ABSTRACT

Background

We identified participant-level risks and safeguards in social-behavioural research with adults with developmental disabilities.

Method

We conducted a qualitative systematic review on risks and safeguards in peer-reviewed research with adults with developmental disabilities. We identified research reporting on risks and safeguards published between 2009 and 2023 by searching eight databases and conducting hand searches of reference lists. We conducted thematic analysis using independent data extraction and coding, and investigator triangulation.

Results

From 23 manuscripts, we identified: (1) risks associated with research participation of adults with developmental disabilities (e.g., physical, relational, psychological, and social risks as well as a loss of privacy and confidentiality) and (2) safeguards (e.g., using guiding frameworks, reducing participant burden, securing privacy and confidentiality, and fostering psychological and relational well-being).

Conclusions

We encourage researchers to foster positive experiences so research participants feel valued and respected, and enjoy having the experience and opportunity to contribute to scientific discoveries.

Abstract

This study involved a three-level meta-analysis on the correlations between metalinguistic awareness (i.e., orthographic, phonological, and morphological awareness) and Chinese word reading. Based on 16,823 individuals from 81 studies, the results revealed moderate associations between all three metalinguistic skills and Chinese word reading. Additionally, location, grade, and measurement type moderated these relationships. Orthographic awareness showed stronger associations with Chinese word reading in preschool than in other grades, among participants from Taiwan than those from mainland China, and when measurement involved semantic radical function awareness than when it involved form and phonetic radical function awareness. Additionally, syllable-level phonological awareness showed stronger correlations than other levels only in preschool, and the associations declined after low primary. Subsyllable awareness showed the strongest association in low primary. Furthermore, word reading measurement moderated its association with phonological and morphological awareness. Phonological awareness correlated more with word reading accuracy than fluency, and morphological awareness correlated more with multicharacter than single-character word reading accuracy.

ABSTRACT

Background

Individuals with intellectual disabilities (ID) typically exhibit cognitive deficits. While single bouts of physical activity (PA) have shown cognitive benefits in typically developing individuals, the effects on those with ID are unclear. This study aimed to investigate the effectiveness of single bouts of PA on cognition in individuals with ID.

Method

This registered review followed the PRISMA guidelines and searched for eligible studies on PubMed and Scopus.

Results

Eight studies were included, showing that participants demonstrated transient improvements in cognition, including information processing speed, inhibition and working memory, following moderate aerobic-based intensity PA. However, findings regarding the optimal intensity or types of PA for enhancing specific cognitions, and the effects on higher-level cognition (e.g., planning), are limited.

Conclusions

Single bouts of PA may transiently enhance cognition in adolescents and young adults with mild to moderate ID, but more rigorous research with a feasible protocol is required to refine exercise prescriptions for maximal cognitive benefits.

ABSTRACT

Background

Mucopolysaccharidosis type III (MPS III) is a rare lysosomal storage disease with systemic complications. This scoping review aimed to synthesise evidence regarding methods to diagnose and monitor MPS III.

Methods

We searched 10 databases for English and Spanish citations published from 2017 to 2022. Our study focused on human-based research that reported methods to diagnose and monitor MPS III, including experimental, quasi-experimental, observational studies, reviews, and guidelines. We followed PRISMA-ScR guidelines for screening and data extraction. Descriptive statistics and qualitative synthesis were used for analysis.

Results

We included 35 eligible articles. Most studies were conducted in Europe and Central Asia (17/35, 48.6%) and constituted case reports (19/37, 51.4%). Clinical symptoms were reported in 30 articles and predominantly pertained to the nervous system (25/30, 83.3%), including intellectual disability (19/30, 63.3%), movement incoordination (17/30, 56.6%), and behavioural issues (16/30, 53.3%). Diagnostic methods (23/35, 65.7%) featured genetic testing and biochemical assays, including GAG measurement in urine. Brain MRI was the most recorded imaging study (11/20, 55.0%), while electrographic studies (10/35, 28.5%) encompassed electrocardiogram (5/10, 50%), electroencephalogram, and audiometry (3/10, 30% each). Scales and questionnaires (8/35, 22.8%) were reported, with the Bayley Scales of Infant Development being the most described (4/8, 50%).

Conclusion

Our study comprehensively overviews the contributions of diagnostic and monitoring methods for MPS III. Our findings can guide clinicians in providing evidence-based care for this rare disease.

Abstract

Integer programming (IP) is an extension of linear programming (LP) whereby the goal is to determine values for a set of decision variables (some or all of which have integer restrictions) so as to maximize or minimize a linear objective function of the variables subject to a set of linear constraints involving the variables. Although the psychological literature is replete with applications of multivariate statistics, implementations of mathematical modelling methods such as IP are comparatively far fewer. Nevertheless, over the decades, there have been a variety of important applications and the vast majority of these fall within the IP rather than the LP category. In this paper, we offer a brief overview of the history of IP methodology. We subsequently review some domains where IP has been gainfully applied in psychology, such as test assembly, cluster analysis and classification and seriation and unidimensional scaling. An illustrative example of using IP to cluster respondents measured on items pertaining to substance abuse disorder is provided. Finally, we identify areas where IP might be applied in emerging areas of psychology, such as in the domain of network psychometrics.

Abstract

Integer programming (IP) is an extension of linear programming (LP) whereby the goal is to determine values for a set of decision variables (some or all of which have integer restrictions) so as to maximize or minimize a linear objective function of the variables subject to a set of linear constraints involving the variables. Although the psychological literature is replete with applications of multivariate statistics, implementations of mathematical modelling methods such as IP are comparatively far fewer. Nevertheless, over the decades, there have been a variety of important applications and the vast majority of these fall within the IP rather than the LP category. In this paper, we offer a brief overview of the history of IP methodology. We subsequently review some domains where IP has been gainfully applied in psychology, such as test assembly, cluster analysis and classification and seriation and unidimensional scaling. An illustrative example of using IP to cluster respondents measured on items pertaining to substance abuse disorder is provided. Finally, we identify areas where IP might be applied in emerging areas of psychology, such as in the domain of network psychometrics.

Abstract

Behavior analysis is facing criticism based on its historical use of restrictive procedures and reliance on punishers to change behavior. A review of punishment procedures in behavior analytic literature has not been conducted since 2014; a more recent review can clarify whether the aforementioned criticism is substantiated by current research. In this review, we examined 59 studies published between 2014 and 2023 and extracted data on participant characteristics, procedural characteristics, and efficacy of procedures. We found an increase in the use of response interruption and redirection procedures, as well as more frequent evaluation of social validity, generalization, and maintenance as compared to previous decades. We also observed a decrease in functional assessment of target behaviors. Most importantly, we observed a decrease in physical forms of punishment, which may be considered more restrictive. We provide recommendations for future research, clinical practice, and advocacy.

Abstract

Background

In aged-care settings, direct care staff play a crucial role in supporting older people with communication needs. Many direct care staff, however, have unmet skill needs in interpersonal, intercultural, and intergenerational communication. Communication Partner Training (CPT) provides a potential solution. However, it is not known if existing programs address the diverse communication needs encountered in aged-care settings. We sought to identify the key features of existing CPT programs to determine their suitability for the Australian aged-care context.

Aims

To identify existing CPT programs relevant to aged-care settings and to describe their content and format.

Methods

A scoping review was conducted in alignment with the Joanna Briggs Manual for Evidence Synthesis and Preferred Reporting Items for Systematic Reviews and Meta-Analyses for Scoping Reviews reporting guidelines. Using a systematic search, we identified peer-reviewed articles from five electronic databases: PubMed, PsycINFO, Embase, Cochrane and CINAHL. All retrieved articles were screened by title and abstract; 20% were independently screened by a second reviewer. All full-text articles were independently assessed by two reviewers. Data describing the content and format of identified CPT programs was extracted using the Intervention Taxonomy and an author-developed tool.

Main Contribution

This review highlights critical gaps in existing CPT programs for aged-care settings. Identified programs were predominantly disorder-specific (79%), with the vast majority focusing on conditions like dementia or aphasia and failing to address broader communication needs arising from personal, social and environmental factors. Notably, no programs addressed intercultural communication, despite known cultural and linguistic diversity among aged-care workers and recipients in countries such as Australia. Furthermore, few (9%) included intergenerational communication considerations. Most programs relied on in-person delivery methods (67%), often led by health professionals (71%), which may be impractical for resource-constrained and geographically dispersed aged-care services. Furthermore, reported outcome measures varied (187 across 90 articles), and few evaluated both trainee and client (the ‘dyad’) outcomes. These findings underscore the need for comprehensive, scalable and contextually relevant CPT programs to address the complex communication challenges seen in aged-care settings.

Conclusions

There is a need for a comprehensive CPT program that is fit-for-purpose for direct care staff in aged-care settings. This program should address the multifaceted and intersecting communication support needs of aged-care recipients, including intercultural and intergenerational communication differences. The program should also incorporate resource-feasible delivery methods and evaluate dyadic communication outcomes. Closing these gaps is vital to enhancing quality of care and life for older adults in aged-care settings.

WHAT THIS PAPER ADDS

What is already known on the subject

Many older Australians have complex, unmet communication support needs. In aged-care settings, direct care staff play a crucial role in supporting older people to communicate. Many aged-care workers, however, have their own unmet skill needs in interpersonal, intercultural and intergenerational communication. Communication partner training (CPT) provides a potential solution. However, it is not known if existing programs address the diverse communication support needs encountered in aged-care settings.

What this paper adds to existing knowledge

Using a scoping review methodology, we identified and described CPT programs for direct support staff who work with older adults. Most CPT programs were disorder-specific and targeted communication needs in dementia or aphasia. As aged-care recipients have multifaceted, complex and intersecting communication support needs, these programs may fall short of addressing the training needs of aged-care workers. The mode of training delivery was predominately in-person and health professional-led. Such delivery modes may not support implementation given resource constraints across the Australian aged-care sector. CPT that can be feasibly implemented in aged-care settings to address complex and intersecting communication support needs is required.

What are the potential or actual clinical implications of this work?

Our analysis highlights the need for comprehensive, disorder-agnostic CPT tailored for aged-care staff to address diverse communication support needs. This CPT should consider scalable delivery modes effective across Australia's vast geography and limited trainer availability. It must include outcome measures reflecting the perspectives of communication support partners—older Australians in aged care with communication challenges. To tackle the health, personal and environmental communication barriers in aged care, a fit-for-purpose CPT program, co-designed with key stakeholders, is essential to ensure the training is both feasible and acceptable to meet the unmet needs of intended end-users.

ABSTRACT

Background

This review aimed to synthesise the literature about interventions for parents of adolescents with intellectual disability, including parental experience of receiving interventions and intervention effectiveness.

Methods

Eligible interventions aimed to improve parenting skills and/or parent–adolescent relationships, adolescent behavioural/emotional problems and/or parent well-being. ASSIA, EMBASE, Medline, PsycINFO and Web of Science were last searched on 11 July 2024. The TIDieR checklist and the MMAT were used for quality appraisal. A narrative synthesis was conducted. (Pre-registration: PROSPERO CRD42022384409).

Results

Twelve studies with 1041 families were included. Intervention descriptions were detailed; however, study quality was mixed. Nearly all studies reported the intervention was associated with positive effects on parenting, parent–adolescent relationships, adolescent behaviour/emotional problems or parent well-being. Three randomised controlled trials (RCTs) offer the strongest evidence but are limited in quality. All studies investigating parent experiences reported positive responses.

Conclusions

High-quality studies (e.g., RCTs) are needed to enable conclusions about efficacy and effectiveness.

Proliferation of the term “emotion dysregulation” in child psychopathology parallels the growing interest in processes that influence negative emotional reactivity. While it commonly refers to a clinical phenotype where intense anger leads to behavioral dyscontrol, the term implies etiology because anything that is dysregulated requires an impaired regulatory mechanism. Many cognitive, affective, behavioral, neural, and social processes have been studied to improve understanding of emotion dysregulation. Nevertheless, the defective regulatory mechanism that might underlie it remains unclear. This systematic review of research on processes that affect emotion dysregulation endeavors to develop an integrative framework for the wide variety of factors investigated. It seeks to ascertain which, if any, constitutes an impaired regulatory mechanism. Based on this review, we propose a framework organizing emotion-relevant processes into categories pertaining to stimulus processing, response selection and control, emotion generation, closed- or open-loop feedback-based regulation, and experiential influences. Our review finds scant evidence for closed-loop (automatic) mechanisms to downregulate anger arousal rapidly. Open-loop (deliberate) regulatory strategies seem effective for low-to-moderate arousal. More extensive evidence supports roles for aspects of stimulus processing (sensory sensitivity, salience, appraisal, threat processing, and reward expectancy). Response control functions, such as inhibitory control, show robust associations with emotion dysregulation. Processes relating to emotion generation highlight aberrant features in autonomic, endocrine, reward functioning, and tonic mood states. A large literature on adverse childhood experiences and family interactions shows the unique and joint effects of interpersonal with child-level risks. We conclude that the defective closed-loop regulatory mechanisms that emotion dysregulation implies require further specification. Integrating research on emotion-relevant mechanisms along an axis from input factors through emotion generation to corrective feedback may promote research on (a) heterogeneity in pathogenesis, (b) interrelationships between these factors, and (c) the derivation of better-targeted treatments that address specific pathogenic processes of affected youth.

ABSTRACT

Background

Borderline intellectual functioning (BIF) is a condition that involves limitations in cognitive skills that affect the daily functioning of people who present it. BIF has lost visibility in diagnostic manuals such as the DSM-5-TR and ICD-11, which relegate it to complementary categories of aspects requiring attention, rather than recognising it as a category of its own. This lack of recognition as well as unclear criteria for diagnosis underscores the need for a deeper understanding of BIF.

Method

The study conducted a scoping review to map the available evidence in the field of BIF. Following the PRISMA-ScR framework, ProQuest, WoS, SCOPUS and EBSCOhost databases were searched. Documents were selected based on inclusion criteria: date of publication (since 2012), study of BIF as a specific group and language (English or Spanish). A total of 138 documents were included, both academic and grey literature.

Results

The review mapped the literature into key categories: intellectual functioning, adaptive functioning and additions for a comprehensive evaluation. Most research focused on comorbid psychiatric, emotional and behavioural disorders associated with BIF, as well as cognitive aspects. Very few addressed adaptive functioning explicitly, a crucial area for diagnosing and supporting individuals with BIF, though many covered its domains (conceptual, social and practical). Studies predominantly used quantitative methodologies, with only a few incorporating qualitative methods and directly involving people with BIF.

Conclusions

The review emphasises the need for a clearer definition of BIF. Future studies should incorporate the perspectives of individuals with BIF to fully understand their needs and challenges across various life domains.

ABSTRACT

Introduction

The effects of cognitive remediation therapy (CRT) in adults with mental health disorders have been widely documented, but its effects in adolescents with mental health disorders remain poorly understood. This review aims to (1) determine the effects of CRT on cognition, symptoms and functioning for adolescents with mental health disorders and (2) evaluate the methodological quality of studies on CRT.

Methods

A systematic review and meta-analysis were conducted of randomised controlled trials of CRT involving adolescents with mental health disorders. Searches were conducted in databases for studies pertaining to CRT effects on cognition, social functioning and clinical symptoms. Methodological quality was assessed using the Clinical Trials Assessment Measure.

Results

Fourteen studies (N = 14) were included, with 11 independent samples (k = 11, 592 participants). Participants had various mental health disorders. CRT showed a small significant effect on cognition (g = 0.14, p = 0.02), particularly on processing speed, working memory and episodic memory. No significant effects were found for clinical symptoms (g = 0.04, p = 0.58) and social functioning (g = 0.06, p = 0.39). Methodological quality of included studies was variable, ranging from poor to good quality.

Conclusion

Included studies showed a small significant effect of CRT on cognition, and non-significant effects on clinical symptoms and social functioning in adolescents with mental health disorders. The lack of effects may be partly explained by limitations in the methodology of included studies. A critical analysis of current studies is presented and recommendations of core techniques to consider for future CRT studies are discussed.

ABSTRACT

Background

Adults with intellectual and/or developmental disabilities are disproportionately excluded from participation in research, consequently increasing disparities experienced by this group. Gatekeepers, individuals who control access to research participation opportunities, may either support or pose a barrier to inclusion in research. We sought to understand how gatekeepers serve as supports and barriers to the participation of people with intellectual and/or developmental disabilities in research and the factors that may drive their actions. We also sought to identify approaches to interacting with gatekeepers that promoted the sharing of research participation opportunities.

Methods

We conducted a scoping review of manuscripts published between January 2009 and September 2024 describing gatekeeping during recruitment for adults with intellectual and/or developmental disabilities in social/behavioural research. We conducted content analysis of 22 manuscripts to identify ‘gate opening’ actions (actions that support research participation) and ‘gate closing’ actions (actions that pose a barrier to research participation) at the point of recruitment. We also identified approaches researchers took when interacting with gatekeepers to promote gate opening actions.

Results

Gatekeepers' attitudes (e.g., valuing research) and knowledge about prospective participants were associated with gate opening actions. Gatekeepers' attitudes of mistrust of researchers and/or research, deprioritisation of research and presumed incapacity of people with intellectual and/or developmental disabilities to consent to, participate in and/or benefit from research participation were associated with gate closing actions. Gatekeepers' lack of information (e.g., about research and prospective participants) was also associated with gate closing actions. Restrictive organisational policies and gatekeepers' lack of resources (e.g., time) were also associated with gate closing actions. Approaches for interacting with gatekeepers that may foster gate opening actions included: addressing gatekeeper concerns, educating gatekeepers about the benefits of research participation and developing relationships with gatekeepers.

Conclusion

We identified several malleable factors that may drive gate opening and gate closing actions. Enhanced collaboration between researchers and gatekeepers may foster greater opportunities for individuals with intellectual and/or developmental disabilities to learn about research opportunities.

Background

Understanding the mechanisms of change and between-family differences in behavioural parenting interventions for children with attention-deficit/hyperactivity disorder (ADHD) may help personalise interventions. Therefore, we examined whether improvements in parenting are associated with changes in child behaviour and functional outcomes, and how these associations vary based on parents' baseline parenting levels.

Methods

We collected individual participant data including 19 randomised controlled trials focusing on children with ADHD (n = 1,720). Immediate post-intervention measures of child ADHD and oppositional behaviour severity, reported by parents and functional impairment reported by either the parent or probably masked clinicians, were treated as outcomes. We estimated pathways from intervention (vs. control) to child outcomes, via immediate post-intervention parent reports of constructive parenting (e.g. praise), non-constructive parenting (e.g. physical punishment) and parent–child affection (e.g. warmth), while controlling for baseline values of both child outcomes and parenting levels. Baseline values of each parenting variable were used as moderators of the mediated pathways.

Results

Improvements in parenting behaviours and parent–child affection immediately following the intervention jointly explained concurrent improvements in children's ADHD severity, oppositional behaviour and functional impairment. Furthermore, when reversing the direction of the pathways, improvements in all child outcomes jointly explained improvements in each aspect of parenting. Improvements in non-constructive parenting and parent–child affection uniquely accounted for intervention effects on functional impairment, especially for families with higher baseline levels of non-constructive parenting.

Conclusions

Our findings might indicate that improvements in both the behavioural and affective aspects of parenting are associated with concurrent reductions in child behaviour problems and functional impairment. However, more research is necessary to explore the potential causal directionality between parenting and child outcomes. Nonetheless, supporting families with poorer parenting skills may be especially important, as reductions in non-constructive parenting in these families are linked to stronger treatment effects on child functional impairment.

ABSTRACT

Background

Negative mental health implications of menopause found in the general population, combined with high rates of mental health conditions found in women with intellectual disabilities, provide rationale to examine the existing literature to determine the impact of menopause on women with intellectual disabilities.

Methods

The review was conducted using scoping review methodology by Arksey and O'Malley. A systematic search was conducted across multiple databases. Relevant articles were screened according to inclusion/exclusion criteria. Braun and Clarke's thematic analysis was utilised to identify themes.

Results

After screening, eight articles satisfied the inclusion/exclusion criteria, and after thematic analysis, themes found were: changes in mood, lack of reporting of psychological symptoms and difficulty attributing psychological symptoms to menopause.

Conclusions

Findings indicate the paucity of literature and the lack of attention paid to examining the impact of menopause on the experiences and mental health of women with intellectual disabilities.