Psychological wellbeing in parents of children with Down syndrome: A systematic review and meta-analysis.

We report a review examining the psychological wellbeing of parents of children with Down syndrome (DS) relative to that of parents of typically developing (TD) children. A systematic search identified 57 relevant studies, which were synthesised meta-analytically. Relative to their counterparts with TD children, mothers and fathers of children with DS reported higher levels of parenting stress (mothers: g = 0.57, 95% CI [0.33, 0.81]; fathers: g = 0.40, [0.24, 0.56]), depressive symptoms (mothers: g = 0.42, [0.23, 0.61]; fathers: g = 0.25, [0.02, 0.48]) and psychological distress (mothers: g = 0.45, [0.30, 0.60]; fathers: g = 0.63, [0.26, 0.99]). Small effects were found for anxiety for mothers (g = 0.16, [0.03, 0.29]), with no differences for fathers (g = 0.03, [-0.25, 0.32]). No group differences were found for positive impact of parenting (mothers: g = -0.09, [-0.25, 0.07]; fathers: g = -0.04, [-0.30, 0.22]), while evidence concerning other positive wellbeing outcomes was limited. No significant moderating effects of child age range, country income level, or group differences in parental education level were identified, but limited subgroup analyses were possible. Raising a child with DS may be associated with elevated stress, depressive symptoms, and psychological distress for mothers and fathers. However, levels of parenting reward appear equivalent to those experienced by parents raising TD children.

Challenging behaviour and its correlates in preschool-aged children with an intellectual disability in Saudi Arabia.

BACKGROUND: Young children with an intellectual disability have a higher risk of developing challenging behaviour (CB). Early identification of risk factors for CB allows for earlier intervention. The aim of the current study was to assess the prevalence and correlates of CB in preschool-aged children with an intellectual disability in Riyadh (Saudi Arabia). METHODS: One hundred twenty parents of preschool-aged (3-6 years old) children who had been diagnosed (DSM-5 criteria) with an intellectual disability completed an online cross-sectional survey that included demographic, CB and child adaptive skills measures. The relationship between CB and 15 potential correlates (e.g. gender and degree of disability) was examined using independent samples t-tests and chi-squared tests. RESULTS: Most preschool-aged (3-6 years old) children with an intellectual disability exhibited CB (78.8%, 95% CI [70.3, 85.8]), with a 63.2% prevalence rate for self-injurious behaviours (95% C [53.8, 72.0]), a 57.6% rate for aggressive destructive behaviours (95% CI [48.2, 66.7]) and a 25% rate for stereotypy (95% CI [17.7, 34.0]). The likelihood of a child engaging in self-injurious and stereotyped behaviours was higher in those with autism and intellectual disability. Children with Down syndrome displayed fewer stereotyped behaviours. Low adaptive skill levels were associated with increased overall CB, self-injurious and stereotyped behaviours. CONCLUSIONS: The identified correlates of CB in this population and cultural context align with the international evidence base. Findings have implications for the importance of early systematic screening of CB in preschool-aged children in Saudi Arabia and other similar contexts. Preventative measures are suggested for preschool-aged children with an intellectual disability who are more likely to demonstrate CB, such as those with autism and poor adaptive behaviours.

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.

Reducing the risk of criminal exploitation using multi-systemic therapy (the RESET Study): study protocol for a feasibility study and process evaluation.

BACKGROUND: Child criminal exploitation is a form of child abuse that poses a serious risk to the welfare, safety, and wellbeing of young people. Multisystemic therapy (MST) is an intensive family and community-based intervention for young people with anti-social behavioral problems, many of whom will be at risk of criminal exploitation. This protocol describes a pilot feasibility study and process evaluation, designed to examine MST for children at risk of criminal exploitation. METHODS: This pilot feasibility study and process evaluation involves two phases with associated subphases: phase 1.1 involved the collaborative refinement of the logic model adapting MST for children at risk of criminal exploitation; phase 1.2 involved pre-pilot interviews with MST therapists, families, and young people; phase 2.1 is a pilot modeling study of MST for children at risk of criminal exploitation, and; Phase 2.2 is a process evaluation that will involve interviewing stakeholders, MST therapists and employees, families, and young people. The dataset for the process evaluation will include questionnaires completed by parents and young people at baseline, mid-treatment, end of treatment, and 6 months after treatment. We will supplement these data with participant-level data linkage from MST sites and services. RESULTS: Accrual to the pilot stage of this project opened on 6th August 2021 and is due to close on 31st May 2022. We aim to publish the results of this feasibility study and process evaluation in 2023. CONCLUSIONS: The results of this feasibility study and process evaluation will inform the decision as to whether it is advisable to progress to a pilot clinical trial of MST for children at risk of criminal exploitation. TRIAL REGISTRATION: Trial registration: ISRCTN registry, ISRCTN16164816 on 25th January 2021- https://doi.org/10.1186/ISRCTN16164816 .

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.

Predictors and moderators of the response of adults with intellectual disabilities and depression to behavioural activation and guided self-help therapies.

BACKGROUND: No previous studies have reported predictors and moderators of outcome of psychological therapies for depression experienced by adults with intellectual disabilities (IDs). We investigated baseline variables as outcome predictors and moderators based on a randomised controlled trial where behavioural activation was compared with guided self-help. METHODS: This study was an exploratory secondary data analysis of data collected during a randomised clinical trial. Participants (n = 161) were randomised to behavioural activation or guided self-help and followed up for 12 months. Pre-treatment variables were included if they have previously been shown to be associated with an increased risk of having depression in adults with IDs or have been reported as a potential predictor or moderator of outcome of treatment for depression with psychological therapies. The primary outcome measure, the Glasgow Depression Scale for Adults with Learning Disabilities (GDS-LD), was used as the dependant variable in mixed effects regression analyses testing for predictors and moderators of outcome, with baseline GDS-LD, treatment group, study centre and antidepressant use as fixed effects, and therapist as a random effect. RESULTS: Higher baseline anxiety (mean difference in outcome associated with a 1 point increase in anxiety 0.164, 95% confidence interval [CI] 0.031, 0.297; P = 0.016), lower performance intelligence quotient (IQ) (mean difference in outcome associated with a 1 point increase in IQ 0.145, 95% CI 0.009, 0.280; P = 0.037) and hearing impairment (mean difference 3.449, 95% CI 0.466, 6.432; P = 0.024) were predictors of poorer outcomes, whilst greater severity of depressive symptoms at baseline (mean difference in outcome associated with 1 point increase in depression -0.160, 95% CI -0.806, -0.414; P < 0.001), higher expectation of change (mean difference in outcome associated with a 1 point increase in expectation of change -1.013, 95% CI -1.711, -0.314; p 0.005) and greater percentage of therapy sessions attended (mean difference in outcome with 1 point increase in percentage of sessions attended -0.058, 95% CI -0.099, -0.016; P = 0.007) were predictors of more positive outcomes for treatment after adjusting for randomised group allocation. The final model included severity of depressive and anxiety symptoms, lower WASI performance IQ subscale, hearing impairment, higher expectation of change and percentage of therapy sessions attended and explained 35.3% of the variance in the total GDS-LD score at 12 months (R2  = 0.353, F4, 128  = 17.24, P < 0.001). There is no evidence that baseline variables had a moderating effect on outcome for treatment with behavioural activation or guided self-help. CONCLUSIONS: Our results suggest that baseline variables may be useful predictors of outcomes of psychological therapies for adults with IDs. Further research is required to examine the value of these potential predictors. However, our findings suggest that therapists consider how baseline variables may enable them to tailor their therapeutic approach when using psychological therapies to treat depression experienced by adults with IDs.

Development and initial psychometric properties of the Warwick-Edinburgh Mental Wellbeing Scale-Intellectual Disability version.

BACKGROUND: The Warwick-Edinburgh Mental Wellbeing Scale (WEMWBS; Tennant et al., 2007) is yet to be validated in the intellectual disability (ID) population. The aim of this study was to report the development process and assess the psychometric properties of a newly adapted version of the WEMWBS and the Short WEMWBS for individuals with mild to moderate IDs (WEMWBS-ID/SWEMWBS-ID). METHOD: The WEMWBS item wordings and response options were revised by clinicians and researchers expert in the field of ID, and a visual aid was added to the scale. The adapted version was reviewed by 10 individuals with IDs. The measure was administered by researchers online using screenshare, to individuals aged 16+ years with mild to moderate IDs. Data from three UK samples were collated to evaluate the WEMWBS-ID (n = 96). A subsample (n = 22) completed the measure again 1 to 2 weeks later to assess test-retest reliability, and 95 participants additionally completed an adapted version of the adapted Rosenberg Self-Esteem Scale to examine convergent validity. Additional data from a Canadian sample (n = 27) were used to evaluate the SWEMWBS-ID (n = 123). RESULTS: The WEMWBS-ID demonstrated good internal consistency (ω = 0.77-0.87), excellent test-retest reliability [intraclass correlation coefficient (ICC) = .88] and good convergent validity with the self-esteem scale (r = .48-.60) across samples. A confirmatory factor analysis for a single factor model demonstrated an adequate fit. The SWEMWBS-ID showed poor to good internal consistency (ω = 0.36-0.74), moderate test-retest reliability (ICC = .67) and good convergent validity (r = .48-.60) across samples, and a confirmatory factor analysis indicated good model fit for a single factor structure. CONCLUSIONS: The WEMWBS-ID and short version demonstrated promising psychometric properties, when administered virtually by a researcher. Further exploration of the scales with larger, representative samples is warranted.

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.

Behavioural adjustment of children with intellectual disability and their sibling is associated with their sibling relationship quality.

BACKGROUND: Understanding sibling relationship quality is important, as it is associated with mental health outcomes in both childhood and adulthood. Arguably, these relationships are even more important for individuals with intellectual disability, as siblings can be important sources of care, support, advocacy and friendship for one another. The intellectual disability field, however, has a tendency to assume that the relationship lacks reciprocity, and that it is the sibling with intellectual disability who affects the sibling, and that this effect is somehow 'negative'. METHODS: We examined whether the behaviour problems and prosocial behaviour of 500 child sibling pairs, where one child has an intellectual disability, were associated with their sibling relationship quality. Measures included the Strengths and Difficulties Questionnaires and the Sibling Relationship Questionnaire. Family poverty, the gender of both children, birth order and whether the child with intellectual disability had autism or Down syndrome were also included in the analyses. RESULTS: Confirmatory factor analysis indicated an adequate model fit for the latent variables measuring sibling relationships. The final structural model found that the prosocial behaviour and internalising problems of the children with intellectual disability, their typically developing siblings' prosocial behaviours and sibling birth order were associated with intimacy-companionship in the sibling relationship. The internalising, externalising and prosocial behaviours of the children with intellectual disability, their siblings' externalising behaviours and sibling birth order were associated with antagonism-quarrelling in the sibling relationship. CONCLUSIONS: We found that the behaviours of both the child with intellectual disability and their sibling were associated with both 'positive' and 'negative' dimensions of their sibling relationship. This indicates a bidirectional and reciprocal effect.

"Connectedness" between people with intellectual disabilities and challenging behaviour and support staff: Perceptions of psychologists and support staff.

The tacit practical knowledge of psychologists and support staff to foster a real connection between support staff and people with intellectual disabilities and challenging behaviour was explored. Therefore, six dyads comprising individuals with intellectual disabilities and challenging behaviour and their support staff were video recorded during joint engagement in an activity. To tap into the implicit knowledge of professionals about when staff have 'a real connection' with a person with an intellectual disability, 10 psychologists and 10 support staff were asked to pinpoint these moments in the pre-recorded video compilation. They also shared their interpretations about what they considered to be a real connection. The results displayed that participants designated real connections as occurring when they noticed concrete interactions taking place. Based on thematic analysis of the data, four themes were identified that encapsulated what professionals deemed to be a real connection. In conclusion: joint engagement in an activity appears to be a context that fosters opportunities for real connection. Furthermore, support staff should adopt a sensitive attitude and create a safe atmosphere, to establish real connections.

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 willingness of UK adults with intellectual disabilities to take COVID-19 vaccines.

BACKGROUND: Given the much greater COVID-19 mortality risk experienced by people with intellectual disabilities (ID), understanding the willingness of people with ID to take a COVID-19 vaccine is a major public health issue. METHOD: In December 2020 to February 2021, across the United Kingdom, 621 adults with ID were interviewed remotely and 348 family carers or support workers of adults with ID with greater needs completed an online survey, including a question on willingness to take a COVID-19 vaccine if offered. RESULTS: Eighty-seven per cent of interviewees with ID were willing to take a COVID-19 vaccine, with willingness associated with white ethnicity, having already had a flu vaccine, gaining information about COVID-19 from television but not from social media, and knowing COVID-19 social restrictions rules. A percentage of 81.7% of surveyed carers of adults with ID with greater needs reported that the person would be willing to take a COVID-19 vaccine, with willingness associated with white ethnicity, having a health condition of concern in the context of COVID-19, having had a flu vaccine, being close to someone who had died due to COVID-19, and having shielded at some point during the pandemic. CONCLUSIONS: Reported willingness to take the COVID-19 vaccine is high among adults with ID in the United Kingdom, with factors associated with willingness having clear implications for public health policy and practice.

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.

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.

Group Virtual Mindfulness-Based Intervention for Parents of Autistic Adolescents and Adults.

Mindfulness-based approaches have been shown to be effective in improving the mental health of parents of youth and adults with autism and other developmental disabilities, but prior work suggests that geography and caregiving demands can make in-person attendance challenging. The purpose of this study was to evaluate the feasibility, acceptability and preliminary outcomes of a mindfulness-based group intervention delivered to parents virtually. It was feasible to deliver this manualized intervention. Twenty-one of 39 parents completed the intervention and completers reported high satisfaction ratings. Parents reported reduced levels of distress, maintained at 3-month follow-up, and increased mindfulness. Changes reported following intervention were similar to changes reported in a prior study of parents competing an in person mindfulness group.

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.

Family-based social capital of emerging adults with and without mild intellectual disability.

BACKGROUND: Family is recognised as an important context for the self-development of young adults in emerging adulthood, although very little research has addressed the perspective of young people with intellectual disability about their families by using self-report. This study examined how emerging adults with mild intellectual disability define their family support networks, compared with definitions of students without intellectual disability, within a social capital theoretical framework. METHODS: Fifty-three participants with mild intellectual disability and 53 students without intellectual disability were interviewed individually using the Family Network Method - Intellectual Disability (FNM-ID). Data from the FNM-ID relate to key social network measures on how individuals define their family groups, and how they perceive existing supportive relationships within their families. Participants with mild intellectual disability and students were compared on the FNM-ID social network measures. RESULTS: Participants with mild intellectual disability reported fewer family members who they considered significant to them than students without intellectual disability. They were less likely to include peers (i.e. friends and partners) and siblings in their significant family networks, had fewer relationships with family members in which they received or gave support, had fewer reciprocal support relationships and had a less central position in their family network. DISCUSSION: The family-based social capital of emerging adults with mild intellectual disability differed from that of students without intellectual disability. They may remain more dependent on their natural family for emotional support as their supportive networks have not necessarily made the transition to networks with emotionally close peer relationships.

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.

Who's challenging who training for staff empathy towards adults with challenging behaviour: cluster randomised controlled trial.

BACKGROUND: One in five adults with intellectual disabilities (ID) known to services display challenging behaviours (CBs), and these individuals are at risk for restrictive practices and poor care. Staff attitudes may contribute to the development and/or maintenance of CBs. We investigated the effectiveness of co-produced Who's Challenging Who? training delivered by people with ID to staff. METHOD: This study involved a cluster randomised controlled trial (RCT) of Who's Challenging Who? training with follow-up at six and 20 weeks post-randomisation. PARTICIPANTS: two staff from each of 118 residential care settings for adults with ID at least one of whom displayed aggressive CB. PRIMARY OUTCOME: Self-reported Staff Empathy for people with Challenging Behaviour Questionnaire. ANALYSIS: intention to treat of all randomised settings. ISCRTN registration: ISRCTN53763600. RESULTS: 118 residential settings (including 236 staff) were randomised to either receive training (59 settings) or to receive training after a delay (59 settings). The primary analysis included data from 121 staff in 76 settings (51% of staff, 64% of settings). The adjusted mean difference on the transformed (cubed) Staff Empathy for people with Challenging Behaviour Questionnaire score at the primary end point was 1073.2 (95% CI: -938.1 to 3084.5, P = 0.296) in favour of the intervention group (effect size Cohen's d = .19). CONCLUSIONS: This is the first large-scale RCT of a co-produced training course delivered by people with ID. Findings indicated a small positive (but statistically non-significant) effect on increased staff empathy at 20 weeks, and small to moderate effects for staff reported secondary outcomes in favour of the intervention group.