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.

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.

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.

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.

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.

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.

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).

Community Conversations: Stakeholder-Identified Research Priorities to Foster Community Participation for Individuals With Intellectual and Developmental Disability.

To identify future research priorities and meaningful outcomes focused on community-level interventions for children and youth with intellectual and developmental disabilities and families, a group underrepresented in research, we established a diverse patient-centered outcomes research (PCOR) community. We focused on engaging regionally and nationally-diverse stakeholders-individuals, families, healthcare professionals, community, and policy experts-in research development activities that would build partnerships and research capacity. This community of stakeholders also represented the matrix of systems, services, and programs that people frequent in their communities (e.g., cultural arts, worship, sports and recreation, and transportation). We present the engagement process and methods for including individuals with intellectual and developmental disabilities as stakeholders in research planning and processes. The results of planning, completing, and evaluating three face-to-face research capacity-building meetings and their subsequent stakeholder engagement activities include: (1) individuals with intellectual and developmental disabilities and their families clearly expressed a desire to be included and to feel good about their participation in community settings, (2) many of our stakeholders wanted action and change to happen in their communities now, and often did not realize or understand that research takes time, (3) organizations expressed a need for mentoring related to best practices for access and inclusive programming. Overarching issues around societal inclusion, equal opportunities, and life chances for individuals with intellectual and developmental disabilities and their families were front and center across communities and multi-stakeholder groups, and achieving change remains valued and a high priority.

Characterizing Sleep Differences in Children With and Without Sensory Sensitivities.

Objectives: Individuals register and react to daily sensory stimuli differently, which influences participation in occupations. Sleep is a foundational nightly occupation that impacts overall health and development in children. Emerging research suggests that certain sensory processing patterns, specifically sensory sensitivities, may have a negative impact on sleep health in children. In this study, we aimed to (i) characterize sleep in children with and without sensory sensitivities and (ii) examine the relationship between sensory processing patterns (using the Sensory Profile-2) and sleep using validated parent- and child-reported questionnaires. We hypothesized that children with sensory sensitivities will exhibit more difficulties with sleep. Methods: We recruited 22 children (ages 6-10) with sensory sensitivities (SS) and 33 children without sensory sensitivities (NSS) to complete validated sleep and sensory processing questionnaires: the Children's Sleep Habits Questionnaire (CSHQ), Sleep Self-Report (SSR), and Sensory Profile-2. Results: Children with SS had significantly more sleep behaviors reported by both parents (p < 0.001, g = 1.11) and children (p < 0.001, g = 1.17) compared to children with NSS. Specifically, children with SS had higher frequencies of sleep anxiety (p = 0.004, g = 0.79), bedtime resistance (p = 0.001, g = 0.83), and sleep onset delay (p = 0.003, g = 0.95). Spearman's ρ correlations indicated significant positive correlations between parent- and child-reported sleep. Children with SS showed a larger association and greater variability between sleep and sensory processing compared to their peers. Significant positive correlations between parent-reported sleep behaviors and sensory sensitive and avoiding patterns were identified for both children with SS and NSS. Child-reported sleep behaviors were most strongly associated with sensitive and avoiding patterns for children with NSS and seeking patterns for children with SS. Conclusion: We present evidence that sleep is impacted for children with SS to a greater extent than children with NSS. We also identified that a child's sensory processing pattern may be an important contributor to sleep problems in children with and without sensory sensitivities. Sleep concerns should be addressed within routine care for children with sensory sensitivities. Future studies will inform specific sleep intervention targets most salient for children with SS and other sensory processing patterns.

Clinical and Ergonomic Comparison Between a Robotic Assisted Transfer Device and a Mobile Floor Lift During Caregiver-Assisted Wheelchair Transfers.

BACKGROUND: The robotic assisted transfer device was developed as an updated lift technology to reduce adjustments in posture while increasing capabilities offered by transfer devices. The purpose of this study was to compare the trunk biomechanics of a robotic assisted transfer device and a mechanical floor lift in the transfer of a care recipient by a caregiver during essential transfer tasks. METHODS: Investigators enrolled 28 caregiver/care recipient dyads to complete 36 transferring tasks. Surface electromyography for the back muscles and motion data for trunk range of motion were collected for selected surfaces, phase, and direction tasks using a robotic assisted transfer device and a mechanical floor lift. RESULTS: Robotic assisted transfer device transfers required significantly smaller range of trunk flexion (P < 0.001), lateral bend (P < 0.001), and axial rotation (P = 0.01), in addition to smaller distance covered (P < 0.001), average instantaneous velocity (P = 0.01), and acceleration (P < 0.001) compared with a mobile floor lift. The robotic assisted transfer device transfers required significantly smaller peak erector spinae (left: P = 0.001; right: P < 0.001) and latissimus dorsi (right: P < 0.001) and integrated erector spinae left (P = 0.001) and latissimus dorsi right (P = 0.01) electromyography signals compared with the floor lift. CONCLUSIONS: The robotic assisted transfer device provides additional benefits to mobile floor lifts which, coupled with statistically lower flexion, extension, and rotation, may make them an appealing alternative intervention.

Usability and task load comparison between a robotic assisted transfer device and a mechanical floor lift during caregiver assisted transfers on a care recipient.

INTRODUCTION: The RATD represents a novel methodology to reduce strain, manoeuvring, and cognitive load a caregiver experiences when conducting transfers on a mannequin. However, caregivers who used this new technology report suggested adjustments regarding the robot's human machine interface and shape as to improve transfer efficiency and comfort for care recipients. The purpose of this study was to test a redesigned RATD and compare its ergonomics during a transfer to those of a mechanical floor lift. METHODS: This was cross sectional protocol. As opposed to prior research which used a mannequin, caregivers in this study (N = 28) partnered with, and transferred, a mobility device user (N = 28) at three unique surfaces. Information about task demand and usability was collected from surveys after use of each device at each surface. RESULTS: Results indicated reduced physical demand (p = .004) and discomfort frequency (p = .01) in caregivers conducting the transfers with the RATD compared to the mechanical floor lift. Care recipients reported no significant differences between both transfer devices. Critiques with the interface, the harness and sling, and the robot's rigidity indicated more work is needed before introducing this technology to a larger market. Conclusions: The RATD represents a promising new intervention for transferring and handling care recipients who use wheelchairs. However, while caregivers report reduced physical demand and discomfort, more work is required to advance the ease of the human machine interface, the amount of space allowed for the robot to operate, and the ability of the care recipient to operate the technology independently.IMPLICATIONS FOR REHABILITATIONCaregivers report significant physical and mental stress while transferring clients in and out of a wheelchair.Clinical standard transfer equipment is limited in the space which it can be used.Robots, particularly those portable and powered, have the ability to not only make the transfer experience safer, but also expand the applications this equipment can provide.

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.

Comparing contributors of parental sleep health in families with and without a child with Duchenne muscular dystrophy.

BACKGROUND: The sleep health of caregivers of children with Duchenne muscular dystrophy (DMD) is often overlooked in clinical practice and research. This study characterizes the sleep health of caregivers of children with DMD (4-17 years) compared to parents of age-matched, unaffected children. We explore potential contributors to parental sleep efficiency and hypothesize that child awakenings will have a considerable influence on parental sleep efficiency. METHODS: In this observational study, parents and their children were asked to wear the ActiGraph GT9X Link at night for 1 month. From these data, actigraphy variables (eg, percent sleep efficiency, nocturnal awakenings) were calculated and averaged for parents and children. We also used the Pittsburgh Sleep Quality Index (PSQI) to measure subjective sleep quality. MAIN FINDINGS: Parents in the DMD group (n = 25, M = 84.5%) had significantly worse sleep efficiency compared to controls (n = 15, M = 87.8%, p = .048). This difference was sustained after controlling for parent age, child age, and average child awakenings (F(4, 23) = 2.68, p= .057, R2 = .32). Additionally, more parents in the DMD group scored as "poor sleepers" on the PSQI (above 5, 50%) compared to controls (23%), suggesting a strong, yet not statistically significant association between subjective poor sleep and group (χ2(1) = 2.47, p = .116, OR = 3.33). CONCLUSION: Parents of children with DMD exhibit both objective and subjective differences suggesting their sleep is impaired. Interestingly, these sleep concerns are not significantly explained by child awakenings as hypothesized. Future research is needed to fully understand the prevalence and cause of poor sleep in a larger group of DMD caregivers as well as direct care for caregivers of children with disabilities.

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.

Assessing Motor Function in Congenital Muscular Dystrophy Patients Using Accelerometry.

BACKGROUND: When tested in a controlled clinic environment, individuals with neuromuscular-related symptoms may complete motor tasks within normal predicted ranges. However, measuring activity at home may better reflect typical motor performance. The accuracy of accelerometry measurements in individuals with congenital muscular dystrophy (CMD) is unknown. We aimed to compare accelerometry and manual step counts and assess free-living physical activity intensity in individuals with CMD using accelerometry. METHODS: Ambulatory pediatric CMD participants (n = 9) performed the 6-minute walk test in clinic while wearing ActiGraph GT3X accelerometer devices. During the test, manual step counting was conducted to assess concurrent validity of the ActiGraph step count in this population using Bland-Altman analysis. In addition, activity intensity of 6 pediatric CMD participants was monitored at home with accelerometer devices for an average of 7 days. Cut-point values previously validated for neuromuscular disorders were used for data analysis. RESULTS: Bland-Altman and intraclass correlation analyses showed no concurrent validity between manual and ActiGraph-recorded step counts. Fewer steps were recorded by ActiGraph step counts compared with manual step counts (411 ± 74 vs 699 ± 43, respectively; P = .004). Although improved, results were in the same direction with the application of low-frequency extension filters (587 ± 40 vs 699 ± 43, P = .03). ActiGraph step-count data did not correlate with manual step count (Spearman ρ = 0.32, P = .41; with low-frequency extension: Spearman ρ = 0.45, P = .22). Seven-day physical activity monitoring showed that participants spent more than 80% of their time in the sedentary activity level. CONCLUSIONS: In a controlled clinic setting, step count was significantly lower by ActiGraph GT3X than by manual step counting, possibly because of the abnormal gait in this population. Additional studies using triaxial assessment are needed to validate accelerometry measurement of activity intensity in individuals with CMD. Accelerometry outcomes may provide valuable measures and complement the 6-minute walk test in the assessment of treatment efficacy in CMD.

Uncovering sleep in young males with Duchenne muscular dystrophy.

OBJECTIVES: Sleep health in rare disease is often overlooked due to the complex nature of the disease. For males with Duchenne muscular dystrophy, sleep assessment is typically focused on pulmonary function and identification of sleep disordered breathing. Unfortunately for young boys with Duchenne muscular dystrophy, sleep assessment is often neglected, resulting in a dearth of knowledge on sleep health in this population. This study describes sleep quantity and quality in both younger (4-9 years) and older (10-17 years) males with Duchenne muscular dystrophy (n = 19) and compares these characteristics with sleep characteristics of unaffected peers (n = 17). METHODS: This study was a longitudinal, observational study. Sleep measures were collected using the parent-proxy Children's Sleep Habits Questionnaire-Abbreviated version and objective sleep measures from actigraphy (sleep efficiency, awakenings, and awakening duration) over 30 days for all participants. Means and standard deviations were examined, and effect sizes were computed to quantify the magnitude of difference between the Duchenne muscular dystrophy and unaffected groups. RESULTS: Overall, boys with Duchenne muscular dystrophy were found to experience worse sleep than their unaffected peers as measured by parent report and actigraphy. Effect sizes of both measures demonstrated moderate to large magnitudes of difference in many of the sleep variables. Parents of boys with Duchenne muscular dystrophy reported higher scores (indicating worse sleep) in all subsections and total score of the Children's Sleep Habits Questionnaire - Abbreviated version. Actigraphy data indicated that the Duchenne muscular dystrophy group had lower percent sleep efficiency, more night awakenings and longer duration of night awakenings than their unaffected peers. CONCLUSION: Our findings offer a novel look into sleep in young boys with Duchenne muscular dystrophy. Both parent-report and actigraphy data indicate poor sleep health in this population compared with age-matched unaffected peers. Actigraphy was found to align with parent-report of sleep in this population, supporting the use of these two different ways to measure sleep in Duchenne muscular dystrophy. Results from this study should encourage clinicians and researchers alike to further explore sleep and its impact on disease in young boys with Duchenne muscular dystrophy.

Examining child mealtime behavior as parents are coached to implement the Mealtime PREP intervention in the home: Findings from a pilot study.

Introduction: The purpose of this study was to examine parental use of evidence-based mealtime strategies, child mealtime behavior, and parental identification of mealtime problems over time as parents were coached to implement the Promoting Routines of Exploration and Play during Mealtime intervention as part of a pilot study. Method: This repeated measures study included data collection during three phases: (a) pre-intervention; (b) intervention; (c) post-intervention. Primary outcome measures included a parental strategy use checklist (parental strategy use) and the Behavioral Pediatric Feeding Assessment (problematic child behavior and parental identification of mealtime problems). Linear mixed models were fitted to assess change over time. Results: We observed significant improvements in parental strategy use (p < .001), child mealtime behavior (p < .001), and parental perception of mealtime problems (p = .002) over time. Conclusions: The results of these analyses signal that empowering parents to integrate evidence-based strategies into child mealtimes is a promising approach to managing child mealtime behavior. More research is needed to determine the true relationship between parental strategy use and child behavior over time.

HRQoL in Barth Syndrome: Agreement between Child Self-reports and Parent Proxy-reports and Its Relationship to Parental HRQoL.

PURPOSE: Barth syndrome is an X-linked rare disorder that typically affects only males. This study investigates 1) agreement between child self-reports and parent proxy-reports of HRQoL in boys with Barth syndrome and 2) relationship between parental HRQoL and parent proxy-reports of HRQoL for the child. MATERIALS AND METHODS: Twenty-eight boys with Barth syndrome and their parents participated in this study. The PedsQL™ 4.0 and the PedsQL™ Family Impact Module were used to measure HRQoL of the boys, and the parents' HRQoL, respectively. The Intraclass Correlation Coefficient was used to test agreement between the child self-reports and parent proxy-reports of HRQoL. The Spearman correlation coefficient was used to test the relationship between parental HRQoL and parent proxy-reports of HRQoL for the child. RESULTS: The agreement between the child self-reports and the parent proxy-reports showed moderate-to-good agreement. Higher parental HRQoL was significantly related to higher ratings of the parents on their children's HRQoL (p < .05). CONCLUSIONS: This study broadens understanding of HRQoL of boys with Barth syndrome using both child self-reports and parent proxy-reports. The findings indicate that the parent proxy-report of HRQoL should be used in conjunction with the child self-report when making client-centered health decisions.

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.