Pediatric Occupational Therapists' Perspectives on Sleep: A Qualitative Descriptive Study.

IMPORTANCE: Insufficient sleep is common among children seeking occupational therapy services but is rarely a focus of therapy despite sleep's critical impact on health. OBJECTIVE: To examine pediatric occupational therapists' experiences, views, and confidence in addressing sleep concerns in their practice as well as barriers to and supports for doing so. DESIGN: A qualitative descriptive study with thematic analysis of data from 1-hr virtual interviews. Rapport building, multiple-coder analysis, and member checking were used to ensure reliability and validity. SETTING: Interviews were conducted remotely at each participant's preferred time and location. PARTICIPANTS: Pediatric occupational therapists (N = 20) practicing across multiple settings in the United States were recruited through emails directed to their place of work and social media posts. A goal of 20 participants was set a priori with the goal of thematic saturation. OUTCOMES AND MEASURES: A semistructured interview guide. RESULTS: Participants were predominately cisgender (95%), female (85%), and White, non-Hispanic (90%). Overall, they voiced the importance of sleep but reported almost never writing sleep-related goals. Reported barriers that affected the participants' ability to fully address sleep in practice included therapists' lack of confidence and knowledge and low caregiver buy-in. CONCLUSIONS AND RELEVANCE: The findings identify themes on the basis of which actionable steps toward promoting occupational therapists as sleep champions can be developed. Future implications include increasing sleep education opportunities, enhancing awareness of sleep health's impact on goal areas, and facilitating discussions about occupational therapy's role within the medical system and family system in supporting sleep. Plain-Language Summary: This qualitative study identifies what helps and hinders occupational therapists in addressing the sleep health concerns of their clients. We give occupational therapy clinicians and educators key supports to seek out or barriers to address.

Interventions for Work/Employment Participation for Autistic Adults (2013-2020).

Systematic Review Briefs provide a summary of the findings from systematic reviews developed in conjunction with the American Occupational Therapy Association's Evidence-Based Practice Program. Each Systematic Review Brief summarizes the evidence on a theme related to a systematic review topic. This Systematic Review Brief presents findings on work/employment interventions and participation outcomes for autistic1 adults.

Interventions for Social Participation for Autistic Adults (2013-2020).

Systematic Review Briefs provide a summary of the findings from systematic reviews developed in conjunction with the American Occupational Therapy Association's Evidence-Based Practice Program. Each Systematic Review Brief summarizes the evidence on a theme related to a systematic review topic. This Systematic Review Brief presents findings on social participation interventions and participation outcomes for autistic1 adults.

Partnering for prevention in under-resourced communities: a randomized pilot study.

BACKGROUND: Promoting health early in life is crucial to obesity prevention, but families in under-resourced communities face barriers to establishing healthy routines. The purpose of this pilot study was to examine the feasibility and preliminary effects of two dietary interventions for families in under-resourced communities. METHODS: Fifty-one caregivers of young children (aged 0-5 years) were recruited from six community centers located in heavily populated neighborhoods with high poverty rates (i.e., under-resourced neighborhoods) in southwestern Pennsylvania. A longitudinal pilot study was conducted to examine feasibility as a primary outcome and change in dietary variety (24-Hour Recall), risk of nutritional problems (Nutrition Screen for Every Preschooler), and parenting stress (Parenting Stress Index-Short Form) over time and between groups as secondary outcomes. Six sites were randomized to receive Cooking Matters for Parents, Mealtime PREP, or a combined program (Cooking Matters + Mealtime PREP). Cooking Matters for Parents is a six-week nutrition education program designed to help parents of young children plan and cook healthy meals on a budget. Mealtime PREP is a six-week routine-based intervention designed to promote healthy dietary variety among young children. We predicted that we could feasibly deliver both programs and the combined program as determined by a priori benchmarks (ability to recruit ≥ 8 participants per site; achieving an 80% intervention completion rate; being rated as an acceptable intervention by 95% of intervention completers, and treatment fidelity of ≥ 90%). Descriptive statistics and individual growth models were used to analyze data. RESULTS: Of 51 recruited participants, 49 were eligible, randomized by site, and included in the analyses. Fourteen were randomized to Cooking Matters, 13 to Mealtime PREP, and 22 to the combined program. Three of 4 feasibility benchmarks were met. Over time, improvements were observed in child dietary variety (p < 0.01, SE = 0.99), child nutrition risk (p = 0.01, SE = 0.61), and parenting stress (p = 0.04, SE = 1.33). An additive benefit of the combined intervention was observed for dietary variety (p = 0.03, SE = 0.79). No adverse events were observed or reported. CONCLUSIONS: Offering complementary dietary interventions in under-resourced communities is feasible and shows promise to improve child and parent health. TRIAL REGISTRATION: ClinicalTrials.gov (NCT03559907).

Promoting Routines of Exploration and Play during Mealtime: Estimated Effects and Identified Barriers.

Promoting Routines of Exploration and Play during Mealtime (Mealtime PREP) is an intervention designed to support healthy dietary variety in children. To estimate the effects of this intervention, we recruited 20 parents and children (aged 1-5 years) with sensory food aversions to participate in a pilot study. Parents were coached to enhance daily child meals using Mealtime PREP. Our primary outcome was acceptance of targeted food (number of bites) over time. Descriptive statistics and effect sizes are reported. Moderate effects were observed for acceptance of targeted food. Mealtime PREP warrants additional research to examine effects in larger, more diverse samples.

Development of a proxy-reported scale to assess motor function in infants and young children with early-onset neuromuscular disorders.

AIM: To develop a novel proxy-reported scale of motor function in infants and young children with early-onset neuromuscular disorders (NMD), entitled the Proxy Motor Outcome Measure (PMOM). DESIGN: A mixed method design was employed, applying both qualitative and quantitative research. METHODS: A framework technique using sensitivity analyses guided the development of the most appropriate and relevant subset of items, modelled after 30 neuromuscular disease instruments/scales. The PMOM was designed based on semi-structured interviews with 16 proxies; a focus group of 11 experts in neuromuscular diseases and scale development, 10 of whom also gave quantitative data using a two-round Delphi method survey; and cognitive interviews with five proxies. These processes were conducted between January 2014-March 2019. RESULTS: Nine themes and 32 subthemes were derived from the semi-structured interviews. Five domains and three subdomains of potential items were identified by the focus group. An initial version of the PMOM scale was created with 121 items. Using the two-round Delphi method, 43 items met agreement on pre-defined requirements. The second version of the PMOM scale included these 43 and two additional items based on expert feedback. Proxies gave 114 suggestions on cognitive interviews, 99 of which were successfully addressed by the research team. The final version of the PMOM scale included 43 items. CONCLUSION: We developed a preliminary proxy-reported instrument, the PMOM, to evaluate motor function in infants and young children with early-onset NMD. IMPACT: Proxies hold a wealth of knowledge on their child's motor function during early development, which may complement clinic-based motor function testing. However, there is no validated measure of motor function that incorporates the observation of proxies of infants and young children with NMD. Future work will be focused on assessing the reliability, validity and responsiveness of the PMOM scale and implementing this tool in clinical studies.

Parent Training for Feeding Problems in Children With Autism Spectrum Disorder: Initial Randomized Trial.

Objective: Many children with autism spectrum disorder (ASD) have feeding and mealtime problems. To address these, we conducted a pilot randomized trial of a new 11-session, individually delivered parent training program that integrated behavioral strategies and nutritional guidance (PT-F). Methods: Forty-two young children (age: 2 to 7-11 years) with ASD and feeding problems were assigned to 11 sessions of PT-F intervention over 20 weeks or a waitlist control. Outcomes included attendance, parent satisfaction, therapist fidelity, and preliminary assessments of child and parent outcomes. Results: Of the 21 PT-F families, attendance was high (85%) as was parent satisfaction (94% would recommend to others). Treatment fidelity was also high (97%-therapist integrity; 94%-parent adherence). Compared with waitlist, children whose parents participated in PT-F showed significantly greater reductions on the two parent-completed primary outcomes (Brief Autism Mealtime Behavior Inventory-Revised; Twald = -2.79; p = .003; About Your Child's Eating; Twald = -3.58; p = .001). On the independent evaluator-completed secondary eating outcome, the Clinical Global Impression-Improvement, 48.8% of the participants in PT-F were rated as "responders" compared with 0% in waitlist (p = .006). General child disruptive behavior outcomes decreased more in PT-F but not significantly. Parent outcomes of caregiver stress showed nonsignificant trends favoring PT-F with moderate to small effect sizes. Conclusions: This trial provides evidence for feasibility, satisfaction, and fidelity of implementation of PT-F for feeding problems in young children with ASD. Feeding outcomes also appeared favorable and lends support for conducting a larger efficacy trial.

Patient-identified impact of symptoms in spinal and bulbar muscular atrophy.

INTRODUCTION: The effects of spinal bulbar muscular atrophy (SBMA) on quality of life (QoL) are not well understood. This study describes symptoms from the patient's perspective and the impact these symptoms have on QoL. METHODS: We conducted open-ended interviews with 21 adult men with genetically confirmed SBMA. Using a qualitative framework technique, we coded and analyzed interviews to identify symptoms and resulting themes. RESULTS: From these interviews, 729 quotations were extracted. We identified 200 SBMA-specific symptoms and 20 symptomatic themes. Weakness was mentioned by all interviewees. Symptoms within the domain of mental health and the specific themes of emotional issues and psychological impact were also frequently mentioned. DISCUSSION: Numerous symptoms affect QoL for patients with SBMA. We identified previously unrecognized symptoms that are important to address in enhancing clinical care for patients with SBMA and in developing tools to evaluate efficacy in future clinical trials. Muscle Nerve 57: 40-44, 2018.

Behavioral Activation Approach to Parent Training: Feasibility of Promoting Routines of Exploration and Play During Mealtime (Mealtime PREP).

OBJECTIVE: Systematic approaches are needed to help parents with young children adopt healthy routines. This study examined the feasibility (home data collection, protocol adherence, intervention acceptance) of using a behavioral activation (BA) approach to train parents of children with sensory food aversions. METHOD: Parents of young children (18-36 mo) were trained using the novel Promoting Routines of Exploration and Play During Mealtime intervention. Measures included video-recorded meals, Fidelity Checklist, Treatment Acceptability Questionnaire, and Behavioral Pediatrics Feeding Assessment Scale. Descriptive statistics were used. RESULTS: Eleven children and their parents completed the study. Two of three feasibility benchmarks were met. Intervention acceptance was high (mean score = 43/48). On average, parents used three more intervention strategies after training than at baseline. CONCLUSION: Using a BA approach to parent training shows promise for altering daily mealtime routines. Delivering this intervention in the home is feasible and received acceptable ratings among this sample.

Using a Multifaceted Approach to Working With Children Who Have Differences in Sensory Processing and Integration.

Pediatric occupational therapy practitioners frequently provide interventions for children with differences in sensory processing and integration. Confusion exists regarding how best to intervene with these children and about how to describe and document methods. Some practitioners hold the misconception that Ayres Sensory Integration intervention is the only approach that can and should be used with this population. The issue is that occupational therapy practitioners must treat the whole client in varied environments; to do so effectively, multiple approaches to intervention often are required. This article presents a framework for conceptualizing interventions for children with differences in sensory processing and integration that incorporates multiple evidence-based approaches. To best meet the needs of the children and families seeking occupational therapy services, interventions must be focused on participation and should be multifaceted.

Social networks and participation with others for youth with learning, attention, and autism spectrum disorders.

BACKGROUND: Social participation involves activities and roles providing interactions with others, including those within their social networks. PURPOSE: This study sought to characterize social networks and participation with others for 36 youth, ages 11 to 16 years, with (n = 19) and without (n = 17) learning disability, attention disorder, or high-functioning autism. METHOD: Social networks were measured using methods of personal network analysis. The Children's Assessment of Participation and Enjoyment With Whom dimension scores were used to measure participation with others. Youth from the clinical group were interviewed regarding their experiences within their social networks. FINDINGS: Group differences were observed for six social network variables and in the proportion of overall, physical, recreational, social, and informal activities engaged with family and/or friends. Qualitative findings explicated strategies used in building, shaping, and maintaining social networks. IMPLICATIONS: Social network factors should be considered when seeking to understand social participation.

Mixed-Method Exploration of Social Network Links to Participation.

The people who regularly interact with an adolescent form that youth's social network (SN), which may impact participation. We investigated the relationship of SNs to participation using personal network analysis and individual interviews. The sample included 36 youth, aged 11 to 16 years. Nineteen had diagnoses of learning disability, attention disorder, or high-functioning autism, and 17 were typically developing. Network analysis yielded 10 network variables, of which 8 measured network composition and 2 measured network structure, with significant links to at least I measure of participation using the Children's Assessment of Participation and Enjoyment (CAPE). Interviews from youth in the clinical group yielded description of strategies used to negotiate social interactions, as well as processes and reasoning used to remain engaged within SNs. Findings contribute to understanding the ways SNs are linked to youth participation and suggest the potential of SN factors for predicting rehabilitation outcomes.

Holistic Needs of University Students with Invisible Disabilities: A Qualitative Study.

AIM: To inform rehabilitation professionals' role in supporting transition to higher education through identification and description of disability related needs experienced by university students. METHODS: Participants were recruited from a large research-intensive university in the southeastern United States and included 13 students eligible for university disability services, 9 university personnel, and 1 parent of a university student with a disability. Disabilities of study participants were invisible; all but one chose to disclose diagnostic information. Data from 15 individual interviews and 2 focus groups were analyzed for themes. RESULTS: The Navigating Parallel Demands theme elucidates the ways disability related needs extended beyond the classroom to areas of health and wellness, social, and daily living. Navigation in Context describes personal and environmental circumstances surrounding processes used to meet a broad-range of demands. CONCLUSION: University participation requires students with disabilities to navigate and manage a wide range of demands while securing appropriate supports. Findings inform rehabilitation professionals in providing anticipatory guidance when preparing students with invisible disabilities for postsecondary educational transitions.

The level of agreement between child self-reports and parent proxy-reports of health-related quality of life in boys with Duchenne muscular dystrophy.

PURPOSE: To investigate the level of agreement between child self-reports and parent proxy-reports of the health-related quality of life (HRQoL) in boys with Duchenne muscular dystrophy (DMD) using both classical test theory (CTT) and Rasch analysis. METHODS: A total of 63 boys with DMD and their parents completed the pediatric quality of life inventory version 4.0 child self-report and parent proxy-report of HRQoL, respectively. The data were analyzed using both the CTT (scale-score level) and Rasch analysis (item-level). RESULTS: The intraclass correlation coefficient (ICC, scale-score level) between children and parents showed good to moderate agreement, although parents consistently underestimated their child HRQoL. In Rasch analysis (item-level), 1 out of 8 items was significantly different between children and parents in the physical health scale. Also, 3 out of 15 items were significantly different between those two groups in the psychosocial health scale. CONCLUSIONS: By applying both scale-score and item-level analyses, our study seeks to broaden the understanding of the discrepancy of the ratings between child self-reports and parent proxy-reports. The findings could provide further information about the decision-making process when selecting therapy and care programs.

Patient-report and caregiver-report measures of rehabilitation service use following acquired brain injury: a systematic review.

OBJECTIVE: To review patient-report/caregiver-report measures of rehabilitation service use following acquired brain injury (ABI). DATA SOURCES: Medline, APA PsycINFO, Embase and CINAHL were searched on November 2021 and November 2022. Authors were contacted if measures were not included in manuscripts/appendices. STUDY SELECTION: Included articles were empirical research or a research protocol, available in English and described measures of patient report/caregiver report of rehabilitation service use post-ABI via quantitative or qualitative methods. Two reviewers independently screened 5290 records using DistillerSR. Discrepancies were resolved by team adjudication. DATA EXTRACTION: Data extraction was piloted with high levels of agreement (k=.94). Data were extracted by a single member with team meetings to seek guidance as needed. Data included administration characteristics (reporter, mode of administration, recall period), psychometric evidence and dimensions assessed (types of services, setting, frequency, duration, intensity, qualitative aspects). DATA SYNTHESIS: One hundred and fifty-two measures were identified from 85 quantitative, 56 qualitative and 3 psychometric studies. Psychometric properties were reported for four measures, all of which focused on satisfaction. Most measures inquired about the type of rehabilitation services used, with more than half assessing functional (eg, physical therapy) and behavioural health rehabilitation services, but fewer than half assessing community and academic reintegration (eg, special education, vocational rehabilitation) or cognitive (eg, neuropsychology) services. Fewer than half assessed qualitative aspects (eg, satisfaction). Recall periods ranged from 1 month to 'since the ABI event' or focused on current use. Of measures that could be accessed (n=71), many included a limited checklist of types of services used. Very few measures assessed setting, frequency, intensity or duration. CONCLUSIONS: Despite widespread interest, the vast majority of measures have not been validated and are limited in scope. Use of gold-standard psychometric methods to develop and validate a comprehensive patient-report/caregiver-report measure of rehabilitation service use would have wide-ranging implications for improving rehabilitation research in ABI.

Community-Based Interventions for Childhood Trauma: A Scoping Review.

Experiencing trauma has long-lasting effects on a child's well-being, which may affect their occupational performance. This scoping review synthesized research on community-based interventions for children who have experienced trauma to highlight occupational therapists' role in trauma-informed care. We searched PubMed and PTSDPubs, including community-based interventional trials that addressed childhood trauma and excluding studies specific to refugees, sex-trafficking, significant comorbid diagnoses, and reviews. Eleven articles met criteria. Psychotherapy-based interventions (e.g., trauma-informed cognitive behavioral therapy), play and art therapy, yoga, and equine-facilitated interventions reduced posttraumatic stress symptoms. One article measured the impact of these symptoms on a child's function. Occupational therapists working in community settings appear to be underutilized in the treatment of children who have experienced trauma. Future studies should examine occupational therapists' potential to work alongside mental health providers in the community to optimize functional outcomes for children who have experienced trauma.

Characterizing rest-activity rhythms and sleep for children with and without tactile sensitivities: An observational study.

STUDY OBJECTIVES: This cross-sectional, observational study aimed to characterize and compare movement-based rest-activity rhythms (RARs) and sleep period variables of children with tactile hypersensitivities (SS) and non-sensitive peers (NSS) to expand the understanding of experienced differences in sleep. METHODS: Children (ages 6-10) wore Actigraph GT9X watches for 2 weeks and caregivers completed daily sleep diaries. RARs and sleep period variables (e.g., sleep efficiency, duration, wake after sleep onset) were analyzed and localized means were plotted to visualize average rhythms for each group. Groups were compared using Student's t tests, or non-parametric alternatives, and Hedge's g effect sizes. RESULTS: Fifty-three children and their families participated in this study (nSS = 21 nNSS = 32). The groups had similar RARs and sleep period variables. In both groups, sleep efficiency was low (SESS = 78%, SENSS = 77%) and total sleep time was short (TSTSS = 7 hrs 26 mins, TSTNSS- 7 h, 33 min) compared to national recommendations. Despite these similarities, children with SS took noticeably longer to settle down and fall asleep (53 min) than children with NSS (26 min, p = .075, g = 0.95). CONCLUSION: This study provides preliminary data describing RAR and sleep period variables in children with and without tactile hypersensitivities. While overall RAR and sleep variables were similar between groups, there is evidence that children with SS spend a longer time transitioning to sleep. Evidence is provided that wrist-worn actigraphy is tolerable and acceptable for children with tactile sensitivities. Actigraphy provides important, movement-based data that should be used in tandem with other measures of sleep health for future studies.

Parental perception of facilitators and barriers to health among young children with down syndrome: a qualitative study.

Background: Despite high rates of obesity and weight-related conditions observed in children with Down syndrome, little is known about how to prevent these conditions. Purpose: The purpose of this study was to identify parent-perceived facilitators and barriers to health for toddlers (12-36 months old) with Down syndrome. Materials and methods: We conducted in-depth, semi-structured interviews with the mothers of 25 toddlers with Down syndrome. All interviews were conducted using Zoom Video Technology, audio recorded and transcribed before being coded in NVivo software using a structured protocol. Thematic analysis was used to identify themes in perceived facilitators and barriers to health at the level of the child, family, and community. Data were triangulated using reflective journaling, video review of child meals, and member-checking techniques. Results: We identified unique themes for facilitators (on the move and sound sleep) and barriers (co-occurring conditions and eating behaviors) at the level of the child. At the level of the family and community, overarching themes that were viewed as either a facilitator or barrier, depending on the context, were identified (role models matter, time is critical, the importance of place, and social support). Conclusion: These themes can help clinicians and researchers tailor their health promotion interventions to meet the unique needs of children with Down syndrome by using strength-based approaches and providing families with the tools to overcome barriers.

A mixed-methods investigation of sensory response patterns in Barth syndrome: a clinical phenotype?

Barth syndrome is a genetic disorder that affects approximately 1/500,000 boys each year. While treatment of medical complications associated with Barth is of primary importance, there is a concomitant need to look at behavioral and clinical features of the disorder. The purpose of this study was to examine the prevalence of atypical sensory processing in 21 boys with Barth syndrome and to explore if phenotypic patterns of sensory responsiveness may be useful in early diagnosis. Using a mixed methods approach, we found that sensory issues related to feeding and eating were ubiquitous in our sample, with some behaviors such as strong gag reflex identifiable early in development. Specifically, boys with Barth had a strong preference for salty, cheesy, and spicy foods while having an overall restricted repertoire of foods they would eat (e.g., picky eaters). In boys with Barth as they age, auditory sensitivity and auditory filtering issues also emerged as potential sensory-related behaviors affecting academic performance and participation. Overall, this study suggests that early identification of sensory patterns in Barth may assist in differential diagnosis and create opportunities for early interventions that may minimize the impact of these behaviors on function and participation.

Participation and quality of life in children with Duchenne muscular dystrophy using the International Classification of Functioning, Disability, and Health.

BACKGROUND: Duchenne muscular dystrophy (DMD) is characterized by muscle damage and progressive loss of muscle function in male children. DMD is one of the most devastating genetically linked neuromuscular diseases for which there is currently no cure. Most clinical studies for DMD utilize a standard protocol for measurement exploring pathophysiology, muscle strength and timed tasks. However, we propose that examining broader components of health as emphasized by the International Classification of Functioning, Disability and Health-Children and Youth Version (ICF-CY) may be of great value to children and their families, and important outcomes for future clinical trials. METHODS: Fifty boys with DMD and 25 unaffected age-matched boys completed two self-report measures: the Children's Assessment of Participation and Enjoyment and the Pediatric Quality of Life InventoryTM 4.0. We investigated differences between the two groups with regard to participation in life activities and perceived quality of life (QoL). Additionally, we compared participation in activities and QoL in both cohorts of younger and older boys. RESULTS: Participation in physical activities was significantly lower in boys with DMD than unaffected boys. Perceived QoL was markedly diminished in children with DMD relative to unaffected controls, except in the emotional domain. The amount of time boys engage in an activity, as well as participation in social activities, declined for our older boys with DMD but no changes were observed for our older unaffected boys. For both groups, QoL remained constant over time. CONCLUSIONS: The ICF-CY provides a conceptual framework and specific terminology that facilitates investigation of the consequences of impairment in children and youth. Our study is one of the first to explore participation in a cohort of boys with DMD. It was not surprising that activities of choice for boys with DMD were less physical in nature than unaffected boys their age, but the consequences of less social engagement as the boys with DMD age is of great concern. Results from our study underscore the need to further evaluate activities that children elect to participate in, with special emphasis on facilitators and barriers to participation and how participation changes throughout the course of a disease.