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.
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.
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.
Abstract
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.
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.
Abstract
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.
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.
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.
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.
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.
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