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.

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.

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.

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.

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.

A User-Centered Approach: Understanding Client and Caregiver Needs and Preferences in the Development of mHealth Apps for Self-Management.

BACKGROUND: Many adolescents and young adults with chronic illness or disability often fail to develop the self-management skills necessary to independently handle medical and self-management routines. In light of these needs, we are developing iMHere 2.0 (Interactive Mobile Health and Rehabilitation), a mobile health (mHealth) system to support a self-management program. OBJECTIVE: Our objective was to gather data from persons with brain and spinal cord anomalies (BSA) and their caregivers to better understand how mHealth would be most helpful in supporting them to proactively manage daily self-care routines and to access medical care as needed. The specific purpose was not only to gather feedback and to gain increased insight into the design of the new version of iMHere, but also to gather perspectives of new groups, namely adolescents as young as 12 years and their parents and/or caregivers. METHODS: Our project employed focus group sessions and surveys to collect data from participants with BSA, as well as their caregivers. A total of six focus group sessions were conducted on four separate occasions until the data gathered reached saturation. The objectives of our focus group sessions were to better understand ways to develop mHealth systems to support self-management, to promote independence, to motivate long-term system use, and to prevent medical problems that lead to hospitalizations and emergency room visits for youth and young adults with BSA. RESULTS: A total of 16 youth and young adults with BSA and 11 caregivers participated in the sessions. Within and among our groups, the following five overarching themes emerged from the data: (1) make it easy, (2) engage, (3) educate and prepare, (4) motivate and support, and (5) personalize. Participants shared their perspectives and detailed information about mHealth apps that would be important for independence in self-care and self-management. CONCLUSIONS: Our findings suggest that most individuals keep their mobile phones with them at all times and typically use a mobile phone for social media, music, photos, and texting. Our qualitative analysis indicates that youth and young adults with BSA, as well as their caregivers, acknowledge the importance of being actively engaged in developing and using mHealth apps that monitor and manage their health care needs. Information gleaned from these focus group sessions and surveys have provided data to refine the iMHere 2.0 mHealth prototype platform that we have developed.

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.

Upper extremity outcome measures for collagen VI-related myopathy and LAMA2-related muscular dystrophy.

Congenital muscular dystrophy (CMD) comprises a rare group of genetic muscle diseases that present at birth or early during infancy. Two common subtypes of CMD are collagen VI-related muscular dystrophy (COL6-RD) and laminin alpha 2-related dystrophy (LAMA2-RD). Traditional outcome measures in CMD include gross motor and mobility assessments, yet significant motor declines underscore the need for valid upper extremity motor assessments as a clinical endpoint. This study validated a battery of upper extremity measures in these two CMD subtypes for future clinical trials. For this cross-sectional study, 42 participants were assessed over the same 2-5 day period at the National Institutes of Health Clinical Center. All upper extremity measures were correlated with the Motor Function Measure 32 (MFM32). The battery of upper extremity assessments included the Jebsen Taylor Hand Function Test, Quality of Upper Extremity Skills Test (QUEST), hand held dynamometry, goniometry, and MyoSet Tools. Spearman Rho was used for correlations to the MFM32. Pearson was performed to correlate the Jebsen, QUEST, hand-held dynamometry, goniometry and the MyoSet Tools. Correlations were considered significant at the 0.01 level (2-tailed). Significant correlations were found between both the MFM32 and MFM Dimension 3 only (Distal Motor function) and the Jebsen, QUEST, MyoGrip and MyoPinch, elbow flexion/extension ROM and myometry. Additional correlations between the assessments are reported. The Jebsen, the Grasp and Dissociated Movements domains of the QUEST, the MyoGrip and the MyoPinch tools, as well as elbow ROM and myometry were determined to be valid and feasible in this population, provided variation in test items, and assessed a range of difficulty in CMD. To move forward, it will be of utmost importance to determine whether these upper extremity measures are reproducible and sensitive to change over time.

Parental Reflections on the Diagnostic Process for Duchenne Muscular Dystrophy: A Qualitative Study.

PURPOSE: Duchenne muscular dystrophy (DMD) is a rare neuromuscular disease with no known cure. We sought to update over 30 years of research reporting on the diagnostic delays in DMD. METHODS: Through personal interviews, this study qualitatively explored parents' experiences regarding receipt of the DMD diagnosis and the guidance for care provided. Thematic analysis identified themes and provided answers to the research questions being addressed. RESULTS: Four themes emerged: (a) Dismissive illustrates little consideration of parent concern in the diagnostic process; (b) Limited Knowledge describes misunderstandings about clinical signs, recommended screenings, and testing to achieve a diagnosis of DMD; (c) Careless Delivery reports on the manner in which the diagnosis was given; and (d) Lack of Guidance describes the follow-up that occurred after the diagnosis. CONCLUSION: Despite marked medical progress over the past several decades, substantial barriers to arriving at the diagnosis of DMD and the provision of care guidance remain.

Engaging Participants in Rare Disease Research: A Qualitative Study of Duchenne Muscular Dystrophy.

PURPOSE: Clinical trials in Duchenne muscular dystrophy (DMD) are increasing due to technical advances in genetics, muscle biology and muscle imaging, and translational science. Yet the ability to achieve and measure progress in clinical trials in DMD is severely constrained by recruitment difficulties and low levels of patient and family participation. Clinical trials that do not have full inclusion of patients may affect how well new therapies perform in clinical practice. METHODS: This study qualitatively investigated family-centered and clinician-based knowledge, attitudes, and perceptions of engagement in clinical research in DMD. Thirteen focus-group sessions (8 parent based and 5 clinician based) were held at 5 demographically and geographically diverse sites (Houston, Texas; Minneapolis, Minnesota; Pittsburgh, Pennsylvania; Sacramento, California; and Washington, DC). Thematic analysis was used for identifying patterns of meaning across the dataset. FINDINGS: Totals of 28 parents and 33 clinicians participated in innovative and thoughtful discussions regarding clinical research in DMD and approaches to eliciting family engagement. Five overarching themes emerged from our qualitative data. The theme of Information discussed the lack of accessible and coherent information, as well as the overabundance of fragmented information. The theme of Conversation demonstrated the importance of having open and in-depth dialogue about research with families in eliciting trust and obligation toward the research process. The Barriers and Incentives themes presented the parents' and clinicians' views of the life-altering sacrifices that families make to participate in research and ways to reduce these burdens. Under the Solutions theme, parents and clinicians also suggested innovative ways to incentivize families and clinics and thoughtful solutions to increase family engagement in research. IMPLICATIONS: Effective recruitment for clinical studies in rare diseases requires a truly committed and engaged study team, as well as the necessary resources to overcome the multitude of barriers that families face. A clearly delineated recruitment plan, developed together with families, should be the standard operating procedure during clinical trial development. Protocols utilizing direct family-centered strategies for providing information and for recruiting research participants in studies in rare diseases are essential.

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.

Taste perception and sensory sensitivity: Relationship to feeding problems in boys with Barth Syndrome.

BACKGROUND: Feeding problems are common in boys with Barth syndrome and may contribute to the population's propensity for growth delay and muscle weakness. The purpose of this study was to quantify and describe these feeding issues and examine altered taste perception and sensory sensitivity as contributing factors. METHODOLOGY: A cross-sectional, two-group comparison design was used to examine feeding preferences and behaviors, chemical taste perception, and sensory sensitivities in fifty boys with (n=24) and without (n=26) Barth ages 4-17 years. Taste perception was measured using chemical test strips saturated with phenylthiocarbamide (PTC) and sodium benzoate (NaB). Feeding problems were documented by parents using a Food Inventory, while sensory sensitivities were recorded using a Short Sensory Profile. RESULTS: Boys with Barth differed significantly from typical peers with regards to problem feeding behaviors. For boys with Barth, food refusal and food selectivity were identified as being present in 50% the sample, while 70% of had identified problems related to gagging or swallowing foods. About half of all Barth families noted that their child's eating habits did not match the family's and that separate meals were often prepared. As demonstrated in previous research, about 50% of boys with Barth demonstrated probable or definite differences in taste/smell sensitivity, which was significantly higher than controls. On tests of chemical taste perception, boys with Barth were significantly more likely to be supertasters to PTC and non-tasters to NaB. Taster-status did not directly relate to the presence of feeding problems, however, taste/smell sensitivity did significantly relate to food selectivity by type and texture. CONCLUSIONS: Results indicate feeding problems in at least 50-70% of boys with Barth syndrome, and suggest that behaviors are often present before 6 months of age. Differences in taste perception may influence dietary choices in boys with Barth, particularly their craving of salty foods. Taste/smell sensitivity also appears to influence food selectivity, and therefore may be important to consider in this population, particularly in light of dietary influences on cardiac function, energy consumption, and overall growth.

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.

Review of occupational therapy intervention research in the practice area of children and youth 2009-2013.

PURPOSE. We conducted a systematic review examining the extent to which pediatric intervention research recently published in the American Journal of Occupational Therapy reflects occupational therapy's holistic occupation-based tenets. METHOD. We surveyed 10 systematic reviews and analyzed 38 single effectiveness studies for intervention approach, type, level of environmental targeting, level of occupational task and participation practice, and measures used. RESULTS. Of the 38 single effectiveness studies, 12 (32%) explicitly incorporated both environmental targets of intervention and practice of complex or in vivo occupational tasks, with steady increases during the 2009-2013 time frame. CONCLUSION. In the area of children and youth, occupational therapy is making steady gains in reflecting and demonstrating the effectiveness of the profession's holistic, occupation-based tenets. Occupational therapy researchers must be mindful to ensure that despite the reductionist nature of intervention research, interventions reflect the profession's holistic understanding of the interplay between the child, environment, and occupations.