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

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

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

Evidence-based planning and costing palliative care services for children : novel multi-method epidemiological and economic exemplar

Background: Children’s palliative care is a relatively new clinical specialty. Its nature is multi-dimensional and its delivery necessarily multi-professional. Numerous diverse public and not-for-profit organisations typically provide services and support. Because services are not centrally coordinated, they are provided in a manner that is inconsistent and incoherent. Since the first children’s hospice opened in 1982, the epidemiology of life-limiting conditions has changed with more children living longer, and many requiring transfer to adult services. Very little is known about the number of children living within any given geographical locality, costs of care, or experiences of children with ongoing palliative care needs and their families. We integrated evidence, and undertook and used novel methodological epidemiological work to develop the first evidence-based and costed commissioning exemplar. Methods: Multi-method epidemiological and economic exemplar from a health and not-for-profit organisation perspective, to estimate numbers of children under 19 years with life-limiting conditions, cost current services, determine child/parent care preferences, and cost choice of end-of-life care at home. Results: The exemplar locality (North Wales) had important gaps in service provision and the clinical network. The estimated annual total cost of current children’s palliative care was about £5.5 million; average annual care cost per child was £22,771 using 2007 prevalence estimates and £2,437- £11,045 using new 2012/13 population-based prevalence estimates. Using population-based prevalence, we estimate 2271 children with a life-limiting condition in the general exemplar population and around 501 children per year with ongoing palliative care needs in contact with hospital services. Around 24 children with a wide range of life-limiting conditions require end-of-life care per year. Choice of end-of-life care at home was requested, which is not currently universally available. We estimated a minimum (based on 1 week of end-of-life care) additional cost of £336,000 per year to provide end-of-life support at home. Were end-of-life care to span 4 weeks, the total annual additional costs increases to £536,500 (2010/11 prices). Conclusions: Findings make a significant contribution to population-based needs assessment and commissioning methodology in children’s palliative care. Further work is needed to determine with greater precision which children in the total population require access to services and when. Half of children who died 2002-7 did not have conditions that met the globally used children's palliative care condition categories, which need revision in light of findings

Psychological wellbeing 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

Escherichia coli-mediated impairment of ureteric contractility is uropathogenic E. coli specific.

BACKGROUND: Ureters are fundamental for keeping kidneys free from uropathogenic Escherichia coli (UPEC), but we have shown that 2 strains (J96 and 536) can subvert this role and reduce ureteric contractility. To determine whether this is (1) a widespread feature of UPEC, (2) exhibited only by UPEC, and (3) dependent upon type 1 fimbriae, we analyzed strains representing epidemiologically important multilocus sequence types ST131, ST73, and ST95 and non-UPEC E. coli. METHODS: Contractility and calcium transients in intact rat ureters were compared between strains. Mannose and fim mutants were used to investigate the role of type 1 fimbriae. RESULTS: Non-UPEC had no significant effect on contractility, with a mean decrease after 8 hours of 8.8%, compared with 8.8% in controls. UPEC effects on contractility were strain specific, with decreases from 9.47% to 96.7%. Mannose inhibited the effects of the most potent strains (CFT073 and UTI89) but had variable effects among other UPEC strains. Mutation and complementation studies showed that the effects of the UTI89 cystitis isolate were fimH dependent. CONCLUSIONS: We find that (1) non-UPEC do not affect ureteric contractility, (2) impairment of contractility is a common feature of UPEC, and (3) the mechanism varies between strains, but for the most potent UPEC type 1 fimbriae are involved

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