Active Support Measure: a multilevel exploratory factor analysis.

BACKGROUND: Active Support is a person-centred practice that enables people with intellectual disabilities (IDs) to engage in meaningful activities and social interactions. The Active Support Measure (ASM) is an observational tool designed to measure the quality of support that people with IDs living in supported accommodation services receive from staff. The aim of the study was to explore the underlying constructs of the ASM. METHODS: Multilevel exploratory factor analysis was conducted on ASM data (n = 884 people with IDs across 236 accommodation services) collected during a longitudinal study of Active Support in Australian accommodation services. RESULTS: Multilevel exploratory factor analysis indicated that 12 of the ASM's 15 items loaded on two factors, named Supporting Engagement in Activities and Interacting with the Person. CONCLUSIONS: The 12-item ASM measures two dimensions of the quality of staff support. Both technical and interpersonal skills comprise good Active Support.

A prospective study of hospital episodes of adults with intellectual disability.

BACKGROUND: Previous research has shown poor hospital experiences and dire outcomes for people with intellectual disability. The main objective of this study was to prospectively track episodes for adults with intellectual disability (ID) in Australian hospitals, with a focus on indications of the quality of care provided. METHODS: A prospective audit of hospital records over 35 months yielded quantitative data about patient characteristics, frequency and length of hospital episodes, diagnostic assessments and outcomes, post-emergency department (ED) destinations and post-discharge recommendations. Fifty participants were recruited largely by identification on hospital ED entry. An audit of patients' hospital records was conducted towards the end of hospital episodes, using a tool developed for the study. RESULTS: Participants were mostly men (70%), aged 42.9 years on average, living mostly with family (46%) or in supported accommodation (44%). Of 157 recorded episodes, 96% started in ED,  85% required urgent or semi-urgent care and 62% were in the first 3 months of study participation. Average time in ED exceeded the 4-h national benchmark, met in 40% of episodes. One or more diagnostic assessments were conducted in 91% episodes and others in short stay units. Almost half (49%) resulted in a ward stay. With an extreme data point removed, <1-35 days were spent in wards. The most frequent diagnosis in 75% of episodes was for digestive problems, followed by nervous system problems then injuries. Median length of bed stays reflected data available for Australian refined diagnosis-related groups. High hospital re-presentations were found: for 67% of episodes in total, 26% (n = 12) of which were within 72 h and 59% (n = 23) within 30 days. CONCLUSIONS: Adults with ID presented frequently to ED and often had lengthy stays. We found no indication of poor care practices in terms of hospital staff willingness to keep patients in ED and conduct of diagnostic assessments. Frequent re-presentations, however, indicated failed hospital care at some level.

Weight, nutrition, food choice, and physical activity in adults with intellectual disability.

BACKGROUND: The aim of this study was to describe the nutrition, food choice, physical activity and weight status in a group of adults with intellectual disability (ID) in Victoria, Australia. METHOD: Disability workers and adults with ID were recruited through disability services. In total, 51 disability workers (11 men, 40 women) and 68 (47 men, 21 women) adults with ID participated in the research. Disability workers provided information about the nutrition, food choice and physical activity levels of adults with ID through a questionnaire administered by a general practitioner or research nurse. The questionnaire also included The Australian Nutrition Screening Initiative checklist. RESULTS: Body Mass Index was in the healthy range for only 37.5% of participants and in the obese range for almost half (41%). Similarly, the majority of participants had an abdominal circumference in a range that put them at increased or substantially increased risk of metabolic complications. The mean score obtained on the Australian Nutrition Screening Initiative checklist indicated a moderate risk of malnutrition (M = 4.2); however, 17.6% of participants achieved scores that put them in the high-risk category. More than half of the participants were reported to have a little choice in the type of food they ate and when they ate. Physical activity data indicated that the majority of participants (60.3%) did not meet national physical activity guidelines. CONCLUSIONS: These findings suggest that people with ID are at risk of developing diseases associated with obesity, inactivity, and poor nutrition. Strategies to encourage people with ID to engage in physical activity and healthy eating are, therefore, a matter of priority and should involve their disability workers.

The nature of affect attunement used by disability support workers interacting with adults with profound intellectual and multiple disabilities.

BACKGROUND: The interactions experienced by adults with profound intellectual and multiple disabilities (PIMD) with their disability support workers (DSWs) may have a large impact on life quality. However, defining good-quality interaction has presented challenges for this group. It has been suggested that in typically developing infant-mother dyads, the presence of affect attunement may be an indicator of quality. Affect attunement refers to the recasting of one person's affect by another with emphasis. METHOD: The presence and nature of affect attunement in interactions between 21 pairs of adults with PIMD and their DSWs were explored in this study. Natural interactions were videorecorded for 21 pairs of adults with PIMD and their DSWs. The recordings were analysed for the presence and nature of affect attunement incidents, and analysed using descriptive statistics. RESULTS: Affect attunement incidents were observed in 16 of the pairs. The DSW's attunement behaviour was in response to subtle, short duration behaviours of participants with PIMD. CONCLUSION: These brief moments of connection may be a basis of good-quality interaction.

Taking each day as it comes: staff experiences of supporting people with Down syndrome and Alzheimer's disease in group homes.

BACKGROUND: Disability staff are being increasingly required to support adults with Down syndrome who develop Alzheimer's disease. They have little understanding of the nature of care required, and may lack input from aged care and dementia services, which lack knowledge of intellectual disability. The aim of this study was to report on the experiences of disability staff in group homes supporting residents with Down syndrome and Alzheimer's disease in relation to their under understanding of what was happening to these residents, their responses to them, and how they felt about their support role. METHOD: Disability support staff for nine adults with Down syndrome who had a diagnosis of Alzheimer's disease were interviewed twice, over intervals of 6-9 months. Interviews were transcribed and analysed for themes. RESULTS: Three key themes emerged - (i) struggling to understand change, (ii) taking each day as it comes, and (iii) he's got a disability and that's our job. CONCLUSIONS: Staff had only limited understanding of how Alzheimer's disease impacted the adults with Down syndrome, their responses to changes were ad hoc, and they used strategies on a trial and error basis. They were committed to providing care, but at the risk of rejecting input and support. The need for collaboration across disability, and aged and disability care was evident to facilitate aging-in-place and planned care transitions.

Psychometric comparison of the Motivation Assessment Scale (MAS) and the Questions About Behavioral Function (QABF).

BACKGROUND: The Motivation Assessment Scale (MAS) and the Questions About Behavioral Function (QABF) are frequently used to assess the learned function of challenging behaviour in people with intellectual disability (ID). The aim was to explore and compare the psychometric properties of the MAS and the QABF. METHOD: Seventy adults with ID and challenging behaviour and their disability support workers participated in the study. Support workers completed the MAS and QABF regarding a challenging behaviour that they identified as causing most concern. RESULTS: Both measures demonstrated good internal consistency. Based on the intra-class correlation coefficient, inter-rater reliability of the MAS and QABF was acceptable for sub-scale scores, but not for individual items. Convergent validity, as reflected by correlations between functionally analogous scales, was satisfactory, but there was low agreement between the MAS and QABF on the function of challenging behaviour. Factor analysis of the QABF revealed factors that clearly corresponded to the five factors reported by the developers, four of which were well determined. Similar analyses of the MAS yielded a four-factor solution, however, only one factor was well determined. CONCLUSION: The psychometric properties of the MAS and QABF were similar, and item-by-item reliability was problematic. The results suggest that both measures may prove unreliable for assessing the function of challenging behaviour among adults with ID. In developing interventions to address challenging behaviour, other techniques (e.g. observations) should be used to supplement information from these measures.

The human rights context for ethical requirements for involving people with intellectual disability in medical research.

BACKGROUND: The history of ethical guidelines addresses protection of human rights in the face of violations. Examples of such violations in research involving people with intellectual disabilities (ID) abound. We explore this history in an effort to understand the apparently stringent criteria for the inclusion of people with ID in research, and differences between medical and other research within a single jurisdiction. METHOD: The history of the Helsinki Declaration and informed consent within medical research, and high-profile examples of ethical misconduct involving people with ID and other groups are reviewed. The UN Convention on the Rights of Persons with Disabilities is then examined for its research implications. This background is used to examine a current anomaly within an Australian context for the inclusion of people with ID without decisional capacity in medical versus other types of research. RESULTS: Ethical guidelines have often failed to protect the human rights of people with ID and other vulnerable groups. Contrasting requirements within an Australian jurisdiction for medical and other research would seem to have originated in early deference to medical authority for making decisions on behalf of patients. CONCLUSIONS: Stringent ethical requirements are likely to continue to challenge researchers in ID. A human rights perspective provides a framework for engaging both researchers and vulnerable participant groups.

Reliability and validity of the revised Triple C: Checklist of Communicative Competencies for adults with severe and multiple disabilities.

AIMS: Few tools are available to assess the communication skills of adults with severe and multiple disabilities functioning at unintentional to early symbolic levels. An exception is the Triple C: Checklist of Communicative Competencies. In this study, aspects of support worker and clinician agreement, internal consistency and construct validity of a revised version of the Triple C were explored. METHOD: Triple C checklists were completed for 72 adults with severe intellectual disabilities (ID) by 118 support workers and stages were assigned by the researchers. Two support workers completed checklists for each of 68 adults with ID. Three researchers also conducted direct observations of 20 adults with ID. RESULTS: The average support worker agreement for items across the five stages of the Triple C ranged from 81% to 87%; agreement for stage assignment based on first and second support worker checklists was moderate to high (k = 0.63). Internal consistency was high (KR20 = 0.97); the stages were found to tap one factor (accounting for approximately 74% of variance), interpreted to be unintentional to early symbolic communication. Agreements between stages based on researcher observations and support worker-completed checklists were 35% and 71% across first and second support workers. CONCLUSION: The revised Triple C provides a reliable means of gathering data on which to determine the communication skills of adults with severe and multiple disabilities. The results support a collaborative use of the Triple C, such that a speech-language pathologist or other communication specialist works with a support worker to ensure understanding of the skills observed and development of appropriate intervention strategies.

Checklists for general practitioner diagnosis of depression in adults with intellectual disability.

BACKGROUND: In Australia, diagnosis and management of depression in adults with intellectual disability (ID) often occurs within the primary care setting. Few tools are available to assist general practitioners (GPs) in the diagnostic process. The study aim was to assess properties of carer and GP checklists developed to address this problem. METHOD: Participants were 49 adults with ID and their paid carers (support workers), and GPs for 27 adults. Data from carer and GP checklists were gathered, in addition to carer completed Developmental Behaviour Checklist-Adults (DBC-A). Adults with ID also received a comprehensive psychiatric assessment. RESULTS: Both checklists demonstrated good internal consistency (KRS-20 = 0.90). A factor analysis of the carer checklist indicated a single factor on which three section totals had loadings of greater than 0.722 (depressed mood, loss of interest, and social interaction and communication). This factor was interpreted to be depression. The GP checklist data were insufficient for factor analysis, but section totals were moderately correlated with most corresponding carer checklist section totals. Carer section totals related to depression also correlated highly with the DBC-A Depression sub-scale, demonstrating good concurrent validity. Contrasting results were obtained for the GP checklist. Most (n = 42) of the participants were diagnosed with a psychiatric disorder, precluding the testing of checklist specificity and sensitivity. CONCLUSION: The carer checklist shows promise as a means of gathering information needed by a GP in the diagnosis of depression in adults with ID. Further research into its underlying properties and clinical uses of a combined depression checklist is warranted.

Further examination of relationships between life events and psychiatric symptoms in adults with intellectual disability.

BACKGROUND: It has been proposed that people with intellectual disability (ID) might be similar to the general population in the way they respond to significant life events. Some preliminary findings have demonstrated that adults with ID who have experienced recent life events have an increased probability of having psychiatric problems. The aims of the present study were to determine whether previous findings can be replicated, and to examine the influence of additional diagnoses associated with ID on the strength of relationships between life event frequency and psychiatric problems. METHODS: Adults with ID (n = 624), living either in staffed community accommodation or in family or foster homes, were assessed on the Developmental Behaviour Checklist for Adults (DBC-A) and a 37-item life events checklist. Carers who knew the person well acted as proxy informants. RESULTS: People living in staffed accommodation experienced more life events than people living with natural or foster families. Life event frequency predicted DBC-A total score, five of six sub-scale scores, and caseness status, after significant demographic factors were taken into account. However, the strength of correlations between life event frequency and DBC-A total score varied among sub-groups identified by type of developmental disability and level of ID. CONCLUSIONS: Weak but significant associations between emotional and behavioural problems and life events experienced by adults with ID were demonstrated, but it was also shown that the strength of such associations varies among sub-groups of this heterogeneous population. Future research needs to take account of the circumstances surrounding the life changes, the period of time over which changes might have taken place, and the meaning that the person might attach to the changes. Research into the causal relationship between exposure to life events and the onset of psychiatric problems is also warranted.

Phonological awareness and oral reading skill in children with Down syndrome.

The existence of a necessary association between phonological awareness (PA) and oral reading development has been questioned using evidence from children with Down syndrome. In this study, 22 children with Down syndrome (between the ages of 6;7 and 10;3) initially completed tests of receptive language, cognitive function, oral reading, and PA. Reading and PA were reassessed approximately 9 months later. Better oral reading was associated with superior phoneme segmentation skills on reassessment. Furthermore, there was some evidence that early segmentation ability predicted later nonword reading, but not the reverse. The results indicate an association between PA and early oral reading ability in children with Down syndrome and are interpreted within a theoretical view of reading development in which PA plays a central role.

Efficacy of a parent-implemented early language intervention based on collaborative consultation.

A group of five preschool children with developmental disability and their mothers participated in a study into the efficacy of a parent-implemented language intervention. Each parent was included in the team as a consultee, with a speech pathologist and special educator acting as consultants within a collaborative consultation process. Treatment for each child was developed using this process, with specific strategies to increase language production skills decided by the team. Strategies were used within an interactive model of early language intervention. The effectiveness of treatment was determined within a multiple baseline design. For three children, the impact of treatment was evident, but the results were not replicated for the other two children. Descriptive analysis of mothers' communicative behaviours indicated that, following treatment, they tended to direct more utterances to their children, used more models, fewer questions and directives, and more (although limited) teaching strategies.

Levobunolol 0.5% and timolol 0.5% to prevent intraocular pressure elevation after neodymium:YAG laser posterior capsulotomy.

PURPOSE: To evaluate the prophylactic effect of levobunolol 0.5%, timolol 0.5%, or vehicle in reducing the incidence of postoperative intraocular pressure (IOP) spikes of 5 and 10 mm Hg or more in patients having neodymium:YAG (Nd:YAG) laser posterior capsulotomy. SETTING: Miami Vision Center, Coral Gables, Florida; Cullen Eye Institute, Baylor College of Medicine, Houston, Texas; Cincinnati Eye Institute, Cincinnati, Ohio; South Texas Cataract and Glaucoma Center, San Antonio, Texas; Mid-South Eye Foundation, Memphis, Tennessee, USA. METHODS: This prospective, double-masked, randomized study comprised 144 patients having Nd:YAG laser posterior capsulotomy in one eye. One drop of the test medication was administered preoperatively and one drop on the evening after surgery; IOP was measured preoperatively and 1,2,3 and 24 hours postoperatively. RESULTS: Intraocular pressure elevations of 5 mm Hg or more were seen in 1 of 60 patients (2%) in the levobunolol group, 4 of 54 (7%) in the timolol group, and 10 of 28 (36%) in the vehicle group. These elevations occurred significantly more frequently in the vehicle group than in the levobunolol (P < .001) or timolol (P < .004) groups. Elevations of 10 mm Hg or more were found in 2 of 28 patients (7%) treated with vehicle but were not observed in the patients treated with levobunolol or timolol. CONCLUSIONS: Levobunolol 0.5% or timolol 0.5% administered preoperatively and again in the evening after Nd:YAG laser capsulotomy effectively blunted the IOP rise that frequently follows laser surgery.

Sampling communicative behaviours in children with intellectual disability in structured and unstructured situations.

Structured 'communicative temptation' procedures administered by a clinician were compared to unstructured parent-child interactions in sampling intentional communicative acts in 11 subjects with intellectual disability. The subjects were assessed twice over a 5-7 month period. The results indicated that the structured condition was more effective in sampling Requests and Comments, with more Requests than Comments produced. The unstructured condition was more effective in sampling responses, but only during the second assessment. Although there was no difference in the total number of intentional communicative acts produced across assessment times, there was an increase in the use of linguistic forms during the second assessment: that is, the subjects used more speech and signs and fewer gestures and general vocalisations during the second assessment than the first. The findings suggest the usefulness of combining structured and unstructured conditions in providing information on the variety of children's communicative acts and the linguistic level at which these are expressed.

A comparison of the ocular hypotensive efficacy of twice-daily 0.25% levobunolol to 0.5% timolol in patients previously treated with 0.5% timolol.

Treatment with noncardioselective beta-adrenoceptor antagonists (e.g., 0.5% timolol or 0.5% levobunolol) is standard practice for lowering elevated intraocular pressure (IOP). However, because there are risks and side effects associated with the use of these agents, a lower, yet still effective, dose may be preferred. We gave 0.5% timolol twice daily for 30 days to 143 patients. In a double-masked, randomized fashion, we then assigned patients to continue to receive 0.5% timolol twice daily or 0.25% levobunolol twice daily for 8 weeks. The mean unmedicated baseline IOP for both groups was approximately 25 mm Hg. After 30 days of timolol pretreatment, the mean IOP in both groups decreased to approximately 19 mm Hg (p = 0.210). After the 30-day timolol pretreatment period, and subsequent randomization to either 0.5% timolol or 0.25% levobunolol treatment, there was little change in overall mean IOP (0.03 mm Hg decrease for levobunolol, 0.06 mm Hg increase for timolol; p = 0.811) from the timolol pretreatment baseline. One patient assigned to the timolol treatment group was terminated from the study due to inadequate control of IOP. We conclude that the mean IOP lowering effect of 0.25% levobunolol is equivalent to 0.5% timolol, and switching patients from twice-daily 0.5% timolol to twice-daily 0.25% levobunolol poses no significant risk of decreased ocular hypotensive efficacy.

Effect of tongue reduction on articulation in children with Down syndrome.

Tongue-reduction surgery was completed on 18 children with Down syndrome. Changes in articulation were evaluated pre- and postoperatively and at a 6-month follow-up. No significant differences in the number of articulation errors were found. The postoperative and 6-month follow-up scores of the surgery group were compared to a nonsurgery (contrast) group (N = 9) who had received two evaluations 6 months apart. Again, no significant differences were found. A follow-up survey of parental ratings on articulation of the surgery and nonsurgery group revealed that there were no significant differences between the groups but that parents of all the children claimed that "speech" had improved over the 6-month time period. These findings suggest that tongue-reduction surgery has no effect on the articulation of sounds.