Family Caregiver Adaptation during the Transition to Adulthood of Individuals with Intellectual Disabilities: A Scoping Review.

During the transition to adulthood, individuals diagnosed with intellectual disability (ID) and their family caregivers have unique experiences. This scoping review studies the sources of the family caregiver's objective burden, support, coping mechanisms, positive caregiving, and quality of life to understand the caregiver's adaptation process when the individual with ID transits to adulthood, according to Joanna Briggs Institute (JBI) Scoping Review methodology guidelines. The inclusion criteria included studies of family caregivers of any age who provide unpaid care and live with individuals diagnosed with ID who are transitioning to adulthood. Of 2875 articles identified, 12 published studies were included. The main themes included caregivers reporting dissatisfaction with the available adult services and exhaustion from being a caregiver. Overall, a vicious cycle of likely increased demands during the transition, with caregivers not being prepared to cope with these demands while concurrently being dissatisfied with the adult services system, leads the caregivers to develop a pervasive sense of helplessness. Future studies would benefit from recruiting caregivers from sources other than adult-only service centres and using qualitative (to identify the broad aspects of the key factors) and quantitative (to identify the significant differences between the key factors) methodologies.

Screening Children in India: Translation and Psychometric Evaluation of the Parents' Evaluation of Developmental Status and the Strength and Difficulties Questionnaire.

Timely screening and surveillance of children for developmental delay and social-emotional learning difficulties are essential in Low- and Middle-Income Countries like India. Screening measures like the Parents' Evaluation of Developmental Status (PEDS) and Strength and Difficulties Questionnaire (SDQ) are considered suitable for India due to their low cost, easy accessibility, and no training requirement for administration. However, India lacks validated screening measures, and the PEDS and SDQ have yet to be validated for children in India. The study aimed to translate the PEDS and SDQ from English to Hindi and psychometrically evaluate the same measures on children aged 4-8 years in India. The original PEDS and SDQ forms and their translations were pilot tested on 55 participants and evaluated using data from 407 children with typical development (TD) and 59 children with developmental disability (DD). Parents and teachers reported no meaningful discrepancy between the original and translated (Hindi) questionnaires. Internal consistency for the PEDS was acceptable, but unacceptable for most subscales on the SDQ, for both TD and DD samples. Test-retest reliability was poor for the PEDS but adequate for the SDQ. Results from known-group validity testing showed that the PEDS scores could be used to distinguish between the TD and DD samples. The results from this study provide further support for the use of the PEDS and SDQ in developing countries like India.

Parents' Evaluation of Developmental Status and Strength and Difficulties Questionnaire as Screening Measures for Children in India: A Scoping Review.

Due to the limited availability of suitable measures, screening children for developmental delays and social-emotional learning has long been a challenge in India. This scoping review examined the use of the Parents' Evaluation of Developmental Status (PEDS), PEDS: Developmental Milestones (PEDS:DM), and the Strength and Difficulties Questionnaire (SDQ) with children (<13 years old) in India. The scoping review was conducted following the Joanna Briggs Institute Protocol to identify primary research studies that examined the use of the PEDS, PEDS:DM, and SDQ in India between 1990 and 2020. A total of seven studies for the PEDS and eight studies for the SDQ were identified for inclusion in the review. There were no studies using the PEDS:DM. Two empirical studies used the PEDS, while seven empirical studies used the SDQ. This review represents the first step in understanding the use of screening tools with children in India.

Social-Emotional Development of Children in Asia: A Systematic Review.

There has been growing interest in the social-emotional development of children. However, the social-emotional development of children in Asia remains a knowledge gap. This systematic review identifies and summarizes existing studies on children's social-emotional development in Asia. We conducted a systematic review using the Guidelines for Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA). We reviewed 45 studies that met the inclusion criteria, and they were from 12 Asian countries, primarily the East Asia region (China and Hong Kong). Most of the studies were cross-sectional in design (n = 28, 62.2%). Six themes emerged, including (a) social-emotional development (overall) (n = 24, 53.3%); (b) social competence (n = 7, 15.6%); (c) emotional development (n = 5, 11.1%); (d) social-emotional learning (n = 3, 6.7%); (e) problem behavior (n = 3, 6.7%); (f) self-regulation (n = 2, 4.4%); and (g) both social-emotional learning and problem behavior (n = 1, 2.2%). The findings highlighted the paucity of studies, the need for examining more diverse variables in a similar population, and the low quality of intervention studies in social-emotional research in Asia. Research gaps indicate the need for more social-emotional and ethnocultural studies in other Asian regions. Parent and teacher knowledge of children's social-emotional functioning should be examined more closely in future research.

Dimensions, Measures, and Contexts in Psychological Investigations of Curiosity: A Scoping Review.

The study of curiosity as a construct has led to many conceptualisations, comprising of different dimensions. Due to this, various scales of curiosity have also been developed. Moreover, some researchers have conceived of curiosity as a general trait-like, while others have included contexts, such as the workplace, or education when investigating curiosity. This scoping review aims to scope the extant psychological literature on curiosity in order to better understand how it has been studied, specifically with regard to its dimensions, measures, and contexts. A total of 1194 records were identified, with 245 articles meeting the inclusion criteria. Results suggest that the majority of curiosity research examined curiosity as having multiple dimensions and analysed the dimensions individually, with a deprivation-type curiosity playing the biggest role. The measure most commonly used was the Epistemic Curiosity Scale, which also consisted of a deprivation-type curiosity as one of the dimensions. Findings also implied that curiosity was most studied in the context of the workplace. Supplementary findings included a lack of representation of non-Western countries, as well as needing to cross-validate a recently developed curiosity scale. This scoping review represents a consolidation of the curiosity literature and how it can further prosper.

Associations Between Openness Facets, Prejudice, and Tolerance: A Scoping Review With Meta-Analysis.

The personality factor of openness to experience, which encompasses curiosity, imagination, and a desire for new experiences, has been associated negatively with prejudice and positively with the closely related value of tolerance. While these relationships have been reviewed at the factor level, there has been no review of research at the lower facet level. This review aims to uncover the relationships between the facets of openness and the constructs of prejudice and tolerance. We conducted a preregistered scoping review with meta-analysis following the recommended guidelines from Joanna Briggs Institute. A total of 2,349 articles were reviewed, with 16 primary research articles (or 17 studies) meeting the criteria for inclusion. Aggregated effect sizes via random-effect meta-analysis revealed that all revised neuroticism-extraversion-openness personality inventory (NEO-PI-R) and international personality item pool (IPIP)-based facets of openness significantly predicted prejudice and tolerance. Out of the three measures [i.e., NEO-PI-R, IPIP-NEO, and honesty-humility, emotionality, extraversion, agreeableness, conscientiousness, and openness to experience personality inventory (HEXACO-PI), and the facets of openness examined], the NEO-PI-R facet of value was most strongly associated with prejudice. In contrast, the NEO-PI-R facet of aesthetics was the facet most strongly associated with tolerance. However, these results should be treated as preliminary in light of the small number of meta-analyzed studies and more primary research studies are needed to confirm the trends found in this review. This review represents the first step in the systematic investigation of the link between the facets of openness and components of prejudice and tolerance and contributes toward explaining prejudice and tolerance.

Coping with stress in parents of children with developmental disabilities

Abstract Background/Objective: Previous findings indicated that parents of children with developmental disabilities face greater care giving demands and report higher levels of stress. This study explores the styles and strategies of coping with stress among parents of children with developmental disabilities compared to parents of children with typical development. Method: 167 parents of children with developmental disabilities and 103 parents of typical development children participated as a voluntary. The CISS and the COPE Inventory were used to assess the coping styles and strategies in rearing a child. Results: The results from Multivariate Analysis indicated significant differences between parents of children with and without developmental disabilities in one of three coping styles and one of eight coping strategies. Parents of children with developmental disabilities less often used the avoidance-oriented style and emotional support strategy. The task-oriented style and strategies were the dominant approach in both groups of parents. In stressful situations connected with rearing a child, parents of children with developmental disabilities do not use as dominant strategies connected with seeking emotional support and religion, which occur in the parents of typical development children. Conclusions: The results suggest areas where coping may be different than in families of children without DD. (AU)

Resumen Antecedentes/Objetivo: Investigaciones previas muestran que los padres con hijos que padecen trastornos del desarrollo deben hacer frente a mayores demandas de atención y reportan mayor estrés. El presente estudio compara los estilos y estrategias de afrontamiento del estrés utilizados de los padres de hijos con trastornos del desarrollo con los utilizados por padres de hijos con desarrollo típico. Método: Participaron 167 padres de niños con trastornos del desarrollo y 103 padres de niños que muestran un desarrollo típico. Los inventarios CISS y COPE se utilizaron para evaluar los estilos y estrategias de afrontamiento. Resultados: Los resultados indicaron diferencias significativas entre los padres de hijos con y sin trastornos del desarrollo en uno de los tres estilos de afrontamiento y una de las ocho estrategias, utilizando con menos frecuencia el estilo orientado a la evitación y la estrategia de apoyo emocional, siendo los orientados a la tarea el enfoque dominante. En situaciones estresantes, los padres de niños con trastornos del desarrollo no utilizaron las estrategias de búsqueda de apoyo emocional o la religión. Conclusiones: Los resultados sugieren un afrontamiento diferente al de las familias con hijos sin discapacidades. (AU)

Coping with stress in parents of children with developmental disabilities.

ABSTRACT BACKGROUND/OBJECTIVE: Previous findings indicated that parents of children with developmental disabilities face greater care giving demands and report higher levels of stress. This study explores the styles and strategies of coping with stress among parents of children with developmental disabilities compared to parents of children with typical development. METHOD: 167 parents of children with developmental disabilities and 103 parents of typical development children participated as a voluntary. The CISS and the COPE Inventory were used to assess the coping styles and strategies in rearing a child. RESULTS: The results from Multivariate Analysis indicated significant differences between parents of children with and without developmental disabilities in one of three coping styles and one of eight coping strategies. Parents of children with developmental disabilities less often used the avoidance-oriented style and emotional support strategy. The task-oriented style and strategies were the dominant approach in both groups of parents. In stressful situations connected with rearing a child, parents of children with developmental disabilities do not use as dominant strategies connected with seeking emotional support and religion, which occur in the parents of typical development children. CONCLUSIONS: The results suggest areas where coping may be different than in families of children without DD.

RESUMEN ANTECEDENTES/OBJETIVO: Investigaciones previas muestran que los padres con hijos que padecen trastornos del desarrollo deben hacer frente a mayores demandas de atención y reportan mayor estrés. El presente estudio compara los estilos y estrategias de afrontamiento del estrés utilizados de los padres de hijos con trastornos del desarrollo con los utilizados por padres de hijos con desarrollo típico. MÉTODO: Participaron 167 padres de niños con trastornos del desarrollo y 103 padres de niños que muestran un desarrollo típico. Los inventarios CISS y COPE se utilizaron para evaluar los estilos y estrategias de afrontamiento. RESULTADOS: Los resultados indicaron diferencias significativas entre los padres de hijos con y sin trastornos del desarrollo en uno de los tres estilos de afrontamiento y una de las ocho estrategias, utilizando con menos frecuencia el estilo orientado a la evitación y la estrategia de apoyo emocional, siendo los orientados a la tarea el enfoque dominante. En situaciones estresantes, los padres de niños con trastornos del desarrollo no utilizaron las estrategias de búsqueda de apoyo emocional o la religión. CONCLUSIONES: Los resultados sugieren un afrontamiento diferente al de las familias con hijos sin discapacidades.

Views of young people in Malaysia on mental health, help-seeking and unusual psychological experiences.

AIM: Mental health problems are prevalent among young people in Malaysia yet access to specialist mental health care is extremely limited. More context-specific research is needed to understand the factors affecting help-seeking in youth, when mental health problems typically have first onset. We aimed to explore the attitudes of vulnerable young Malaysians regarding mental health problems including unusual psychological experiences, help-seeking and mental health treatment. METHODS: In the present study, nine young people (aged 16-23 years) from low-income backgrounds participated in a semi-structured interview about their perspectives on mental health problems, unusual psychological experiences and help-seeking. RESULTS: Four themes were developed using thematic analysis. "Is it that they [have] family problems?" reflected participants' explanatory models of mental health problems. "Maybe in Malaysia" was concerned with perceptions of Malaysian culture as both encouraging of open sharing of problems and experiences, but also potentially stigmatizing. "You have to ask for help" emphasized the importance of mental health help-seeking despite potential stigma. "It depends on the person" addressed the challenges of engaging with psychological therapy. CONCLUSIONS: We conclude that young people in Malaysia may hold compassionate, non-stigmatizing views towards people experiencing mental health problems and a desire to increase their knowledge and understandings. Yet societal stigma is a perceived reputational risk that may affect mental health problem disclosure and help-seeking. We suggest that efforts to improve mental health literacy would be valued by young Malaysians and could support reduced stigma and earlier help-seeking.

Assessing social recovery of vulnerable youth in global mental health settings: a pilot study of clinical research tools in Malaysia.

BACKGROUND: A social recovery approach to youth mental health focuses on increasing the time spent in valuable and meaningful structured activities, with a view to preventing enduring mental health problems and social disability. In Malaysia, access to mental health care is particularly limited and little research has focused on identifying young people at risk of serious socially disabling mental health problems such as psychosis. We provide preliminary evidence for the feasibility and acceptability of core social recovery assessment tools in a Malaysian context, comparing the experiential process of engaging young Malaysian participants in social recovery assessments with prior accounts from a UK sample. METHODS: Nine vulnerable young people from low-income backgrounds were recruited from a non-government social enterprise and partner organisations in Peninsular Malaysia. Participants completed a battery of social recovery assessment tools (including time use, unusual experiences, self-schematic beliefs and values). Time for completion and completion rates were used as indices of feasibility. Acceptability was examined using qualitative interviews in which participants were asked to reflect on the experience of completing the assessment tools. Following a deductive approach, the themes were examined for fit with previous UK qualitative accounts of social recovery assessments. RESULTS: Feasibility was indicated by relatively efficient completion time and high completion rates. Qualitative interviews highlighted the perceived benefits of social recovery assessments, such as providing psychoeducation, aiding in self-reflection and stimulating goal setting, in line with findings from UK youth samples. CONCLUSIONS: We provide preliminary evidence for the feasibility and acceptability of social recovery assessment tools in a low-resource context, comparing the experiential process of engaging young Malaysian participants in social recovery assessments with prior accounts from a UK sample. We also suggest that respondents may derive some personal and psychoeducational benefits from participating in assessments (e.g. of their time use and mental health) within a social recovery framework.

Parenting and Future Anxiety: The Impact of Having a Child with Developmental Disabilities.

This study examined differences in future anxiety (FA) among mothers and fathers of children with and without developmental disabilities (DD), and it also analyzed differences in FA within the group of parents of children with DD taking into consideration parent-related factors and child-related factors. A group of 167 parents of children with DD were compared to a group of 103 parents of children with typical development. The group with DD included children with autism spectrum disorders, sensory disorders, and intellectual disability. Parents completed the Future Anxiety Scale-FAS1. Mothers of children with DD had a higher general level of FA than fathers of children with and without DD. Mothers of children with DD reported higher anxiety about their future health and the meaning of their future life than fathers of children with DD. For parents of children with DD, those with lower education, male children, and older children reported higher FA. The group at risk of highest general FA are mothers of children with DD, especially those without a professional career. Similarly, parents of teenagers and/or sons with DD are at increased risk of FA.

Cognitive functioning following traumatic brain injury: The first 5 years.

OBJECTIVE: This study reports the results from a 5-year longitudinal investigation of the prevalence and severity of cognitive deficits following significant (i.e., ventilation required for > 24 hours) traumatic brain injury. The changes in performance, either improvement or decline, across five domains of cognitive functioning are described. METHOD: A group of 56 adults was assessed at approximately 6 months, 1 year, and 5 years following injury. RESULTS: Impairment was evident on all measures but prevalence and rate of improvement varied. Overall, by 5 years post-injury over 85% of patients were not impaired on measures of general intelligence, simple attention, and visual perception. However, 28% of patients continued to show some degree of impairment on complex attention and verbal fluency, and performance on verbal memory remained impaired for 60% of patients. There was also evidence for deterioration in complex attention and verbal memory between 1 year and 5 years. ANOVAs showed that improvement occurred on most measures between 6 months and 1 year, but there was both improvement and decline on some measures between 1 year and 5 years. CONCLUSIONS: The findings show that there is considerable heterogeneity in cognitive outcome following TBI, with some deterioration evident over the long term.

Cognitive functioning following traumatic brain injury: A five-year follow-up.

OBJECTIVE: To describe the long-term prevalence and severity of cognitive deficits following significant (i.e., ventilation required for >24 hours) traumatic brain injury. To assess a comprehensive range of cognitive functions using psychometric measures with established normative, reliability, and validity data. METHODS: A group of 71 adults was assessed at approximately five years (mean = 66 months) following injury. Assessment of cognitive functioning covered the domains of intelligence, attention, verbal and visual memory, visual-spatial construction, and executive functions. RESULTS: Impairment was evident across all domains but prevalence varied both within and between domains. Across aspects of intelligence clinical impairment ranged from 8-25% , attention 39-62% , verbal memory 16-46% , visual memory 23-51% , visual-spatial construction 38% , and executive functions (verbal fluency) 13% . In addition, 3-23% of performances across the measures were in the borderline range, suggesting a high prevalence of subclinical deficit. CONCLUSIONS: Although the prevalence of impairment may vary across cognitive domains, long-term follow-up documented deficits in all six domains. These findings provide further evidence that while improvement of cognitive functioning following significant traumatic brain injury may be possible, recovery of function is unlikely.

Levels of Visual Stress in Proficient Readers: Effects of Spectral Filtering of Fluorescent Lighting on Reading Discomfort.

Visual stress (VS) affects reading in 5-12% of the general population and 31-36% of children with reading disorders. Symptoms include print distortions and visual discomfort when reading, and are exacerbated by fluorescent lighting. Prior research has indicated that VS can also affect proficient readers. We therefore examined levels of visual discomfort in a group of expert readers (n = 24) under both standard and spectrally-filtered fluorescent lighting. Participants rated their awareness of six symptoms of VS under each lighting condition. Under the standard condition, 4(16.7%) of the group recorded moderate to high levels of VS. Differences in symptom levels and reading speed between conditions were analysed using the Wilcoxon Signed Rank Test. Under the filter condition, the group reported less discomfort regarding all six symptoms of VS surveyed. The differences were significant with respect to three of the symptoms (p = .029 - p < .001), with a medium effect size in all of them (r = .31 - r = .46) and total score (p = .007; r = .39). Variations in reading proficiency included significantly fewer self-corrections (p = .019) and total errors (p = .004). Here we present evidence that VS-type symptoms of reading discomfort are not confined to populations with reading difficulties and may also occur in proficient readers, and that simple adaptations to fluorescent lighting may alleviate such symptoms.

Levels of visual stress in proficient readers: effects of spectral filtering of fluorescent lighting on reading discomfort

Visual stress (VS) affects reading in 5-12% of the general population and 31-36% of children with reading disorders. Symptoms include print distortions and visual discomfort when reading, and are exacerbated by fluorescent lighting. Prior research has indicated that VS can also affect proficient readers. We therefore examined levels of visual discomfort in a group of expert readers (n = 24) under both standard and spectrally-filtered fluorescent lighting. Participants rated their awareness of six symptoms of VS under each lighting condition. Under the standard condition, 4(16.7%) of the group recorded moderate to high levels of VS. Differences in symptom levels and reading speed between conditions were analysed using the Wilcoxon Signed Rank Test. Under the filter condition, the group reported less discomfort regarding all six symptoms of VS surveyed. The differences were significant with respect to three of the symptoms (p = .029 - p < .001), with a medium effect size in all of them (r = .31 - r = .46) and total score (p = .007; r = .39). Variations in reading proficiency included significantly fewer self-corrections (p = .019) and total errors (p = .004). Here we present evidence that VS-type symptoms of reading discomfort are not confined to populations with reading difficulties and may also occur in proficient readers, and that simple adaptations to fluorescent lighting may alleviate such symptoms (AU)

No disponible

Effort test failure: toward a predictive model.

Predictors of effort test failure were examined in an archival sample of 555 traumatically brain-injured (TBI) adults. Logistic regression models were used to examine whether compensation-seeking, injury-related, psychological, demographic, and cultural factors predicted effort test failure (ETF). ETF was significantly associated with compensation-seeking (OR = 3.51, 95% CI [1.25, 9.79]), low education (OR:. 83 [.74, . 94]), self-reported mood disorder (OR: 5.53 [3.10, 9.85]), exaggerated displays of behavior (OR: 5.84 [2.15, 15.84]), psychotic illness (OR: 12.86 [3.21, 51.44]), being foreign-born (OR: 5.10 [2.35, 11.06]), having sustained a workplace accident (OR: 4.60 [2.40, 8.81]), and mild traumatic brain injury severity compared with very severe traumatic brain injury severity (OR: 0.37 [0.13, 0.995]). ETF was associated with a broader range of statistical predictors than has previously been identified and the relative importance of psychological and behavioral predictors of ETF was evident in the logistic regression model. Variables that might potentially extend the model of ETF are identified for future research efforts.

Anonymous indexing of health conditions for a similarity measure.

A health social network is an online information service which facilitates information sharing between closely related members of a community with the same or a similar health condition. Over the years, many automated recommender systems have been developed for social networking in order to help users find their communities of interest. For health social networking, the ideal source of information for measuring similarities of patients is the medical information of the patients. However, it is not desirable that such sensitive and private information be shared over the Internet. This is also true for many other security sensitive domains. A new information-sharing scheme is developed where each patient is represented as a small number of (possibly disjoint) d-words (discriminant words) and the d-words are used to measure similarities between patients without revealing sensitive personal information. The d-words are simple words like "food,'' and thus do not contain identifiable personal information. This makes our method an effective one-way hashing of patient assessments for a similarity measure. The d-words can be easily shared on the Internet to find peers who might have similar health conditions.

Development and psychometric evaluation of a measure to assess distress in partners of Australian combat veterans.

OBJECTIVE: The aim of the present study was to develop and evaluate a multidimensional measure of distress experienced by partners of Australian combat veterans. METHOD: The Partners of Veterans Distress Scale (POV-DS) was developed using factor analysis on a sample of 665 female members of Partners of Veterans Association of Australia. Content validity for the scale was established by using focus groups and expert feedback during item development phase. In addition, two self-report inventories were administered to assess physical/mental health, and satisfaction with life. RESULTS: Following principal-axis factoring, 45 items were retained, loading on seven distinct but correlated factors: Sleep problems, Hyper-vigilance, Social isolation, Financial problems, Intimacy problems, Exhaustion, and Negative affect. The factor structure was cross-validated using confirmatory factor analysis on a hold-out sample. The distress subscales all exhibited excellent internal consistency (alphas ranged from 0.84 to 0.95). Validation analyses revealed subscales derived from the seven-factor model explained 31% to 45% of the variance in partners' physical health, mental health, and satisfaction with life. CONCLUSIONS: The study found that the POV-DS is a reliable and valid tool for assessing distress in partners of Australian combat veterans.

Frequency of behavioural problems at one year following traumatic brain injury: correspondence between patient and caregiver reports.

A group of 62 adults with significant (i.e., ventilation required for > 24 hours) traumatic brain injury (TBI) were assessed approximately one year following their injury. The people with TBI and their primary caregivers completed the patient and relative/friend versions respectively, of the 20-item Head Injury Behaviour Rating Scale (HIBS). Responses by the patient and caregiver groups were compared for the total number of problems reported and the frequency of specific problem behaviours. The caregiver group reported a greater total number of problem behaviours and a higher frequency for 19 of the 20 specific behaviours. These differences between the patients' and caregivers' reports were statistically significant for seven of the 19 problem behaviours. The majority (86%) of these significant differences were on items from the Behavioural Regulation, rather than the Emotional Regulation, subscale of the HIBS. The implications of these findings for the practice of neuropsychological rehabilitation are presented.

Confirmatory factor analysis of the Wechsler Intelligence Scale for Children--Third Edition in an Australian clinical sample.

A confirmatory factor analysis was conducted on the Wechsler Intelligence Scale for Children-Third Edition (WISC-III; D. Wechsler, 1991) with a sample of 579 Australian children referred for assessment because of academic difficulties in the classroom. The children were administered the WISC-III as part of the initial eligibility determination process for funding of special education services. The children were aged between 6 years and 16 years 7 months. One-, two-, three-, and four-factor models were tested. The four-factor model proposed in the WISC-III manual fit the data significantly better than all other models tested.