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.

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.

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.

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.

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.

Review of occupational therapy research in the practice area of children and youth.

We conducted a systematic review focusing on articles in the occupational therapy practice category of Children and Youth published in the American Journal of Occupational Therapy over the 2-yr period of 2009-2010. We used the frameworks of the International Classification of Functioning, Disability and Health (ICF) and Positive Youth Development (PYD) to explore occupational therapy research progress toward the goals of the Centennial Vision. We organized 46 research articles by research type and classified them within these two frameworks. Most reviewed published research investigated variables representing constructs falling within the ICFdomains of Body Functioning and Activity. The effect of occupational therapy interventions on PYD resided primarily in building competence. To meet the tenets of the Centennial Vision, occupational therapists must document changes in children's engagement in everyday life situations and build the evidence of occupational therapist's efficacy in facilitating participation.

Effects of a father-based in-home intervention on perceived stress and family dynamics in parents of children with autism.

Parents of children with autism report high rates of stress. Parental differences in stress are inconsistent, with most research indicating that mothers report higher levels of stress than fathers. We explored parental differences before and after an in-home training program. Fathers were taught an intervention designed to improve their child's social reciprocity and communication; they then trained mothers. Stress was assessed with the Parenting Stress Index-Short Form, and family dynamics was assessed with the Family Adaptability and Cohesion Evaluation Scales II. Both mothers and fathers reported high preintervention levels of stress. After intervention, fathers' stress was reduced, but not significantly, possibly because of the variability in fathers' scores; mothers' stress scores were significantly reduced. Parenting styles were significantly different before and after intervention. Interdisciplinary teams, including occupational therapists, nurses, and special educators, can work.together to have a positive impact on the lives of families of children with autism.

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.

Cost effectiveness of a telerehabilitation program to support chronically ill and disabled elders in their homes.

Chronic illnesses account for approximately 75% of all healthcare costs in the United States today, resulting in functional limitations and loss of independence, as well as increased medical expenditures. The elderly population is at a higher risk for developing chronic conditions, increasing their risk for disabilities. Given the rapid growth of the aging population, and the chronic illnesses, disabilities, and loss of functional independence endemic to elders, novel methods of rehabilitation and care management are urgently needed. Telehealth models that combine care coordination with communications technology offer a means for managing chronic illnesses, thereby decreasing healthcare costs. We examined the effects of a Veterans Administration (VA) telerehabilitation program (Low Activities of Daily Living [ADL] Monitoring Program-LAMP) on healthcare costs. LAMP is based on a rehabilitative model of care. LAMP patients received adaptive equipment and environmental modifications, which focused on self-care and safety within the home. LAMP Care Coordinators remotely monitored their patient's vital signs and provided education and self-management strategies for decreasing the effects of chronic illnesses and functional decline. The matched comparison group (MCG) received standard VA care. Healthcare costs 12 months preenrollment and 12 months post-enrollment were examined through a difference-in-differences multivariable model. Using actual costs totaled for these analyses, no significant differences were detected in post-enrollment costs between LAMP and the MCG. For LAMP patients, the provision of adaptive equipment and environmental modifications, plus intensive in-home monitoring of patients, led to increases in clinic visits post-intervention with decreases in hospital and nursing home stays.

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.

A telerehabilitation model for victims of polytrauma.

The Low Activities of Daily Living Monitoring Program (LAMP) at the North Florida/South Georgia Veterans Health System is a telerehabilitation program that promotes independence for veterans experiencing difficulties with activities of daily living by focusing on a combination of care coordination, assistive technology/adaptive equipment, and home environmental modifications. Initially designed to serve elders at risk of institutionalization, LAMP now is being adapted to the needs of veterans living with the effects of multisystem polytrauma. This article provides an overview of telehealth, explains the LAMP model, and presents a case history of a veteran who sustained complete tetraplegia and traumatic transfemoral amputation as the result of a blast injury and who lives successfully at home with the support of LAMP. A recent cost analysis of LAMP patients compared to a matched cohort receiving standard care also is presented. The LAMP model shows promise as a method for home-based management of combat-wounded veterans who experience multisystem polytrauma.