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.

PurposeThe 1000 Families Study is a large, UK-based, cohort of families of children with intellectual disability (ID). The main use of the cohort data will be to describe and explore correlates of the well-being of families of children with ID, including parents and siblings, using cross-sectional and (eventually) longitudinal analyses. The present cohort profile intends to describe the achieved cohort.ParticipantsOver 1000 families of UK children with ID aged between 4 and 15 years 11 months (total n=1184) have been recruited. The mean age of the cohort was 9.01 years old. The cohort includes more boys (61.8%) than girls (27.0%; missing 11.1%). Parents reported that 45.5% (n=539) of the children have autism. Most respondents were a female primary caregiver (84.9%), and 78.0% were the biological mother of the cohort child with ID. The largest ethnic group for primary caregivers was White British (78.5%), over half were married and living with their partner (53.3%) and 39.3% were educated to degree level.Findings to dateData were collected on family, parental and child well-being, as well as demographic information. Wave 1 data collection took place between November 2015 and January 2017, primarily through online questionnaires. Telephone interviews were also completed by 644 primary caregivers.Future plansWave 2 data collection is ongoing and the research team will continue following up these families in subsequent waves, subject to funding availability. Results will be used to inform policy and practice on family and child well-being in families of children with ID. As this cohort profile aims to describe the cohort, future publications will explore relevant research questions and report key findings related to family 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.

Although mothers raising children with Intellectual Disability (ID) report poorer mental health than parents raising typically developing children, they also report feelings of positivity; both generally and specific to their child. To date little is known about the function of maternal positivity thus, we explored the putative compensatory and protective functions of maternal positivity, within both a cross-sectional and one-year longitudinal framework that examined the relationship between children’s behaviour and mental health problems with maternal mental health problems. Participants included 135 mothers of children with severe ID who were between 3 and 18 years of age. Multiple linear regression models investigated the potential function of maternal positivity. At a cross-sectional level, maternal positivity was found to be a significant independent predictor of maternal stress and moderated the impact of child behaviour problems on maternal parenting stress. Longitudinally, maternal positivity did not have a direct effect on later parenting stress nor function as a moderator. Findings from our cross-sectional analysis are consistent with the view that positivity serves a compensatory function. Further exploration is needed to understand the longitudinal function of maternal positivity.