Post-secondary education for young people with intellectual disabilities: A systematic review of stakeholders' experiences

Post-secondary education (PSE) is an important option in the educational and employment paths of students with intellectual disabilities (ID). However, PSE for young adults with ID is not in wide use across the world. Different issues might affect the geographical spread of PSE programmes. Some of these are related to the attitudes, expectations and/or funding for those programmes. In this systematic review, the PSE experiences of different stakeholder groups (young adults with ID, their parents, PSE staff and students without a disability) were examined by reviewing findings across 22 studies that investigated PSE for students with ID. This examination encompassed attitudes and motivation to engage with PSE, as well as stakeholders’ perceived barriers and facilitators in accessing and remaining in the three PSE models (separate, inclusive and mixed). Students with ID and their parents were the stakeholder groups least represented in the available evidence. Findings suggested that most stakeholder groups reported positive experiences of PSE derived mostly from gains in social skills and independence. Several barriers to accessing PSE were reported by each group, namely physical and academic barriers by students with ID, an understanding of the PSE system by their parents, and the lack of training by PSE staff. Evidence from the present review seems to indicate that inclusive PSE models were associated with a more positive experience across stakeholder groups

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

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

Barriers and Facilitators of Access to Early Intervention for Families With Children With Developmental Disabilities

Early identification and early intervention (EI) is important for families of children with developmental disabilities (DD). Access to EI has been shown to improve a range of child and family outcomes and is advocated in international policy. However, there are significant concerns regarding both the timeliness and levels of access to EI. The present review aimed to identify barriers and facilitators of access to EI. Methods: A literature review of research on the identification of needs and access to EI for families of children with DD was conducted. A general pathway of accessing EI, depicting the logical sequence of accessing support, was used to synthesise evidence on barriers and facilitators of access across three key phases: recognition of potential need; screening and/or formal identification of need; and access to EI. Results: Various factors which influenced the process of accessing EI were identified, such as system-wide processes, service design, referral procedures, funding streams, policies, and characteristics of the child, family and clinicians. Factors identified acted as barriers, facilitators, or modifiers of the process of accessing EI. Implications: Our results indicate that multiple factors appear to influence access to EI. Implications for the provision of EI and support for families of children with DD will be discussed in relation to facilitating access for families

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

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

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

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

Changing students’ attitudes to people with intellectual disabilities: findings from a natural experiment

Clinical psychologists are often involved in attempts to change attitudes towards people with intellectual disabilities. Sometimes this is with groups of carers and staff and sometimes with students (trainees or undergraduates). This study examined whether exposure to publicly available videos can change students’ attitudes towards people with intellectual disabilities (ID), and whether the content of videos (positive or negative) was associated with differential attitude change. Overall, 153 psychology undergraduates participated in the study, with 102 watching a negative content video (Winterbourne View) and 51 watching a positive content video. A quasi-experimental design compared two equal-sized groups matched on initial levels of attitudes (N=29 in each group). Results indicated that the content of video was associated with a different course of change: the positive video related to improvement in empowerment, similarity, proximal living attitudes, while the negative was associated with a worsening in attitudes. These findings are directly relevant to the training environments familiar to clinical psychologists. Videos can be useful means of changing attitudes where direct contact with people with ID is not possible. To achieve positive change in attitudes, videos need to bring out the strengths of people with ID by emphasising their achievements