Social Participation Experiences of Families Raising a Young Child With Autism Spectrum Disorder: Implications for Mental Health and Well-Being.

IMPORTANCE: Social participation (SP) is an important facilitator of positive mental health for children and families. Children are dependent on their families to mediate SP, yet families of children with autism spectrum disorder (C-ASD) seemingly limit SP because of behavioral and functional challenges in community environments. The resulting isolation can affect the child's and the family's mental health. OBJECTIVE: To distill the essence of everyday SP experiences in the community of families raising C-ASD. DESIGN: Data collected via in-depth, semistructured interviews with a purposive sample and analyzed in the phenomenological tradition. SETTING: Community. PARTICIPANTS: We recruited seven families with English-speaking parents (ages 18-64 yr) raising one C-ASD (age 2-8 yr). Families with more than one C-ASD or those whose C-ASD was diagnosed with complex medical condition or a neurological or genetic disorder were excluded. RESULTS: The essence of experiences of SP emerged in the form of three themes depicting the mismatch between societal expectations for SP and families' experience: (1) "the struggle," (2) "it's hard to feel like you belong," and (3) what we "have to do." CONCLUSIONS AND RELEVANCE: As a collective, families expressed desire for everyday community SP and could do so only in select environments with core groups. The findings, as interpreted through the lens of mental health promotion, reveal opportunities to reduce barriers and to promote meaningful family SP so as to facilitate positive mental health and well-being through the transactional intersecting characteristics of the child with ASD, the family, and the community. What This Article Adds: This study illuminates the experience of SP of families raising a young C-ASD, highlighting both supports and barriers. Practitioners can use this information to potentially prevent isolation and promote both child and family mental health and well-being.

Provision of paediatric wheelchairs in low resource settings: a scoping review.

PURPOSE: Inadequate wheelchair provision in children can lead to delays in growth and development, poorer health, and decreased participation. Wheelchair provision for children can be challenging, especially in low-resource settings, due to limited resources. Therefore, the purpose of the scoping review was to gain an understanding of the current state of paediatric wheelchair provision in low resource settings and identify factors, strategies, and gaps that can lead to more successful wheelchair provision. METHODS: This scoping review used literature published after 2010, related to paediatric wheelchair provision in low resource settings. We searched online databases and grey literature and extracted data based on categories from the World Health Organisation Guidelines to wheelchair provision in low resource settings. RESULTS: 34 articles were used to identify and analyse common themes and successful strategies related to wheelchair provision for children in low resource settings. Aspects of paediatric wheelchair provision were mentioned in the literature but were rarely the focus. End-user outcomes were the least represented category in the literature. CONCLUSION: Based on the currently available evidence the overall state of a wheelchair for children is inadequate. Improvements in design and production, personnel capacity, and service delivery systems are recommended to promote best practices. The lack of child-focussed wheelchair provision and end-user involvement in the research process urgently needs to be addressed.Implications for RehabilitationIdentify best practiceIdentify gaps in knowledgeDetermine areas of need for future research.

Home food access and children's heart healthy dietary intake at home and child care.

Background: About 12 million children under 5 years of age attend early care and education centers (ECEs). Child intake at home can be impacted by food insecurity, which is higher among low income, rural, and racially diverse families. Aim: Determine whether greater access to fruits, vegetables, and snacks at home was associated with heart-healthy diet score at home and at ECEs in preschool-age children, and to determine whether there is a difference in heart-healthy diet score between home and ECEs. Methods: Cross-sectional study involving children (3-to-5-year-old, n = 88) who attended 16 licensed ECEs across Oklahoma. Caregivers completed the Healthy Home Survey and 3-Dinner Dietary recall to report children's home food access and home dinner dietary intake, respectively. Researchers recorded children's ECE lunch consumption using the Dietary Observation for Child Care. Heart-healthy diet score was derived from composite scores for six variables: consumption of fish, fruits, vegetables, sodium, fiber, and sugary drinks. Results: Home access to total fruits and vegetables (16.2 ± 6.3) outnumbered snacks (5.5 ± 3.0). No difference in composite heart-healthy diet score between ECEs (1.50 ± 0.8) and home (1.27 ± 0.9, P = 0.0851). Children within neither environment met recommendations for most variables (vegetables [18-24%], fruit [6-10%], fish [5-10%], fiber [1%], sodium [22-39%]). No relationship between home food access variables and the heart-healthy diet scores at home or ECEs. Conclusion: Dietary intake of children at home and ECEs does not meet heart-healthy diet score recommendations. Interventions should support preschool aged children from families that are located rurally, low-income, racial minorities, and whose primary caregivers work outside the home.

Experience of Sleep for Families of Young Adults With Autism Spectrum Disorder.

IMPORTANCE: Children with autism spectrum disorder (ASD) may experience sleep difficulties that worsen into adulthood and negatively influence both child and family, yet the experience is not well understood. Understanding the family's experience can inform occupational therapy providers, future research, and practice guidelines. OBJECTIVE: To examine experiences surrounding sleep for families raising a young adult with ASD (YA-ASD). DESIGN: Qualitative study in the phenomenological tradition of Moustakas (1994). Experienced researchers analyzed transcripts from in-depth, in-person interviews to triangulate data, distill themes, and construct the essence of family experience. Trustworthiness was established through member checking, audit trails, and epoché diaries that were maintained throughout data analyses. SETTING: Community setting (large city in the northeastern United States). PARTICIPANTS: People who self-identified as living in a family arrangement that included a YA-ASD age 15-21 yr, able to verbally participate in English. Families with children diagnosed with developmental disabilities other than ASD were excluded. RESULTS: Six eligible families identified through volunteer sampling participated. The participants' sociodemographic diversity was limited across household income, education level, and ethnicity. All YA-ASD in this study were limited verbally and unable to contribute. Analyses of interview transcripts revealed five themes that form the essence of the families' experience surrounding sleep. CONCLUSIONS AND RELEVANCE: Sleep issues for YA-ASD continue into adulthood and affect the entire family because of continuous co-occupation; occupational therapy support is therefore important for families of YA-ASD. The lack of effective evidence-based interventions supporting the YA-ASD population also reveals an area for growth. What This Article Adds: The results indicate the importance of addressing sleep for YA-ASD and their families in occupational therapy practice because of its considerable impact on family life.

The Family Meal Model: Influences on Family Mealtime Participation.

The family meal affords benefits such as positive nutritional habits, trust building, connecting, parent modeling, and teaching. During the school-aged years, families can support children's development of health behaviors and family routines. This interdisciplinary study examined families' experiences of mealtimes and the factors that support or hinder mealtime participation. Grounded theory methods guided data collection and analysis. Semi-structured interviews were conducted with 21 families with at least one school-aged child (n = 68). Interviews were audio recorded and transcribed. Researchers coded and categorized data, identified themes, and generated a model. Families defined family mealtime as all family members being together at the kitchen or dining room table eating a meal. Families enjoyed being together, conversing, and connecting through family mealtime participation. The Family Meal Model proposes relationships between factors that support or hinder a family's mealtime participation. Discussion includes support for a broadened role of occupational therapy in promoting family occupation through family meals.

Exploring families' experiences of health: contributions to a model of family health.

Child health and developmental outcomes are influenced by the health of the family and the context created. Research suggests symptoms of poor family health (e.g. suboptimal family interactions, parenting stress) yet there is limited understanding of the factors which contribute to robust family health which may unveil opportunities for targeted intervention and family health promotion. The present study examined families' experiences of family health and factors contributing to family health. We performed a qualitative study using constructivist grounded theory methods to guide our understanding of family health for families with typically developing children aged 5-18. Interviews were conducted in family homes and all members were invited to participate. Data from interviews were transcribed, coded, thematically analyzed, and verified with select families. Ten families, including 10 mothers, 8 fathers, and 15 children participated in the study. Participants described family health as a process of balance, living purposefully, and sharing experiences together in alignment with family identity. Mediating family health were processes of awareness and reflection, and adapting, adjusting, and changing in response to family life including external stress factors. Results highlight the possibility for healthcare practitioners to facilitate families' self-reflection and awareness about their health in order to mediate family health development.

Association Between Maternal Stress, Work Status, Concern About Child Weight, and Restrictive Feeding Practices in Preschool Children.

Objectives To examine the relationship between maternal stress, work status, concern about child weight, and the use of restrictive feeding practices among mothers of preschool children. Methods 285 mothers of 2-to-5-year-old children completed an on-line survey. Questions included demographics, items from the Depression Anxiety Stress Scale, and the Child Feeding Questionnaire. Linear regression and ANOVA examined the relationship between maternal stress, work hours, concern about child weight, and the use of restrictive practices for one 2-to-5-year-old child living within the home. Results Mothers were 32.6 ± 5.2 years of age and spent 39.7 ± 12.0 h/week at work. Seventy-one percent worked full time. Children were 3.4 ± 1.0 years of age and 51% male. Stress (3.41 ± 0.77, p ≤ 0.001) and concern about child weight (3.41 ± 0.77, p ≤ 0.00) were associated with the use of restrictive feeding practices. Mothers with severe/extremely severe stress used restriction more than mothers with normal stress, respectively (3.63 ± 0.80, 3.30 ± 0.81, p = 0.03). No difference was found among mothers with mild/moderate stress (3.50 ± 0.63, p = 0.06). There was no association between work hours (p = 0.50) or work status (p = 0.91) and the use of restrictive feeding practices. Conclusions Maternal stress and concern about child weight were associated with the use of restrictive feeding practices. Considering the current rates of childhood obesity in the United States, understanding factors that influence a child's food environment is advantageous and can help improve maternal and child health.

Tribally Affiliated Child-Care Center Environment and Obesogenic Behaviors in Young Children.

BACKGROUND: Child-care centers are an integral part of life for many families with young children. American Indian children are at elevated health risk because of higher levels of obesity and associated health behaviors. OBJECTIVE: Our aim was to assess the child-care environment and children's physical activity (PA) and dietary intake in young children attending tribally affiliated child care. DESIGN: We conducted a cross-sectional study. PARTICIPANTS/SETTING: Participants were from 11 tribally affiliated child-care centers across Oklahoma and included 82 children aged 3 to 5 years old. MAIN OUTCOME MEASURES: Classroom observations were conducted using the Environmental and Policy Assessment Observation to measure PA and nutrition environments. Children wore an ActiGraph GT3X accelerometer and lunchtime plate waste was observed. STATISTICAL ANALYSES: Descriptive statistics, including mean±standard deviation and frequencies, were calculated for the children's behaviors and environment. RESULTS: The total environment score was 23.9±5.2 (maximum=43). The nutrition score was 12.5±3.1 (maximum=21). The PA score was 11.7±2.2 (maximum=22). The participants were 3.8±0.1 years old, 55% were male, 67% were American Indian, and 38% were overweight or obese. Accelerometers were worn for 5.9±1.7 hours, excluding naptime. Children accumulated 4.3±2.2 min/h of moderate to vigorous PA, 4,294±1,883 steps/day, and 12.1±3.7 steps/min. At lunch, children were served 510±241 kcal, and consumed 387±239 kcal. Lunches consisted of 47% carbohydrate, 20% protein, and 33% fat. Total number of F/V served was 2.9±1.9 and consumed was 2.3±1.8, while whole grains served and consumed were 0.3±0.4 and 0.2±0.4, respectively, and lean proteins served and consumed were 0.3±0.4 and 0.2±0.4, respectively. CONCLUSIONS: This study describes obesogenic aspects of the child-care environment and identifies areas for improvement. Children did not accumulate adequate PA or consume calories or fat excessively. Children consumed multiple F/V; however, more whole grains and lean proteins could be provided. Future research might investigate how the healthfulness of the child-care environment can be improved by counseling providers on nutrition and PA strategies to prevent obesity.

Obesogenic environments in tribally-affiliated childcare centers and corresponding obesity rates in preschool children.

BACKGROUND: Determine the relationship between obesogenic characteristics of childcare and child adiposity in tribally-affiliated centers in Oklahoma. METHODS: The two-day Environment and Policy Assessment and Observation (EPAO) included a total environment (TE), nutrition (N), and physical activity (PA) score and took place in 11 centers across Oklahoma. Eighty-two preschool children (3-5 years) participated. Child height and weight were measured and overweight status (≥ 85th percentile for age and sex) was determined. Regression models, fit using Generalized Estimating Equations methodology to account for clustering by center were used and adjusted for center characteristics. RESULTS: Participants were 3.8 (0.8) years old, 55% male, 67% American Indian (AI) and 38% overweight. A healthier TE and PA was associated with a reduced odds of overweight, which remained significant after adjusting for some center characteristics, but not all. A healthier TE, N, and PA was associated with lower BMI percentile, which remained significant after some center-level adjustments, but not all. Lower sedentary opportunity and sedentary time were no longer associated with reduced odds of overweight following adjustment. Lower opportunity for high sugar and high fat foods and minutes of active play were associated with reduced odds of overweight in some adjusted models. CONCLUSIONS: Collectively unadjusted and adjusted models demonstrate that some aspects of a healthier childcare center environment are associated with reduced odds of overweight and lower BMI percentile in preschool children attending tribally-affiliated childcare in Oklahoma. Future research should examine the association of childcare and health behaviors and further explore the role of potential confounders.

Benefits of Family Meals for Children With Special Therapeutic and Behavioral Needs.

Frequency of family meals (FMs) is associated with favorable child outcomes; however, no study to date has examined the relationship between frequency of FMs and outcomes for children with disabilities. Data from the 2007 National Survey of Children's Health for children with disabilities (N = 4,336) were used. Logistic regression for each dependent variable was completed using frequency of FMs and covariates of age, gender, race, family structure, and poverty level. Each day per week increase in the frequency of FMs increased the likelihood for positive social skills (odds ratio [OR] = 1.09, 95% confidence interval [CI] [1.01, 1.19]) and engagement in school (OR = 1.09, 95% CI [1.02, 1.16]). Frequency of FMs was not associated with problematic social behaviors or parental aggravation with child. Our findings suggest that children with disabilities whose families participate in frequent FMs have a greater likelihood of positive social and family health outcomes.

Frequency of family meals and 6-11-year-old children's social behaviors.

Family meals are regarded as an opportunity to promote healthy child development. In this brief report, we examined the relationship between frequency of family meals and children's social behaviors in 6-11-year-olds. The 2007 U.S. National Survey of Children's Health (NSCH) provided data on the frequency of family meals in a sample of 6-11-year-old children (N = 24,167). The following social behavior indicators were examined: child positive social skills, child problematic social behaviors, child engagement in school, and parental aggravation with the child. Individual logistic regression analyses were calculated in unadjusted and adjusted models. On average, families had 5.3 meals together per week. In adjusted models, more frequent family meals increased the odds of child positive social skills (OR = 1.08, 95% CI [1.02, 1.16]) and child engagement in school (OR = 1.11, 95% CI [1.06, 1.15]), and decreased the likelihood of child problematic social behaviors (OR = 0.92, 95% CI [0.87, 0.98]). There was no association between frequency of family meals and parental aggravation with the child (OR = 0.98, 95% CI [0.93, 1.04]). Findings support the promotion of family meals to benefit children's development of healthy social behaviors.

Partnering to understand: an investigation of health disparity in the communities surrounding a university health sciences center.

BACKGROUND: Oklahoma's health ranking is seventh to last in America. More specifically, the health in the four zip codes surrounding the Oklahoma University Health Science Center (OUHSC) in is among the lowest in the state. The primary purpose of this study was to understand, in collaboration with community members and partners, why health disparity persists in this area. The specific aims for this study included: uncovering trends and patterns related to health in the area surrounding the OUHSC and partnering with families who live in the surrounding neighborhoods to understand perspectives regarding persistence of health disparity. METHODS: The research used community-engaged research methods including historical document reviews, windshield tours, and community member and partner interviews. RESULTS: The five themes reflecting the triangulation of data were: "they don't care" (i.e., the university and community decision-makers), "sense of mistrust," "unconducive environment," "diminished sense of community," and "wrong side of the tracks." These results suggest feelings of ineffective communication, consistently overlooked racial tension, a lack of willingness to understand, and impoverished environments as primary contributors to the persistence of health disparity. The poor health in the communities surrounding the OUHSC cannot be remedied by the availability of allied health programs alone but require relationship building, listening, and mobilizing the community.

Early childrearing practices and their relationship to academic performance in Mexican American children.

PURPOSE: To examine whether parenting behaviors and childrearing practices in the first 3 years of life among Mexican American (MA) families predict children's academic performance at school age. METHODS: Thirty-six children were assessed using the Parent Behavior Checklist, Nursing Child Assessment Teaching Scale, Home Observation for Measurement of the Environment Inventory, and Bayley Scales of Infant Development II. Academic performance was measured with the Illinois Standards Achievement Test during third grade. RESULTS: Correlation between parents' developmental expectations, nurturing behaviors, discipline, and academic performance were statistically significant (P < .05). Developmental expectations and discipline strategies predicted 30% of the variance in the Illinois Standards Achievement Test of reading. CONCLUSIONS: The results of this study suggest that early developmental expectations that MA parents have for their children, and the nurturing and discipline behaviors they engage in, are related to how well the children perform on academic tests at school age.

Art-based occupation group reduces parent anxiety in the neonatal intensive care unit: a mixed-methods study.

OBJECTIVE: We examined whether an art-based occupation group using scrapbooking in the neonatal intensive care unit (NICU) would reduce parent stress, operationalized as anxiety. We also wanted to understand the parents' lived experience of the group. METHOD: Forty parents from a Level 3 NICU in a large metropolitan hospital participated. We administered the State-Trait Anxiety Inventory preactivity and postactivity along with a brief interview. RESULTS: The decline in parents' mean state anxiety (12.7 points, SD = 11.8; p < .0001) was clinically significant. The decline in mean trait anxiety (2.6 points, SD = 5.2; p = .0036) was statistically significant but not clinically meaningful. Parents said that participation offered distraction and engagement, pleasure, relaxation, a sense of hope, and an opportunity to share. CONCLUSION: An art-based occupation group using scrapbooking was an effective brief intervention to reduce parent anxiety in the neonatal intensive care unit; parent interviews suggested that participation has broad clinical implications for parent well-being.

How did the television get in the child's bedroom? Analysis of family interviews.

OBJECTIVE: Although recent research has shown associations between a television in the bedroom of children (BTV) and obesity, medical and negative societal consequences, the family decision making process supporting or opposing BTV is not yet understood. A qualitative research approach elicited rich, decision making experiences of families. METHODS: Structured family interviews (n=21) in spring 2011 in Oklahoma City captured direct quotations about family beliefs and practices related to BTV. Systematic constant comparative methods of grounded theory guided identification of patterns and themes across families to develop a model of family decision making for BTV. RESULTS: Nine themes represented family decision making processes for BTV. Supporting themes included "I didn't even think about it" and "benefit to me." Opposing themes included: "watch a lot more TV and get less sleep," "bedroom door would probably be closed a lot," "everyone knows it rots your brain," and "what the heck are they watching." CONCLUSIONS: Development of a conceptual model represented the basis for decisions opposing BTV in child concerns for development and missed opportunities while decisions supporting BTV reflected its use as a parenting tool. The emerged model could be useful in guiding strategies to modify family routines and address active and passive parenting strategies that negatively affect child health.

An investigation of the family practicum experience. Family and student perspectives.

Professional occupational therapy (OT) and physical therapy (PT) programs traditionally instruct students using volunteers, including children who have disabilities. Presenting a child before a classroom of students may deprive the child of dignity and may limit students' understanding of the child's disability and the importance of family-centered service delivery. An alternative approach that respects the child's privacy and promotes dignity is student observation in the context of the child's daily living. The Family Practicum Intervention Plan assignment (FPIP), part of the professional Neuro Rehab course, was created to facilitate students' understanding of a child with a disability while maintaining child dignity and family-centered values. This descriptive study explored, through two online surveys, the experiences of the OT and PT students and the families of children who participated in the FPIP. Additionally, the study investigated the influences of this participation on students' perceptions of family life and views of childhood disability. Overall, students and families perceived this assignment to be a good learning experience because it allowed the student to work within a real-life scenario and it gave the families an expert "voice" in the education of OT and PT students. The positive comments provided by the families and students and the desire of families to recommend the FPIP experience to other families suggest the value of the learning assignment. When developing OT and PT professional pediatric coursework, instructors should include assignments that take place in the child's natural environment to offer meaningful learning that maintains the dignity of the child.

A service learning is a perfect fit for occupational and physical therapy education.

Service learning provides invaluable contributions to the education of occupational and physical therapy students by allowing them to contribute to the community while simultaneously optimizing their professional preparation. This report explores the application of five principles in occupational and physical therapy service-learning experiences: placement quality, application between classroom and community, reflection, diversity, and listening to the community's voice.

The everyday occupation of families with children with autism.

The purpose of this qualitative research study was to understand a family's experiences negotiating family daily life and the meanings they ascribed to these experiences when they had a child with severe autism. In-depth, semistructured interviews were conducted with five family units. The interviews explored the meaning of the family's participation in daily life activities. The transcribed interviews were analyzed with a phenomenological method. The results emerging from this study indicate that families with children with severe autism may experience difficulty engaging in daily activities that hold positive meaning and rely on stringent patterns of routines that revolve around the child with autism to meet the demands of daily life.