Using photographs to explore self-understanding in adolescent boys with an autism spectrum condition

Background: Research evidence suggests that self-understanding is likely to be limited in individuals with autism.

Method: Photo-elicitation interview was used to explore self-understanding in five adolescent boys diagnosed with an autism spectrum condition.

Results: An interpretative phenomenological analysis yielded three superordinate themes: self in action, self extended in time and self in relation to others. These themes captured how participants understood themselves in terms of their actions and abilities, in the context of their past and future and in relation to others.

Implications: The findings suggested that self-understanding is informed by relationships with parents, self-other comparisons and by reflecting on past and future selves, as well as on activities engaged in. Photo-elicitation was effective in engaging participants with the research process.     

Effect of activity-based mirror therapy on lower limb motor-recovery and gait in stroke: A randomised controlled trial

Objective: To determine the effect of activity-based mirror therapy (MT) on motor recovery and gait in chronic poststroke hemiparetic subjects.

Design: A randomised, controlled, assessor-blinded trial.

Setting: Rehabilitation institute.

Participants: Thirty-six chronic poststroke (15.89?±?9.01 months) hemiparetic subjects (age: 46.44?±?7.89 years, 30 men and functional ambulation classification of median level 3).

Interventions: Activity-based MT comprised movements such as ball-rolling, rocker-board, and pedalling. The activities were provided on the less-affected side in front of the mirror while hiding the affected limb. The movement of the less-affected lower limb was projected as over the affected limb. Conventional motor therapy based on neurophysiological approaches was also provided to the experimental group. The control group received only conventional management.

Main outcome measures: Brunnstrom recovery stages (BRS), Fugl-Meyer assessment lower extremity (FMA-LE), Rivermead visual gait assessment (RVGA), and 10-metre walk test (10-MWT).

Results: Postintervention, the experimental group exhibited significant and favourable changes for FMA-LE (mean difference?=?3.29, 95% CI?=?1.23–5.35, p?=?.003) and RVGA (mean difference?=?5.41, 95% CI?=?1.12–9.71, p?=?.015) in comparison to the control group. No considerable changes were observed on 10-MWT.

Conclusions: Activity-based MT facilitates motor recovery of the lower limb as well as reduces gait deviations among chronic poststroke hemiparetic subjects.     

Parenting sense of competence in mothers of children with autism: Associations with parental expectations and levels of family support needs

Background: Research suggests that parents who perceive themselves as more effective and satisfied report less stress when raising a child with autism. We examined associations between parenting sense of competence, reported family support needs, and parental future expectations, with a sample of mothers of children with autism.

Method: Mothers completed a cross-sectional online survey, which included a measure of expectations: Hopes for the Future, the Parenting Sense of Competence Scale and the Family Needs Survey.

Results: Analysis revealed that mothers with lower support needs had greater parenting satisfaction; and mothers with more positive expectations perceived themselves to be more effective. Ethnicity, expectations, and lower levels of perceived family support needs, were predictors of greater satisfaction. Higher positive expectations predicted a greater sense of efficacy.

Conclusions: The findings highlight the need for further research into the factors that underlie parental efficacy and expectations when parenting a child with autism.     

Exploring dimensions of social support and resilience when providing care at the end of life: a qualitative study

Background: Research shows that formal and informal social support can facilitate resilience in carers. There is a paucity of research exploring social support and resilience amongst recently bereaved informal carers.

Aim: To examine how the presence or absence of distinct dimensions of social support facilitate or hinder resilience in recently bereaved informal carers.

Participants: 44 bereaved carers, who had been identified by GP as ‘main carer’ of someone recently deceased (3–12 months), aged between 38 and 87 years old (mean= 67).

Methods: Thematic analysis then the Ecological Framework of Resilience as an organisational tool to develop overarching themes in the data. We used the Sherbourne and Stewart model to identify social support that was lacking as well as social support that was present.

Results: A range of social support types were identified. There was an emphasis on the importance of relationships with both health professionals and family members, including the care recipient. However, social support was not necessary for resilience if the participant had other resources.

Conclusions: Social support for carers providing end of life care is almost exclusively based around end of life care ‘work’. In comparison to other research our study suggests that relationships with family and health professionals are paramount. Multidimensional support is needed for carers to enhance their resilience.     

Pharmacogenetics and levodopa induced motor complications

Aim: L-dopa remains the most effective symptomatic therapy for Parkinson's disease (PD) but unfortunately, its chronic use is often associated with motor complications. This review highlights the importance of pharmacogenetics in an individualised PD therapeutic approach.

Material and Methods: review of the literature was done.

Results: PD patients show remarkable heterogeneity in their response to L-dopa and this profound interindividual heterogeneity suggests that there is a genetic predisposition.

Conclusions: The impact of the genetic makeup of every individual on PD treatment appears to be of great importance in order to achieve not only the optimum therapeutic effect, but also with minimal side effects.     

A how-to guide to aphasia services: celebrating Professor Linda Worrall’s contribution to the field

Background: This article recognises Professor Linda Worrall’s contribution to aphasiology and discusses research themes which have grown from her work.

Aims: To review, summarise, and discuss literature relating to four themes which have emerged from the work of Professor Worrall: (1) Research capacity building; (2) Implementation of research evidence in clinical practice; (3) Meaningful outcome measurement; and (4) Improvement of psychological and emotional outcomes.

Main contribution: A review of the literature, with examples of practical applications.

Conclusions: The work of Professor Worrall has greatly influenced the field of aphasia; her legacy is the research capacity she has built in Australia and around the world.     

French translation and validation of a fragile X syndrome screening checklist

Background: Fragile X syndrome (FXS) is the most common cause of inherited intellectual disability among men. This syndrome is frequently underdiagnosed in adults. The aim of this study was to develop and validate a French translation of the screening checklist Fragiele-X screeningslijst.

Method: The validation sample for the translated checklist included 22 pairs of men between the ages of 18 and 52, matched by age and degree of intellectual impairment.

Results: The translated checklist achieved coefficients of 0.92 for internal consistency, 0.90 for test-retest reliability and 0.65 for inter-rater reliability. These psychometric properties are commensurate with those of the original checklist.

Conclusion: Therefore, the translated checklist developed in this study can be considered a valid screening instrument for the detection of FXS in men with intellectual disabilities.

Abbreviations: FXS: fragile X syndrome; FMR1: fragile X mental retardation 1 (gene)     

Caregiver distress in schizophrenia and mood disorders: the role of illness-related stressors and caregiver-related factors

Background: Studies using the stress-appraisal-coping model to examine caregiving in schizophrenia and mood disorders are limited.

Aim: This study attempted to examine psychological distress among caregivers of persons with schizophrenia and mood disorders using the framework of the stress-coping theory. The impact of illness-related stressors and caregiver-related factors on caregiver-distress was also explored.

Methods: In this cross-sectional study, 176 of the 238 selected outpatients with remitted schizophrenia, bipolar and recurrent depressive disorders identified over a 1-year period underwent standardized assessments of psychopathology and functioning. Assessments of burden, appraisal, coping, social support, neuroticism, familial–cultural variables and psychological distress (as an index of caregiving-outcome) were also carried out among family-caregivers of these persons.

Results: High levels of caregiver-burden and caregiver-distress and a mix of positive and negative appraisal, adaptive and maladaptive coping, and high and low levels of perceived support among caregivers characterized the caregiving experience. Univariate analyses revealed that both illness-related stressors (symptom-severity, level of functioning, objective burden) and caregiver-related factors (subjective burden, appraisal, coping, perceived support, family-cohesion, neuroticism, time spent in caregiving) influenced caregiver-distress. However, multivariate analyses demonstrated that caregiver-related factors such neuroticism, perceived support, time spent in caregiving, subjective burden and negative appraisal had a much greater influence on caregiver-distress than illness-related stressors.

Conclusions: Although interactions between illness-related stressors and caregiver attributes appear to determine caregiver-distress, subjective perceptions and other attributes of caregivers may have a greater impact on distress. Therefore, interventions to reduce caregiver-distress should place equal, if not more emphasis on caregiver-related factors which influence distress.     

A Note on the “One Case per Stagger Position” Character of Common Multiple-Baseline Intervention Designs

Purpose: To overcome the constraint of common multiple-baseline designs that only one case per stagger position is permitted.

Methods: Three alternative strategies for assigning more than one case to each stagger position are examined.

Results: The three recommended strategies achieve the objective while maintaining the study’s internal and statistical-conclusion validities.

Conclusions: ExPRT, a freely available Excel-based randomization-test package, can be used to assist in both the design and statistical analysis associated with each of the strategies.     

Assessment and Treatment of Problem Behavior Maintained by Termination of Interruptions

Purpose: Previous research has identified termination of interruptions to repetitive behaviour as a reinforcer capable of maintaining problem behaviour. Effective treatments have included functional communication training and multiple schedules of reinforcement.

Methods: In the present study, a functional analysis determined that the aggression of an eight-year-old boy with autism spectrum disorder was maintained by termination of interruptions of repetitive behaviour. An intervention was implemented consisting of differential reinforcement of other behaviour and response cost.

Results: The intervention produced and maintained a reduction in aggression and increased tolerance for interruptions of systematically increasing durations.

Conclusions: This case study demonstrates an alternative approach to the treatment of problem behaviours such as aggression maintained by termination of repetitive behaviour that includes teaching the individual to tolerate interruption of repetitive behavior.     

Differences in Developmental Concerns of Young Children with Autism Spectrum Disorder Across Racial/Ethnic Groups

Purpose: Parents/caregivers of children with autism spectrum disorder (ASD) have varying types of initial concerns regarding their child’s development, which may be culturally bound to parents’ perceptions of their child’s development. This study investigated differences in the types of initial developmental concerns reported by parents or caregivers of different racial/ethnic groups with children in an early intervention program.

Method: This study examined the frequency of endorsement of different types of concerns in African American, Caucasian, and Hispanic families.

Results: No significant differences between racial/ethnic groups were found in the endorsement of concerns related to communication, language/speech, motor, problem behavior, sensory, feeding, prematurity, attention, adaptive functioning, and medical conditions. Racial/ethnic groups differed significantly in their endorsement for social concerns.

Conclusion: Racial/ethnic group differences were confirmed regarding initial developmental concerns related to social behavior, which may be due to cultural beliefs. The implications of these findings on early identification are discussed.     

The lived experience of behaviours of concern: A qualitative study of men with traumatic brain injury

Background and aims: Behaviours of Concern (BoC) are a debilitating consequence of Traumatic Brain Injury (TBI). Whilst perspectives of clinicians, carers and family members on BoC have been previously explored, few qualitative studies have included individuals with TBI. The aim of this study was to explore the lived experience of BoC in individuals with TBI, their close others and clinicians.

Method: Eleven males with TBI and BoC were recruited and 25 semi-structured qualitative interviews were conducted (9 individuals with TBI, 9 close others, 7 clinicians). A six-phase thematic analysis approach was utilised.

Results: Frequent and persistent BoC were reported and the key themes identified included the brain injury, control, environment, mood, identity, social relationships, and meaningful participation. Whilst the brain injury contributed to BoC in all cases, the way the other themes manifested and interacted was variable.

Conclusions: This study enriches our understanding of factors associated with BoC. Themes emerging from this study will inform interventions designed to reduce BoC and ultimately maximise quality of life for individuals with TBI and their families.     

Utility of the Taiwan version of the Screening Tool for Autism in Two-Year-Olds to detect autism in children aged three years

Background: The Taiwan version of the Screening Tool for Autism in Two-Year-Olds (T-STAT) had been developed for identifying autism disorder (AD) in children aged 24–35 months. Two studies were performed to elucidate its utility for AD in children aged 36–48 months.

Method: In Study 1, the receiver operating characteristics were utilised to select a cutoff score for the T-STAT with 34 children with AD and with developmental delay (DD). In study 2, 147 children with AD, DD, and pervasive developmental disorder-not otherwise specified (PDD-NOS) were participated for validation.

Results: In study 1, the results indicated that a cutoff of 1.25 would yield high sensitivity and specificity. In study 2, the concurrent agreements between T-STAT risk and clinical diagnosis were high for children with AD and DD, but not PDD-NOS.

Conclusions: The results showed that T-STAT was a promising Level 2 screening tool for AD in children aged three years.     

Longitudinal trajectories of subjective care stressors: the role of personal,dyadic, and family resources

Objectives: Stressors are critical to the caregiver stress process, yet little work has examined resources that contribute to longitudinal changes in subjective stressors. The present study examines a variety of factors that contribute to changes in subjective stressors across time.

Method: Dementia caregivers (N = 153) completed an in-person interview and eight daily telephone interviews at baseline, and follow up interviews at 6 and 12 months. Growth curve analyses examine how care- and non-care stressors, respite, dyadic relationship quality, family support/conflict and care transitions (e.g. nursing home placement) are associated with changes in role overload and role captivity across 12 months.

Results: Caregivers who transitioned out of their role had higher overload and captivity at baseline. Among caregivers who transitioned out of caregiving, higher captivity at baseline was associated with declines in captivity and overload; more non-care stressors at baseline was linked to increased captivity and greater overload across time. Adult day service use and family support were associated with lesser captivity over time; taking more breaks from caregiving was linked to lower overload. Higher dyadic relationship quality was associated with lower captivity and overload.

Conclusion: Findings contribute to caregiver intervention efforts by highlighting important resources associated with subjective stressors across time.     

A comparison of WISC-IV and WISC-V verbal comprehension index scores for children with autism spectrum disorder

Objectives: This study aimed to explore changes in verbal comprehension subtest and index scores from Wechsler Intelligence Scale for Children, fourth edition (WISC)-IV to WISC-V for individuals with autism spectrum disorder (ASD), as the test revision dropped the subtest that has proven to be most challenging for those with ASD (i.e. Comprehension).

Methods: In all, 48 children with ASD who had been assessed with WISC-IV and re-evaluated with WISC-V were included in this study. Paired samples t-tests were used to examine changes in scores between administrations.

Results: Results indicated that changes in subtest scores were minimal although a statistically significant index score change occurred.

Discussion: These data suggest that administering additional measures of verbal intellect to individuals with ASD (i.e. beyond the two core verbal comprehension subtests of WISC-V) is critical for capturing the totality of their strengths and weaknesses, to effectively inform treatment planning.     

Differences in sleep patterns,sleepiness, and physical activity levels between young adults with autism spectrum disorder and typically developing controls

Objective: To investigate the differences in sleep, sleepiness, and physical activity (PA) between young adults with autism spectrum disorder (ASD) and typically developing controls (TDC).

Method: Actigraphic data and questionnaires on sleep, sleepiness, and PA were compared between fifteen adults with ASD (ADOS range 7–19; ages 22.8 ± 4.5 years) and TDC.

Results: In comparison to the TDC group, the ASD group slept longer on average per night but took longer to fall asleep. In relationship to PA levels, the objective PA levels were lower in the ASD group than the TDC group. Fewer wake minutes during the sleep period in the ASD sample were associated with more PA the following day.

Conclusion: The findings support previous research that demonstrates differences in sleep parameters and PA between ASD and TDC. Interventions aimed at increasing PA in an ASD population may be beneficial for improved sleep.     

Choosing among second-generation antidepressant treatments for depressed patients with cardiac diseases

Objectives: The present paper aimed to assist physicians in the accurate choice among second-generation agents (SGAs) for patients with cardiovascular disease (CVD).

Methods: We reviewed the published pharmacokinetic (PK) and pharmacodynamic (PD) clinical data that report potential -or absence of- drug interactions between second-generation agents (SGAs) and CVD drugs most commonly used in cardiology, including antiplatelet drugs and anticoagulants, statins, beta-blockers, angiotensin-converting enzyme inhibitors, calcium channel blockers, diuretics and the antiarrhythmic drugs amiodarone and digoxin.

We also reviewed the cardiovascular safety profile that has been published for each class of SGAs and side effects reported by patients with CVD.

Results: Most relevant PK/PD data about SGAs and CVD drugs are based on small studies or detailed case reports. In many cases, the drug interactions are at most assessed in healthy volunteers so that the clinical relevance of findings needs further investigation in patients with CVD. Case reports of serious, sometimes fatal reactions due to concomitant administration of certain drugs require careful consideration.

The major cardiac side effects of SGAs include HR increase, postural hypotension and slight prolongation of the intraventricular conduction time and QT interval. On normal dosage of antidepressants, both advanced heart block and ventricular arrhythmias could occur in patients with severe heart disease, together with clinically important loss of myocardial contractile force.

Conclusions: Data reported in the present review should help physicians about their decision-making processes that govern SGAs use in CVD patients.     

Estimation of skeletal muscle mass in patients with spinocerebellar ataxia type 3 and 10

Background: Neurodegenerative diseases may progress to a level in which patients present spontaneous weight loss, resulting in increased falls and functional disabilities when the disease is associated with muscle mass depletion.

Objective: Evaluate the muscle compartment in patients presenting spinocerebellar ataxia (SCA) type 3 and 10.

Methods: Forty-six patients presenting SCA type 3 and 10 were assessed and 76 volunteers were selected to the control group. In order to evaluate the muscle compartment, muscle mass anthropometric measurements were assessed and total skeletal muscle mass calculated through a predictive equation.

Results: Women with SCA3 presented greater weight loss and muscle mass reduction compared to those with SCA10 and the control group. Among the predictive measurements, calf muscle circumference showed a more significant correlation with total skeletal muscle mass (p = 0.718).

Conclusion: Patients presenting both types of ataxia did not show severe depletion in their nutritional status; however, those with SCA3 displayed greater weight loss and muscle mass reduction compared to the SCA10 group.     

Screening Adherence for Depression Post Stroke: Evaluation of Outpatients,a London Experience (SAD PEOPLE)

Background: Post stroke depression (PSD) is common, and the transition home following discharge may be especially challenging for stroke survivors.

Objectives: This study aimed to determine how well specific Canadian Best Practice Recommendations for PSD screening were adopted within a stroke rehabilitation outpatient clinic before and after the utilization of a standardized clinical form.

Methods: Practices were evaluated through retrospective chart review before and after the implementation of the standardized form which cued physicians to administer the Patient Health Questionnaire 9 (PHQ-9) at the first outpatient visit. Participants included those aged ≥18 years with a primary diagnosis of stroke.

Results: One hundred thirty-five subjects’ charts were reviewed. Form implementation was associated with increased rates of PSD screening (93.8% versus 0%) and charting regarding mood (55.4% versus 15.7%).

Conclusion: This study highlights the frequency of depressive symptoms in an outpatient cohort and demonstrates how screening rates can be improved by using a standardized form. Routine PHQ-9 completion at the first outpatient visit was associated with more physician–patient discussion and documentation regarding mood.     

Perspectives of carers of people with intellectual disability accessing general practice: “I’d travel to the ends of the earth for the right person”⁣

Background: Informal carers often play an integral role in the lives of people with intellectual disability (ID) residing in the community. In this study, we explored the extent to which carers of people with ID believe that the health care needs of the person they care for are being accommodated by general practice.

Method: Semi-structured interviews were conducted with 25 informal carers to people with ID living in Australia.

Results: Carers of people with ID report that they experience considerable barriers to accessing general practice care on behalf of the people they care for.

Conclusions: Given the ever-increasing number of people with ID now living in the community and their vulnerability to health problems, it is imperative that future research focuses on the development of strategies to overcome the barriers identified in this study.