Prevalence of parents with intellectual disability in Australia

Background Parenting by people with intellectual disability is attracting increasing attention, and policymakers and service providers require empirical evidence to develop sound policy and service responses. The purpose of the study was to identify prevalence and demographic data on parents with ID in Australia compared with parents with other disabilities and the population of parents without disability.

Method The Survey of Disability, Ageing and Carers, 2009, was identified as the most suitable survey, and design-weighted analysis was performed.

Results An estimated 0.41% of Australian parents had intellectual disability, equating to 17,000 parents with ID. Parents with ID were more likely to have only 1 child and to reside outside a capital city compared with parents without disability.

Conclusions These findings provide benchmark data for monitoring, over time, the prevalence of parents with ID and point to policy and service responses for parents with only 1 child and for those in outer urban, regional, and rural areas of Australia.     

Comparison of attitudes to the sexual health of men and women with intellectual disability among parents,professionals, and university students

Background This study investigates whether parents, professionals, and university students have different sexual attitudes towards men versus women with intellectual disability (ID) and which factors are related to such attitudes among these three groups.

Method A self-administered survey using the ASQ-ID questionnaire was implemented, and 130 parents, 173 professionals, and 645 university students completed it.

Results University students showed more positive attitudes than parents and professionals. Parents were more likely to have a positive perception of men with ID than of women with ID with regard to “parenting.” Whether they were parents, professionals, or university students was not correlated with their attitudes; instead, their attitudes were associated with participants' age, education, and religion.

Conclusions Awareness of sexual rights related to people with ID, especially women with ID, needs to be discussed among parents and professionals, particularly those in old age, with a low level of education, and those who follow the Buddhist religion.     

Ageing in people with intellectual disability as it is understood by group home staff

Background The number of older residents in group homes for people with intellectual disability (ID) is increasing. This interview study was focused on how group home staff address issues of ageing and being old among people with ID.

Method Twelve members of staff at 4 different group homes in Sweden were interviewed.

Results Findings revealed old age as something unarticulated in the group home. Group home staff felt unprepared to meet age-related changes in residents. The study also revealed that group home staff had a one-tracked way of describing the process of ageing among people with ID, which was seemingly rooted in a medical paradigm of disability.

Conclusion Based on this study's findings, we suggest that there is a need to raise issues and give guidance related to ageing and ID in disability policy documents to support the development of a formal culture that addresses old age and ID in disability services.     

Clinical assessment of PTSD in children with mild to borderline intellectual disabilities: A pilot study

Objective: There are few studies regarding assessment and treatment of trauma-related disorders in people with intellectual disabilities (ID). The aims of this study were to determine (1) the feasibility of an adapted version of a post-traumatic stress disorder (PTSD)-clinical interview and (2) to what extent manifestation of PTSD in a sample of children with mild to borderline ID corresponds with four existing PTSD algorithms.

Method: Fifteen children who visited a special need school were interviewed.

Results: In all children, the full interview could be completed. Potentially traumatic events (A1 criterion), and PTSD symptoms for children with mild to borderline ID were similar to those observed in children without ID.

Conclusions: The manifestation of PTSD in children with mild to borderline ID corresponds with the manifestation of PTSD in children without ID. The data provide no reason to broaden PTSD criterion A1 for children with mild to borderline ID.     

Parental report on socio-communicative behaviours in children with 22q11.2 deletion syndrome

Background Children with 22q11.2 deletion syndrome (22q11.2DS) are reported to have socio-communicative impairments. Although many of these children are diagnosed with intellectual disability (ID) and/or autism spectrum disorder (ASD), these populations are seldom used as control groups. Hence, information regarding syndrome-specific socio-communicative challenges is lacking.

Method Parental concerns regarding everyday communication were investigated by means of the Children’s Communication Checklist-2-NL (Geurts, 2007). Twenty children with 22q11.2DS (chronological age: 6 years–13 years 3 months) were compared to 21 children with idiopathic ID and 23 children with idiopathic ID and comorbid ASD. All groups were matched for fluid intelligence (Gf), chronological age, and core language scores.

Results Neglect or inadequate use of context information was more prevalent in children with 22q11.2DS than in children with idiopathic ID. Nonverbal communication seemed less impaired than in children with idiopathic ID + ASD.

Conclusion Pragmatic language skills and developmental trajectories in children with 22q11.2DS merit further investigation.     

Self-reported substance use and intervention experience of prisoners with intellectual disability

Background It has been increasingly recognised that many offenders with intellectual disability (ID) have substance use issues, yet surprisingly little is known about the treatment needs of this population.

Method In order to explore pre-sentence patterns of substance use, the role of substance use in offending behaviour, and experience with substance treatment programs, interviews were conducted with 33 sentenced prisoners.

Results The findings of this study identified hazardous and harmful rates of alcohol use and high rates of substance use among prisoners with ID. Most participants reported being intoxicated at the time of their offence. Participants’ experience of substance intervention programs varied. Although many reported a positive experience, others reported significant participation barriers.

Conclusions This study supports the increasingly recognised link between substance use and offending behaviour among prisoners with ID and highlights the importance of tailored and coordinated treatment initiatives, both within corrections facilities and the community.     

A cross-sectional analysis of developmental trajectories of vocabulary comprehension among children and adolescents with Down syndrome or intellectual disability of undifferentiated aetiology

Background In this work we sought to expand our knowledge of developmental trajectories of subcomponents of the language systems of individuals with intellectual disability (ID). We aimed to explore how general and relational vocabularies evolve as a function of cognitive level.

Method Developmental trajectories of general and relational vocabulary comprehension were compared among typically developing (TD) children and children and adolescents with ID of undifferentiated aetiology (UND) or Down syndrome (DS).

Results Comparisons between TD participants and participants with UND showed no interaction between cognitive level and diagnostic status for general vocabulary, and only a very weak interaction for relational vocabulary. Comparisons between TD participants and participants with DS failed to reveal group-specific trajectories. Performance in general vocabulary was higher than in relational vocabulary for participants with UND and DS.

Conclusion The developmental trajectories of vocabulary appear to be globally comparable for participants with or without ID.     

The feasibility of psychomotor therapy in acute mental health services for adults with intellectual disability

Background Psychomotor therapy enables people to reflect on the relationship between experiences and feelings by starting from awareness of bodily responses rather than from awareness of emotion. In this study we examine PsyMot (ID), an assessment that directs this psychological therapy.

Method Twelve suitable consecutive admissions were recruited from a specialist intellectual disability (ID) assessment and treatment unit for adults. Video-recordings of PsyMot (ID) allowed assessment of interrater reliability (IRR). Treatment goals indicated by PsyMot (ID) were addressed using psychomotor therapy as part of a comprehensive program of interventions.

Results Psychomotor therapy was both feasible and popular with patients who participated without any adverse effects. Nine patients completed PsyMot (ID). IRR of the treatment goals identified by all 3 raters was good to excellent in 81% cases, but there were discrepancies for individual items.

Conclusions PsyMot (ID) and psychomotor therapy is feasible within this context, and enriched the clinical team's formulation. Further studies of reliability and efficacy should be undertaken.     

Practical applications of the NTG-EDSD for screening adults with intellectual disability for dementia: A German-language version feasibility study

Background In this study, we evaluated the feasibility of using the German-language version of a recently developed screening tool for dementia for persons with intellectual disability (ID): the National Task Group – Early Detection Screen for Dementia (NTG-EDSD).

Method Some 221 paid carers of ageing persons with ID were asked to use the NTG-EDSD and report back on its utility and on 4 feasibility dimensions, and to provide detailed feedback on aspects deemed critical or missing.

Results All feasibility dimensions were rated good to very good, and 80% of respondents found the NTG-EDSD useful or very useful for the early detection of dementia. This highlights a high acceptability of this instrument by the main target group.

Conclusions The positive feasibility evaluation of the NTG-EDSD indicates the usability and adequacy of this instrument for application of early detection of dementia in persons with ID.     

Who provides primary health care for people with an intellectual disability: General practitioner and general practice characteristics from the BEACH dataset

Background People with an intellectual disability (ID) have complex healthcare needs yet experience barriers to participation in primary care. Further research is required to examine if the characteristics of general practitioners (GPs) and their practices influence their delivery of care to people with ID.

Methods Data from the Bettering the Evaluation and Care of Health program was used to determine if there are significant differences in the ID-GP and Non ID-GP group. Analysis included characteristic-specific rates, chi-square, and odds ratios.

Results This study found that GPs who were Australian medical graduates, practising in rural areas, in accredited practices, and in some states of Australia were significantly more likely to be classified to the ID-GP than the Non ID-GP group.

Conclusions This research suggests that certain GP and practice characteristics may present barriers to primary care participation for people with ID and supports the need for a comprehensive national action framework.     

Is participation among children with intellectual disabilities in outside school activities similar to their typically developing peers? A systematic review

Objective: To compare the extent, context and experience of participation in outside school activities of children with intellectual disability (ID) and their peers with typical development (TD).

Methods: A systematic review was completed. Nine databases were searched and citation tracking performed. Included studies were in English, published in a peer-reviewed journal, used a quantitative study design and compared children with ID to children with TD. Studies were assessed for quality using 15 items from the Downs and Black quality checklist.

Results: Four papers were included. Participants were reported to have similar participation in leisure activities. Children with ID were reported to participate in fewer community-based social activities, recreational, family-enrichment and formal activities than children with TD.

Conclusion: Key differences in participation between the groups were identified. Given their methodological limitations and that most studies were published prior to the International Classification of Functioning, Disability and Health, further research is required.     

Perceptions and expectations of regular support meetings between staff and people with an intellectual disability

Background Client-centred models of care emphasise the importance of collaborative working between staff and clients with an intellectual disability (ID). How people with an ID perceive the nature of their engagement with staff is relatively unknown. This study investigated the perceptions of staff and people with an ID about the goals for their meetings and what aspects of the meetings they viewed as important.

Method Interviews were carried out with 9 client–staff dyads. Prior to their meeting, staff and clients were asked about their expectations. Afterwards, both parties were asked about what they believed happened during the interaction. The participants’ answers were subjected to a thematic analysis.

Results People with an ID appreciated the opportunity to tell their story and valued reliable, practical support and advice. A trusting relationship was important to both clients and staff. Only staff viewed promoting clients’ autonomy as important.

Conclusion Staff and people with an ID appear to differ in their expectations and perceptions regarding regular support meetings.     

Screening for intellectual disabilities: a validation of the Hayes Ability Screening Index for in-patients with substance use disorder

Background: There is a reason to believe that many individuals with substance use disorder (SUD) in contact with services have an undiagnosed intellectual disability (ID). Assessing ID in persons with SUD can be challenging due to the influence of substances, time consumption, and specific requirements for the education of the assessor. On the other hand, an undiagnosed condition may lead to a lack of treatment adjustment and may result in drop-out from treatment or lack of treatment effect. There is a need for a time-saving, valid instrument to detect possible ID among people with SUD.

Aims: To validate the Hayes Ability Screening Index (HASI) as a screening instrument for identifying ID in a population of in-patients with SUD using all three ICD-10/DSM5 criteria in classifying ID as the validation criterion.

Methods: Eighty-four SUD in-patients aged 19–64 participated in this multicenter study. An ID was diagnosed according to the ICD-10 using WAIS-IV, Vineland II, and self-reported childhood learning difficulties.

Results: HASI correlated well with both the WAIS-IV and Vineland II. At the recommended cut-off score, the HASI had a sensitivity of 100% and a specificity of 65.4%. A large number of the false positives had IQ or both IQ and adaptive scores in the borderline range.

Conclusions: The HASI has good convergent, discriminant, and overall construct validity in detecting ID in in-patients with SUD.     

Do depressive symptoms predict mortality in older people?

Context: Depressive symptoms are common in older persons, and may predict mortality.

Objectives: To determine: (1) If depressive symptoms predict mortality; (2) If there is a gradient in this effect; and (3) Which depressive factors predict mortality.

Population: In 1991–1992, 1751 community-dwelling older persons, sampled from a population-based registry, were interviewed.

Measures: The Center for Epidemiologic Studies – Depression (CES-D), age, gender, the Modified Mini-Mental State Examination, self-rated health, and functional status.

Outcome measure: Time to death.

Analysis: Those scoring 16+ on the CES-D were considered depressed. To determine if a gradient was present, the CES-D was treated as a continuous variable. Four depressive factors from the CES-D (depressed affect, positive affect, somatic, and interpersonal) were analyzed. Cox regression models were constructed.

Results: The mortality in those with depressive symptoms was higher in those without depressive symptoms (Hazard Ratio of 1.71, p < 0.001, Log rank test). In multivariable models, this association was no longer significant after accounting for self-rated health and functional status. There was a gradient in risk of mortality across the range of the CES-D. Somatic factors, depressed affect, and positive affect were all associated with mortality in bivariate analyses, but not in multivariable models adjusting for functional status. Interpersonal factors were not associated with mortality.

Conclusions: Depressive symptoms predict mortality in older persons.     

Ethics and shared decision-making in paediatric occupational therapy practice

Background: Sharing information and decisions with children and their parents is critical in pediatric rehabilitation. Although the ethical significance and clinical benefits of sharing decisions are established, approaches for implementing shared decision-making in clinical practice are still developing.

Aim: To explore the ethical challenges of sharing information and decisions with one family in pediatric occupational therapy.

Method: We used a single qualitative in-depth interview with an occupational therapist to examine the ethical dimensions of sharing decisions.

Results: We found that asking what was ethically at stake in the information-sharing process, highlighted how timing and style of information sharing impacts on understanding and collaboration within the therapeutic relationship. Using ethics-based questions assisted in drawing out the complexity of implementing the ideals of sharing information and decisions in pediatric practice.

Conclusion: Reflecting on ethical dimensions of communication with families assists to identify approaches to shared decision-making in clinical practice.     

Nerve root anomalies detected intra-operatively technical nuances towards achieving a successful surgical outcome: our experience of three case reports at a tertiary level centre

Objective: Analysis of three case reports of nerve root anomalies detected intra-operatively and its implications.

Design: Data collected during one year prospective non-randomised study using hospital records.

Setting: Single tertiary care centre.

Subjects: 3 patients in one year period.     

Intergenerational support and life satisfaction of young-, old- and oldest-old adults in China

Objectives: This study investigated variation across different old-age groups in the association between intergenerational support and elderly life satisfaction in China, taking into account both exchange patterns and different types of support.

Method: Using the first two waves (2010 and 2012) of China Family Panel Studies, we applied the fixed-effect approach to examine the moderating effect of age separately for exchange patterns and different types of intergenerational support. The sample included 3989 elderly people.

Results: There were age differences in the association between intergenerational support and elderly life satisfaction, for both exchange patterns and different types of support. Particularly, there was significant difference between the young-old (61–70) and the oldest-old (85+) in terms of the association.

Conclusion: Theoretically, this study helps to elaborate on social exchange and equity theories by introducing explanations from socio-emotional selectivity theory. It further highlights how policies for elderly care should be developed considering the diverse needs, characteristics and goals of elderly people rather than treating them as a singular homogenous group, in particular in relation to different old-age groups.     

Life-crossroads on stage: integrating life review and drama therapy for older adults

Objective: This paper examines the contribution of a new group of therapeutic interventions for older adults, based on a rudimentary life-review intervention.

The intervention includes narrative elements together with drama therapy. The current study examines the influence of this therapeutic intervention on key indicators of mental health and psychological well-being among older adults.

Method: Fifty-five people (n = 55), ranging in age from 62 to 93, participated in a before–after study design. The following indices – meaning in life, self-acceptance, relationships with others, depressive symptoms, and experience of successful aging – were compared between an intervention group (n = 27) and a care-as-usual control group (n = 28).

Results: Repeated measures analyses of variance showed a significant improvement over time in the experimental group. In addition, results also showed time-group interaction regarding the treatment's effectiveness for self-acceptance, relationships with others, sense of meaning in life, sense of successful aging, and depressive symptoms.

Conclusion: Our findings confirm that the new therapeutic intervention, which integrates life-review with drama therapy, increases self-acceptance, relationships with others, sense of meaning in life, and sense of successful aging; in turn, it also decreases depressive symptoms among older adults. The contribution of this research is based on the development of a therapeutic intervention that combines narrative together with drama therapy tools, which can be used in focused and short-term group treatments with the elderly.     

Possible error in the Danish version of the WHO Quality of Life (WHOQOL-BREF) Questionnaire

Background: The WHOQOL-BREF is widely used to measure quality of life.

Aims: The goal of the present study was to use the questionnaire in a doctoral study.

Methods: We studied all the instructions provided by the WHO.

Results: In the Danish version of the WHOQOL-BREF there is a discrepancy between the negatively phrased question 9 and both the syntax file and the verbal instructions for coding the data provided by the WHO.

Conclusions: This is a notification of possible error interpretations in projects that use the questionnaire. This could be corrected by manual correction in the coding process or by changing the negatively phrased question 9.     

Grammar and cognition: deficits comprehending counterfactuals in Turkish individuals with Broca’s aphasia

Background: Comprehending counterfactuals requires a well-developed cognitive system. Individuals with Broca’s aphasia have impaired cognitive functioning, which may affect their ability to comprehend counterfactuals.

Aims: This study investigated whether cognitive complexity involved in counterfactuals adds to sentence comprehension deficits in Broca’s aphasia.

Methods & Procedures: The sample consisted of 24 Turkish individuals with Broca’s aphasia (mean age: 52.7; SD: 12.7) who were matched in age with a control group of 15 neurologically intact Turkish individuals (mean age: 51.8; SD: 8.5). Each group completed a sentence comprehension task with three sentence conditions: nonconditional, factual, and counterfactual. Nonconditionals did not have if-embedding, whereas factual and counterfactual conditionals were morphosyntactically equivalent if-clauses, but only the latter was cognitively complex.

Outcomes & Results: Conditionals were more difficult to comprehend than nonconditionals for the Broca group. Counterfactuals were more difficult to comprehend than the morphosyntactically equivalent factual counterparts for the Broca group. There was no discrepancy between test conditions for the control group.

Conclusions: Individuals with Broca’s aphasia have difficulty processing counterfactuals due to morphosyntactic complexity (if-embedding) and the cognitive processes involved in comprehending counterfactuals. This indicates that cognitive complexity adds to sentence comprehension deficits in Broca’s aphasia.