The use of proxy measurement of internal states in people with intellectual disability: A scoping review.

Background: The measurement of internal states of people with an intellectual disability is challenging. Given these difficulties, proxy respondents are sometimes used. However, the literature provides some caution about the validity of the use of proxy respondents.

Preparing adults with intellectual disabilities for their future: How do support services staff view their role?

Background: Person-centred service delivery underpins current approaches to working with individuals with intellectual disabilities. We investigated views of staff from a service organisation regarding their roles in creating desired futures for adults with intellectual disabilities.

Methods: Data were gathered from staff of a large organisation that provided a range of services to adults with intellectual disabilities.

The Parenting Sense of Competence scale: Updating a classic.

Background: The Parenting Sense of Competence (PSOC) is a self-report measure of parenting efficacy and satisfaction that is widely used by researchers and clinicians in many countries. Despite its popularity, there have been some criticisms of the instrument. The aims of the current study were to identify and address shortcomings of the PSOC and to produce a revised measure that reflected the original constructs and that demonstrated robust psychometric properties.

The impacts of typically developing siblings on the developmental outcomes of children with disability: A scoping review.

Background: Siblings represent an important influence on children's development. It is possible that sibling influence on developmental outcomes differs in sibling pairs when one of the children has a disability. Previous research has tended to focus on outcomes for typically developing siblings when they have a brother/sister with a disability.

Associations of Child and Adolescent Mastery Motivation and Self-Regulation With Adult Outcomes: A Longitudinal Study of Individuals With Down Syndrome.

This 20-year prospective longitudinal study focuses on the contribution of mastery motivation and self-regulation to adult outcomes for individuals with Down syndrome. In earlier phases of the research, 25 participants completed measures of cognitive ability, mastery motivation and self-regulation in childhood (4 to 6 years) and adolescence (11 to 15 years). In the adult phase reported here, self-determination and adaptive behavior were assessed in 21 of the original participants at age 23 to 26 years.

Evaluating the Performance Improvement Preferences of Disability Service Managers: An Exploratory Study Using Gilbert's Behavior Engineering Model.

Background: Front-line managers play an important role in managing the performance of staff working in services for people with intellectual disability, but little is known about the practices they prefer to use to improve staff performance and whether these align with what research has shown to be effective.

Method: This study comprised two phases. First, the present authors tested the validity and reliability of a short questionnaire designed to evaluate managers' preferences for performance improvement practices.

Contributors to Adult Sibling Relationships and Intention to Care of Siblings of Individuals With Down Syndrome.

The contribution of childhood sibling relationships to adult sibling relationships and intention to provide care was investigated in a sample in which one member of each dyad had Down syndrome. Thirty-nine adult siblings of an adult with Down syndrome who had participated in a study of sibling relationships in childhood/adolescence provided data about the quality of current relationships and of their intention to provide care for their brother/sister with Down syndrome in the future. Only behavior problems in the child with Down syndrome predicted warmth of the current adult relationship.

Reliability of a method for establishing the capacity of individuals with an intellectual disability to respond to Likert scales.

Background: The study reported here was an examination of the reliability of a method for determining acquiescent responding and the capacity to respond to items using a Likert scale response format by adults with an intellectual disability.

Method: Reliability of the outcomes of these procedures was investigated using a test-retest design. Associations with receptive vocabulary were examined.

Parenting stress in mothers of very preterm infants -- influence of development, temperament and maternal depression.

Objective: To measure levels of parenting stress and postnatal depression in mothers of very preterm infants in comparison with mothers of infants born at term is the objective of this study. The study also aimed to explore factors associated with parenting stress in the mothers of the preterm infants.

Methods: One hundred and five mothers who delivered 124 babies at ≤30 weeks gestation were enrolled together with 105 term mothers who delivered 120 babies.

Contribution of occupational therapists in positive behaviour support.

Aim: Positive behaviour support employs specific strategies which aim to both reduce the incidence of behaviours of concern and enhance the quality of life of people with intellectual disabilities. This study aims to identify activities and experiences of occupational therapists working in behaviour support contexts to understand how they see their contributions in this area.

Methods: Semi-structured interviews were undertaken with 10 occupational therapists who have provided behaviour support for people with intellectual disabilities.

Individual and environmental characteristics associated with cognitive development in Down syndrome: a longitudinal study.

Background: Associations among cognitive development and intrapersonal and environmental characteristics were investigated for 89 longitudinal study participants with Down syndrome to understand developmental patterns associated with cognitive strengths and weaknesses.

Materials And Methods: Subtest scores of the Stanford-Binet IV collected between ages 4-30 years were analysed in multilevel models of age-related change. Predictor variables were systematically entered into the models to identify associations with development for each subtest.

Parenting stress in mothers of preterm infants during early infancy.

Objective: Mothers of preterm infants during the first year of life may experience stresses greater that those found in mothers of term infants. The aim of the study was to determine the levels of parenting stress and psychological well-being in mothers of very preterm babies in comparison to a control group of term mothers.

Methods: One hundred and five mothers who delivered 124 babies at ≤30weeks gestation were recruited together with 105 mothers who delivered 120 babies at term.

Cognitive development and Down syndrome: age-related change on the Stanford-Binet test (fourth edition).

Growth models for subtests of the Stanford-Binet Intelligence Scale, 4th edition ( R. L. Thorndike, E.

Sustainable caregiving? Demands upon and resources of female carers of adults with intellectual disability.

Female carers of adults with an intellectual disability are increasing in our communities as those with intellectual disability live into middle and old age. Twenty-seven carers between the ages of 45 and 85 years responded to questionnaires about demands, resources, and their health. Almost all were in the clinical range on the measure of psychological functioning.

Observational assessment and maternal reports of motivation in children and adolescents with Down syndrome.

Despite a lack of consistent empirical evidence, there has been an ongoing assumption that intellectual disability is associated with reduced levels of motivation. The participants in this study were 33 children with Down syndrome ages 10-15 years and 33 typically developing 3-8-year-old children. Motivation was measured through observational assessments of curiosity, preference for challenge, and persistence, as well as maternal reports.

Maternal support for autonomy: relationships with persistence for children with Down syndrome and typically developing children.

Maternal behaviors and child mastery behaviors were examined in 25 children with Down syndrome and 43 typically developing children matched for mental age (24-36 months). During a shared problem-solving task, there were no group differences in maternal directiveness or support for autonomy, and mothers in the two groups used similar verbal strategies when helping their child. There were also no group differences in child mastery behaviors, measured as persistence with two optimally challenging tasks.

Loneliness and life satisfaction of boys with developmental coordination disorder: the impact of leisure participation and perceived freedom in leisure.

A theoretical model linking motor ability with perceived freedom in leisure, participation in team sports, loneliness, and global life satisfaction was tested using linear confirmatory path analysis. Participants were 173 boys aged 10-13 years who filled in self-report questionnaires about perceived freedom in leisure, loneliness, and global life satisfaction. Parents of boys completed 7-day diaries and 12-month retrospective recall questionnaires about their son's leisure-time activity participation.

Attitudes to Sexuality Questionnaire (Individuals with an Intellectual Disability): scale development and community norms.

Background: Attitudes to the sexual expression of adults with an intellectual disability (ID) are one reflection of the inclusiveness of a community. Our capacity to measure attitudes towards this important aspect of adult life is limited by the lack of an appropriate instrument. The aim of this study was to continue the development of a recently published questionnaire and to establish normative data.

Boys with developmental coordination disorder: loneliness and team sports participation.

Objective: This study investigated the mediational role of team sports and other leisure occupations for boys ages 10 to 13 years in the relationship between physical coordination ability and perceptions of loneliness.

Method: Sixty boys with developmental coordination disorder (DCD) and 113 comparison boys without DCD completed a self-report measure of loneliness. Parents recorded information on leisure involvement over 7 days.

Young people with Down syndrome: a preliminary investigation of health knowledge and associated behaviours.

Background: Adults with intellectual disability have a range of significant health problems. If they are to live independently, they need to engage in behaviours that are health promoting, as well as avoiding behaviours that might directly lead to ill health. There is very little research about health-related knowledge and behaviour in this group.

Parental strategies for assisting children to wait.

This study examined parents' behaviours as they waited with their child. Children were presented with an attractively wrapped gift and then asked not to touch it until the experimenter returned from finishing some work in another room. Three parent groups and their children participated in the study - parents of children with Down syndrome, parents of children with intellectual disability from another cause, and parents of children who were developing typically.

General self-concept and life satisfaction for boys with differing levels of physical coordination: the role of goal orientations and leisure participation.

Participation in leisure-time activities, self-concept perceptions and individual dispositional goal orientations were examined as mediators of relationships between physical coordination and self-evaluations of life satisfaction and general self-concept for 173 boys aged 10-13 years. Participants completed seven-day activity diaries and 12-month retrospective recall questionnaires recording participation in leisure-time activities. Self-report measures of self-concept, global life satisfaction and dispositional goal orientations were also completed.

Adjustment, sibling problems and coping strategies of brothers and sisters of children with autistic spectrum disorder.

Background: Siblings of children with autistic spectrum disorder (ASD) express more problem behaviours and experience more difficulties in their relationships than do children in families where all children are developing typically. We know little about what contributes to these difficulties.

Method: Mothers of a child with ASD completed the Child Behavior Checklist (Achenbach, 1991) with respect to a non-disabled sibling.

Predictors of stress in mothers and fathers of children with fragile X syndrome.

This study examined parental and family stress and functioning where there is a child with fragile X syndrome. Mothers and fathers in 40 families were asked about their child with fragile X syndrome, family supports, their psychological stress, the marital relationship, and their family stress. Results indicate parents were well adjusted in terms of their levels of psychological stress and in their marital relationships, however, parents reported high levels of family stress.