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.     

Australian parents’ experiences of speech generating device (SGD) service delivery

Objective: To explore parents’ perceptions of existing support for families with a new speech generating device (SGD).

Method: Six Australian parents of school-aged children who used an SGD participated in semi-structured interviews about their experiences of SGD support. Data were explored and compared using narrative analysis.

Results: Participants discussed barriers to service access, including long waiting lists, service exclusion policies and limited therapist expertise in SGD practice. They emphasized the value of ongoing service coordination for families. Finally, participants discussed the nature of role boundaries and responsibilities for parents vs. therapists in the intervention process and the impact that intervention approaches had on parent autonomy, empowerment and confidence.

Conclusion: Having an SGD at home generates ongoing support needs, which had not been well met for some parents in our study. Results suggest that timely, well coordinated and family-centred support may enhance service experience for families with a new device.     

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.     

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.     

Patterns of decline in naming and semantic knowledge in primary progressive aphasia

Background: Individuals with primary progressive aphasia (PPA) and their caregivers want to know what to expect so that they can plan support appropriately. The ability to predict decline in naming and semantic knowledge, and advise individuals with PPA and their caregivers regarding future planning, would be invaluable clinically.

Aims: The aims of this study were to investigate patterns of decline in naming and semantic knowledge in each of the clinical variants of PPA (logopenic variant PPA, lvPPA; nonfluent agrammatic PPA, nfaPPA; and semantic variant PPA, svPPA) and to examine the effects of other variables on rate of decline. We hypothesized that speech-language rehabilitation, higher education, and higher baseline test scores would be associated with slower decline, and older age with faster decline.

Methods and Procedures: A total of 94 participants with PPA underwent language testing, including 36 participants with lvPPA, 31 participants with nfaPPA, and 27 participants with svPPA. All participant groups were similar in age and education. We focused on decline on three tests: the short form of the Boston Naming Test (BNT), the Hopkins Assessment of Naming Actions (HANA), and the short form of the Pyramids and Palm Trees Test (PPTT).

Outcome and Results: Across language tests, the most precipitous rates of decline (loss of points per month) occurred in nfaPPA, followed by svPPA, then lvPPA. Female sex, longer symptom duration, higher baseline test score, and speech-language rehabilitation were associated with slower decline.

Conclusions: PPA variants were distinguishable by rapidity of decline, with nfaPPA having the most precipitous decline. As hypothesized, higher baseline test scores and speech-language rehabilitation were associated with slower decline. Surprisingly, age and education were not important prognostically for individuals in this study. Further study of prognostically-relevant variables in PPA is indicated in this population.     

Internal decompression for spinal stenosis (IDSS) for decompression and use of interlaminar dynamic device (CoflexTM) for stabilization in the surgical management of degenerative lumbar canal stenosis with or without mild segmental instability: our initial results

Introduction: Internal decompression of spinal stenosis (IDSS) and Posterior dynamic stabilization (PDS) form a bridge between decompression laminectomy alone and rigid fusion, by attempting to sustain beneficial effects of decompression and stabilization in an attempt to prevent bad effects of relentless degeneration.

Objective: To evaluate the clinical outcome in operated patient of posterior dynamic stabilization.

Design: Data were collected over 1 year in prospective, nonrandomized follow-up study using outcome scales.

Setting: Single surgeon, tertiary care centre in Mumbai, India.

Described here is the operative technique of posterior dynamic stabilization using CoFlex^TM and clinical outcome of 67 consecutive patients using Visual Analogue Scale and Oswestry Disability Score.     

Attentional dysfunction and word-finding difficulties are related to semantic jargon after a thalamic lesion: a case report

Background: Although many case reports on neologistic jargon have been documented, reports on semantic jargon are extremely rare, suggesting that semantic jargon may occur more rarely than neologistic jargon.

Aims: To investigate potential mechanisms underlying semantic jargon.

Methods & Procedures: We describe a patient who presented with semantic jargon after a left thalamic hemorrhage that mainly affected the pulvinar, lateral posterior nucleus, centromedian nucleus, and reticular nucleus. She was followed for 8 years, during which the temporal changes in her linguistic and neuropsychological functions were investigated.

Outcomes & Results: The patient’s semantic jargon disappeared and selective attention improved in parallel. Word-finding deficits remained at the end of the observation period.

Conclusions: Our observations of this patient suggest that a thalamic lesion can cause attentional and linguistic dysfunction that does not activate an intended word and its images and, conversely, fails to inactivate non-relevant words and associated images, resulting in semantic jargon.     

Positive aspects of coping among mothers of adolescent children with developmental disability in the Druze community in Israel

Background The purpose of this study was to compare perceptions of coping as experienced by 240 mothers of adolescents with and without developmental disability in the Druze community in Israel.

Method The mothers completed the Sociodemographic Questionnaire, Grandparents Functional Support Assessment, Family Adaptability and Cohesion Evaluation Scales, and the Posttraumatic Growth Inventory.

Results Both groups were found to be similar in their perception of family cohesion and emotional support. However, mothers of adolescents with a developmental disability reported higher rates of both adaptability to change and personal growth. Moreover, associations were found between family cohesion and adaptability to change and support, and between adaptability to change and social support and personal growth.

Conclusion Druze mothers of adolescents with developmental disability reveal important information regarding positive coping strategies.     

Assessing family caregiver skill in managing behavioral symptoms of Alzheimer's disease

Objectives: This measurement study operationalized family caregiver skill in managing behavioral symptoms associated with Alzheimer's disease (AD) by testing a Caregiver Assessment of Behavioral Skill-Self-Report (CAB-SR) measure.

Method: A cross-sectional design was used. Caregivers had a family member with possible/probable AD, resided at home with the care recipient and provided the majority of care (N?=?82). The mail-administered assessment included the CAB-SR and other care recipient and caregiver measures.

Results: Preliminary CAB-SR reliability and validity were determined using reliability, factor analytic and correlational procedures.

Conclusion: This measure provides a preliminary assessment of caregiver skill in managing behavioral symptoms of AD and shows promise for use in research and clinical intervention settings.     

Spinocerebellar ataxia type 3 presenting with writer's cramp without ataxia

Aim of the study: Spinocerebellar ataxia type 3 is the most common cause of autosomal dominant inherited ataxia worldwide.

Material and methods: Clinically, it exhibits wide phenotypic variability. Presentation as isolated dystonia is exceptional.

Results: Here, the case of a woman with writers cramp without ataxia is presented as a paucisymptomatic manifestation of this disease.

Conclusions: This association has not been described to date and extends the clinical variability of the disease.     

Towards school mental health programmes in Nigeria: systematic review revealed the need for contextualised and culturally-nuanced research

Background: School-based mental health programmes, a potential avenue to reach many children and youth, are not yet developed in Nigeria. In view of the importance of cultural nuances in mental health issues, initial groundwork towards the establishment of these programmes in Nigeria must be cognizant of cultural peculiarities at the outset.

Objectives: The objective of the study was to critically examine, through the lens of transcultural psychiatry, all the currently available epidemiological studies and needs assessments relevant to school-based mental health programmes in Nigeria.

Methods: The study was a systematic review of relevant studies available from MEDLINE, Science Direct, PsychInfo, Google Scholar, and AJOL databases.

Results: This review shows that there is an ongoing effort at documenting the burden of mental health problems and risks, resource needs, and the available resource and capacity for school-based mental health programmes in Nigeria. However, generally speaking these epidemiological data and needs assessments are significantly limited in epistemological philosophy and cultural contextualisation. This was evidenced by a preponderance of non-representative data, quantitative assessments, and decontextualised interpretation of results and conclusions.

Conclusions: Going forward, recommendations are offered for culturally-nuanced epidemiology and the direction is set for context-appropriate needs assessments for school-based mental health programmes in Nigeria.     

Psychometric properties of the Ndetei–Othieno–Kathuku (NOK) Scale: A mental health assessment tool for an African setting

Background: Research suggests that psychiatric conditions in children and adolescents are highly debilitating, with sparse resources for assessment and treatment in low- and middle-income countries (LMICs).

Objectives: The primary aim of this study was to evaluate the reliability, validity, and latent factor structure of an ethnographically-grounded assessment instrument for detecting common mental health complaints among rural Kenyan children and adolescents.

Methods: The Ndetei–Othieno–Kathuku Scale (NOK) was delivered to 2 282 children aged 10 to 18 years old. Exploratory factor analysis identified four latent factors. This structure was confirmed in subsequent confirmatory factor analyses. External validity was explored by investigating associations among NOK factors and Youth Self-Report DSM-oriented scales.

Results: Findings suggest the NOK possesses good internal reliability and a four-factor latent structure corresponding to depression, anxiety, somatic complaints, and a mixed factor. Significant associations ranging from small to medium effect sizes were noted between NOK factors and YSR DSM-oriented scales.

Conclusions: Exploratory findings suggest that the NOK possesses adequate psychometric properties among this population. This ethnographically-grounded instrument may be uniquely suited to screening for mental health complaints among Kenyan children and adolescents.     

Moderation of effects of AAC based on setting and types of aided AAC on outcome variables: An aggregate study of single-case research with individuals with ASD

Objective: The purpose of this meta-analysis was to evaluate the potential moderating effects of intervention setting and type of aided augmentative and alternative communication (AAC) on outcome variables for students with autism spectrum disorders.

Methods: Improvement rate difference, an effect size measure, was used to calculate aggregate effects across 35 single-case research studies.

Results: Results indicated that the largest effects for aided AAC were observed in general education settings. With respect to communication outcomes, both speech generating devices (SGDs) and the Picture Exchange Communication System (PECS) were associated with larger effects than other picture-based systems. With respect to challenging behaviour outcomes, SGDs produced larger effects than PECS.

Conclusion: This aggregate study highlights the importance of considering intervention setting, choice of AAC system and target outcomes when designing and planning an aided AAC intervention.     

The ICF-CY-based structural equation model of factors associated with participation in children with autism

Objective: The aim of this study was to apply the International Classification of Functioning, Disability and Health – Child and Youth (ICF-CY) framework to identify the factors related to the participation of children with autism.

Method: A convenience sample included 162 preschool children with autism ages 36 to 72 months. The raters collected data using the ICF-CY-based questionnaire as an instrument to construct the structural equation modeling of factors associated with participation.

Results: The internal structure of the model was acceptable, indicating that the observed variables would suffice in accounting for latent variables. The structural model showed that the performance of participation in children with autism was influenced by body functions and personal factors. All the variables accounted for 77% of the explained variance for activities and for participation by 71% of the children with autism.

Conclusion: These findings may provide critical information pertaining to predictive factors of participation for parents, educators, and professionals who work with children with autism.     

Father involvement in the care,play, and education of children with autism

Background Despite general increased recognition of the importance of fathers, their role in the lives of children with autism remains underresearched.

Methods This study aimed to investigate the nature and extent of father involvement through an online survey of fathers of children with a diagnosis of autism in the UK.

Results Of the 306 fathers who completed the survey, half indicated that they were mainly or equally responsible for their children’s daily care routines, irrespective of the child’s age or diagnosis. More fathers spent time engaged in play than any other activity, although nearly half had received no relevant training. Many fathers supported their children’s education, especially helping with homework. The greatest obstacle to further engagement was the demands of employment.

Conclusions Findings are discussed within the context of the wider developmental literature. A more gender-differentiated approach to service provision is called for, alongside further research on enhancing father engagement in play and education.     

A preliminary empirical evaluation of KooLKIDS: A school-based program to reduce early onset antisocial behaviour in children

Background The aim of the present study was to conduct a preliminary empirical evaluation of the KooLKIDS program, a school-based intervention that utilises a combination of whole-of-class and individual sessions for young children with early onset antisocial behaviour.

Method Trained facilitators delivered the 13-session program to a completer sample of 49 primary school-aged children (7–11 years) with early onset antisocial behaviour (42 boys and seven girls suspended from school or at risk for suspension) and their peers.

Results Analyses showed significant postintervention reductions on many outcome variables, including teacher and child self-rated aggression and antisocial traits. Significant improvements were also found on measures of emotional intensity and peer acceptance. Acceptability and feasibility data were promising.

Conclusion KooLKIDS has the potential for redirecting the trajectory of antisocial behaviour towards more positive social and emotional outcomes for these at-risk children.