Examining Predictors of Self-Determination in Adults with Intellectual and Developmental Disabilities

This paper reports the results of an exploratory analysis of data from the Oklahoma National Core Indicators (NCI) project, examining the degree to which items related to opportunities for choice and control in the lives of adults with intellectual and developmental disabilities from the NCI Adult Consumer Survey predicted self-reported self-determination outcomes assessed with the Short Form of The Arc’s Self-Determination Scale: Adult Version. Findings suggest that several environmental factors related to choice and control opportunities impact self-determination and its essential characteristics. Being able to lock one’s door and having voting experience were both significant predictors. Interestingly, having a behavior plan was negatively associated with overall self-determination, self-regulation, and self-realization. However, limited numbers of participants were aware of their behavior plan or involved in developing it. Implications for the assessment of choice opportunities and the design and delivery of supports and services across the lifespan are discussed.     

Parents of Adults with Intellectual Disabilities: Quality of Life and Experiences of Caring

This study examined a UK sample of parents caring for their adult offspring with intellectual disabilities, and the factors contributing to their quality of life and experiences of caregiving. Structured interviews were conducted with 62 parents of adults with intellectual disabilities. On several indices of quality of life, parents did not seem to be functioning as well as caregiving parents in the US, or as well as adults in the general US population.The offspring's level of challenging behaviour and physical dependency and the parent's satisfaction with informal support were associated with parental quality of life. The salience that parents placed on their post‐parental life style was also associated with quality of life, with ‘captive’ parents faring more poorly than ‘captivated’ parents.     

Barriers to Caregiver Compliance with Eating and Drinking Recommendations for Adults with Intellectual Disabilities and Dysphagia

Background There is scant research on the subject of dysphagia and people with intellectual disabilities. This study explores the barriers which caregivers believe make following Speech and Language Therapists’ (SLTs) dysphagia management strategies more difficult. Method Semi‐structured open‐ended interviews were conducted with 46 caregivers who supported 40 intellectually disabled adults with dysphagia. Results Caregivers perceived particular difficulties in modifying food and drinks to safe consistencies, achieving the agreed positioning during mealtimes, and in using support and prompting strategies. Problematic support and prompting strategies included difficulties with pacing correctly; facilitating people to adequately relax and concentrate; observing and prompting people to pace suitably and take safe amounts of food and drink in each mouthful. Additional barriers identified included time pressures, staff turnover and insufficient reviewing of SLT management strategies by caregivers. Conclusions Findings suggest that additional training and monitoring is required to ensure caregivers are aware of their role and responsibility in promoting safe oral intake for adults with dysphagia and intellectual disabilities. Ongoing support is suggested for people with intellectual disabilities and dysphagia to help them understand the reasoning behind management strategies.     

Treatment of Self-Injurious Behavior in Adults with Intellectual and Developmental Disabilities: A Systematic Review

The current review summarized 54 peer-reviewed articles concerning the assessment treatment of self-injurious behavior (SIB) in adults with intellectual and developmental disabilities. Results indicated that functional analysis was most commonly used to identify the operant function of SIB. Noncontingent reinforcement, differential reinforcement, functional communication training and response blocking were found to be the most frequently implemented interventions across studies. The methodological quality of each study was evaluated using the Council for Exceptional Children quality indicator standards. None of the included studies met all indicators to be considered methodologically sound. Directions for future research and implications for practice are discussed.     

Caregiver Perceptions of the Understanding of Death and Need for Bereavement Support in Adults with Intellectual Disabilities

Background Care staff are an important source of information and support for people with intellectual disabilities following bereavement. The purpose of this study was to explore staff perceptions of service users’ conceptualizations of death, reactions to bereavement, required levels of support and staff confidence in providing post‐bereavement support. Method Forty‐two staff rated individuals with intellectual disabilities with whom they worked on a regular basis. Results In general, staff believed that service users had a good concept of death, though staff tended to overestimate levels of understanding and possibly underestimate the potential for dysfunctional behaviour post‐bereavement. Although staff expressed confidence in their ability to recognize grief symptoms, they were less confident in their ability to provide post‐bereavement support. Conclusions The overall picture was positive with good agreement between staff, though ensuring that staff consider the potential for psychopathology following bereavement is important in providing support. The implications for staff training and post‐bereavement support are considered.     

Menopausal Experiences of Women with Intellectual Disabilities

Background Little is known about the menopause in women with intellectual disabilities (ID) save that its onset is earlier than in the general population, and earlier still in women with Down’s syndrome (DS). This study directly explored menopausal experiences in women with ID, both with and without DS, with the aim of identifying levels of knowledge of the menopause and of its health and reproductive implications. Methods Information was collected from 45 women with ID (17 DS, 28 non‐DS; age 35–65 years) using a semi‐structured interview. Results Menopausal experiences of the women with and without DS were very similar. Most of the women were unaware of menopause‐associated changes in their body and few understood why they menstruated. Difficulties in disentangling behavioural consequences of menopausal symptoms from behaviours arising from other causes were evident. A need for better health education training and more accessible health resources was identified. Conclusions Promoting better awareness of menopause‐related health issues in women with ID seems warranted. Appropriately‐tailored health education materials need to be made more readily available.     

Religious Expression amongst Adults with Intellectual Disabilities

Background Although religion is an important part of many people's lives, little is known about the role of religion in the lives of people with intellectual disabilities. Method Semi‐structured face‐to‐face interviews were conducted with 29 people with intellectual disabilities of a range of faiths (various Christian denominations, Islam and Hindu dharma). Participants were asked about the meaning of religion for them, the role of religion in their lives and the attitudes of others towards religious expression. All interviews were audio‐recorded, transcribed and thematically analysed. Results Participants expressed strong religious identities. Prayer was a particularly popular form of religious expression, with other forms of religious expression often hindered by services or faith agencies. Some individuals expressed how their religious faith was not recognized by services or faith agencies. Conclusions Services and faith agencies need to recognize the importance of religion in the lives of many people with intellectual disabilities, and support religious expression in this group.     

Reactive Attachment Disorder Symptoms in Adults with Intellectual Disabilities

Background Studies with children suggest that reactive attachment disorder (RAD) is associated with pathogenic early care. Little is known about RAD in adults with intellectual disabilities, many of whom experience adversity and abuse in early life. We investigated whether RAD symptoms occur in this population, and explored whether hypothesized risk factors are associated with higher RAD symptom scores. Method Fifty adults with intellectual disabilities residing in long‐stay hospitals and their carers participated in a questionnaire survey of RAD symptoms, childhood experiences, and disabilities. Results Reactive attachment disorder symptoms were present in this sample, and symptom scores were independently associated with early childhood adversity, diminished with age, but were not associated with cognitive ability, gender, other disabilities, nor number of childhood years in institutional care. Conclusions As with children with RAD, it is possible that some maltreated adults with intellectual disabilities fail to develop stranger anxiety by the usual developmental age. Over decades, they may gradually learn.     

Therapy Expectations: Preliminary Exploration and Measurement in Adults with Intellectual Disabilities

Objectives To carry out a preliminary exploration and measurement of therapy expectancy in adults with intellectual disabilities through the development and psychometric evaluation of the therapy expectation measure (TEAM). Design The initial scale development phase combined top‐down theory‐driven and bottom‐up data‐driven processes to identify TEAM items and format. The subsequent scale evaluation phase piloted the TEAM and used correlational analyses to evaluate reliability and validity. Method Six adults with intellectual disabilities took part in semi‐structured interviews about therapy expectancy and motivation to identify TEAM items. A further 22 participants piloted the measure for initial psychometric evaluation. Results Preliminary psychometric evaluation confirmed that the TEAM has acceptable test–retest reliability and internal consistency. Assessment of construct validity found a strong and positive relationship with a measure of general self‐efficacy. Client expectations of therapy were largely positive and congruent with therapy as a goal‐oriented process in which they will be an active participant. However, a number of individuals were unclear about the reason for referral and felt a low level of involvement in the process. Client and carer perceptions of referral understanding were significantly different. Conclusions The TEAM may help clinicians to identify potential barriers to engagement in therapy and find ways of enhancing the therapeutic experience of adults with an intellectual disability. Further psychometric evaluation of the TEAMM with larger samples is required to confirm the factorial structure of the scale and enhance its clinical utility.     

Psychiatry of Elderly Compared to Younger Adults with Intellectual Disabilities

It is difficult to draw conclusions from previous literature regarding the rate of psychiatric disorders amongst elderly, compared to younger, adults with intellectual disabilities. This study investigates the prevalence of psychiatric disorders amongst adults with intellectual disabilities aged 65 years and over, living in Leicestershire, UK (n = 134), compared to a random sample of adults with intellectual disabilities aged 20–64 years, living in the same area (n = 73). Both groups had high rates of current psychiatric morbidity, but rates were significantly higher in the elderly group: 61.9% compared to 43.8%. The elderly group had higher rates of dementia, generalised anxiety disorder and past history of depression, when compared to the younger group. The two groups had equal rates of behaviour disorders, schizophrenia and autism. Dementia occurs at a much higher rate amongst people with intellectual disabilities (21.6%) than it does amongst the general population. This finding is in keeping with previous studies, but has received little attention and warrants further investigation.