Recent Trends and Future Directions in Research Regarding Parents with Intellectual and Developmental Disabilities.

PURPOSE OF REVIEW: This report updates research on parents with IDD and their children published since 2014. RECENT FINDINGS: Since 2014, a plethora of studies using large administrative databases in different countries support a contextual approach to understand why parents with IDD and their children may have worse outcomes than other families. In most studies, increased risk of ill health in women with IDD and health and developmental problems in their children were fully or partially accounted for by socioeconomic and psychosocial hardships. New research has found that pregnant women with IDD tend to have risk factors for pregnancy, birth, and postpartum complications that may contribute to adverse child outcomes. Intervention research is gradually becoming more contextualized. SUMMARY: More studies are needed on multicultural aspects of parenting, programs that could help parents with IDD overcome social and health disadvantages, comprehensive and coordinated service models that start during pregnancy, innovative parent support arrangements, parenting education for teens and young adults with IDD, use of technology, and dissemination and implementation of evidence-based programs.

Randomized Control Trial of the 3Rs Health Knowledge Training Program for Persons with Intellectual Disabilities.

BACKGROUND: Persons with intellectual disabilities (ID) experience a wide range of health problems. Research is needed on teaching persons with intellectual disabilities about their health to promote self-advocacy. This study used a RCT to evaluate a health knowledge training program for adults with intellectual disabilities and verbal skills. METHODS: Participants were randomly assigned to training (n = 12) or no training control (n = 10) groups. Topics included key body organs, systems, functions, health maintenance and illnesses. Participants played a game answering questions (e.g. 'What does the heart do?'). Instruction involved visuals (e.g., PowerPoint slides), cueing, modelling and feedback. The control group received pre-, post- and follow-up tests as the training group. RESULTS: The training group had significantly higher overall post-test and follow-up health knowledge test scores than the control group. CONCLUSIONS: Health knowledge training is one step in promoting health self-advocacy and better health in persons with intellectual disabilities.

Behavioral development and sociodemographics of infants and young children at higher and lower risk for autism spectrum disorders.

Identification of early signs of Autism Spectrum Disorder (ASD) could lead to earlier diagnosis and intervention. This cross-sectional study used the Parent Observation of Early Markers Scale (POEMS, Feldman et al. in J Autism Dev Disord 42:13-12, 2012) to identify early signs of ASD in 69 ASD high-risk (older sibling diagnosed with ASD) and 69 sex and aged-matched ASD low-risk second-born or later infants (no family history of ASD) between 6 and 36 months of age. Family sociodemographic comparisons were also made between the risk groups. The high-risk children had significantly more elevated POEMS items than the low-risk children at 12, 18, 24, 30 and 36 months of age, even when the children subsequently diagnosed with ASD were removed from the analyses. Families of the high-risk group had older parents, lower family income and fewer mothers working out of the home than the low-risk group. These sociodemographic variables were not significantly correlated with POEMS scores. The results suggest that high-risk infants may show signs of the broader ASD phenotype as early as 12 months of age that may be unrelated to observed sociodemographic family differences.

Parenting with disabilities: experiences from implementing a parenting support programme in Sweden.

This article reports on the initial stages of implementing an Australian-based education programme for parents with intellectual disabilities (IDs) in Sweden. The clinical utility of the programme, Parenting Young Children (PYC), in the new country context is explored through Swedish professionals' experiences in learning and using it. Study participants found PYC well suited for use in their working environment. Most of them reported the programme to have strengthened their work with parents. The programme was seen as benefiting both the study participants in their work with parents with IDs and these parents themselves, and its structure and content were found to be helpful in several ways. The checklists forming part of PYC were considered useful, but their purpose was sometimes misunderstood. The reported study helps to identify what is needed to improve the translation of the programme into the new country context, to promote appropriate and more effective use of programme materials.

Development and initial validation of a parent report measure of the behavioral development of infants at risk for autism spectrum disorders.

We developed and evaluated a new parent report instrument--Parent Observation of Early Markers Scale (POEMS)--to monitor the behavioral development of infants at risk for autism spectrum disorder (ASD) because they have older affected siblings. Parents of 108 at-risk infants (74 males, 34 females) completed the POEMS from child age 1-24 months. The POEMS had acceptable psychometric properties and promising predictive validity. Most concerning items were social and communication deficits, and intolerance to waiting. Results provide preliminary evidence that prospective parent report measures can help to detect early ASD symptoms in infants at biological risk. We invite researchers to join us in multi-center studies of the POEMS.

Factors affecting parenting stress among biologically vulnerable toddlers.

Parenting a child with, or at risk for, a developmental delay or disability can be stressful. Abidin's parenting stress model was used as a framework to examine how several maternal, child, and family factors predict parent stress outcomes. Stepwise regression models revealed that maternal and child factors were significant contributors to parenting stress. However, family factors (income and family functioning) were not retained. Parenting stress was lower when child (cognitive and adaptive ability) and maternal (depression and child care competence) characteristics were more positive. Child cognitive ability was a strong contributor to total parenting stress and two parenting stress subscales. Findings suggest that these parents need stress lowering interventions such as supportive child care, respite relief, and a child behaviour-focused program.

Behavioral relationship between autism and fragile x syndrome.

Previous researchers have reported autistic features in children with fragile X syndrome. We compared 21 children with pervasive developmental disorders (autism group) to 15 with fragile X syndrome on the Childhood Autism Rating Scale and the Reiss Scales for Children's Dual Diagnosis. The 7 children (47%) with fragile X who scored above the Childhood Autism Rating Scale cut-off (fragile X-autism group) were more impaired than the remaining children (fragile X-no autism) on Childhood Autism Rating Scale subscales related to emotion, visual and listening responses, and communication. The autism group's Reiss scores were higher than fragile X-no autism group, but not fragile X-autism group. Although the Childhood Autism Rating Scale identified almost 50% of children with fragile X as having autism, qualitative differences may exist in specific autistic-like behaviors between children with autism and children with fragile X.