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. AIMS: This review aims to identify the available evidence regarding the use of proxy respondents in the measurement of internal states of people with intellectual disabilities. METHOD: The Arksey and O'Malley scoping review framework was used for this review, refined with the Joanna Briggs Institute Methodology. RESULTS: Results indicate there are some differences in the findings reported with respect to the efficacy of the use of proxy respondents. These may be due to a number of inconsistencies and weaknesses in examinations of their utility. CONCLUSIONS: If proxy-reports are to be useful in understanding the internal states of people with intellectual disability, researchers need to address the shortcomings revealed by this review.

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. Respondents were asked to describe their role in assisting an individual with intellectual disability to meet their goals for the future. Responses were analysed using a text analysis programme. RESULTS: Two major themes were identified: 'Support for self-determination' and 'Business-as-usual'. These themes were not entirely separate but had some overlap. There were indications that staff experienced competing demands in their role(s). CONCLUSION: Although central to person-centred planning, staff who work with adults with intellectual disabilities may not see support of self-determination as a key factor in creating a desired future.

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. METHODS: The researchers examined the original PSOC and proposed changes to overcome identified issues. A sample of 3056 Australian mothers provided data for the revised instrument's factor structure and psychometric analyses. RESULTS: We identified a number of problems with the original instrument, including factorial inconsistency, and multipart or potentially ambiguous questions. Of particular concern was the fact that all negatively worded items load onto one subscale and all positively worded questions load onto the other subscale. In addressing these issues, we produced a 16-item instrument (the Parenting Sense of Competence-Revised; PSOC-R) with strong internal consistency, excellent test-retest reliability and good evidence of construct validity including factorial validity and criterion-related validity. CONCLUSIONS: The PSOC-R maintains the intent of the original measure in assessing parenting Efficacy (10 items) and Satisfaction (6 items). It represents improvements in item construction including reductions in complexity, with no multipart items and a lower reading level requirement than previously. Data across four child age groups enhance the instrument's clinical utility.

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. AIMS: The purpose of this scoping review was to explore empirical studies reporting on the impact of siblings on the developmental outcomes of children with disability to better understand the areas that are influenced by siblings and the factors that contribute to this influence. METHOD: To identify relevant studies, the electronic databases of EBSCO, ERIC, Informit, Ovid, ProQuest and Scopus were searched. These searches were supplemented by direction from the authors on relevant literature and citation searches of papers identified for inclusion. Descriptive details were extracted, followed by details related to research design and findings of the studies. OUTCOMES AND RESULTS: Twenty-two papers were determined to meet inclusion criteria. Investigations of sibling influence have concentrated on children with ASD; other groups are not well represented. There is some evidence that having older siblings may be protective for children with ASD; however, this was not an invariable finding. There is too little consistency across studies to determine whether and how siblings influence development of children with disability. CONCLUSIONS AND IMPLICATIONS: Further work is required to understand the potentially crucial influence that siblings may have on developmental outcomes of children with disability.

Social Behaviors of Children with ASD during Play with Siblings and Parents: Parental Perceptions.

BACKGROUND: Both siblings and parents are important interactional partners for children with ASD, but we know little about whether these interactions differ between these two groups, or between older and younger siblings. AIMS: To gather data about how parents perceive the interactional behaviors displayed by their child with ASD in play with their typically developing siblings and their parents. METHODS AND PROCEDURES: Parents completed a questionnaire developed for this study about the behaviors their children with ASD demonstrated when interacting with a sibling or parent. Following factor analysis, a 29-item instrument with two factors was revealed. Factors were labelled Prosocial Interaction and Withdrawal/Agonism. OUTCOMES AND RESULTS: In some families, children with ASD were reported to display significantly higher levels of negative interaction when playing with their older siblings in comparison to younger siblings. When playing with their children with ASD, parents reported significantly more negative interactions compared to when their children with ASD played with younger siblings. There were few differences reported for play behaviors with parents versus older siblings. CONCLUSIONS AND IMPLICATIONS: Children with ASD appear to display different interactional behaviors depending upon their play partners within the family unit. This study could be used to inform researchers of different interaction strategies which may be useful in creating interventions.

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. Mastery motivation and self-regulation made unique contributions to adult outcomes, over and above the effects of cognitive ability. The findings provide powerful evidence about the important role of child and adolescent mastery motivation and self-regulation for the adult lives of individuals with Down syndrome.

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. Then, the present authors collected and analysed responses from 175 managers working in disability services in Queensland, Australia. RESULTS: The questionnaire demonstrated good content validity, concurrent validity and test-retest reliability. The participants believed strategies related to changing employee individual characteristics to be more effective than strategies aimed at improving environmental factors. CONCLUSIONS: This study provides important considerations regarding the professional development needs of front-line managers working in organizations that provide services to people with intellectual disability.

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. Although adult sibling relationships were reported to be warm, the quality of neither the current nor the past relationship was associated with the reported intention to provide care.

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. RESULTS: The majority of the participants did not demonstrate acquiescent responding. Individuals' responses to the Likert-type discrimination tasks were consistent, although this varied somewhat depending upon the abstractness of the task. There was some association between receptive language age equivalence scores and respondent performance. CONCLUSION: It is recommended that the pretest protocol (a) be modified to improve its reliability, and (b) this modified version be used with study participants who have an intellectual disability to ascertain the appropriate level of choice to be used for items that use a Likert response format.

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. At one year of age (corrected for prematurity for the preterm cohort), the mothers completed the Parenting Stress Index Short Form (PSI), the Edinburgh Postnatal Depression Scale (EPDS) and the Short Temperament Scale for Toddlers. The infants had neurodevelopmental assessment. The preterm and term groups were compared. RESULTS: Questionnaires were completed by 101 of the preterm mothers and 98 of the term mothers. The mean PSI Total Stress score was significantly higher for the preterm mothers (70.28 vs 64.52, p = 0.022), with 19% of the preterm group and 9% of the term group having high scores (p = 0.038).There was no group difference on the EPDS or measures of temperament, with disability being greater in the preterm infants. For the preterm group, maternal depression and infant temperament were independent predictors of Total Stress scores on multivariate analysis. CONCLUSIONS: Parenting stress in mothers of preterm infants at one year of age is significantly greater than that found in mothers of term infants. For preterm mothers, symptoms of depression and infant temperament are independent risk factors for higher levels of parenting stress.

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. Audio recordings were transcribed verbatim and thematically analysed. RESULTS: Three major themes emerged from the interview data: contextualising and understanding behaviour; occupational therapy - why and how?; and 'challenges, strengths and expanding horizons'. CONCLUSIONS: Participants saw themselves as providing an occupational perspective in the delivery of behaviour support, to individuals with behaviour support needs. They highlighted that this was achieved utilising their skills and knowledge about positive behaviour support strategies. Their approaches were seen as drawing on: their understanding of neurological function and how it relates to a person's occupational engagement; combining occupationally focussed approaches with behavioural analysis methodology to guide practice; and advocating for person-centred interventions. These observations form the basis for exploring ways in which occupational therapists can advance their contributions in positive behaviour support settings.

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. RESULTS: Temperament, maternal education, medical conditions and school experiences were associated with cognitive differences. Additional associations with rate of development were detected for negative mood, persistence, maternal education level and elementary school experience for several subtests. CONCLUSIONS: Early cognitive advantage and consistent opportunities to learn academic content appear to facilitate cognitive development, although this latter was confounded with ability and maternal education in this study. Data presented endorse research into interventions that enhance verbal and problem solving environments through-out early and middle childhood and target reductions in negative affect in relation to supporting cognitive development for individuals with Down syndrome.

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. At 4months of age (corrected for prematurity for the preterm babies), the mothers completed the Parenting Stress Index Short Form, the Edinburgh Postnatal Depression Scale (EPDS), the Dyadic Adjustment Scale (DAS) and the Short Temperament Scale for Infants (STSI). The preterm and term groups were compared. RESULTS: Questionnaires were returned from 86 of the preterm mothers and 97 of the term mothers. The mean Total Stress score for the preterm and term groups was 67.0 and 63.79 respectively (P=0.32) with 17% of the preterm and 9% of the term group having high scores (P=0.135). There were no differences of the EPDS and the DAS between the groups. The temperament of the preterm infants was similar to the term infants. For both groups, scores on the EPDS, DAS and the STSI were independent predictors of Total Stress scores on multiple regression analysis. CONCLUSION: Parenting stress in mothers of preterm infants during early infancy does not appear to be greater than that in mothers of infants born at term. For both groups of mothers, depression symptoms, marital satisfaction and infant temperament were independent risk factors for high levels of parenting stress.

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. Demands contributed significantly to poorer functioning; however, other measures did not. The women in this study appeared to underreport the level of difficulties they experienced. The caregiving role undertaken by these women does not appear to be sustainable under their current circumstances.

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. P. Hagen, & J. M. Sattler, 1986a , 1986b ) were developed for individuals with Down syndrome. Models were based on the assessments of 208 individuals who participated in longitudinal and cross-sectional research between 1987 and 2004. Variation in performance among individuals was large and significant across all subtests except Memory for Sentences. Scores on the Memory for Sentences subtest remained low between ages 4 to 30 years. Greatest variation was found on the Pattern Analysis subtest, where scores continued to rise into adulthood. Turning points for scores on the Vocabulary and Comprehension subtests appeared premature relative to normative patterns of development. The authors discuss development at the subdomain level and analyze both individual and group trajectories.

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. There were no significant group differences on motivation tasks, but mothers of children with Down syndrome rated their children significantly lower on motivation than did parents of typically developing children. There were some intriguing group differences in the pattern of correlations among observations and parent reports. The findings challenge long-held views that individuals with intellectual disability are invariably deficient in motivation.

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. However, the two groups differed in the relationships of maternal style with child persistence. Children with Down syndrome whose mothers were more supportive of their autonomy in the shared task displayed greater persistence when working independently on a challenging puzzle, while children of highly directive mothers displayed lower levels of persistence. For typically developing children, persistence was unrelated to maternal style, suggesting that mother behaviors may have different causes or consequences in the two groups.

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. Results of path analyses confirmed that the fit of the hypothetical model was consistent with predictions. The inferred direct pathways of influence between both total loneliness and global life satisfaction on motor ability were in the expected directions (i.e., inverse and positive relationships, respectively). Perceived Freedom in Leisure (PFL) and participation in team sports were two intermediate variables indirectly influencing these relationships. Although PFL was identified as a motivational process influencing participation levels in team sports it was noted that other psychological and environmental factors must also be considered when evaluating child-activity-environment fit for boys with developmental coordination disorder.

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. METHOD: The Attitudes to Sexuality Questionnaire (Individuals with an Intellectual Disability) (ASQ-ID: Cuskelly & Bryde, 2004) was modified slightly and questions about hypothesised stereotypical views of sexuality were added. A community sample of 261 adults completed this modified questionnaire, as well as a shorter version of the questionnaire about attitudes to sexual expression in typically developing adults. RESULTS: Factor analysis revealed one general factor associated with sexual rights, plus three other factors related to parenting, non-reproductive sexual behaviour, and self-control. There were few differences in attitudes towards male and female sexuality, and attitudes were only slightly less positive for individuals with an ID than for those without a disability. Views about parenting by people with an ID were more cautious than for other aspects of sexuality. CONCLUSIONS: The present study established the factor structure of an instrument for measuring attitudes towards the sexual expression of adults with an ID and provided normative data. Community attitudes towards the sexual rights of adults with an ID are generally quite positive.

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. RESULTS: Boys with DCD recorded significantly higher loneliness and lower participation rates in all group physical activities, whether structured (e.g., team sports) or unstructured (e.g., informal outdoor play) than boys without DCD. An inverse relationship between physical coordination ability and loneliness was mediated by participation in team sports. No other leisure pursuits were found to be significant mediators. Childhood physical coordination difficulties were significantly associated with loneliness. CONCLUSION: Participation in team sports acted as one potential mechanism mediating the inverse relationship between physical coordination ability and loneliness in boys. Occupational therapists can act as advocates to support boys with DCD who choose to participate in team sports. Further investigations are recommended to determine aspects of team sports environments that promote an optimal fit among child, activity, and environment.