Journal of Intellectual & Developmental Disability

BACKGROUND: Research suggests that women with intellectual and developmental disabilities are at increased risk for adverse pregnancy outcomes. Further, they report unmet perinatal care needs. This qualitative study examined clinician perspectives on barriers to providing perinatal care to women with intellectual and developmental disabilities. METHOD: We conducted semi-structured interviews and one focus group with US obstetric care clinicians (n=17). We used a content analysis approach to code data and analyse them for larger themes and relationships...

Background: Women with intellectual disability experience disparities in sexual and reproductive health care services. Methods: To explore perceptions of caring for persons with disability, including individuals with intellectual disability, we conducted open-ended individual interviews with 20 practicing physicians and three video-based focus group interviews with an additional 22 practicing physicians, which reached data saturation. Interviews were transcribed verbatim...

Background: Individuals with intellectual and developmental disabilities are more likely to engage in problem behaviours than peers with typical development. The purpose of this study was to provide descriptive and qualitative information about problem behaviours in children with fragile X syndrome (FXS) and how families respond to these behaviours. Method: We examined interview responses from 53 mothers of 9-year-old children with FXS. Results: Defiance, tantrums, inattention, stereotypy, and aggression were the most frequently reported problem behaviours of children with FXS...

Background: The current study investigated the impact of an intervention that included aided augmentative and alternative communication (AAC) technologies on the frequency of symbolic communication turns of school-age children, adolescents, and young adults with severe disability. Method: Nine students ages 8-20 were engaged in interactive activities using an aided AAC system with visual scene displays (VSDs; concepts embedded within a photograph of a naturally occurring event), and "just-in-time" (JIT) programming (the capability to add new contexts "on the fly")...

Background: Autism Spectrum Disorder (ASD) is characterised by altered social patterns, often associated with increased stress. While puberty is associated with increased stress, there is limited research on stress response to social interaction in adolescents with ASD. The study investigated stress response to semi-structured, videogame-based interaction in adolescents with and without ASD, and the impact of puberty. Method: Twelve adolescents with ASD and 12 typically developing (TD) peers participated in a semi-structured, videogame-based social interaction ...

Background: Understanding adaptive behaviour variability in children with autism spectrum disorder (ASD) may have important implications for early intervention. The purpose of this study was to explore whether autism symptom severity and caregiver depression affected adaptive behaviour in young children with ASD. Method: Data were collected from 60 primary caregivers of children aged 2-6 years with ASD. A factorial multivariate analysis of covariance was conducted to investigate if different levels of autism symptom severity and caregiver depression affected communication, socialisation, and daily living skills, after controlling for child age...

Background: Social support has been described as a vital resource for families with children with disability. Although the benefits of social support have been described, little is known about the utilisation patterns in families of young children with autism spectrum disorder (ASD). Method: In a community sample of 78 American families with children (2-6 years) with ASD, this study examined the utilisation and usefulness of social support. Child, family, and service variables related to social support were explored...

Background: Retrospective parental reports have often been used to identify the early characteristics of children later diagnosed with a developmental disorder. Method: We applied this methodology to document 13 parents' initial concerns about the development of their 17 children later diagnosed with fragile X syndrome (FXS). Parents were additionally asked about when they noticed the emergence of behavioural signs related to FXS. Results: More than half of the parents reported initial concerns prior to the child's first birthday and in most cases it was deviant motor behaviours that caused the first concerns...

BACKGROUND: The diagnostic process for autism spectrum disorder (ASD) can be difficult for families. Growing evidence suggests that the diagnostic process may vary as a function of sociodemographic factors, such as socioeconomic status. The purpose of this study was to extend findings related to families' experiences obtaining a diagnosis and accessing services for their young child with ASD. METHOD: A mixed methods approach was used in this study, in which 46 families with children with ASD participated...

BACKGROUND: This paper explores how group home staff in Victoria, Australia, responded to residents with an intellectual disability (ID) as they developed age-related health conditions. METHOD: The analysis was based on a longitudinal study that followed 17 ageing group home residents over a 3-year period. Eighty-three interviews were conducted with 30 group home staff in 17 group homes. Dimensional analysis, a variant of grounded theory, guided data collection and analysis...

BACKGROUND: Hastings (2010) has recently emphasised 3 aspects in the training of staff who serve clients with mild to moderate intellectual disability and challenging behaviour (CB): Staff attitudes, self-awareness, and clients' perspectives. This study investigates whether programs include these aspects. METHOD: A systematic search yielded 11 relevant articles. RESULTS: Generally, all programs aimed to improve staff knowledge and skills. Client variables concerned frequencies and severities of CB...

BACKGROUND: Social inclusion is a widely acknowledged goal; who is best positioned to provide support and how support is delivered are key questions. Using Active Mentoring training, members of community groups mentored a person with intellectual disability and supported their inclusion in that group. METHODS: Interviews with 14 mentors explored their experiences of supporting a previously unknown person with intellectual disability to participate in their community group...

BACKGROUND: According to the literature, children with Down syndrome (DS) have difficulties recognising facial expressions. Yet abilities to recognise emotional expressions are often assessed in tasks that imply comprehension of words for emotions. We investigated the development of these abilities in children with DS in a longitudinal study that did not involve lexical knowledge of emotions. METHOD: Children with DS and nonspecific intellectual disability and typically developing children matched for developmental age (DA) were assessed once a year over 3 years...

BACKGROUND: Alcohol use and misuse may be lower in people with intellectual disability (ID) than in the general population but may be related to offending. METHOD: Alcohol-related crime and history of alcohol use was recorded in 477 participants with ID referred to forensic ID services and related to offending. RESULTS: Level of alcohol-related crime and history of alcohol misuse was lower than in some previous studies at 5.9% and 20.8%, respectively...

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...

BACKGROUND: Research findings on vocabulary development (1) in children with Down syndrome are inconsistent. This study aimed to analyse the developmental trend of vocabulary growth in children with Down syndrome and the relationships between vocabulary and chronological and developmental age. METHOD: Children's vocabulary size was assessed by a parental report (the Italian version of the MacArthur-Bates Communicative Development Inventories [CDI]). A longitudinal study, involving 18 children with Down syndrome, and a cross-sectional study, involving 27 children with Down syndrome, were conducted...

BACKGROUND: The Revised Irrabeena Core Skills Assessment (RICSA) is used in formal accommodation services and evaluates the functional skills of adults with an intellectual disability. The assessment is used to inform training for skills development. This study focused on establishing evidence for interrater reliability of the RICSA. METHOD: The RICSA was completed by 101 staff members on 30 adults living in group homes. Interviews were conducted with 9 staff members in order to identify potential issues that may affect the reliability of the assessment...

BACKGROUND: The aim of this paper was to evaluate the reliability and validity of the Equity Perception Scale - Intellectual Disability Services (EPS-IDS), a detailed measure of staff equity perceptions in services for people with intellectual disability (ID). The EPS-IDS contains 3 relationship indices that assess staff relationships with their employing organisation, their co-workers, and service users. METHOD: Postal questionnaires were used to collect quantitative data from a purposive sample of ID service staff...

BACKGROUND: Motivational interviewing is a promising method to increase treatment motivation for people with mild intellectual disability and challenging behaviour. The purpose of the present study was to identify how professionals could adapt motivational interviewing techniques for use with clients. METHOD: We conducted semistructured qualitative interviews and focus groups with 26 clients, parents, and professionals. A general inductive approach led to the identification of multiple core themes...

BACKGROUND: The Actiwatch is increasingly being used to investigate sleep. The aim of this study was to investigate which sensitivity setting of the Actiwatch is most suitable to detect sleep disturbance in older adults with intellectual disability (ID). METHOD: Two Actiwatch types were compared to polysomnography (PSG) in 10 older adults with mild ID, using a 1-min epoch-to-epoch comparison. Outcome measures were sleep detection percentage, wake detection percentage, and overall accuracy of both Actiwatches, and several sleep parameters...