"Feeling Unwanted, When Nobody Wants You Around": Perceptions of Social Pain Among People With Autism.

IMPORTANCE: A paucity of studies have focused on pain experiences among people with autism spectrum disorder, particularly those addressing social pain in daily life contexts or learning from the perspective of autistic people. OBJECTIVE: To explore the social pain experience of autistic people. DESIGN: A descriptive qualitative design followed by deductive thematic analysis. Interviews were semistructured to capture the social pain experience, coping strategies, and implications for the participation of autistic people. SETTING: Online interviews using Zoom videoconferencing software. PARTICIPANTS: Fifteen autistic people were recruited for the study using purposeful and criterion sampling. RESULTS: Four primary themes emerged from the data analysis: (1) a definition of social pain and the distinction between social pain and other types of pain; (2) the sources-internal, external, and combined-of social pain; (3) the loneliness outcome, which echoes the gap between the desire for and lack of social contacts; and (4) coping strategies pertaining to the continuum between inward and outward coping strategies to deal with social pain. CONCLUSION AND RELEVANCE: The study indicates the existence of a discrepancy between autistic people's need for social interactions and the social pain they experience. It calls for intervention programs for autistic people to improve their coping strategies and promote their self-acceptance and better inclusion in the community. What This Article Adds: Promoting social functioning is a prime role of occupational therapists, and this article adds a novel theoretical model that contributes to that role. The model represents the social pain experiences of autistic people and their strategies to overcome this phenomenon. Firsthand accounts of autistic people regarding social pain enable a better understanding of their desire to be involved in the social context. This study suggests directions for further intervention programs to assist autistic people in fulfilling their wish for social relationships and enabling their enhanced integration into society. Positionality Statement: We recognize that use of person-first versus identity-first language is a source of debate and controversy. We have chosen to use identity-first language for two reasons. First, studies indicate person with autism is the term least preferred by autistic people (Botha et al., 2021). Second, autistic is the term used by the majority of our participants during interviews.

"When I'm in Pain, Everything Is Overwhelming": Implications of Pain in Adults With Autism on Their Daily Living and Participation.

Pain sensation in autism spectrum disorder (ASD) has been a growing research field in the last two decades. Existing pain research has focused on pain sensitivity, suggesting either hyposensitivity or hypersensitivity to pain in individuals with ASD. However, research about other aspects of pain experience is scarce. Moreover, most pain-related research in ASD focused on quantitative measures, such as neuroimaging or parental reports. Instead, this paper aimed to illuminate the various aspects of pain experience as perceived by adults with ASD. Its descriptive qualitative research design incorporated semi-structured interviews and deductive thematic analysis. This phenomenological approach captured the subjective pain experience through the lens of people with ASD. Four primary themes emerged from the data: (a) physical pain experience, including the sequence of pain sensitivity, pain awareness, pain-related emotional aspects, and pain communication; (b) direct and indirect coping strategies; (c) function and participation outcomes; and (d) suggestions for Healthcare Providers. The findings echo the crucial role of pain awareness and communication in the pain experience of people with ASD. These two factors have been reported as profoundly influencing coping strategies, function, and participation. The results emphasize the need to expand the exploration of pain in this population, calling for greater understanding, and listening to this population's unique pain profiles and experiences to promote better-suited evaluation, diagnosis, and intervention in pain conditions.

Participation in Daily Activities Among Women 5 Years After Breast Cancer.

IMPORTANCE: Understanding the long-term participation restrictions after breast cancer (BC) is crucial for developing occupation-based interventions. OBJECTIVE: To (1) compare women's participation during the BC subacute phase (2 yr postdiagnosis) with the chronic (5 yr postdiagnosis) phase, (2) explore factors associated with participation in the chronic phase, and (3) describe strategies women use to overcome participation restrictions. DESIGN: Descriptive longitudinal study. SETTING: A community health service in Israel. PARTICIPANTS: A convenience sample of 30 women (M age = 53.9 yr, SD = 8.3) diagnosed with BC (Stages 1-3). OUTCOMES AND MEASURES: Demographic and BC-related symptom questionnaires; an adapted version of the Activity Card Sort, used to assess retained activity levels (RALs) compared with prediagnosis activity levels in sociocultural, physical, and instrumental domains; the Canadian Occupational Performance Measure; and one open-ended qualitative question, "How were you able to retain your participation in daily activities despite the long-term effects of BC?" RESULTS: Significantly higher total RALs were found in most domains for women in the chronic (M = 0.93 RAL, SD = 0.27) compared with the subacute (M = 0.71, SD = 0.22) phase, t(29) = 4.72, p < .001. Almost half the women achieved clinically significant change in their meaningful activities. Lower levels of participation were significantly correlated with higher symptom severity. The qualitative findings indicated that coping strategies, such as positive thinking and changing priorities, helped in managing women's participation. CONCLUSIONS AND RELEVANCE: Participation restrictions and residual BC-related symptoms 5 yr postdiagnosis demonstrated the need for a comprehensive evaluation and early occupational therapy intervention to prevent long-term restrictions. What This Article Adds: This study highlights the value of a comprehensive assessment of daily participation (i.e., participation in various activity domains and in specific individual meaningful activities) of women with BC. The combination of quantitative and qualitative analysis provided a subjective perspective and deeper understanding of the associations among long-term symptoms, participation restrictions, and coping strategies.

Telerehabilitation for Managing Daily Participation among Breast Cancer Survivors during COVID-19: A Feasibility Study.

We aimed to examine the feasibility and impact of a short-term occupation-based telerehabilitation intervention (Managing Participation with Breast Cancer (MaP-BC)) on daily participation, health-related quality-of-life, and breast-cancer-related symptoms and understand women's perspectives regarding strategies to manage daily participation and symptoms during COVID-19 pandemic. A mixed-methods study (single-arm pre-post with a qualitative component) included 14 women after their primary medical treatment for breast cancer. Women received six weeks of occupation-based intervention using a video-communication. Sessions focused on identifying functional goals and training strategies to manage daily participation. The primary outcome was perceived performance and satisfaction with meaningful activities by the Canadian Occupational Performance Measure (COPM). Secondary outcomes were participation in the Activity Card Sort (ACS), upper-extremity functioning of Disability Arm Shoulder Hand, self-reported symptom severity, executive-functioning, health-related quality of life, and a question regarding strategies used to manage daily participation. Women significantly improved their daily participation in meaningful activities in the COPM, most ACS activity domains, self-reported executive functioning, and health-related-quality-of-life. Qualitative findings revealed three main themes: (1) daily life under the threats of breast cancer and COVID-19, (2) women's own strategies to overcome challenges, and (3) contribution of the MaP-BC. Providing telerehabilitation during the COVID-19 pandemic is feasible and successful in improving women's daily participation after breast cancer.

Camp "Sababa" (awesome) - The world of children with burns.

AIMS: Camp "Sababa" operates in Israel through the Burn Advocate Network of New Jersey, to help children with burn injuries cope with consequences of injury. The study assessed adolescents' perceptions of their participation in the camp, and its effect on their self-esteem and quality of life. METHODS: Ten adolescents from diverse cultural backgrounds attended Camp "Sababa" in 2017. All the participants and parents signed an informed consent form, responded to a demographics questionnaire, and participated in in-depth interviews and focus groups. Phenomenological analysis revealed three themes, reflecting the chronological sequence of rehabilitation: (1) coping with emotional and physical scars, (2) formulating coping strategies, (3) belonging to a group, and (4) implications of camp experience. RESULTS: Social participation engendered a feeling of safety and trust, enabling adolescents to share their burn experiences, and thus cope better with the physical and emotional challenges of their injuries. Participation in camp activities strengthened their confidence and social bonding; and their return to typical adolescent behaviour while at camp, and ultimately in the community. CONCLUSIONS: The positive results suggest that burn camps should be part of the rehabilitation process of adolescents with burn injury, with emphasis on challenging, age-appropriate activities, and peer group participation.

Hybrid Tele and In-Clinic Occupation Based Intervention to Improve Women's Daily Participation after Breast Cancer: A Pilot Randomized Controlled Trial.

BACKGROUND: Women after breast cancer (BC) cope with decreased daily participation and quality of life (QOL) due to physical, cognitive, and emotional symptoms. This study examined a hybrid occupation-based intervention, Managing Participation with Breast Cancer (MaP-BC), to improve daily participation in their meaningful activities. METHODS: Thirty-five women after BC phase were randomly allocated to the MaP-BC intervention (n = 18) or control (n = 17) group (standard care only). Assessments were administered at baseline (T1), 6-week (T2), and 12-week (T3) post-T1. MAIN OUTCOME: perceived performance and performance-satisfaction with meaningful activities according to the Canadian Occupational Performance Measure. SECONDARY OUTCOMES: retained activity levels (Activity Card Sort), QOL (Functional Assessment of Cancer Therapy-Breast), cognitive abilities (Montreal Cognitive Assessment and Behavior Rating Inventory of Executive Function), and upper-extremity functioning (Disability of Arm, Shoulder, Hand). Results showed significant interaction (group x time) effects for the primary outcome in performance, F(2,66) = 29.54, p = 0.001, ɳP2 = 0.472, and satisfaction, F(2,66) = 37.15, p = 0.000, ɳP2 = 0.530. The intervention group improved more in performance, t = 5.51, p = 0.0001, d = 1.298, and satisfaction, t = -5.32, p = 0.0001, d = 1.254, than the control group between T1 and T2. Secondary outcomes demonstrated within-group improvements. CONCLUSION: MaP-BC, a comprehensive occupation-based hybrid intervention tailored to women's functional daily needs after BC, improved participation in meaningful activities within a short period.

"It's like a ramp for a person in a wheelchair": Workplace accessibility for employees with autism.

BACKGROUND, AIMS AND METHODS: Participation in employment by individuals with autism spectrum disorders (ASD) remains restricted despite their high motivation and evident abilities. Challenges to employment result from personal characteristics and environmental barriers. This phenomenological research explores the accessibility of a competitive work environment according to the perceptions of adults with ASD. PROCEDURES AND OUTCOMES: We conducted in-depth interviews with 19 employees with ASD, followed by a thematic content analysis. Three themes emerged: (a) the employees' motivation for employment, (b) challenges and abilities at work, and (c) workplace accessibility (types of accommodations, implementation process). RESULTS AND CONCLUSIONS: The findings contribute a classification of accommodations that addresses the core characteristics of autism-challenges as well as abilities and motivations for employment. Four types of accommodations were identified: job-performance communication, attitudes and interpersonal communication, daily workplace routines, and physical and sensory environments. Hence, this study supports the centrality of environmental factors in successful employment of individuals with ASD. IMPLICATIONS: This study presents an evidence-based foundation for autism-related workplace accessibility. It offers an approach to enhance employees' abilities, strengths, and motivation for employment, as well as to decrease barriers and challenges. The findings may expand organizational policies regarding accessibility and thereby anchor workplace accommodations within organizations' corporate cultures.

Transition to Employment Program (SUPER) for Youth at Risk: A Conceptual and Practical Model.

This article describes the development, implementation, and evaluation of the transdisciplinary "Successful Pathways to Employment for youth at Risk" (SUPER) program to raise the transition readiness of youth at risk (YAR) from school into participation in adults' responsibilities and employment. More than 10% of adolescents are at risk of dropping out of school following poor academic attainments. Schools appraise academic merit but do not develop relevant educational programs to prepare youth to transition into adult working life. The SUPER program addresses a range of knowledge and skills required for this transition. Sixty YAR from three high schools participated in the 18-week SUPER program. Comparing the pre- and postintervention results revealed that the students' engagement with responsibilities, objective knowledge about the work world, and self-rated self-advocacy skills improved as did their supervisor-rated work performance capacity. This study confirms the contribution of the SUPER model. Its concepts, tools, principles, and community labor-market involvement through workplace internships were effective and could apply in other contexts. The SUPER model provides evidence-based knowledge translation that can bring conceptual and practical changes towards successful transition and participation of YAR in adult working roles.

Toilet training of preschoolers with disabilities: The perspectives of teacher aides.

AIMS: To examine toilet-training (TT) challenges among children with developmental disabilities (DD), as perceived by teacher aides working in special education preschools, the TT practices they adopt, and their perspectives on TT and parental cooperation. METHODS: A qualitative phenomenological approach was adopted to analyze in-depth interviews conducted with 10 teacher aides, working in special education preschools. Interviews were audio-recorded, transcribed, and analyzed by three researchers according to 20 categories, organized into the themes that emerged from the data. RESULTS: Three themes emerged from the data analysis: (1) The TT process is much more complex for children with DD than for typically developing children. (2) The central role played by teacher aides in the TT process and the TT approaches they adopt. (3) The degree to which the child's family is involved in and cooperates with the preschool staff in the context of TT. CONCLUSIONS: TT among children with DD requires a graded and child-specific mediation process, including the parents and the educational staff. Teacher aides are revealed as an excellent resource for information about the child under their care. From the rich interviews, we obtained: principles and practical guidance as to how to provide gradual tailor-made TT for children with DD; principles to enhance parents' engagement in TT; and appropriate TT outcomes. The ecological theoretical frameworks used to shed light on the teacher aides' and the context role as significant mediators in TT. The study lays the groundwork for further research on TT among children with DD.

Efficacy of Compression Gloves in the Rehabilitation of Distal Radius Fractures: Randomized Controlled Study.

OBJECTIVE: The aim of this study was to examine the outcomes of wearing made-to-measure compression gloves after distal radius fracture. DESIGN: In a randomized controlled trial, adults who were about 6 wks post distal radius fracture were recruited and divided into a comparison control group (n = 15), who received standard rehabilitation twice a week for half an hour, and an intervention group (n = 17), who additionally used compression gloves. All treatments were conducted at a single rehabilitation clinic. Outcomes assessed were wrist and finger range of motion, grip strength, swelling, pain, and activities of daily living (using the Patient Rating Wrist Evaluation). The intervention group underwent additional objective dynamic assessments of range of motion with and without the gloves. RESULTS: The intervention group demonstrated reduced swelling, pain, and analgesic use; increased wrist range of motion; better scores for specific hand functions; and greater participation in activities of daily living compared with the comparison group. CONCLUSION: This randomized controlled trial shows that using compression gloves during the rehabilitation phase after distal radius fracture improves daily functioning and reduces adverse symptoms. These improvements, which are important in their own right, are also expected to aid in preventing the development of chronic conditions and disability. EVIDENCE LEVEL II: Un-blinded prospective comparative study.

Usability of clinical decision support system as a facilitator for learning the assistive technology adaptation process.

The aim of this study was to evaluate the usability of Ontology Supported Computerized Assistive Technology Recommender (OSCAR), a Clinical Decision Support System (CDSS) for the assistive technology adaptation process, its impact on learning the matching process, and to determine the relationship between its usability and learnability. Two groups of expert and novice clinicians (total, n = 26) took part in this study. Each group filled out system usability scale (SUS) to evaluate OSCAR's usability. The novice group completed a learning questionnaire to assess OSCAR's effect on their ability to learn the matching process. Both groups rated OSCAR's usability as "very good", (M [SUS] = 80.7, SD = 11.6, median = 83.7) by the novices, and (M [SUS] = 81.2, SD = 6.8, median = 81.2) by the experts. The Mann-Whitney results indicated that no significant differences were found between the expert and novice groups in terms of OSCAR's usability. A significant positive correlation existed between the usability of OSCAR and the ability to learn the adaptation process (rs = 0.46, p = 0.04). Usability is an important factor in the acceptance of a system. The successful application of user-centered design principles during the development of OSCAR may serve as a case study that models the significant elements to be considered, theoretically and practically in developing other systems. Implications for Rehabilitation Creating a CDSS with a focus on its usability is an important factor for its acceptance by its users. Successful usability outcomes can impact the learning process of the subject matter in general, and the AT prescription process in particular. The successful application of User-Centered Design principles during the development of OSCAR may serve as a case study that models the significant elements to be considered, theoretically and practically. The study emphasizes the importance of close collaboration between the developers and the end users.

Building an effective ontology for assistive technology.

The aim of this paper was to develop and validate an ontology for one class of assistive technology (AT), namely physically controllable pointing devices, using the Delphi method. Six occupational therapists with AT expertise identified important items and categories to the pointing device prescription through a three-round, structured process consisting of responses to a series of questionnaires. The intraclass correlation coefficient (ICC) was used to assess the interrater reliability of items included in categories related to the pointing devices and to the user profile. During the first round, the ICC ranged from 0.19 to 0.97; this improved to ICCs ranging from 0.72 to 1.0 during the second round. A full consensus was reached by the experts during the final round which included 218 items, divided into five categories, for the pointing device list, and 168 items, divided into six categories, for the user profile list. This ontology is expected to help achieve a more systematic regulation of the AT field, leading to greater standardization and increased knowledge sharing.

Effectiveness of a Clinical Decision Support System for Pointing Device Prescription.

OBJECTIVE: We present a novel, knowledge-driven approach to prescription of pointing devices that uses the Ontology-Supported Computerized Assistive Technology Recommender (OSCAR), a clinical decision support system (CDSS). METHOD: Fifty-five occupational therapists were divided into four groups: two assistive technology (AT) expert groups and two novice groups. Novice Group 1 used the OSCAR CDSS for the prescription process, and Novice Group 2 used the conventional method. OSCAR's effectiveness and its impact on users were evaluated. RESULTS: The ability of Novice Group 1 to make suitable pointing device prescriptions was similar to that of the two expert groups and was significantly better than that of Novice Group 2. The system positively affected Novice Group 1's learning of the prescription process. CONCLUSION: The structure and organized framework for clinical reasoning of the OSCAR CDSS appear to enable occupational therapy practitioners inexperienced in AT to achieve performance levels comparable to those of experts.

Accessibility to information and communications technology for the social participation of youths with disabilities: a two-way street.

The current study examined by mixed method the effectiveness of an accessibility to Information and Communications Technology (ICT) program that provided computers, assistive technology, tutors, and internet connection to 65 youths with severe disabilities (aged 13.22 ± 3.4 years) in their homes. The quantitative evaluation included assessment of computer task performance, computer skills, and participation in social ICT leisure activities before and after the program. Findings revealed low baseline and significant progress on most outcome measures 6 months after the program, mostly among those youths who had tutors. Additional in-depth interviews were conducted 1 year later with 10 participants to explore their ICT use and its impact on their social participation. The analysis revealed a significant contribution of the ICT use, while critical thinking about its risks and some disappointment with the social needs that ICT does not address. Our findings raise awareness of 'two-way streets' policies and programs to ensure e-inclusion.

Building an ontology for assistive technology using the Delphi method.

The aim of this study was to use the Delphi method to develop and validate an ontology for one class of assistive technology (AT), namely physically controllable pointing devices. A three-round, structured process consisting of responses to a series of questionnaires was used to identify items and categories of importance to pointing device prescription from six occupational therapists with AT expertise. The intraclass correlation coefficient (ICC) was used to assess the interrater reliability of items included in categories related to the pointing devices and to the user profile by the six experts during each Delphi round. During the first round, the ICC ranged from 0.19 to 0.97; this improved to ICCs ranging from 0.72 to 1.0 during the second round. A full consensus was reached by the experts during the final round which included 218 items, divided into five categories, for the pointing device list, and 168 items, divided into six categories, for the user profile list. This ontology is expected to help achieve a more systematic regulation of the AT field, leading to greater standardization and increased knowledge sharing, which may help novice clinicians to achieve a level of competence in matching AT to a person with special needs.

Assessment of computer task performance (ACTP) of children and youth with intellectual and developmental disability.

The aims of this study were to assess the reliability and validity of the Arabic translation of the Assessment of Computer Task Performance (ACTP) when used for children with Intellectual and Developmental Disabilities (IDD) and to determine the relationship between participants' performance when using an adapted pointing device and the teacher's satisfaction of their performance. Thirty boys and girls, Arabic speakers, 6- 21 years old, who had moderate IDD, participated in the study. Two expert occupational therapists used the ACTP to evaluate the performance of five standardized timed computer tasks. The Quebec User Evaluation of Satisfaction with Assistive Technology was used to evaluate the teachers' satisfaction with the prescribed pointing device. The sample in the current study performed slower than typically developing children and youth, and slower than participants with motor impairments, examined in previous studies. Differences were found in performance time between girls and boys, and between three diagnostic subgroups. The participants' success scores of computer performance correlated significantly with the teacher's satisfaction with the prescribed pointing device. Demonstration of the validity and reliability of the Arabic version of the ACTP-Child enables wider use of this tool which is now available in four languages and diverse cultural settings and disability populations, including children and youth with significant IDD.

Work-related self-efficacy of occupational therapists in mental health.

AIM: Changes in the mental health field have created new job expectations of occupational therapists (OTs). The present research investigated differences in general self-efficacy (GSE) and work-related self-efficacy (WRSE) between occupational therapists (OTs) working in psychiatric hospitals and OTs working in community-based mental health services. METHOD: Thirty-four OTs working in psychiatric hospitals and 30 OTs working in community-based settings (n = 60) completed the General Self Efficacy Scale (GSE) and the WRSE in Mental Health Occupational Therapy Scale (WSMOT). RESULTS: The two groups showed no differences in total WRSE score. Both evinced high self-efficacy in direct intervention activities, and low self-efficacy in managing and counseling. CONCLUSION: Results enlighten an overall high WRSE, which indicates successful adaptation of OTs to changing roles and tasks in mental health, similar to studies in other countries. However, it reveals discrepancies between job demands and self-efficacy of OTs that should be addressed at educational and managerial levels.

Reliability and validity of the Children's Leisure Assessment Scale.

OBJECTIVE: We examined the internal consistency and construct validity of the Children's Leisure Assessment Scale (CLASS), which measures multidimensional participation in children's and adolescents' leisure activities. METHOD: The questionnaire's content and face validity were first established, followed by a factor analysis of the CLASS's frequency domain of the responses of 249 children and adolescents. Internal consistency was evaluated for each of the factors, and construct validity was established by examining gender differences. RESULTS: The factors showed acceptable levels of internal reliability (Cronbach's alpha ranged from .57 to .83). We found that girls participated in significantly more self-enrichment activities and instrumental indoor activities, with greater preference. However, boys participated in significantly more games and sports activities. CONCLUSION: The CLASS shows good internal reliability and may be useful in the future as a clinical and research tool in occupational therapy for evaluating leisure activities among typically developing children and adolescents.

Workplace accommodations: occupational therapists as mediators in the interactive process.

Employers are required under the Americans with Disabilities Act to provide qualified individuals with disabilities workplace accommodations if needed to enable their performance of essential job functions, maintain successful employment, and effectively contribute to the workforce and society. The Equal Employment Opportunity Commission and many federal courts recommend an "interactive process" between the employee and employer, to facilitate effective accommodations. Research demonstrates, however, that often the parties to the process are uncertain of their roles and responsibilities. Similarly, court decisions have not uniformly clarified the specific requirements of the interactive process or alternate best practices to achieve an effective outcome. This article asserts that an occupational therapist with special training in ergonomics may make a significant contribution to identifying and implementing effective workplace accommodations, by mediating the interactive process between employer and employee. This unique role is illuminated by examination of the occupational therapist's professional expertise implementing a successful accommodation (case study) contrasted with an unsuccessful accommodation process that required litigation to resolve. Furthermore, we discuss the role of legal mediation principles in the occupational therapist's practice, suggesting ways to improve accommodation outcomes and avoid litigation. Recommendations for future research and practice are presented.

Accommodation outcomes and the ICF framework.

Accommodation of the environment and technology is one of the key mediators of adjustment to disability and participation in community. In this article, accommodations are tested empirically as facilitators of return to work and participation, as defined by the International Classification of Disability, Function, and Health (ICF) and the Consortium for Assistive Technology Outcomes Research (CATOR). Both provide ideal models to examine this phenomenon with descriptive concepts and the relations between them. Nevertheless, there is a lack of predictive, empirically operational examinations of these models in order to serve the needs of assistive technology (AT) researchers and clinicians. The contribution of the current study is empirical examination of a framework to identify outcome measures for accommodation with AT. It confirms the major theoretical categories of outcomes: use, match to person/activity, effectiveness, participation, and well-being. Ninety adults with physical disabilities were evaluated in their natural workstations one year after adaptation of their computer workstation. Using the structural equation modeling (SEM) analysis method, findings confirmed the conceptual model, N=90, chi2(30) = 33.47, p > .05, and the various outcome measures chosen for this study. Future research and clinical applications of the proposed model and the SEM examination are discussed.