exacerbated pre-existing difficulties children and adults with disability face accessing quality health care. Some people with disability are at greater risk of contracting COVID-19 because they require support for personal care and are unable to physically distance, e.g. those living in congregate settings. Additionally, some people with disability have health conditions that put them at higher risk of poor outcomes if they become infected. Despite this, governments have been slow to recognise, and respond to, the unique and diverse health care needs of people with disability during COVID-19. While some countries, including Australia, have improved access to high-quality health care for people with disability others, like England, have failed to support their citizens with disability. In this Commentary we describe the health care responses of England and Australia and make recommendations for rapidly improving health care for people with disability in the pandemic and beyond.

COVID-19: Implications for the Support of People with Social Care Needs in England.

This perspective examines the challenge posed by COVID-19 for social care services in England and describes responses to this challenge. People with social care needs experience increased risks of death and deteriorating physical and mental health with COVID-19. Social isolation introduced to reduce COVID-19 transmission may adversely affect well-being. While the need for social care rises, the ability of families and social care staff to provide support is reduced by illness and quarantine, implying reductions in staffing levels. Consequently, COVID-19 could seriously threaten care availability and quality. The government has sought volunteers to work in health and social care to help address the threat posed by staff shortages at a time of rising need, and the call has achieved an excellent response. The government has also removed some barriers to effective coordination between health and social care, while introducing measures to promote the financial viability of care providers. The pandemic presents unprecedented challenges that require well-co-coordinated responses across central and local government, health services, and non-government sectors.

The wellbeing of working-age adults with and without disability in the UK: Associations with age, gender, ethnicity, partnership status, educational attainment and employment status.

BACKGROUND: Few population-based studies have examined the association between disability and personal wellbeing (PWB) among working-age adults. OBJECTIVE/HYPOTHESIS: To determine: (1) the magnitude of differences in wellbeing between working-age adults with and without disability in contemporary samples representative of the UK population; and (2) whether the size of any observed differences between people with and without disability is moderated by age, gender, ethnicity, partnership status, educational attainment or employment status. METHODS: Secondary analysis of data from three national cross-sectional surveys. RESULTS: In each survey, people with disability scored lower than people without disability on all four indicators of PWB. Adjusting for the main effects of potentially moderating variables reduced the effect size of disability on PWB by an average of 24%. Subsequently adjusting for the two-way interaction terms between disability and potentially moderating variables reduced the effect size of disability (main effect) on PWB by an additional average of 73%. PWB among people with disability was significantly lower for: (1) men; (2) younger people; (3) those who belong to the majority ethnic group (white British); (4) those without a partner; and (5) people with lower socio-economic position. CONCLUSIONS: Our findings indicate that demographic characteristics and exposure to specific social determinants of poor health play a major role in the negative association between disability and personal wellbeing. A more sophisticated understanding of how social determinants interact to produce inequities associated with identities such as disability, gender, race, sexuality, and class (intersectionality) can inform effective policy interventions.

Early Years Parenting Mediates Early Adversity Effects on Problem Behaviors in Intellectual Disability.

A family developmental framework was applied to data from families of children with intellectual disabilities to understand the role of parenting in the path from early adversity to problem behaviors in mid-childhood. Data from 9 months to 11 years tested the Family Stress Model in families of 555 children. Adversarial parenting between 3 and 5 years mediated the path from early adversity (family poverty and maternal psychological distress at nine months) to problem behaviors at 7 and 11 years. Positive parent-child relationship only mediated the path to conduct problems. Multiple mediation was not present. Early adversity impacts both positive parent-child relationship and adversarial parenting between three and five, but the latter is crucial for problem behaviors in mid-childhood.

Health geography and the 'performative' turn: making space for the audio-visual in ethnographic health research.

The purpose of this paper is to critically reflect on the added value of video in ethnographic research that seeks to understand peoples' lived experiences of health and place. Of particular interest is the potential for video to elicit the embodied, multisensory and relational nature of people's place experiences that are the focus of much recent health geography research. We draw on our experiences of using video in an ethnographic study that sought to explore the experiences of people with intellectual disabilities engaged in nature based (or 'green care') therapeutic interventions for health and wellbeing. We argue that video has the potential to capture aspects of people's wellbeing experiences that may be lost using other methods, such as observational field noting. Consideration is also given to how researchers using video methods should seek to (re)present people's wellbeing experiences, as well as the practical and ethical challenges that this approach has for those working in the field of health geography.

Rights to social determinants of flourishing? A paradigm for disability and public health research and policy.

BACKGROUND: The term evidence based medicine was introduced in the early 1990s in clinical medicine to educate clinicians about how to assess the 'credibility' of research to ensure best treatments for their patients. The evidence based medicine paradigm has become more diffuse in times of austerity and randomised controlled designs are being used to address complex issues in public health and disability research. This research is not addressing inequalities in terms of disability nor how people can live well with disabilities. MAIN TEXT: We argue that there are four ways that public health research needs to change if it wants to address inequalities linked to disability: 1) rethinking theoretical connections between public health and disability; 2) building ethics and equity into interventions through a human rights approach; 3) ensuring ethical inclusion through intersectionality; and 4) evaluating policy and other social impacts to ensure they capture diversity. We argue that these are key issues to building a social determinants of flourishing. CONCLUSIONS: We need to understand how disability might have an accumulative impact across the life course, as well as how to ensure equity for people living with disabilities. This means conceptualising a social determinants of flourishing where we evaluate how exactly randomised controlled trials and public health interventions, not only lead to greater equality but also ensure rights to health and wellbeing.