Characterizing Occupational Therapy Intervention for Children on the Autism Spectrum.

IMPORTANCE: Occupational therapy is one of the most used interventions for children on the autism spectrum. There is a critical need to develop an operationalized list of key treatment components of usual-care occupational therapy practice for children on the autism spectrum. OBJECTIVE: To identify and develop consensus on definitions and examples of key treatment components of usual-care occupational therapy for children on the autism spectrum, ages 6 to 13 yr. DESIGN: We conducted a Delphi study to obtain feedback from a panel of experts. SETTING: Electronic survey. PARTICIPANTS: 17 occupational therapy panelists with expertise in autism intervention. OUTCOMES AND MEASURES: Panelists rated the definition and example of each treatment component and provided feedback through multiple rounds of survey. RESULTS: On the basis of the panelists' feedback on Delphi Round 1, the criteria rating form was revised to include four questions for the definition and example of each treatment component. Through four Delphi rounds of consensus building, we developed an operationalized list of 20 treatment components with definitions and examples that incorporated elements of usual-care occupational therapy intervention for children on the autism spectrum. CONCLUSIONS AND RELEVANCE: This operationalized list of treatment components serves as a foundational framework to improve education, practice, and research of occupational therapy intervention for children on the autism spectrum. Plain-Language Summary: This study identified and developed consensus on definitions and examples of key treatment components used in usual-care outpatient occupational therapy for children on the autism spectrum. Through four rounds of consensus building with 17 occupational therapy experts in autism, we identified 20 key treatment components central to occupational therapy practice. Our results have the potential to serve as a framework to improve education, practice, and clinical research in autism.

Healthcare providers' role in providing sexual and reproductive health information to people with intellectual and developmental disabilities: A qualitative study.

BACKGROUND: Individuals with intellectual and developmental disabilities demonstrate disparities in sexual and reproductive health (SRH) compared to individuals without disabilities (e.g., lack of sexual education and knowledge, increased rates of abuse, unplanned pregnancies and sexually transmitted infections). Therefore, the purpose of this study was to identify topics healthcare providers address and perceived barriers and supports to SRH education. METHODS: We conducted semi-structured interviews with healthcare providers (N = 12). RESULTS: Providers address relationships, safety, protection and appropriate sexual behaviours with clients with intellectual and developmental disabilities. Parent education and client-centred care were identified as supports, while the patient's level of understanding, the provider's lack of knowledge or access to resources and to appropriate referrals were identified as barriers to SRH education. CONCLUSION: Future studies are needed to link providers to resources they can use to provide comprehensive, accessible SRH education for clients with intellectual and developmental disabilities.

Effects of a Specialized Primary Care Facility on Preventive Service Use Among Autistic Adults: a Retrospective Claims Study.

BACKGROUND: While in some studies, the patient-centered medical home has been linked with increased receipt of preventive services among other populations, there is a paucity of literature testing the effectiveness of medical homes in serving the healthcare needs of autistic adults. OBJECTIVE: To compare the receipt of preventive services by patients at a patient-centered medical home specifically designed for autistic adults (called the Center for Autism Services and Transition "CAST") to US national samples of autistic adults with private insurance or Medicare. DESIGN: Retrospective study of medical billing data. SAMPLE: The study sample included CAST patients (N = 490) who were propensity score matched to Medicare-enrolled autistic adults (N = 980) and privately insured autistic adults (N = 980) using demographic characteristics. The median age of subjects was 21 years old, 79% were male, and the median duration of observation was 2.2 years. MAIN MEASURES: The primary outcome measure was the receipt of any preventive service, as defined by the Medicare Learning Network and AAPC (formerly the American Academy of Professional Coders). Secondary outcome measures included receipt of specific preventive service types (i.e., general health and wellness services, screenings, counseling and therapies, vaccinations, and sexual/reproductive health services). KEY RESULTS: CAST patients had significantly greater odds of receiving any preventive service than Medicare-enrolled (OR = 10.3; 95% CI = 7.6-13.9) and privately insured (OR = 3.1; 95% CI = 2.3-4.2) autistic adults. CAST patients were also significantly more likely to receive screenings and vaccinations than either Medicare beneficiaries (screenings OR = 20.3; 95% CI = 14.7-28.0; vaccinations OR = 5.5; 95% CI = 4.3-7.0) or privately insured beneficiaries (screenings OR = 2.0; 95% CI = 1.6-2.5; vaccinations OR = 3.3; 95% CI = 2.6-4.1). CONCLUSIONS: Autistic adults receiving care through CAST were significantly more likely to recieve preventive care services than national samples of autistic adults. Future comparative effectiveness trials are needed to rigorously assess the impact of primary care-based initiatives to improve care for autistic adults.

Sex Education Practices for People With Intellectual and Developmental Disabilities: A Qualitative Study.

IMPORTANCE: People with intellectual and developmental disabilities (IDD) express a clear interest in intimate relationships but face many barriers to receiving sex education (SE) that would support their engagement in these relationships. OBJECTIVE: To understand barriers to, the context of, and recommendations for SE for people with IDD. DESIGN: Qualitative study design with interviews and focus groups with four key stakeholder groups. Data were analyzed using a constant comparative approach. PARTICIPANTS: Participants were 8 youths with IDD, 9 parents, 12 health care providers, and 8 educators. RESULTS: Four barriers to SE were identified: (1) values and cultural issues, (2) parental attitudes toward their child's sexuality, (3) a lack of organizational policies and standards, and (4) limited professional education or societal biases. These barriers contribute to a SE context primarily initiated by people with IDD or provided reactively. The participants recommended proactive, formal SE provided by multiple stakeholders throughout adulthood. CONCLUSIONS AND RELEVANCE: Stakeholders should advocate for policies, standards, and additional training for parents, educators, and health care providers to support SE for people with IDD throughout adulthood. What This Article Adds: Barriers to SE contribute to the current context in which SE is shared with people with IDD. Stakeholders can advocate for policies, standards, and training to overcome these barriers and support recommendations for proactive, formal SE provided by multiple stakeholders through adulthood.

Thoroughness and Psychometrics of Fidelity Measures in Occupational and Physical Therapy: A Systematic Review.

OBJECTIVE: This study evaluated the thoroughness and psychometric properties of fidelity measures used by or of relevance to occupational or physical therapy. METHOD: A systematic review of the literature was completed. Assessments used to measure occupational or physical therapy intervention fidelity were evaluated for thoroughness, reliability, validity, and clinical utility. RESULTS: Eight fidelity measures met inclusion criteria for this systematic review. Most of the measures had moderate levels of thoroughness in the coverage of key aspects of fidelity, reported adequate to excellent reliability and validity, and were highly variable in clinical utility. CONCLUSION: Additional research is recommended to validate existing occupational or physical therapy fidelity measures and to develop novel measures for other occupational therapy and physical therapy interventions. Clinicians and researchers must place greater emphasis on the development and implementation of fidelity measures to ensure uniformity in intervention delivery and high-quality, evidence-based care.

Systematic Review of Yoga Interventions for Anxiety Reduction Among Children and Adolescents.

OBJECTIVE: Anxiety disorders are the most prevalent psychological disorders among children and youths. There is growing interest in intervention options for anxiety. Yoga is widely used in clinical, school, and community settings, but consolidated sources outlining its effectiveness in reducing anxiety are limited. METHOD: This systematic review examined the evidence base (1990-2014) for yoga interventions addressing anxiety among children and adolescents (ages 3-18 yr). RESULTS: We identified 2,147 references and found 80 articles that were eligible for full-text review. The final analysis included 16: 6 randomized controlled trials, 2 nonrandomized preintervention-postintervention control-group designs, 7 uncontrolled preintervention-postintervention studies, and 1 case study. CONCLUSION: Nearly all studies indicated reduced anxiety after a yoga intervention. However, because of the wide variety of study populations, limitations in some study designs, and variable outcome measures, further research is needed to enhance the ability to generalize and apply yoga to reduce anxiety.

Behavioral and Physiological Factors Associated With Selective Eating in Children With Autism Spectrum Disorder.

Selective eating is common in children with autism spectrum disorder (ASD), but it is not yet well understood. The objectives of this study were to examine a new definition of selective eating, compare behavioral measures between children with ASD and selective eating and those without selective eating, and determine relationships among behavioral measures and measures of selective eating. Participants were assigned to groups on the basis of number of foods eaten compared with a population-based sample. Results of one-way multivariate analysis of variance indicated no overall effect of group for challenging behaviors, sensory reactivity, or repetitive behaviors. Between-participant tests indicated that scores for compulsive behaviors were significantly lower (p = .036) for the selective eating group. Correlations were moderately strong among variables relating to food intake and behavioral variables, but were not significant between selective eating and behavioral variables. Further research is needed to validate the definition of selective eating and to identify targets for intervention.

Measuring change in somatosensation across the lifespan.

OBJECTIVE: The study aim was to determine natural variability in somatosensation across age groups using brief measures. We validated measures in a community-dwelling population as part of the National Institutes of Health (NIH) Toolbox for Assessment of Neurological and Behavioral Function (NIH Toolbox; http://www.nihtoolbox.org). METHOD: Participants included community-dwelling children and adults (N=367, ages 3-85 yr) across seven sites. We tested haptic recognition, touch detection-discrimination, and proprioception using brief affordable measures as required by the NIH Toolbox. RESULTS: Accuracy improved from young children to young adults; from young to older adults, the pattern reversed slightly. We found significant differences between adults and older adults. One proprioception test (kinesthesia; p=.003) showed gender differences (females more accurate). We provide expected score ranges for age groups as a basis for understanding age-related expectations for somatosensory perception. CONCLUSION: The age-related patterns of somatosensory perception from this study refine decision making about performance.

Effects of a safe patient handling and mobility program on patient self-care outcomes.

OBJECTIVE. The aim of this study was to determine the effect of a safe patient handling and mobility (SPHM) program on patient self-care outcomes. METHOD. We used a retrospective cohort design. Data were obtained from the electronic medical records of 1,292 patients receiving inpatient rehabilitation services. Self-care scores from the FIM™ for patients who participated in rehabilitation before implementation of an SPHM program were compared with the scores of patients who participated after implementation of the program. RESULTS. Patients who received inpatient rehabilitation services with an SPHM program were as likely to achieve at least modified independence in self-care as those who received inpatient rehabilitation services without an SPHM program. CONCLUSION. SPHM programs may not affect self-care performance in adults receiving inpatient rehabilitation services. However, more work must be done to define specific and effective methods for integrating patient handling technologies into occupational therapy practice.

Occupational Therapy for Poststroke Anxiety and Depressive Symptoms in Inpatient Rehabilitation.

Poststroke anxiety and depressive symptoms (P-SADS) affect one in three people and are associated with decreased participation in activities of daily living. This study sought to characterize occupational therapy (OT) P-SADS care practices and identify factors influencing P-SADS care provision in one U.S. inpatient rehabilitation (IRF) facility. An explanatory sequential mixed-methods study design was used by gathering data from electronic health records (from January 1, 2019 to December 31, 2019) as well as semi-structured interviews with OT practitioners in the IRF. No objective P-SADS screens were documented nor were any P-SADS-focused goals written. Minimal evidence-based P-SADS interventions were identified. Practitioners reported multi-level barriers to OT P-SADS care including limited time, pressure to prioritize physical recovery, and inadequate resources to guide practice. OT practitioner P-SADS care was inconsistent with established evidence-based practice. This research identifies gaps in comprehensive stroke recovery and informs implementation efforts to support evidence-based P-SADS care in IRFs.

Effect of a safe patient handling program on rehabilitation outcomes.

OBJECTIVE: To evaluate the effect of a safe patient handling (SPH) program on rehabilitation mobility outcomes. DESIGN: Retrospective cohort study. SETTING: A rehabilitation unit in a hospital system. PARTICIPANTS: Consecutive patients (N=1291) over a 1-year period without an SPH program in place (n=507) and consecutive patients over a 1-year period with an SPH program in place (n=784). INTERVENTIONS: The SPH program consisted of administrative policies and patient handling technologies. The policies limited manual patient handling. Equipment included ceiling- and floor-based dependent lifts, sit-to-stand assists, ambulation aides, friction-reducing devices, motorized hospital beds and shower chairs, and multihandled gait belts. MAIN OUTCOME MEASURES: The mobility subscale of the FIM. RESULTS: Patients rehabilitated in the group with SPH achieved similar outcomes to patients rehabilitated in the group without SPH. A significant difference between groups was noted for patients with initial mobility FIM scores of 15.1 and higher after controlling for initial mobility FIM score, age, length of stay, and diagnosis. Those patients performed better with SPH. CONCLUSIONS: SPH programs do not appear to inhibit recovery. Fears among therapists that the use of equipment may lead to dependence may be unfounded.

Preliminary Support for the Use of Motivational Interviewing to Improve Parent/Adult Caregiver Behavior for Obesity and Cancer Prevention.

Motivational interviewing (MI) is a promising behavioral intervention for improving parent and adult caregiver (PAC) health behavior for obesity and cancer prevention. This study explored the preliminary effects of MI from a registered dietitian (RDMI) within an obesity prevention intervention to promote PAC behavior change and positive proxy effects on children and the home environment. N = 36 PAC/child dyads from low-resource communities were enrolled in a randomized trial testing a 10-week obesity prevention intervention. Intervention dyads were offered RDMI sessions. Data were collected at baseline and post-intervention (PAC diet quality (Healthy Eating Index (HEI)), child skin carotenoids, home environment, and PAC ambivalence regarding improving diet). Results show that for every RDMI dose, PAC HEI scores increased (0.571 points, p = 0.530), child skin carotenoid scores improved (1.315%, p = 0.592), and the home food environment improved (3.559%, p = 0.026). There was a significant positive relationship between RDMI dose and change in ambivalence (ρ = 0.533, p = 0.007). Higher baseline ambivalence was associated with greater dose (ρ = -0.287, p = 0.173). Thus, RDMI for PACs may improve diets among PACs who are otherwise ambivalent, with potential effects on the diets of their children and the home food environment. Such intervention strategies have the potential for greater effect, strengthening behavioral interventions targeting obesity and cancer.

Conducting Implementation Research in Stroke Rehabilitation: A Case Example and Considerations for Study Design.

As neurorehabilitation research continues to grow, the field must ensure its scientific discoveries are implemented into routine clinical care. Without targeted efforts to increase the implementation of evidence into practice, patients may never see the benefits of interventions, assessments, and technologies developed in the confines of empirical studies. This article serves as a response to Lynch et al's 2018 Point of View piece in Neurorehabilitation and Neural Repair that underscored the urgent need for implementation studies to expedite the application of neurorehabilitation evidence in practice. To address this need, we provide the following 4 considerations investigators should contemplate when designing their own studies at the intersection of implementation and neurorehabilitation research: (a) consideration of guiding theories, models, and frameworks, (b) consideration of implementation strategies, (c) considerations of target outcomes, and (d) consideration of hybrid effectiveness-implementation designs. To conclude, we also provide a study exemplar to depict how these considerations can be integrated into the neurorehabilitation research field to narrow the evidence-to-practice gap.

"I cried because I didn't know if I could take care of him": toward a taxonomy of interactive and critical health literacy as portrayed by caregivers of children with special health care needs.

Although the contributions of reading ability and numeracy skills in successful navigation of health-related systems are understood, the skills that comprise interactive and critical health literacy are not fully explicit. Using a phenomenological approach and the conceptual frame of health literacy as an asset, we conducted focus group interviews with 35 caregivers of children who had significant medical needs. Caregiver quotes were coded and categorized and then compared to the Revised Blooms Taxonomy. The purpose of the analysis was to better understand the interactive and critical health literacy skills caregivers use when coordinating their children's care. The findings support a dynamic constructivist perspective of health literacy such that caregiver skill changed relative to the children's health conditions. In addition, a taxonomic code of cognitive and communicative skills emerged from the data. This taxonomy may be useful in developing instrumentation to measure interactive and critical health literacy as well as in identifying a potential foci of interventions aimed at improving interactive and critical health literacy.

"They looked at me as a person, not just a diagnosis": A qualitative study of patient and parent satisfaction with a specialized primary care clinic for autistic adults.

BACKGROUND: Autistic adults have complex physical and mental healthcare needs that necessitate specialized approaches to healthcare. One promising approach is to embed providers with specialized training or specialty clinics for autistic adults within general primary care facilities. We previously found that autistic adults who received their healthcare through one specialty clinic designed with and for autistic adults had better continuity of care and more preventive service utilization than national samples of autistic adults. OBJECTIVE: To characterize factors that increased or decreased satisfaction with healthcare received through a specialty clinic for autistic adults. METHODS: We conducted 30-60-minute semi-structured interviews with autistic adults (N=9) and parents of autistic adults (N=12). We conducted an inductive thematic analysis, using a phenomenological approach. RESULTS: Factors that increased participants' satisfaction included: (1) receiving personalized care from the provider; (2) spending quality time with the provider; and (3) having strong, positive patient-provider relationships. Factors that decreased participants' satisfaction included: (1) lack of access to services due to scarcity of trained providers; (2) difficulty at times communicating with the provider; and (3) system-level barriers such as policies, practices, or procedures. CONCLUSION: Our findings highlight the importance of providers using personalized approaches to care that meet patients' sensory and communication needs and spending quality time with patients to establish strong, positive patient-provider relationships. Our findings also underscore the critical scarcity of healthcare providers who are trained to deliver care for the growing population of autistic adults.

Constraint-Induced Movement Therapy for Cerebral Palsy: A Randomized Trial.

OBJECTIVES: With the Children with Hemiparesis Arm and Hand Movement Project (CHAMP) multisite factorial randomized controlled trial, we compared 2 doses and 2 constraint types of constraint-induced movement therapy (CIMT) to usual customary treatment (UCT). METHODS: CHAMP randomly assigned 118 2- to 8-year-olds with hemiparetic cerebral palsy to one of 5 treatments with assessments at baseline, end of treatment, and 6 months posttreatment. Primary blinded outcomes were the assisting hand assessment; Peabody Motor Development Scales, Second Edition, Visual Motor Integration; and Quality of Upper Extremity Skills Test Dissociated Movement. Parents rated functioning on the Pediatric Evaluation of Disabilities Inventory-Computer Adaptive Test Daily Activities and Child Motor Activity Log How Often scale. Analyses were focused on blinded and parent-report outcomes and rank-order gains across all measures. RESULTS: Findings varied in statistical significance when analyzing individual blinded outcomes. parent reports, and rank-order gains. Consistently, high-dose CIMT, regardless of constraint type, produced a pattern of greatest short- and long-term gains (1.7% probability of occurring by chance alone) and significant gains on visual motor integration and dissociated movement at 6 months. O'Brien's rank-order analyses revealed high-dose CIMT produced significantly greater improvement than a moderate dose or UCT. All CIMT groups improved significantly more in parent-reported functioning, compared with that of UCT. Children with UCT also revealed objective gains (eg, 48% exceeded the smallest-detectable assisting hand assessment change, compared with 71% high-dose CIMT at the end of treatment). CONCLUSIONS: CHAMP provides novel albeit complex findings: although most individual blinded outcomes fell below statistical significance for group differences, high-dose CIMT consistently produced the largest improvements at both time points. An unexpected finding concerns shifts in UCT toward higher dosages, with improved outcomes compared with previous reports.

Specialized primary care medical home: A positive impact on continuity of care among autistic adults.

LAY ABSTRACT: There is a nationally recognized need for innovative healthcare delivery models to improve care continuity for autistic adults as they age out of pediatric and into adult healthcare systems. One possible model of care delivery is called the "medical home". The medical home is not a residential home, but a system where a patient's healthcare is coordinated through a primary care physician to ensure necessary care is received when and where the patient needs it. We compared the continuity of care among autistic adult patients at a specialized primary care medical home designed to remove barriers to care for autistic adults, called the CAST, to matched national samples of autistic adults with private insurance or Medicare. Continuity of primary care among CAST patients was significantly better than that of matched national samples of autistic adult Medicare beneficiaries and similar to that of privately insured autistic adults. Our findings suggest that medical homes, like CAST, are a promising solution to improve healthcare delivery for the growing population of autistic adults.

A qualitative study of coping in mothers of children with an autism spectrum disorder.

A significant body of research exists that explores the stressors of raising a child with an autism spectrum disorder (ASD). There are fewer studies, however, that examine specific effective coping strategies of mothers of children with an ASD. This qualitative study explored mothers' perceptions of effective coping strategies for their parenting stressors. In-depth interviews were conducted with 11 mothers to inquire about their personal coping methods. Interviews were coded and emergent themes identified that included coping strategies such as "me time," planning, knowledge is power, sharing the load, lifting the restraints of labels, and recognizing the joys. The information from this study may benefit mothers of children with ASD and inform pediatric therapists providing services to children with ASD and their families.

The use of safe patient handling and mobility equipment in rehabilitation.

BACKGROUND: Increasingly, occupational and physical therapists are using safe patient handling and mobility (SPHM) equipment, such as mechanical lifts, in rehabilitation. However, there is little guidance in the literature on how SPHM equipment can be used to assist patients to reach rehabilitation goals. The purpose of this projectwas to document and categorize common and innovative ways rehabilitation therapists use SPHM equipment in their clinical practice. OBJECTIVE: This article investigates common and innovative uses of SPHM equipment in rehabilitation practice. METHODS: Occupational, physical and kinesio therapist employed at the Veterans Health Administration wrote narratives and took photos describing rehabilitation therapy activities where they used SPHM equipment in their clinical practice. The authors used a systematic process to review and categorize the narratives and subsequent photos by using the World Health Organization's International Classification of Functioning, Disability and Health (ICF). RESULTS: Thirty narratives (13 innovative and 17 common) were coded into four categories on the ICF section of mobility. The most common category was "changing and maintaining basic body position"(21) followed by "walking and moving" (5). The category "carrying, moving and handling objects" garnered two narratives and there were no narratives for "using transportation." CONCLUSIONS: Project findings may serve as a guide for therapists who would like to enhance their use of SPHM equipment in rehabilitation. Additional research is needed to expand the use of SPHM in rehabilitation practice and evaluate the impact on patient rehabilitation outcomes and therapist safety outcomes.

Patient and caregiver experiences at a specialized primary care center for autistic adults.

Background: Little is known about the extent to which patient-centered medical homes meet the needs of autistic adults. Materials & methods: We conducted a cross-sectional survey of autistic adult patients (n = 47) and caregivers of autistic adult patients (n = 66) receiving care through one patient-centered medical home specifically designed to meet the needs of this population. We performed post hoc comparisons of our results to previously published data from a national sample of autistic adults. Results: Participants reported high levels of satisfaction with care, frequent preventive healthcare use and few unmet healthcare needs. Autistic adults in our sample reported significantly higher satisfaction and fewer unmet healthcare needs. Conclusion: A patient-centered medical home tailored to the needs of autistic adults is a promising approach to healthcare delivery for meeting this population's needs.