Psychological distress and convergence of own and proxy health-related quality of life in carers of adults with an intellectual disability.

BACKGROUND: In adults with an intellectual disability, health-related quality of life (HRQoL) is often measured by proxy report. This cross-sectional study investigated whether the mental health of proxy raters impacts the way they rate HRQoL. METHODS: In this study, 110 carers of adults with an intellectual disability completed measures of psychological distress (Kessler-6) and HRQoL (EQ-5D-3L) about their own HRQoL and that of the care recipient. Differences between HRQoL scores as rated by the carer about themselves and the care recipient were calculated (convergence scores) and multiple regression models were fitted to estimate the association between proxy psychological distress and convergence scores for subjective/objective HRQoL controlling for support needs of the care recipient, carer age and gender of care recipient. RESULTS: There was a significant association between psychological distress and subjective HRQoL convergence scores (r = .92; P = 0.03; 95%; CI: -1.76 to -0.09). There was no association between psychological distress and objective HRQoL convergence scores (r = .01; CI -0.02 to 0.001; P = 0.08). The association between psychological distress and HRQoL scores was no longer present when models did not include convergence scores. CONCLUSIONS: Carers experiencing more psychological distress tended to rate their own and the care recipients' subjective HRQoL more similarly. Objective HRQoL measures did not show this convergence in scores with increasing carer psychological distress. Findings differed when the analysis approach was changed, suggesting the results above require replication in future studies.

The mental health and well-being of adolescents with/without intellectual disability in the UK.

AIMS: To estimate the self-reported and parent-reported mental well-being of adolescents (aged 14 and 17) with/without intellectual disability in a sample of young people representative of the UK population. METHODS: Secondary analysis of data collected in Waves 6 and 7 of the UK's Millennium Cohort Study. The analytic sample consisted of 10,838 adolescent respondents at age 14 (361 with intellectual disability and 10,477 without) and 9,408 adolescent respondents at age 17 (292 with intellectual disability and 9,116 without). RESULTS: Parental reports of adolescent problems on the Strengths and Difficulties Questionnaire (SDQ) indicated that adolescents with intellectual disability at ages 14 and 17 were more likely to have problems than those without intellectual disability across all SDQ domains. Adolescent self-report data at age 17 indicated that adolescents with intellectual disability were more likely to (self)-report that they had problems than those without intellectual disability on all but one SDQ domain. The magnitude of relative inequality between those with and without intellectual disability was consistently lower for self-report than parental report. On indicators of depression, mental well-being, self-harm, positive mental health, happiness and general psychological distress at ages 14 and 17, we found no self-reported group differences between adolescents with and without intellectual disability. CONCLUSIONS: Further research is needed to understand: (1) why the magnitude of mental health inequalities between those with and without intellectual disability on the SDQ may be dependent on the identity of the informant; and (2) whether such differences are also apparent for other measures of mental health or well-being.

Pathways to social well-being of children with intellectual disability: testing the Family Investment Model.

BACKGROUND: Social well-being, including prosocial and peer relationship skills, independence and co-operation, is a particularly important developmental outcome in intellectual disability (ID). The present study investigated pathways to social well-being through the early years' family environment, particularly the role of parental investments in mediating the path from family poverty to child social well-being. METHODS: In line with the Family Investment Model (FIM), we tested whether parental investments between 3 and 5 years of age mediate the impact of family poverty at 9 months of age on children's social well-being at 7 years. Structural equation models were fitted to data from 555 children with ID identified from a UK population-based cohort. RESULTS: Findings indicated that home learning investments and the structural home environment (though not play) significantly mediated the effect of family poverty on children's social skills, albeit in different directions. While all parental investments reduced in the presence of poverty, the home learning environment appeared to promote social well-being, whereas the structural home environment did not. Sensitivity analyses controlling for co-occurring autism confirmed the pattern of findings. Child gender, ethnicity and parental educational qualifications did not moderate the mediational relationships, suggesting that FIM pathways to social well-being were relevant to all families. CONCLUSIONS: The FIM provides a helpful framework to map developmental pathways for children with an ID. Parental investments related to home learning, the structural home environment and play are reduced in the presence of poverty although their impact on child social well-being appears to differ.

Types and correlates of school absenteeism among students with intellectual disability.

BACKGROUND: It appears that students with intellectual disability (ID) are more frequently absent from school compared with students without ID. The objective of the current study was to estimate the frequency of absence among students with ID and the reasons for absence. Potential reasons included the attendance problems referred to as school refusal, where absence is related to emotional distress; truancy, where absence is concealed from parents; school exclusion, where absence is instigated by the school; and school withdrawal, where absence is initiated by parents. METHODS: Study participants were 629 parents (84.6% mothers) of Australian school students (Mage  = 11.18 years; 1.8% Aboriginal and/or Torres Strait Islander) with an ID. Participants completed a questionnaire battery that included the School Non-Attendance ChecKlist via which parents indicated the reason their child was absent for each day or half-day absence their child had over the past 20 school days. The absence data presented to parents had been retrieved from school records. RESULTS: Across all students, absence occurred on 7.9% of the past 20 school days. In terms of school attendance problems as defined in existing literature, school withdrawal accounted for 11.1% of absences and school refusal for 5.3% of absences. Students were also absent for other reasons, most commonly illness (32.0%) and appointments (24.2%). Of students with more than one absence (n = 217; 34.5%), about half were absent for more than one reason. Students attending mainstream schools had lower attendance than those attending special schools. CONCLUSIONS: Students with ID were absent for a range of reasons and often for multiple reasons. There were elevated rates of school withdrawal and school refusal. Understanding the reasons for absenteeism can inform targeted prevention and intervention supports.

A systematic review of relationships and sex education outcomes for students with intellectual disability reported in the international literature.

BACKGROUND: Little is known about how to evaluate relationships and sex education (RSE) delivered to students with intellectual disability and what stakeholders perceive are important outcomes. The present study aimed to systematically review existing studies on outcomes of RSE, as the first step in the development of a core outcome set (COS) for students with intellectual disability. METHOD: A systematic literature process included two stages: (1) searching for studies reporting on RSE outcomes for students with intellectual disability and (2) studies reporting on measurement properties (e.g. validity, reliability and responsiveness) of standardised instruments identified in stage 1. RESULTS: A total of 135 RSE outcomes were extracted from 42 studies: 43 outcomes for students in secondary education and 92 outcomes for students in further education. No RSE outcomes were reported for primary education. Outcomes referred to the human body, hygiene, relationships, sexuality, sex and its consequences, inappropriate and appropriate social and sexual behaviour, keeping safe, emotional vocabulary and positive self-esteem. Outcomes were predominantly knowledge-based, rather than relating to skills and attitudes development. Students with intellectual disability, parents and teachers perceive different RSE outcomes meaningful. Five instruments were used to measure the outcomes, but none have established psychometric properties with this population. CONCLUSIONS: The comprehensive list of RSE outcomes for students with intellectual disability will be used to inform the next steps of a Core Outcome Set needed for RSE evaluations in research and education settings. There is an urgent need to develop standardised instruments validated for students with intellectual disability.

Vaccine hesitancy among working-age adults with/without disability in the UK.

OBJECTIVES: To estimate levels of COVID-19 vaccine hesitancy among working-age adults with disabilities in the United Kingdom. STUDY DESIGN: Cross-sectional survey. METHODS: Secondary analysis of data collected on a nationally representative sample of 10,114 respondents aged 16-64 years. RESULTS: The adjusted relative risk for hesitancy among respondents with a disability was 0.92 (95% CI 0.67-1.27). There were stronger associations between gender and hesitancy and ethnic status and hesitancy among participants with a disability. The most common reasons cited by people with disabilities who were hesitant were: concern about the future effects of the vaccine, not trusting vaccines and concern about the side effects of vaccination. CONCLUSIONS: The higher rates of vaccine hesitancy among women with disabilities and among people from minority ethnic groups with disabilities are concerning.

The impact of the COVID-19 pandemic on the health of adults with intellectual impairment: evidence from two longitudinal UK surveys.

BACKGROUND: People with an intellectual impairment experience high levels of social and health inequalities. We investigated the impact of COVID-19 on the physical and mental health of people with intellectual impairment, controlling for demographic risk, socio-economic circumstances and pre-pandemic health levels. METHOD: Data were drawn from two UK birth cohorts that surveyed their participants on the impact of COVID-19 in May 2020: the Millennium Cohort Study (20-year-old participants) and the British Cohort Survey (50-year-old participants). Health outcomes (COVID-19 infection, COVID-19 symptoms, self-reported physical health, mental health, health service use and impact on health behaviours) were compared between people with and without intellectual impairment, adjusting for gender and ethnicity. Differences were further adjusted for self-reported health pre-pandemic and the impact of COVID-19 on socio-economic circumstances. RESULTS: Controlling for gender and ethnicity, poor health was reported less often by younger adults [relative risks (RR): 0.44 95% confidence interval (CI) 0.23, 0.86] and more often by older adults (RR: 1.99 95% CI 1.45, 2.73) with intellectual impairment compared with peers. Older adults were also more likely to experience fever and loss of taste/smell. Adjusting for pre-pandemic health and socio-economic circumstances eliminated some differences in the older cohort, but not in the younger one. CONCLUSION: In young adulthood, the impact of COVID-19 on health outcomes was not negative. The pattern was reversed in later adulthood, although differences were mostly eliminated after adjustment suggesting a socio-economic and age gradient of COVID-19 impacts on intellectual impairment.

The role of behaviour problems in screening for mental ill-health in adults with intellectual disability

Depression and anxiety are common conditions in adults with intellectual disabilities (ID) and often coexist with behaviour problems. We examined whether behaviour problems can be used to screen for depression and anxiety in ID. Clinical prediction models (CPM) generated from independent databases supported the utility of the depression screen, especially in severe/profound ID. CPM did not support the utility of the anxiety screen at any ID level. Given the paucity of screening tools to improve ascertainment of mental ill-health in ID, the short depression screen would be clinically useful in identifying those who need to undergo a full diagnostic evaluation. (AU)

COVID-19 impact on psychological outcomes of parents, siblings and children with intellectual disability: longitudinal before and during lockdown design.

BACKGROUND: Parents of children with intellectual disability (ID) report comparatively lower levels of well-being than parents of children without ID. Similarly, children with ID, and to a lesser extent their siblings, are reported to show comparatively higher levels of behaviour and emotional problems. Psychological problems may be accentuated by restrictions associated with the COVID-19 pandemic, due to increased social, caring and economic stressors and reduced social support. However, existing studies have not been able to examine the impact of COVID-19 restrictions accounting for pre-COVID levels of well-being in these families. In a naturalistic design, we examined outcomes for parents, siblings and children with ID in a two-wave longitudinal study where Wave 2 data were gathered for some families before and some during COVID-19 restrictions. METHODS: Parents of children with ID who took part in a Wave 2 survey pre-lockdown (n = 294) and during/post-lockdown (n = 103) completed a number of measures about their well-being and the behaviour and emotional problems of both their child with ID and their nearest-in-age sibling. These same measures had also been completed for all families 2-3 years previously in Wave 1 of the study. RESULTS: After accounting for covariates including family socio-economic circumstances, pre-lockdown and post-lockdown groups did not differ on Waves 1 to 2 change for measures of parental psychological distress, life satisfaction, the impact of caregiving on their lives or perceived positive gains; nor child or sibling internalising or externalising behaviour problems. CONCLUSIONS: Findings of the current study indicate that during and shortly after the COVID-19 lockdown in the United Kingdom, well-being in families of children with an ID (as reported by parents) was at similar levels compared with prior to the lockdown period.

Failure to replicate a robust Down syndrome advantage for maternal well-being.

BACKGROUND: Family members caring for children with intellectual disability (ID) routinely report heightened levels of psychological distress. However, families of children with Down syndrome typically report better outcomes (known as the Down syndrome advantage). We examined whether the Down syndrome advantage would be present for maternal psychological distress, impact of caregiving, life satisfaction and perceived positive impact of the child with ID when controlling for external variables. METHODS: Mothers of children with Down syndrome (n = 111) and mothers of children with ID of mixed aetiologies (n = 196) completed measures about their own mental health, perceived impact of caregiving, life satisfaction and perceived positive impact of their child on themselves and the family unit. RESULTS: A series of group comparisons revealed small to moderate differences supporting the presence of a putative Down syndrome advantage in relation to personal maternal well-being outcomes. However, when child-related characteristics and external variables were controlled, the Down syndrome advantage was no longer present, with reduced, small effect sizes observed for all maternal outcomes. CONCLUSIONS: Initial group differences in psychological distress and life satisfaction were largely associated with family poverty, indicating that the Down syndrome advantage may be less robust than previously thought. Future research should seek to move beyond examining the existence of the putative Down syndrome advantage and focus on how families of children with Down syndrome experience family life, including longitudinal research exploring responses to life cycle and transition challenges.

Psychological well-being of fathers with and without a child with intellectual disability: a population-based study.

BACKGROUND: Few studies have explored the well-being of fathers of children with intellectual disability (ID), despite the significant role that they play in their children's lives. The current study compared fathers of children with and without a child with ID on measures of psychological well-being (life satisfaction, work-family balance and general health) and dimensions of parenting (parenting self-efficacy and parent-child closeness) and then examined whether the presence of a child with ID in the family was a significant predictor of paternal well-being when controlling for a number of father (age, education, employment and residency), child (ID status, gender, behavioural and emotional problems) and family (income poverty and number of children in the household) variables. METHODS: Data were drawn from the third wave of the Millennium Cohort Study, a UK population-representative and cohort study, where the cohort child was 5 years of age; 256 fathers were identified as having a child with ID, with data available for 10 187 fathers without a child with ID. Fathers were compared on the four well-being and parenting outcomes and then multiple regression models were conducted to explore associations between these outcomes and variables identified as potential correlates of well-being. RESULTS: Initial group comparisons showed that there were differences in the well-being of fathers, with fathers of children with ID reporting poorer life satisfaction and general health. However, these differences were small. Regression analyses showed that child behavioural and emotional problems, living in income poverty and paternal employment were more important than disability status in predicting fathers' well-being. CONCLUSIONS: These works add to the limited amount of research on fathers using population-representative data. The current findings are consistent with rejecting a general simplistic and negative narrative that raising a child with ID puts fathers at risk of poorer outcomes. However, some fathers, such as those with children with behavioural problems and living in poverty, may require greater support. Future longitudinal research that explores the impact of paternal well-being on the long-term outcomes of children with and without ID is warranted.

Living with family: perceptions of health and subjective well-being of adults with an intellectual disability.

BACKGROUND: Little is known about the role of living circumstances to the perception of subjective well-being (SWB) and health of adults with intellectual disability (ID). The aim of the present study was to examine whether living circumstances impact differently on the perception of health and SWB and whether potential differences persist after accounting for other variables (e.g. level of support needs and reporting method). METHODS: Secondary data analysis was undertaken of a large national survey of adults with an ID in England, aged 16 years and over. Participants were identified as living with family (N = 1528) or living out of home (N = 874). RESULTS: The results of t-test and chi-square revealed that levels of health and SWB were perceived as being higher for people living with family than those living in out-of-home settings. Multiple linear regression analyses fitted to explore factors associated with these reported differences revealed that, when controlling for other variables, living with family was highly associated with reports of better SWB. Multiple logistic regression revealed that whilst the health status of people living with families were perceived as better, this was only true when their support needs were low. Poorest health outcomes were found for people with highest support needs who lived with family. CONCLUSIONS: On the whole, the health and well-being of adults living with family were perceived more positively than those living out of home. However, potential health disparities exist for those with high support needs who live with family. Further longitudinal research is needed to explore causes and potential solution to these inequalities.

The construct of maternal positivity in mothers of children with intellectual disability.

BACKGROUND: Despite the elevated levels of stress, anxiety and depression reported by mothers of children with intellectual disabilities (ID), these mothers also experience positive well-being and describe positive perceptions of their child. To date, maternal positivity has been operationalised in different ways by using a variety of measures. In the present study, we tested whether a latent construct of maternal positivity could be derived from different measures of positivity. METHOD: One hundred and thirty-five mothers of 89 boys and 46 girls with ID between 3 and 18 years of age completed measures on parental self-efficacy, their satisfaction with life, family satisfaction, their positive affect and their positive perceptions of their child with ID. We conducted a confirmatory factor analysis of latent positivity and subsequently tested its association with child social skills and behaviour problems, and maternal mental health. RESULTS: A latent maternal positivity factor achieved a statistically good fit by using the five observed indicators of positivity. Parental self-efficacy had the strongest loading on the latent factor. Maternal positivity was significantly negatively associated with maternal psychological distress, maternal stress and child problem behaviours and positively associated with child positive social behaviour. CONCLUSIONS: These findings lend support to the importance of examining parental positivity in families raising a child with ID, and using multiple indicators of positivity. Associations with negative psychological outcomes suggest that interventions focused on increasing parental positivity may have beneficial effects for parents. Further research is needed, especially in relation to such interventions.

Prevalence of psychotropic medication use and association with challenging behaviour in adults with an intellectual disability. A total population study.

BACKGROUND: There is a high prevalence of psychotropic medication use in adults with Intellectual Disabilities (ID), often in the absence of psychiatric disorder, also associated with challenging behaviour. Previous research has focused on specific sample frames or data from primary care providers. There is also a lack of consistency in the definition of challenging behaviour used. METHODS: We adopted a total population sampling method. Medication data on 265 adults with ID were classified according to the Anatomical Therapeutic Chemical classification system. The Behaviour Problems Inventory - short form classified challenging behaviours. We examined the association between challenging behaviour and the use of psychotropic medication, and whether any association would still be present after accounting for socio-demographic and clinical characteristics. RESULTS: 70.57% of adults with ID were prescribed at least one class of any medication (mean per person =2.62; range 0-14). Psychotropic medications were used by 37.73% of participants with antipsychotics the commonest type used by 21.89% of individuals. Polypharmacy and high dosages were common. Generalised Linear Models indicated significant associations between psychotropic medication and the presence of a psychiatric diagnosis, challenging behaviour, older age and type of residence. Male gender was additionally associated with antipsychotic medication. CONCLUSIONS: The use of a total population sample identified via multiple routes is less likely to overestimate prevalence rates of medication use. Current challenging behaviour was a predictor of medication use after controlling for other variables. Data indicate that there may be differences in prescribing patterns associated with different topographies of challenging behaviours.

Behavioural interventions for sleep problems in people with an intellectual disability: a systematic review and meta-analysis of single case and group studies.

BACKGROUND: Behavioural interventions are frequently used to address sleep problems in people with intellectual disabilities (ID). The current study aimed to systematically review evidence on the efficacy of behavioural interventions for children and adults with ID and sleep problems. METHOD: Electronic and hand searches identified seven studies for inclusion (N = 169). Standardised mean difference effect sizes (d) were calculated for group studies (N = 4). Non-overlap effect sizes (Tau-U) were calculated for single case experimental design studies (SCEDs; N = 3). RESULTS: A large effect size (weighted d = 0.923, confidence interval: 0.705 to 1.151) across group studies indicated large improvements in sleep problems following behavioural intervention. Effect size across SCEDs (weighted Tau-U: 0.528, confidence interval: 0.351 to 0.705) indicated a 53% improvement compared with baseline. Sleep initiation and sleep maintenance problems showed significant improvements post-intervention. Follow-up effects were less consistent across study designs and suggested that some sleep problems maintain gains better than others. CONCLUSION: Meta-analytic evidence from group and SCEDs can provide complementary information about efficacy. Findings propose that behavioural interventions are a promising evidence-based practice for improving sleep problems in people with ID.

Siblings of children with life-limiting conditions: psychological adjustment and sibling relationships.

BACKGROUND: This study explored psychological adjustment and sibling relationships of siblings of children with life-limiting conditions (LLCs), expanding on previous research by defining LLCs using a systematic classification of these conditions. METHODS: Thirty-nine siblings participated, aged 3-16 years. Parents completed measures of siblings' emotional and behavioural difficulties, quality of life, sibling relationships and impact on families and siblings. Sibling and family adjustment and relationships were compared with population norms, where available, and to a matched comparison group of siblings of children with autistic spectrum disorder (ASD), as a comparable 'high risk' group. RESULTS: LLC siblings presented significantly higher levels of emotional and behavioural difficulties, and lower quality of life than population norms. Their difficulties were at levels comparable to siblings of children with ASD. A wider impact on the family was confirmed. Family socio-economic position, time since diagnosis, employment and accessing hospice care were factors associated with better psychological adjustment. CONCLUSIONS: Using a systematic classification of LLCs, the study supported earlier findings of increased levels of psychological difficulties in siblings of children with a LLC. The evidence is (i) highlighting the need to provide support to these siblings and their families, and (ii) that intervention approaches could be drawn from the ASD field.

How do static and dynamic risk factors work together to predict violent behaviour among offenders with an intellectual disability?

BACKGROUND: Research on risk assessment with offenders with an intellectual disability (ID) has largely focused on estimating the predictive accuracy of static or dynamic risk assessments, or a comparison of the two approaches. The aim of this study was to explore how static and dynamic risk variables may 'work together' to predict violent behaviour. METHODS: Data from 212 offenders with an ID were analysed. Risk assessment tools included one static measure (Violence Risk Appraisal Guide), and two dynamic measures (Emotional Problems Scale and the Short Dynamic Risk Scale). Six-month concurrent prediction data on violent behaviour were collected. A structured methodology was employed to explore putative relationships between static and dynamic factors. RESULTS: Static risk factors temporally preceded dynamic ones, and were shown to dominate both dynamic measures, while there was a non-zero relationship between the static and the two dynamic measures. According to Kraemer et al., these findings suggest that dynamic risk factors function as proxy risk factors for static risk. CONCLUSIONS: Dynamic and static risk factors appear to capture elements of the same underlying risk associated with violent behaviour in individuals with an ID. This is the first study to empirically explore risk interrelationships in the forensic ID field. We discuss the importance of the contribution of dynamic variables in the prediction and management of risk.

Who's challenging who? Changing attitudes towards those whose behaviour challenges.

BACKGROUND: Although staff attitudes towards individuals with intellectual disability (ID) whose behaviour challenges may be an important part of a positive support culture, very little research has focused on the development of training specifically designed to change staff attitudes. Positive contact is hypothesised to be an effective way to change attitudes towards stigmatised groups. METHODS: We designed and developed a half day training package about the experiences of individuals whose behaviour challenges - Who's Challenging Who (WCW). The WCW package was delivered according to a manual by a trainer with ID and a professional without disability. Seventy-six staff from a variety of organisations participated in one of 10 WCW training sessions and provided data on their attitudes and empathy towards individuals whose behaviour challenges prior to the WCW training and immediately at the end of training. Staff also completed a post-training evaluation questionnaire. RESULTS: A training package was successfully developed collaboratively with individuals whose behaviour challenges, and received very positive evaluations from staff participants. Short-term positive change was shown for empowerment and similarity attitudes, and staff empathy and self-efficacy. These outcomes were associated with small to moderate effect sizes. CONCLUSIONS: Meaningful short-term positive staff attitude changes were found and the WCW training model was shown to be feasible. More robust research designs are needed for future evaluation. In addition, the function of an attitude change intervention such as WCW within organisations' training strategies requires further development.

Persistence of challenging behaviours in adults with intellectual disability over a period of 11 years.

BACKGROUND: Challenging behaviours in people with an intellectual disability (ID) often develop early and tend to persist throughout life. This study presents data on the chronicity of challenging behaviours in adults with ID over a period of 11 years, and explores the characteristics of people with persistent serious behaviour problems. METHOD: Support staff provided data on 58 adults living in a long-term residential facility using an interview survey schedule assessing challenging behaviours in 1992 and 2003. RESULTS: Participants presenting with serious physical attacks, self-injury and frequent stereotypy were the most likely to persist in these behaviours over time. These behaviours were characterised by high persistence percentages and associations over time. However, the earlier presence of serious challenging behaviours did not significantly affect the likelihood of serious challenging behaviours in 2003. Individuals with persisting behaviour problems differed from those who did not present serious behaviour problems on the basis of their younger age, increased mobility, and decreased sociability and daily living skills in 1992. CONCLUSIONS: Estimates of persistence for challenging behaviours are affected by the statistics chosen to represent stability. The apparent persistence of serious challenging behaviours highlights the need to identify the factors related to maintenance of these behaviours over time. The participant characteristics and adaptive behaviours identified in the present study were not consistently related to the persistence of challenging behaviours. Therefore, other factors, including environmental characteristics, are likely to be related to challenging behaviour persistence.