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.

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.

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.

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.

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.

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.

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.

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.

Reliability of Untrained and Experienced Raters on FEES: Rating Overall Residue is a Simple Task.

The purpose of this study was to investigate the reliability of residue ratings on Fiberoptic Endoscopic Evaluation of Swallowing (FEES). We also examined rating differences based on experience to determine if years of experience influenced residue ratings. A group of 44 raters watched 81 FEES videos representing a wide range of residue severities for thin liquid, applesauce, and cracker boluses. Raters were untrained on the rating scales and simply rated their overall impression of residue amount on a visual analog scale (VAS) and a five-point ordinal scale in a randomized fashion across two sessions. Intra-class correlation coefficients, kappa coefficients, and ANOVAs were used to analyze agreement and differences in ratings. Residue ratings on both the VAS and ordinal scales had acceptable inter- and intra-rater reliability. Inter-rater agreement was acceptable (ICC > 0.7) for all comparisons. Intra-rater agreement was excellent on the VAS scale (rc = 0.9) and good on the ordinal scale (k = 0.78). There was no significant difference between expert ratings and other raters based on years of experience for cracker ratings (p = 0.2119) and applesauce ratings (p = 0.2899), but there was a significant difference between clinicians on thin liquid ratings (p = 0.0005). Without any specific training, raters demonstrated high reliability when rating the overall amount of residue on FEES. Years of experience with FEES did not influence residue ratings, suggesting that expert ratings of overall residue amount are not unique or specialized. Rating the overall amount of residue on FEES appears to be a simple visual-perceptual task for puree and cracker boluses.

Validity, reliability, and usability of the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test for autism spectrum disorders.

AIM: This study aimed to explore the test-retest reliability of the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test for autism spectrum disorders (PEDI-CAT [ASD]), the concurrent validity of this test with the Vineland Adaptive Behavior Scales (VABS-II), and parents' perceptions of usability. METHOD: A convenience sample of participants (n=39) was recruited nationally through disability organizations. Parents of young people aged 10 to 18 years (mean age 14y 10mo, SD 2y 8mo; 34 males, five females) who reported a diagnosis of autism were eligible to participate. Parents completed the VABS-II questionnaire once and the PEDI-CAT (ASD) twice (n=29) no more than 3 weeks apart (mean 12d) using computer-simulated administration. Parents also answered questions about the usability of these instruments. We examined score reliability using intraclass correlation coefficients (ICCs) and we explored the relationship between instruments using Spearman's rank correlation coefficients. Parent responses were grouped by common content; content categories were triangulated by an additional reviewer. RESULTS: Intraclass correlation coefficients indicate excellent reliability for all PEDI-CAT (ASD) domain scores (ICC ≥ 0.86). PEDI-CAT (ASD) and VABS-II domain scores correlated as expected or stronger than expected (0.57-0.81). Parents reported that the computer-based PEDI-CAT (ASD) was easy to use and included fewer irrelevant questions than the VABS-II instrument. INTERPRETATION: These findings suggest that the PEDI-CAT (ASD) is a reliable assessment that parents can easily use. The PEDI-CAT (ASD) operationalizes the International Classification of Function, Disability and Health for Children and Youth constructs of 'activity' and 'participation', and this preliminary research suggests that the instrument's constructs are related to those of VABS-II.

Differential item functioning in the Patient Reported Outcomes Measurement Information System Pediatric Short Forms in a sample of children and adolescents with cerebral palsy.

AIM: The present study examined the Patient Reported Outcomes Measurement Information System (PROMIS) Mobility, Fatigue, and Pain Interference Short Forms (SFs) in children and adolescents with cerebral palsy (CP) for the presence of differential item functioning (DIF) relative to the original calibration sample. METHOD: Using the Graded Response Model we compared item parameter estimates generated from a sample of 303 children and adolescents with CP (175 males, 128 females; mean age 15y 5mo) to parameter estimates from the PROMIS calibration sample, which served as the reference group. DIF was assessed in a two-step process using the item response theory-likelihood ratio-differential item functioning detection procedure. RESULTS: Significant DIF was identified for four of eight items in the PROMIS Mobility SF, for two of eight items in the Pain Interference Scale, and for one item out of 10 on the Fatigue Scale. Impact of DIF on total score estimation was notable for Mobility and Pain Interference, but not for Fatigue. INTERPRETATION: Results suggest differences in the responses of adolescents with CP to some items on the PROMIS Mobility and Pain Interference SFs. Cognitive interviews about the PROMIS items with adolescents with varying degrees of mobility limitations would provide better understanding of how they are interpreting and selecting responses to the PROMIS items and thus help guide selection of the most appropriate way to address this issue.

Association between impairment, function, and daily life task management in children and adolescents with autism.

AIM: This cross-sectional study examined whether impairments or functional skills are associated with the level of responsibility for life tasks for children and adolescents with autism spectrum disorders (ASDs). METHOD: Parents of 263 children and adolescents with ASDs (215 males; 48 females; mean age 12y 6mo [SD 4y 6mo], range 3-21y) completed an online survey that included the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test - Autism Spectrum Disorders (PEDI-CAT-ASD) Daily Activities, Social/Cognitive, and Responsibility domains, a demographic questionnaire, and the Social Communication Questionnaire (SCQ) Current. The International Classification of Functioning, Disability and Health Framework guided the selection of model variables. We used hierarchical multiple regression to examine the relationship between impairment and functional skill predictor variables and the outcome variable, Responsibility. Age was entered in step 1 to control for the impact of development. SCQ Current, IQ, and remaining PEDI-CAT-ASD domains were then entered in step 2. RESULTS: After controlling for age, the model showed that step 2 predictor variables representing both impairments and functional skill improved the model (p<0.001). All variables except the SCQ score were significant predictors of Responsibility. The variance explained by the Daily Activities (2.7%) and Social/Cognitive (4.8%) domain scores was greater than IQ (0.3%). INTERPRETATION: The functional skills of Daily Activities and Social/Cognitive domains were more strongly associated with the management of life tasks than impairments after controlling for age.

Examining differential responses of youth with and without autism on a measure of everyday activity performance.

PURPOSE: This study further investigated items with differential item function (DIF) in the Social/Cognitive domain of a measure of everyday activity performance, the Pediatric Evaluation of Disability Inventory-Computer Adapted Test version for Autism "PEDI-CAT (ASD)," to understand possible sources of response variation in a heterogeneous sample of youth with autism compared to the national standardization sample. METHODS: Cross-sectional design. A convenience sample of parents who identified they had a child between 3 and 21 years (M = 11.9 years, SD = 4.67 years) with autism (n = 365) completed an online survey that included the PEDI-CAT (ASD) and descriptive measures. For 28 items previously identified as having DIF, the PEDI-CAT (ASD) expected item score curves for the autism sample were compared to the original PEDI-CAT standardization sample. The weighted area between expected score curves (wABC) was also calculated; values >0.24 indicate significant DIF. RESULTS: All items had wABC that exceeded the criterion. Compared with peers without disabilities at the same ability level, 11 items were significantly more difficult for the youth with autism and 16 items were significantly easier. One item demonstrated non-uniform DIF. CONCLUSION: Differential responses could indicate that: (1) children with autism have a different developmental pattern of skill acquisition for everyday activities in the Social/Cognitive domain, or (2) parents of children with autism utilize a unique appraisal process when assessing their children's functional performance of everyday activities. Further research is required to better understand the factors leading to differential responses on the targeted items. The study illustrates the value of in-depth analysis of DIF to gain insight into the impact of a clinical condition on functional performance.

Predictive Factors of Household Task Participation in Brazilian Children and Adolescents.

Home environment is an important setting for child participation. This study investigated the participation of Brazilian children and adolescents in household self-care (SC) and family-care (FC) tasks. Interviews were conducted with 109 caregivers of children and adolescents ages 6 to 14 years residing in Belo Horizonte (Brazil). Multiple regression models revealed that a greater number of FC tasks were performed by children and adolescents (R2 = .23) from families who did not have a housekeeper and those in which the mothers did not work outside of the home; children and adolescents from this subgroup also received less assistance from the caregivers (R2 = .21) and showed greater independence in task performance (R2 = .20). On average, Brazilian children and adolescents participate in about half of the SC and 25% the FC household tasks. Factors related to family structure and child's age were associated with task performance, caregiver assistance, and child and adolescent independence in household tasks.

Conceptualizing the construct of participation in adults with disabilities.

Participation is a key indicator of health and well-being and a critical rehabilitation goal for individuals with disabilities. Despite the numerous participation measures that have been developed, there is still an absence of agreement on the definition, domains, and dimensions of this construct. The result is that instruments intending to measure the same construct may actually measure quite different aspects of daily life and therefore yield significantly different findings. A solid conceptual model is needed to provide consistent guidance for measurement selection and development. In this article we identify the relevant content areas of participation and propose a conceptual model for adults that is intended to apply across diagnoses, conditions, and settings. We classified participation into 3 main domains: work and education, household, and community. Subdomains are defined within each. The model was reviewed using a semistructured survey by 8 rehabilitation measurement experts. Their feedback regarding the relevance, clarity, and comprehensiveness of the model led to the creation of an alternative structure in which the 3 main domains were recategorized as productivity, social, and community. The proposed conceptual model provides a clear framework for practitioners and researchers to understand the concept of participation and to guide selection or development of measures.

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.

Community participation measures for people with disabilities: a systematic review of content from an international classification of functioning, disability and health perspective.

OBJECTIVE: To identify instruments that measure community participation in people with disabilities and to evaluate which domains, to what extent, and how precisely they address this construct. The review aims to provide information to guide the selection of community participation instruments and to identify limitations of existing measures. DATA SOURCES: A systematic search was performed in PubMed, CINAHL, and PsychINFO in February and March 2012. The latest systematic reviews and references of searched articles were also reviewed to check for measures that were not identified in the initial search. STUDY SELECTION: Instruments were included if they (1) were a self-report questionnaire; (2) measured community participation, participation, or community integration; (3) measured actual participation (rather than subjective experience); (4) had available information on the instrument content and measurement properties; (5) were designed for adults; and (6) were applicable for all disabled populations. DATA EXTRACTION: Instruments were obtained from identified full-text articles, reference lists, or websites. Two researchers independently reviewed each selected instrument to determine which of their items measure community participation. These items were then classified using 9 community participation domains from the International Classification of Functioning, Disability and Health to reflect each instrument's domain coverage. DATA SYNTHESIS: Seventeen instruments were identified as containing community participation items, 2 of which were 100% composed of community participation items. The rest of the instruments included 8.7% to 73.1% items measuring community participation. The domain coverage varied from 3 to 8 domains across the instruments. CONCLUSIONS: None of the 17 instruments covered the full breadth of community participation domains, but each addressed community participation to some extent. New instruments that evaluate community participation more comprehensively will be needed in the future.

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.

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.

A new approach to the measurement of adaptive behavior: development of the PEDI-CAT for children and youth with autism spectrum disorders.

The use of current adaptive behavior measures in practice and research is limited by their length and need for a professional interviewer. There is a need for alternative measures that more efficiently assess adaptive behavior in children and youth with autism spectrum disorders (ASDs). The Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT) is a computer-based assessment of a child's ability to perform activities required for personal self-sufficiency and engagement in the community. This study evaluated the applicability, representativeness, and comprehensiveness of the Daily Activity, Social/Cognitive, and Responsibility domains for children and youth with an ASD. Twenty professionals and 18 parents provided feedback via in-person or virtual focus groups and cognitive interviews. Items were perceived to represent relevant functional activities within each domain. Child factors and assessment characteristics influenced parents' ratings. In response to feedback, 15 items and additional directions were added to ensure the PEDI-CAT is a meaningful measure when used with this population.