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

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

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

Change over a 16-month period in the psychological well-being of mothers of girls and women with Rett syndrome

PURPOSE: There is an emerging research literature on the experiences of family members of girls and women with Rett syndrome (RTT), but a lack of longitudinal data. METHODS: Fifty mothers whose daughters had RTT were surveyed 16-17 months after an earlier cross-sectional study. Measures completed at both time points focused on maternal positive and negative psychological well-being and their daughters' behavioral and emotional problems and RTT behavioral phenotype severity. RESULTS: Maternal stress, anxiety, and depression demonstrated at least moderate levels of stability. Maternal positive perceptions were also moderately stable over 16-17 months. Longitudinal analyses suggested that their daughters' behavioral and emotional problems rather than RTT behavioral phenotype severity predicted later maternal well-being. CONCLUSION: Mothers with RTT daughters experience chronic stress (persisting over time) but also ongoing positive perceptions. Practitioners should recognize positive perceptions and also consider targeted behavioral parent training to reduce behavior problems in individuals with RTT

Evidence for the Protective and Compensatory Functions of Resilience in Children with Intellectual and Developmental Disabilities

Children with intellectual and developmental disabilities (IDD) are more likely to engage in behavior problems than children without IDD. In the present study, we explored whether adverse life experiences and events were related to child behavioral and emotional problems. We also examined whether child resilience would act as a protective factor in this putative association between adverse experiences and child behavioral and emotional problems. Mothers of 310 children with IDD aged between 4 and 15 years old completed a cross-sectional online survey including measures of exposure to adverse life experiences, child resilience, and behavior and emotional problems. In moderated multiple regression models, we found that exposure to adverse life experiences had a positive association with child behavior problems and peer problems and that these associations were moderated by child resilience. Resilience served a protective function—lowering risk of problems for children exposed to adversity. Child resilience also served a compensatory function, being directly associated with fewer conduct and emotional problems and increased pro-social behavior. Child resilience may be an important factor in understanding the behavior and emotional problems of children with IDD. Further, especially longitudinal, research is needed. Interventions designed to increase children’s resilience may be beneficial for children with IDD

Informal caregivers of people with an intellectual disability in England: health, quality of life and impact of caring

There is wide variation in reported impact of caring on caregiver well‐being, and often a negative appraisal of caregiving. Researchers are beginning to question the robustness of the evidence base on which negative appraisals are based. The present study aimed to draw on data from a population‐representative sample to describe the health, quality of life and impact of caring of informal caregivers of people with an intellectual disability. Informal carers of people with intellectual disability (N = 260) were identified among 2199 carers in the English Survey of Carers in Households 2009/10. Generalised estimating equations explored the association between socio‐demographic and caring profile with quality of life, physical health status, and impact on psychological health and personal life. Compared to other caregivers, providing care to a person with intellectual disability was not associated with reduced quality of life. There was an 82% increased risk of reporting poorer health status, even though poorer health was not likely to be attributed to care‐giving. A higher risk of negative impact on personal life was seen in comparison with the wider group of caregivers, but not in comparison with more similar‐sized caregiver groups (mental health or dementia). Carers of people with intellectual disability were more likely to be struggling financially and have a high caring load. These factors were systematically related to lower well‐being. A uniformly negative appraisal of caring for people with intellectual disability was not supported by these English population‐representative data. Poverty and long care‐giving hours may make caregivers more susceptible to negative well‐being. Support for caregivers of people with intellectual disability should focus on alleviating those two factors