Journal of Intellectual Disabilities

Smith–Magenis syndrome (SMS) is a genetic syndrome most often caused by a deletion on chromosome 17 or more rarely by a mutation in the retinoic acid-induced 1 gene. The aim of this study was to investigate the Developmental Behavior Checklist (DBC) profile of persons with SMS and the associations between behavioural and emotional problems, age, gender, adaptive behaviour and autism symptomatology. Twenty-eight persons with SMS were represented by their parents in this study. DBC Total scores are reduced with age, but they still show a mean that is clearly above the cut-off of 46. The differences between the age groups <9 years and 9–17 years (p = 0.024) and between the age groups <9 years and >18 years (p = 0.007) are significant. We found a significant decrease in behavioural and emotional problems with age in SMS. We did not find a relationship between adapted behaviour and communication and behavioural and emotional problems.

This service evaluation comprised pre- and post measures with service users and their carers on admission to and discharge from an assessment and treatment (A&T) unit. The Behaviour Problems Inventory (BPI), Psychiatric Assessment Scale for Adults with Developmental Disabilities Checklist–Revised (PASSAD) and World Health Organisations Quality of Life Scale (WHO-QOL 8; adapted for people with intellectual disabilities) were used to evaluate outcomes of their admission to the unit. Significant improvements were found after admission in relation to behaviour that challenges (measured by the BPI), mental health symptoms (measured by the PASSAD) and quality of life (measured by the WHO-QOL). The importance of completing outcome measures as feedback for the service user, team and wider service managers are discussed, but also in this political context when the role of A&T units are being questioned, the importance of showing good practice and clinical outcomes for individuals.

A retrospective chart study of patients on open-label aripiprazole treatment was conducted in the Netherlands to add to the knowledge of aripiprazole in children and young adults with mild and borderline intellectual disabilities (IDs). Fifty-three youths, mean age 14.7 ± 3.4 years and mean IQ 64.5 ±13.8, were included. Treatment responders were defined as “much improved” or “very much improved” based on the Clinical Global Impression -Improvement scale. For 83% of the patients, disruptive behavior was the main target symptom. The overall response rate was 30% after 1–4 weeks and 69% after 5–8 weeks. The 5–8 weeks responders showed a response rate of 64% at 22–26 weeks. Mild adverse events were observed in 53% of the patients of which fatigue and weight gain were the most common. Seven patients (13.2%) discontinued because of adverse events. In 53 children and young adults with mild and borderline IDs, aripiprazole was effective in both the short and the long term. No serious adverse events were observed.

Previous studies suggest that family members of people with intellectual disabilities prefer them to move to supervised living arrangements such as group homes. In Ireland, personalised arrangements are emerging, but families have had little exposure to this option. In this qualitative study, we explored the perspectives of family members following their relative’s move to personalised support options, mostly from group homes. Semi-structured interviews were conducted in 2011 with a family member of 17 people who had previously moved, with follow-up interviews held with 12 of them up to 18 months later. Thematic analysis on interview transcripts was conducted by three researchers. The family members spoke favourably of the new arrangements. A core theme of enabled independence emerged with subthemes of greater self-reliance in personal care, increased confidence, more social inclusion and gains for relatives. Reservations focussed on the need for more support hours, managing risk and loneliness.

Individuals assessed as having an intellectual disability often spend a significant amount of time in day treatment/day habilitation programs after they graduate from school. The quality of these programs varies widely and is not federally legislated. The purpose of the current study is both to explore factors that lead to higher satisfaction for participants in these programs and to better understand what participants want in a program. Using a grounded theory approach, researchers interviewed 25 participants, staff, and family members in focus group settings to collect qualitative data. Interviews focused on what worked and what could be improved at a program located in Western New York. Using the constant comparative method, themes emerged from the data that pointed to the importance of dignity and choice in a day program to facilitate empowerment, higher levels of satisfaction and self-confidence.

Children with intellectual and developmental disabilities have historically been at high risk for social exclusion and other vulnerabilities. The Western world has shifted away from institutionally-based services and toward community-based services that allow for greater social inclusion as well as for meeting individual developmental needs, and China is beginning the process of exploring how to make this shift. In 2014 and 2015, a situation analysis examining the lived experiences of parents of children with disabilities in Zhengzhou, Henan, China, was undertaken. Perceptions of strengths, needs, opportunities, and barriers experienced by parents of children in intact families (i.e. families where children with disabilities remain in their birth families) were explored by means of parent interviews and focus groups. Families identify experiences of stigma and acceptance related to traditional and alternative social constructions of intellectual and developmental disabilities, and how they use social networks and information-sharing to help develop community-based services.

Patient-oriented research engages patients and caregivers as partners contributing to all phases of the research process. This was the goal of the Strongest Families Institute Neurodevelopmental research, in Halifax, Nova Scotia, when they included a parent advisory committee, made up of parents and caregivers of children and adolescents with a neurodevelopmental condition, to complete their research project. The purpose of this qualitative research was to examine the experiences of researchers and parents of children with a neurodevelopmental condition who participated on a research study advisory committee for the Strongest Families Neurodevelopment research project. From interviews with both parents/caregivers and researchers that played a role on the advisory committee, four major themes emerged on how to negotiate and navigate their time on the committee and what worked well and what did not. This led to recommendations for future researchers and patients who may create or be a part of an advisory committee.

This study explored what helped and constrained children and young people with disability and high support needs, in feeling and being safe in institutional settings. Through adapted qualitative methods, 22 children and young people aged 7–25 years shared their conceptualizations of safety, along with facilitators and barriers to interpersonal safety in their everyday lives. Key themes were feeling safe and known in relationships, minimizing risk, having strategies and the opportunity to practice these, opportunities to learn about safety and supported transitions. The living patterns and environments of children and young people were different to their non-disabled peers, and they faced systemic barriers to activating safety strategies. Building meaningful prevention strategies for children and young people with disability requires specific skill in design and implementation. Without focused attention to their specific circumstances, measures promoting child safety may overlook the experiences of children and young people with intellectual disability.

Traumatic life events have pervasive impacts on health and well-being. A growing body of literature shows that people with intellectual and developmental disabilities are disproportionately impacted by trauma. Trauma-informed care (TIC) is a philosophy of service provision that is committed to preventing traumatization and re-traumatization and promoting healing. This study explores the perceptions of 130 leaders in the field of intellectual and developmental disabilities services on the adoption and practice of TIC through the analysis of quantitative data. Results indicated a disconnect between the level of TIC integration and perceptions detailing how well organizations are currently performing in aspects of TIC. Barriers to TIC included high staff turnover, lack of accessible mental health providers, lack of affordable training, stigma, and restrictive funding structures. Implications and recommendations for service organizations and educators are provided.

The use of smartphones and tablet devices in activities is believed to have great potential for enhancing the participation of people with intellectual disabilities. However, these technologies, in themselves, do not contribute to participation. What matters is how they are used. Employing the concept of domestication and insights gained from interviews with staff, this article examines conditions for the enhanced participation of youths with intellectual disability and how tablet devices are being integrated into social care settings, in particular.

The findings reveal two approaches to tablet integration. In one approach, tablet use is an organized practice focused on technology acquisition, skills improvement and entertainment. In the other, it is integrated into existing practices as an aid to interpersonal communication. The organized digital activities create conditions for the youths to participate like non-disabled peers. The greatest potential for enabling participation with each other is when the youths themselves initiate the use of tablets.

Children with Down syndrome (DS) using intensive computer-based phonics (GraphoGame, GG) were studied. The children’s independence and improvement in phonological processing, letter knowledge, word decoding, and reading strategies were investigated. Seventeen children (5–16 years) with DS participated in a crossover design through 8 weeks (one period), with three test sessions separated by 4 weeks. Children were randomly assigned to GG intervention or regular schooling (RS). All children completed one period and eight children completed two periods. A majority gradually became independent in managing GG. At the group level, very little benefit was found from working with GG. At the individual level, several children with mild to severe intellectual disabilities showed increased decoding of trained words. After one period of GG and RS, an increase in alphabetically decoded words was found. The finding suggests that when individual challenges are considered, computer-based phonics may be beneficial for children with DS in their educational setting.

People with intellectual disabilities who experience mental health difficulties often have high levels of self-criticism and shame. Compassion-focused therapy is a therapeutic modality effective in working with such feelings. This article follows on from a previous compassion-focused therapy group study exploring the impact of two compassion-focused therapy-based groups on how participants felt about themselves. Utilizing a mixed method design, the study illustrated that participants experienced higher levels of compassion and, overall, saw themselves more favourably by the end of the groups. They were also able to understand the basic concepts of compassion-focused therapy which reinforced previous study findings, suggesting that it is adaptable and clinically useful for people with intellectual disabilities.

The researchers conducted a qualitative case study to describe the experiences of two seventh grade students with mild intellectual disability as they engaged in mathematics word problems involving proportions. The researchers analyzed student performance in large group settings and with individualized instruction to gain perspective on the students’ tendencies with challenging mathematics content. During the teaching sessions in this study, one of the participants initially struggled with the proportions word problems, but demonstrated success after teachers connected new information in the tasks to students’ long-term memory and utilized gestures and diagrams to facilitate the students’ processing of information. Another participant succeeded more easily with proportions word problems which, along with the success of the other participant, provides support that students with a mild intellectual disability can succeed with challenging topics, such as proportions word problems.