A qualitative study of the processes by which carers of people with dementia derive meaning from caring

Background: Most individuals with dementia live in the community, receiving care from family or lay carers. Carers’ wellbeing, and the quality of the care they provide, partly depends on their ability to derive meaning from caring for someone with dementia. Both carers’ previous relationship with their relative and the caregiving process itself contribute to this sense of meaning. However, it remains unclear why some carers derive meaning from these sources, whereas others do not.

Objective: To further explore the processes by which carers derive a sense of meaning from caring.

Methods: Representative case sampling was used to recruit a purposive sample of 20 carers for individuals living with dementia. In-depth semi-structured interviews were audio-recorded and transcribed, and analysed using pluralist qualitative methodology.

Results: A framework of three sources from which carers derived meaning from caring was identified, encompassing: carers’ perceptions of how ‘right’ or ‘symmetrical’ caring felt in light of their current and previous relationship with the person with dementia; maintenance of a ‘protected’ sense of self within the care relationship; and carers’ perceptions of their ‘social connectedness’ outside the relationships.

Conclusion: Holistic assessment based on this framework could help to tailor individualised provision of support, foster resilience and safeguard carers’ well-being.     

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.     

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.     

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)     

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.     

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.     

Carer preferences for home support services in later stage dementia

Objectives: To examine the relative importance of different home support attributes from the perspective of carers of people with later-stage dementia.

Method: Preferences from 100 carers, recruited through carers’ organisations, were assessed with a Discrete Choice Experiment (DCE) survey, administered online and by paper questionnaire. Attributes were informed by an evidence synthesis and lay consultations. A conditional logit model was used to estimate preference weights for the attributes within a home support ‘package’.

Results: The most preferred attributes were ‘respite care, available regularly to fit your needs’ (coefficient 1.29, p = < 0.001) and ‘home care provided regularly for as long as needed’ (coefficient 0.93, p = < 0.001). Cost had a significant effect with lower cost packages preferred. Findings were similar regardless of the method of administration, with respite care considered to be the most important attribute for all carers. Carers reported that completing the DCE had been a positive experience; however, feedback was mixed overall.

Conclusions: These carer preferences concur with emerging evidence on home support interventions for dementia. Respite care, home care and training on managing difficulties provided at home are important components. Carers’ preferences revealed the daily challenges of caring for individuals with later stage dementia and the need for tailored and specialised home support.     

Implementation of active support over time in Australia

Background: Research indicates the value of active support in achieving good outcomes across a number of quality of life domains for people with intellectual disabilities. However, implementation is not easy, and little research has explored why. We aimed to identify some of the factors that impact on implementation of active support in supported accommodation services.

Methods: Data on the quality of active support, staff training and practice leadership were collected through staff questionnaires, observations and manager interviews, for between two and four years across six organisations.

Results: Active support improved over time for more able people with intellectual disability, but not for people with higher support needs. There was a weak positive correlation between active support and (1) practice leadership scores, and (2) the percentage of staff reporting active support training.

Conclusions: It is important to recognise the influence of practice leadership and staff training on the quality of support and ensure provision for these in funding schemes.     

A treatment comparison study of a photo activity schedule and Social Stories for teaching social skills to children with Autism Spectrum Disorder: brief report

Purpose: To compare the efficacy of two procedures, a photo activity schedule intervention and Social Stories, to teach social skills to four children diagnosed with Autism Spectrum Disorder (ASD).

Methods: An adapted alternating treatments design with an additional multiple baseline control was used, and two social skills were targeted for each of the four participants, one under each intervention condition.

Results: Results indicated that all four participants learned the target social behaviours with the photo activity schedule intervention, but did not learn target social behaviours with Social Stories.

Conclusions: Findings support the use of a photo activity intervention for teaching social skillsto children with ASD; we discuss the implications of inconsistent findings of effectiveness of Social Stories.     

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.     

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.     

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.     

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.     

Acute aseptic meningitis during isotretinoin treatment for nodular acne solely presenting with headache: case report and brief review of the literature

Purpose/aim: We describe, in detail, the first case of isotretinoin-induced aseptic meningitis. A brief summary of the literature on drug-induced aseptic meningitis (DIAM) is also presented.

Materials and methods: A 20-year old female patient with probable (Naranjo adverse reaction probability score of 7) DIAM during treatment with isotretinoin therapy for nodular acne solely, presenting with headache. Pseudotumor cerebri was appropriately ruled-out.

Results: Summary of data altogether lead us suggest that isotretinoin triggered DIAM, possible due to a delayed hypersensitivity mechanism type III or IV.

Conclusion: We highlight a quite uncommon cause of DIAM that may be increasing in frequency due to the current increasing use of isotretinoin against nodular acne.     

The effects of computer-based cognitive rehabilitation in patients with visuospatial neglect following stroke: a systematic review

Objectives: To identify studies concerning the effects of computer based cognitive rehabilitation (CBCR) on visuospatial neglect (VN) after stroke to summarize the current state of knowledge in this research field and make recommendations for future research.

Methods: Four electronic databases were systematically searched. Authors of relevant studies were contacted to detect unpublished data or articles not found by searching databases. Data was extracted from included studies using predefined coding schemes and characteristics and results of individual studies were summarized qualitatively.

Selection criteria: Studies were included if at least 50% of the included patients had a stroke, if the studies explored the effects of CBCR as a primary intervention for rehabilitation of VN and if they included neuropsychological outcome measures for the presence of VN.

Results: Seven studies were included. Six of the seven studies suggested positive effects of CBCR on VN after stroke. However, the study that did not find these effects was also the study with the strongest methodological quality. All included studies consisted of small samples, varied greatly in design and had various methodological limitations.

Conclusion: Because the existing literature is very sparse and studies have various methodological limitations, it is currently not possible to either support or reject the effects of CBCR on VN after stroke. Future studies should aim to compare CBCR with active and passive control conditions and include larger samples in randomized and blinded designs.     

Perspectives about support challenges facing health workers assisting older adults with and without intellectual disability in rural versus urban settings in Australia

Aims: Life expectancy for both sexes in Australia exceeds 80 years, with individuals with intellectual disability also increasingly living into older age. This research aimed to comparatively examine perceptions of staff supporting either older adults or age peers with lifelong intellectual disability.

Methods: This project asked 420 medical, health, and support workers about training adequacy, health services access, and trigger points for premature institutionalisation. This paper is based on a subsample of 196 respondents who provided quantitative and qualitative responses.

Results: There was considerable variation in confidence in supporting ageing individuals, while only 23.7% of doctors reported their training was adequate to support adults ageing with intellectual disability. A lack of services and poor carer health were identified as triggers for premature institutionalisation.

Conclusions: The study revealed key differences in staff perceptions of support provision and training adequacy when comparing ageing individuals with intellectual disability to the general ageing population.     

The evidence for prolonged muscle stretching in ankle joint management in upper motor neuron lesions: considerations for rehabilitation – a systematic review

Background: As clinicians, muscles stretching approaches are one of the most commonly used interventions in rehabilitation. However, there is a need for an in-depth evaluation of research on prolonged stretching in terms of the features of the stretching approaches, such as duration and frequency, as well as the compatible measures of a successful stretching approach.

Objective: This review is an effort to synthesize findings from studies on “prolonged” stretching approaches in patients with UMNs including stroke, spinal cord injuries, and traumatic brain injuries. We investigated the compatible features of successful stretching regimens in terms of reducing spasticity, improving the Active Range of Motion (AROM), Passive Range of Motion (PROM), and gait training of spastic patient with upper motor neuron lesions.

Methods: Studies evaluating the effectiveness of “prolonged” stretching on spastic ankle planterflexor muscles and its complications were critically reviewed, and the level of evidence was analyzed.

Results: There is a sufficient level of evidence to support the use of stretching as and effective techniques in rehabilitation. However, more research is yet to be done to objectively examine the ideal parameters of a successful stretching approach using functional assessments, such as walking, speed, walking capacity, and balance.

Conclusion: The review adds stronger understanding with regard to stretching considerations in rehabilitation following UMNs. The ideal approach, as well as the functional implications on motor performance are yet to be further studied.     

Views and experiences of care home staff on managing behaviours that challenge in dementia: a national survey in England

Aim: To determine the views of care home (CH) staff in relation to experiencing and managing behaviour that challenges (BtC) in dementia and their experiences of training.

Method: Cross-sectional survey using a self-report questionnaire, distributed to staff employed in a 20% sample of all registered dementia-specialist CHs in England, either by postal or direct distribution.

Results: Questionnaires were returned from 352 care staff (25%), representing 5% of all dementia-specialist CHs, half were CH without nursing. Respondents estimated caring for 14,585 residents, 9,361 with dementia and 5,258 with BtC. 30.2% of residents with dementia were estimated as being prescribed a medicine to control BtC. BtC reported as experienced by most respondents were: shouting (96.6%), verbal aggression (96.3%) and physical aggression (95.7%), with physical aggression viewed as most difficult to manage. Top behaviours experienced every shift were: wandering (77.8%), perseveration (68.2%) and restlessness (68.2%).

Approaches such as assessing residents, knowing them and treating them as individuals, identifying triggers, having time for them and using an appropriate style of communication, were viewed as key to managing BtC, rather than guideline-specific interventions such as massage, aromatherapy and animal-assisted therapy.

Only 38% agreed/strongly agreed medicines were useful to control BtC, which was related to the extent to which they were prescribed. Training was available, but variable in quality with on-line training being least useful and on-the job training most desirable.

Conclusion: BtC are commonly and frequently experienced by care staff, who consider individual approaches, having time and good communication are key to successful management.     

Predictors of maternal stress in pre-school and school-aged children with autism

Background: Mothers of children with autism experience high levels of stress. However, little is known about whether maternal stressors differ across children of different ages.

Method: This study investigated stressors in mothers of 29 pre-school-aged and 27 school-aged children with autism. Correlation and regression analyses were used to determine if maternal stressors differed between the two age groups.

Results: Findings revealed no difference in maternal stress levels across the two age groups; however, stressors for each age group were different. Stressors in the school-aged group were related to repetitive behaviours, sensory sensitivities, and problematic behaviours, while stressors in the pre-school-aged group were mainly related to adaptive behaviours.

Conclusions: These findings are informative for practitioners and highlight the need for tailored supports and therapies for mothers of children with autism of different ages.