Age-Related Changes in Functional Skills and Daily Life Task Management Among Autistic Youth.

IMPORTANCE: Autistic youth who graduate with a high school diploma may experience challenges in acquiring functional skills for everyday independence. Few studies have focused on how their functional and self-management skills change during the transition to adulthood. OBJECTIVE: To examine cross-sectional differences and longitudinal changes in the functional and self-management skills of transition-age autistic youth. DESIGN: Exploratory longitudinal study (18-mo follow-up). SETTING: Community. PARTICIPANTS: Autistic high school students who graduated with a high school diploma and their parents (N = 50). OUTCOMES AND MEASURES: Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (ASD). RESULTS: Older youth (ages 18-20 yr) had significantly lower normative Social/Cognitive and Responsibility domain scores (i.e., self-management) than youth ages 14-17 yr. Approximately 2 yr later, youth in both age groups significantly improved in scaled scores on the Daily Activities and Responsibility domains. CONCLUSIONS AND RELEVANCE: Autistic youth's functional and self-management skills fell below those of nonautistic peers; however, these skills do change over time and are therefore appropriate targets for intervention. Plain-Language Summary: The findings of this study highlight the importance of focusing on the functional and self-management skills of autistic youth as part of their transition to adulthood. Occupational therapists can play a valuable role in helping autistic youth to achieve independence as adults by assessing their functional needs and strengths and by providing client-centered interventions.

Describing Outcomes in Autistic Young Adults One Year After High School Graduation.

PURPOSE: Research documents poor outcomes for autistic adults in the domains of employment, independent living, and social relationships. Measurement and sample limitations in prior studies may have amplified past estimates of poor outcomes. The goal of the current study was to improve upon past approaches and to create and describe a measurement approach to capture adult outcomes that reflected the context of young adulthood and the perspectives of autistic individuals, pairing objective outcome indicators with subjective satisfaction indicators. METHODS: Thirty-six autistic young adults (mean age 19.8 years) and a parent completed self-report surveys. Using these data, we defined an objective and subjective (i.e., satisfaction) outcome indicator in each of three domains: productivity (employment or post-secondary education), social well-being (frequency of contact with friends), and living situation (autonomy). RESULTS: Three-quarters of young adults experienced at least 5 out of 6 positive outcomes. Over 90% were engaged in school, work, or a structured transition program, and an equal percentage were satisfied with their productivity activity. Over three-quarters of adults had a good amount of contact with friends and were satisfied with their social life. Most young adults had a moderate level of autonomy in their daily lives, and all were satisfied with their living situation. CONCLUSION: Tailoring outcome measurement approaches specifically for autistic young adults provided a more optimistic portrayal of outcomes than previously noted in the literature. The approach used better reflects a neurodiversity approach and may be useful for evaluating the effectiveness of transition services or interventions.

Conceptualizing Adult Dysphagia in the United States Within the International Classification of Functioning, Disability and Health (ICF).

Despite the well-documented safety concerns and effect on quality of life, there does not yet exist a wide-reaching framework that links the etiologies of swallowing disorders to the potential short- and long-term outcomes in the context of International Classification of Functioning, Disability and Health (ICF). This paper introduces an expert-reviewed conceptual framework to highlight common etiologies of dysphagia as well as integrate immediate outcomes of dysphagia with long-term outcomes of dysphagia in terms of medical problems, health-related quality of life, functional effect, and psychosocial features. It also outlines the potential cyclical nature of long-term dysphagia outcomes perpetuating the original dysphagia. This framework serves to inform clinicians of important dysphagic outcomes and to bring awareness to long-term outcomes that should be monitored by health care professionals, caregivers, or people with dysphagia.

Parenting With and Beyond Cancer: A Photo-Elicitation Study.

The purpose of this study was to understand the occupational performance of parents with cancer and to understand if photo-elicitation would provide new insights into these experiences. In a semi-structured photo-elicitation interview, 36 participants living with and beyond cancer who had children under 18 years old shared and discussed photographs related to their parenting experiences. Transcribed interviews were analyzed using thematic analysis. Two main themes were identified. Parents shared how they (a) managed daily responsibilities and (b) maintained connection with their family. Across all types, stages and phases of the cancer continuum parents shared experiences related to maintaining child and family responsibilities and maintaining connection with their children. Photo-elicitation was an efficient and effective method to gather rich data from parents living with cancer. The results emphasize the clinical utility of using photo-elicitation to understand the occupational performance of parents throughout the cancer continuum of care.

Understanding the daily activities of parents with cancer through picturesThe purpose of this study was to understand the experiences of parents living with and beyond cancer. We used pictures taken by parents about their daily life to guide interviews to see if this approach would provide new insights into their daily experiences. Thirty-six parents with a cancer diagnosis (both mothers and fathers) who had children under 18 years of age participated in interviews. Interviews were analyzed using qualitative methods. Parents shared how they managed daily responsibilities and stayed connected with their family while living with and beyond cancer. Discussing the parents' pictures during the interviews gave researchers a deeper understanding of their experiences living with cancer. The study sample consisted of primarily non-Hispanic White, well-educated parents. Therefore, the results may only be applicable to this specific population.

Adolescents' Perspectives on Learning to Manage the Responsibilities of Adulthood.

IMPORTANCE: Throughout childhood, youth learn the skills they need to carry out their daily life tasks. Despite the importance of being able to manage these tasks to succeed in adulthood, limited research has examined the process through which youth learn to do so. OBJECTIVE: To investigate adolescents' perspectives of parental approaches that help them learn to manage daily responsibilities. DESIGN: Qualitative pilot study. SETTING: Community. PARTICIPANTS: Eight adolescents with and without disabilities. RESULTS: Semistructured interviews with adolescents were analyzed using recursive, conventional content analysis. Interviews asked about how adolescents viewed the process of developing the skills needed to manage daily responsibilities independently. Parent approaches identified by the adolescents fit into three overarching themes: Parents teach them how to carry out and manage responsibilities, monitor them as they become more responsible for tasks, and provide varied levels of independence. The approaches described by the adolescents explain an implicit and transactional process of shifting responsibility for daily life tasks from parents to youth. CONCLUSIONS AND RELEVANCE: Further investigation of the transfer of responsibility for daily life tasks is necessary to build our understanding of this complex process and support successful transition to adulthood. What This Article Adds: Adolescents described several approaches parents used to help them to learn to manage tasks, which may provide direction for occupational therapy clinicians working with youth who are transitioning to adulthood.

Is Mobility Sufficient to Understand Community Participation of Adolescents and Young Adults With Cerebral Palsy? The Mediating and Moderating Roles of Contextual Factors.

OBJECTIVE: To explore whether self-determination and family socioeconomic status (SES) mediate and/or moderate the relationship between mobility and community participation of adolescents and young adults with cerebral palsy (CP). DESIGN: Survey. SETTING: Online platform. PARTICIPANTS: Of 55 eligible adolescents/young adults with CP, 50 agreed to participate and 2 were excluded. The final convenience sample included 48 individuals (N=48), aged 15-32 years, levels I-IV of the Gross Motor Function Classification System and I-II of the Communication Function Classification System. MAIN OUTCOME MEASURES: The Temple University Community Participation Measure documented the amount, breadth, and insufficiency/sufficiency ratios of participation across 26 community settings. The ARC Self-determination Scale and the Mobility Scale of the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT) measured individuals' self-determination (ie, autonomy, psychological empowerment, self-realization) and mobility skills, respectively. The Brazilian Economic Classification Criteria-2021 assessed family SES. RESULTS: Analyses of mediating/moderating effects revealed that the influence of individuals' mobility skills on their breadth of community participation was mediated by autonomy. Family SES moderated the indirect effect of mobility on community participation breadth through autonomy. When the model was adjusted for participants' age, individuals with higher SES reported greater breadth in community participation than those from moderate and lower SES for all mobility levels. However, the magnitude of the differences among individuals of different SES levels diminished as mobility increased. CONCLUSIONS: The mobility skills of youths with CP influence their community participation through autonomy. To foster greater engagement of these individuals in the community, rehabilitation professionals should focus not only on improvement of mobility skills but also on the promotion of self-determined behaviors, especially autonomy.

Geographic intelligence to investigate community participation: a scoping review.

PURPOSE: To understand the applicability and unique contributions of global positioning system (GPS) and geographic information system (GIS) technologies to investigate individuals' participation in the community. METHODS: A scoping review was conducted to summarize studies that employed GPS and/or GIS to assess community participation. Systematic literature searches were performed using nine electronic databases, up to April 2022. Two independent reviewers screened studies for eligibility and extracted data from the selected studies. RESULTS: The searches retrieved 628 articles, of which 36 met the inclusion criteria. In 31 studies, a GPS unit or GPS-enabled device monitored the community mobility of individuals with different health conditions. Tracking periods varied from five hours to 30 consecutive days. The spatiotemporal parameters obtained from satellite-based data provided information about individuals' presence in the community. Most studies combined GPS with other measuring tools (self-report diaries/questionnaires, qualitative interviews) to capture a broader description of community participation. CONCLUSIONS: GPS and GIS are viable approaches for advancing research as they provide unique information about community participation not easily captured by other methods. The combination of available methods comprehensively address the physical and social dimensions of this construct.IMPLICATIONS FOR REHABILITATIONGlobal positioning system (GPS) and geographic information system (GIS) technology allows direct and real-time quantification of patterns of individuals' community mobility.The geographic area where individuals participate in daily living activities complements information from self-report diaries/questionnaires.Combining GPS technology with self-report diaries/questionnaires allows a broader description of individuals' community participation, addressing respectively both its physical and social dimensions.Knowledge of individuals' access to and involvement in community locations/situations may help therapists design interventions to improve community participation.

How have Participation Outcomes of Autistic Young Adults been Measured? A Scoping Review.

Autistic young adults experience challenges participating in the workforce, post-secondary schooling, and living in the community. We examined how participation outcomes have been measured in autistic young adults. Articles (n = 113) were identified through database searches and citation tracking. Guided by current models in the literature, data were extracted for each measure of participation. Results include a description of the studies in the review, the extent to which participation across life situations has been addressed, and a critical analysis of the measures used to describe participation. While there is some breadth in the investigation of participation across diverse life situations, there is limited depth in what the measures capture and many measures used lack psychometric support.

Uso da mão de assistência e o desempenho bimanual no autocuidado de crianças com paralisia cerebral unilateral espástica.

OBJETIVO: Examinar a relação entre o uso da mão de assistência em atividades bimanuais e o desempenho de crianças nas atividades e tarefas de autocuidado. MÉTODO: Analisamos retrospectivamente dados da funcionalidade diária (Inventário de Avaliação Pediátrica de Incapacidade [PEDI]) e do desempenho bimanual (Avaliação da Mão de Assistência [AHA]) de 112 crianças (idade média: 8 anos 10 meses [DP 2 anos 1 mês], amplitude 3 anos 7 meses-17 anos 4 meses; 66 meninos, 46 meninas) com paralisia cerebral (PC) unilateral espástica. Nós usamos análise Rasch para examinar a relação entre os escores individuais nos itens do AHA e nos itens de autocuidado (habilidades funcionais e assistência do cuidador) do PEDI. RESULTADOS: A maioria das habilidades funcionais e das tarefas de assistência do cuidador de autocuidado ficaram localizadas no meio do contínuo unidimensional. Estes itens apresentaram níveis de dificuldade semelhantes aos itens do AHA relacionados à coordenação efetiva das duas mãos, cadência, e uso da mão de assistência para estabilizar e soltar objetos, bem como variações nos movimentos dos braços. INTERPRETAÇÃO: A distribuição dos itens de autocuidado do PEDI e itens do AHA ao longo do contínuo unidimensional ilustra a relação entre o uso da mão de assistência e o desempenho bimanual em autocuidado. Interpretação sobre a localização dos itens na hierarquia do contínuo unidimensional pode ajudar no raciocínio clínico dos terapeutas e na sugestão de objetivos de intervenção para melhorar a função manual e a funcionalidade diária de crianças com PC unilateral espástica. Tais aplicações necessitam de investigação futura.

Assisting hand use and self-care bimanual performance of children with unilateral spastic cerebral palsy.

AIM: To examine the relationship between assisting hand use in bimanual activities and children's self-care activities and task performance. METHOD: We retrospectively analysed daily functioning (Pediatric Evaluation of Disability Inventory [PEDI]) and bimanual performance (Assisting Hand Assessment [AHA]) data from the assessment of 112 children (mean age: 8 years 10 months [SD 2 years 1 month], range 3 years 7 months-17 years 4 months; 66 males, 46 females) with unilateral spastic cerebral palsy (CP). We used Rasch analysis to examine the relationship between individual item scores from the AHA and the self-care items (functional skills, caregiver assistance) from the PEDI. RESULTS: Most self-care functional skills and caregiver-assisted tasks were located on the middle of the unidimensional continuum. These items showed similar levels of difficulty as the items from the AHA related to the effective coordination of two hands, appropriate pace, and use of the assisting hand to stabilize and release objects, as well as variations in arm movements. INTERPRETATION: The distribution of the PEDI self-care and AHA items along the unidimensional continuum illustrates the relationship between assisting hand use and self-care bimanual performance. Interpretation of the items' locations on the hierarchical unidimensional continuum may be helpful to therapists' clinical reasoning and suggest intervention goals to improve the hand function and daily functioning of children with unilateral spastic CP. Such an application needs further investigation.

Metacognition Mediates the Effect of Social Communication and Internalizing Behaviors on Self-management of Daily Life Tasks for Diploma-Track Autistic Youth.

Social communication and executive functioning challenges as well as co-occurring anxiety/depression may make acquiring the skills needed to manage daily life tasks difficult for diploma-track autistic youth, thus limiting their participation in adult roles. This study describes the associations between executive function, social communication skills, and internalizing behaviors on task management in academically capable autistic adolescents (n = 46) using multiple regression with mediator analysis. The three predictors and youth age explained a moderate amount of variance in task management. Metacognition mediated the effect of social communication skills and internalizing behaviors on task management. Relations between underlying factors that influence self-management of daily life tasks are complex, supporting the need for multifaceted assessment and intervention approaches for academically capable autistic youth.

Self-management of daily life tasks in diploma-track youth with disabilities.

PURPOSE: Youth with disabilities who graduate with a regular high school diploma often continue to have difficulties in their daily functioning that ultimately impact adulthood outcomes. To better understand these functional difficulties and determine how best to address them, it is important to distinguish deficits in discrete skills from difficulty organizing skills to self-manage complex tasks associated with adult roles. The purpose of this study was to explore the extent to which challenges in social, executive function and behavior management factors relate to these two aspects of daily functioning. METHODS: This is a secondary analysis of the National Longitudinal Transition Study 2 funded by the United States Department of Education. The direct and indirect associations between youth underlying factors and self-management of daily life tasks (SMDLT) versus discrete functional skills were modelled using structural equation modelling. RESULTS: A model incorporating social skills, communication, and behavior regulation explained 55% of the variance in SMDLT. In contrast, the model predicting discrete functional skills had fewer significant associations and described less variance (37%) in the outcome. CONCLUSIONS: Findings suggest that using measures of SMDLT and designing targeted interventions for SMDLT might help improve participation in independent living and productivity for diploma-track youth with disabilities.Implications for rehabilitationSuccessful transition from high school to adult roles requires the ability to self-manage the daily life tasks required for those roles, such as employment, post-secondary education, and independent living.The ability to self-manage daily tasks is distinct from mastery of discrete functional skills and should be assessed with measures that uniquely examine this domain.Social and communication skills, executive functioning, and behavioral regulation, are important contributors to the ability to self-manage life tasks for diploma-track youth with disabilities and should be incorporated into multifaceted interventions.Interventions to improve self-management of tasks should include teaching strategies and practice coordinating underlying skills in flexible ways that meet the varying demands of tasks and diverse environments.

Preparation for Adulthood: Shifting Responsibility for Management of Daily Tasks From Parents to Their Children.

IMPORTANCE: Limited research has described the timing of acquisition of the broad range of skills required for the transition to adulthood. OBJECTIVE: To describe the timing of the shift of responsibility for daily tasks from parent to child. DESIGN: This study used an existing data set of parent responses to 49 items in the Responsibility domain of the Pediatric Evaluation of Disability Inventory Computer Adaptive Tests. PARTICIPANTS: A U.S. nationally representative sample of 2,205 typically developing children and youth ages 0 to 20 yr. OUTCOMES AND MEASURES: Descriptive analyses focused on two ages: (1) starting age (when >50% of parents reported their child was taking at least some responsibility for a task) and (2) full responsibility age (when >50% of parents reported their child was taking full responsibility for the task). RESULTS: The process of shifting responsibility for daily life tasks from parent to child typically occurred over a long period. Many task items had an interval of 5 yr from starting age to full responsibility age; the longest interval was 15 yr. Youth began assuming responsibility for more complex tasks and tasks that involved more risk at ages 10 to 15. CONCLUSIONS AND RELEVANCE: Results can serve as a reference for the timing of the transition to greater self-management of daily life tasks across childhood and adolescence. Timing of responsibility shifts may reflect a combination of development of underlying capacities and social transitions. Executive functioning may be especially relevant for management of the more complex tasks required in daily life in adulthood. WHAT THIS ARTICLE ADDS: The transfer of responsibility for managing tasks of daily life from parents to children often extends over a period of many years. Clinicians may find the results helpful when discussing the future with parents of young people with disabilities and other chronic conditions and the tasks that their children must learn to manage for independent living as an adult.

Identifying School-Based Factors that Predict Employment Outcomes for Transition-Age Youth with Autism Spectrum Disorder.

There is a growing need to provide appropriate services to help students with autism spectrum disorder (ASD) transition to employment. Limited research has investigated what aspects of support should be prioritized when preparing youth with ASD for employment. By conducting structural equation modeling using a nationally-representative dataset on high school students receiving special education services (NLTS-2), this study examined the malleable predictors of employment during the transition and developed a model to examine the relationships between predictors and employment outcomes. The findings suggested two pathways for youth with ASD. For youth with higher daily functioning skills (DFS), academic performance mediated the relationship between parent participation and employment. For youth with lower DFS, school-based transition supports was the key mediator.

Determinants of Time to Care for Children and Adolescents With Disabilities.

Time use studies uncover the organization of daily routine of families of children with disabilities. The objective of this study is to identify determinants of time spent caring for children/adolescents with cerebral palsy (CP), autism spectrum disorder (ASD), and typical development (TD). Participants were caregivers of children/adolescents with/without disability. Structural equation modeling tested a proposed model of time spent in child care. The variables in the model were as follows: questionnaire (families' socioeconomic status [SES]), children's functioning (The Pediatric Evaluation of Disability Inventory-Computer Adaptive Test [PEDI-CAT]); hours of care (daily diaries), number of adaptations used, and help with child care (parents' report). Distinct variable combinations explained 78% of the variation in the time to care (TD model), followed by 42% (ASD) and 29% (CP). Adaptations indirectly affected time to care through its effect on functioning (CP); family's SES affected functioning through its effect on adaptation use (ASD). In conclusion, knowledge of factors affecting caregivers' time spent on children's care help occupational therapists implement family-centered strategies.

Variables Associated With Shift of Responsibility for Daily Tasks From Parents to Children With and Without Disabilities.

IMPORTANCE: No study has directly investigated which variables are associated with the shift of responsibility for managing daily tasks from parent to child in the transition to adulthood. OBJECTIVE: To examine characteristics associated with responsibility for managing daily life tasks in youth with and without disabilities. DESIGN: A secondary data analysis of parent-report data on typically developing (TD) youth and youth with disabilities. SETTING: An online panel that has regularly participated in online surveys. PARTICIPANTS: A nationally representative sample of 2,205 TD U.S. children and youth, ages 0 to 20 yr, 11 mo (about 100 children per age year) and a sample of 617 children and youth with disabilities, ages 0 to 20 yr, 11 mo. OUTCOMES AND MEASURES: The dependent variable was the Responsibility domain scaled score (from the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test), which reflects the extent to which responsibility for daily tasks has shifted from parent to youth. RESULTS: Youth with higher levels of responsibility were older in age, reported to be more focused, and youngest in birth order (TD, R 2 = .79; disability, R 2 = .35). Youth with developmental delay, intellectual disability, autism spectrum disorder, or orthopedic or movement impairments had assumed less responsibility. CONCLUSIONS AND RELEVANCE: Other personal characteristics in addition to disability may have important influences on parents' decision making as they prepare their children to manage daily life tasks. WHAT THIS ARTICLE ADDS: Clinicians who work with adolescents in the process of transition to adulthood need to consider the potential influence of the personal characteristics, such as birth order and child temperament, on preparation for adulthood.

Functioning of young patients with cerebral palsy: Rasch analysis of the pediatric evaluation of disability inventory computer adaptive test daily activity and mobility.

BACKGROUND: People with cerebral palsy experience limitations in performing activities of daily living. Rehabilitation practitioners seek valid instruments to measure changes in the performance of those activities. The Pediatric Evaluation of Disability Inventory Computer Adaptive Test (PEDI-CAT) is a new tool to assess functioning in children and youth with various health conditions. Its validity needs to be evaluated in a way that is consistent with the theoretical model on which it was based. We aimed to evaluate the fit of daily activity and mobility items and children with CP to the Rasch model and to compare the performance in daily activities and mobility of older children, adolescents, and young adults with CP based on manual function and gross motor function limitations. METHODS: Eighty-three parents of children and youth of 8-20 years old (mean age: 11.6) with different severity levels of cerebral palsy participated in this study. Ninety-one items of the PEDI-CAT Daily Activities and Mobility domains were analyzed through Rasch analysis to evaluate relative item difficulty and participant ability. Participants were described according to the Manual Ability (MACS) (level I: 21.7%; II: 32.5%; III: 24.1%; IV: 7.2% and V: 3.6%) and the Gross Motor Function (GMFCS) (level I: 37.3%; II: 26.5%; III: 6%; IV: 18.1%; and V: 7.2%) classification systems levels. RESULTS: Our data fit the Rasch Model. Parents had difficulty distinguishing some PEDI-CAT response categories. Participants from MACS and GMFCS levels IV and V showed lower ability to perform relatively more difficult items. There was a floor effect in both domains. Only 7.7% of the items presented differential item functioning when individuals with mild MACS and GMFCS levels (I, II) and moderate level (III) and individuals with moderate (III) and severe levels (IV, V) were compared. CONCLUSIONS: PEDI-CAT daily activities and mobility domains are valid to evaluate children, adolescents and youth with CP of different severities, but the addition of items to these domains is recommended in order to address their floor effect.

Residue Ratings on FEES: Trends for Clinical Application of Residue Measurement.

Considering that measurement is a critical part of diagnostic technique for evaluating swallowing dysfunction, there is a need for a better foundational understanding of what influences residue measurement on flexible endoscopic evaluation of swallowing (FEES). This study investigated two factors and their potential influence on trends in residue ratings on FEES: (1) bolus consistency, and (2) residue severity levels on two different types of rating scales. Thirty-three clinicians were asked to rate their overall impressions of pharyngeal residue on 75 FEES videos representing a wide range of residue severities for thin liquid, applesauce, and cracker boluses. Ratings were made on both a visual analog scale (VAS) and a five-point ordinal scale in a randomized fashion across two sessions about two weeks apart. Statistical correlations were determined to assess the association between residue ratings and severity levels and bolus consistency. A total of 2475 VAS ratings and 2473 ordinal ratings were collected. Residue ratings were statistically different depending on severity level (p < 0.0001) and bolus consistency (p < 0.004). Raters appeared to avoid rating at the severe end of the scales, especially on visual analog scales. This study documented the relationship between clinician ratings of pharyngeal residue on FEES and various factors like severity and bolus type. Other findings, such as differences in ratings depending on the type of rating scale and halo effects on the VAS, are valuable for future scale development for understanding perceptual ratings of residue on FEES.