Sensory-Based Approaches in Intervention for Children With Autism Spectrum Disorder: Influences on Occupational Therapists' Recommendations and Perceived Benefits.

OBJECTIVE: We investigated factors that influenced occupational therapists' beliefs about and use of sensory-based approaches for children with autism spectrum disorder (ASD). METHOD: Occupational therapists working with children with ASD (N = 211 from 16 countries) completed an online survey addressing their work experience, training, use of sensory-based approaches, and beliefs and perceptions about the effects of the approaches. Linear regression was used to determine predictors of use of and beliefs about sensory-based approaches. RESULTS: Most respondents (98%) used sensory-based approaches for children with ASD and would recommend the approaches for 57% of the children they treated. Having a mentor who promoted sensory-based approaches and practicing outside North America and Australia predicted greater use and perceived effectiveness of these approaches. Less than 5 yr of occupational therapy experience predicted less use of the approaches. CONCLUSION: Respondents selectively used sensory-based approaches for children with ASD and were influenced by country of residence, clinical experience, and mentorship.

Transition Intervention for Adolescents With Congenital Heart Disease.

BACKGROUND: There is little evidence regarding the efficacy of interventions to prepare adolescents with congenital heart disease (CHD) to enter adult care. OBJECTIVES: The goal of this study was to evaluate the impact of a nurse-led transition intervention on lapses between pediatric and adult care. METHODS: A cluster randomized clinical trial was conducted of a nurse-led transition intervention for 16- to 17-year-olds with moderate or complex CHD versus usual care. The intervention group received two 1-h individualized sessions targeting CHD education and self-management skills. The primary outcome was excess time to adult CHD care, defined as the interval between the final pediatric and first adult cardiology appointments, minus the recommended time interval, analyzed by using Cox proportional hazards regression accounting for clustering. Secondary outcomes included scores on the MyHeart CHD knowledge survey and the Transition Readiness Assessment Questionnaire. RESULTS: A total of 121 participants were randomized to receive the intervention (n = 58) or usual care (n = 63). At the recommended time of first adult appointment (excess time = 0), intervention participants were 1.8 times more likely to have their appointment within 1 month (95% confidence interval: 1.1 to 2.9; Cox regression, p = 0.018). This hazard increased with time; at an excess time of 6 months, intervention participants were 3.0 times more likely to have an appointment within 1 month (95% confidence interval: 1.1 to 8.3). The intervention group had higher scores at 1, 6, 12, and 18 months on the MyHeart knowledge survey (mixed models, p < 0.001) and the Transition Readiness Assessment Questionnaire self-management index (mixed models, p = 0.032). CONCLUSIONS: A nurse-led intervention reduced the likelihood of a delay in adult CHD care and improved CHD knowledge and self-management skills. (Congenital Heart Adolescents Participating in Transition Evaluation Research [CHAPTER 2]; NCT01723332).

Longitudinal patterns of early development in Canadian late preterm infants: A prospective cohort study.

This prospective, longitudinal cohort study examined longitudinal patterns of early development in Canadian children born late preterm. A convenience sample of 82 mothers and their healthy, singleton, late preterm children participated. Mothers completed the Ages and Stages Questionnaires at 4, 8, and 18 months corrected age. Concerns were most commonly reported in the communication and gross motor domains, especially early in development. The proportion of children scoring below the referral cut-off in at least one domain at 4, 8, and 18 months was, respectively, 25.6, 25.6, and 14.6%. Only two children (2.4%) scored below referral cut-off in at least one domain at all three time points. At ages four and eight months, the late preterm sample had significantly lower communication and gross motor scores than the Ages and Stages Questionnaires normative sample. At age four months, there was also a significant difference on the fine motor domain. There were no significant differences at age 18 months. Healthy late preterm children appear to catch up to population norms by age 18 months corrected age. Longer term studies are needed to further clarify early indicators of delay in late preterm children and identity those who require close developmental monitoring.

Parenting stress and development of late preterm infants at 4 months corrected age.

Parenting stress has been linked to child development issues in early preterm infants, but less is known about its effects on development in infants born late preterm. We examined relationships between parenting stress of 108 mothers and 108 fathers and development of late preterm infants born at 34 0/7 to 36 6/7 weeks gestation. At 4 months corrected age, mothers and fathers completed the Parenting Stress Index (PSI-3); mothers were primary caregivers in almost all families and completed the Ages and Stages Questionnaire (ASQ-2) on child development. Mothers reported significantly more stress than fathers on the PSI-3 Parent Domain. PSI-3 subscale scores from the Child Domain were significant predictors of mother-reported infant development as measured by the ASQ-2 in regression models: Reinforces Parent predicted Gross Motor, Mood predicted Communication, and Acceptability predicted Communication, Fine Motor, Problem Solving, and Personal -Social development scale scores. Experiences of parenting stress differed for mothers and fathers. Further research is required on specific dimensions of parenting stress related to development of late preterm infants.

Stakeholders' perspectives on social participation in preschool children with Autism Spectrum Disorder.

OBJECTIVE: To determine (a) the essential components of social participation for preschool children with Autism Spectrum Disorder (ASD) using stakeholders' perspectives and (b) the facilitators and barriers experienced in promoting social participation. METHODS: A mixed-methods, web-based survey utilizing the International Classification of Functioning, Disability and Health - Child and Youth version (ICF-CY) taxonomy was circulated across Canada through purposeful snowball sampling. RESULTS: Frequency analysis of the combined responses of 74 stakeholders revealed the most essential components of social participation were: (a) behavior management, (b) social interactions, and (c) various types of play. Further, content analysis revealed that stakeholders used intrinsic motivation strategies and contingency management to facilitate social participation. CONCLUSION: Stakeholders reported that the purpose of social participation was to engage the child in fun, enjoyable social activities that developed relationships between the child and peers and created a sense of belonging in the community.

Equine-Assisted Occupational Therapy: Increasing Engagement for Children With Autism Spectrum Disorder.

Engagement in meaningful activities is essential to development and is often reduced in children with autism spectrum disorder (ASD) who have limited engagement in activities or relationships. A multiple-baseline design was used with 7 children with ASD ages 4-8 yr to assess the effect of including a horse in occupational therapy intervention on task engagement. The children showed improvements in engagement. Including horses in occupational therapy sessions may be a valuable addition to conventional treatments to increase task engagement of children with ASD. Factors related to the environment, therapeutic strategies, and individual participation need to be considered in understanding why this intervention may be effective and developing a theoretical basis for implementation.

Risk of developmental delay: Comparison of late preterm and full term Canadian infants at age 12 months.

BACKGROUND: Late preterm (34(0/7) to 36(6/7)weeks gestation) infants may experience developmental delays greater than those found in term (≥ 37(0/7)weeks gestation) infants. AIM: The aim of this study was to compare the risk of developmental delay between late preterm and full-term Canadian born infants at age 12months, and to determine infant and maternal factors associated with risk of delay. METHODS: A descriptive comparative study was conducted from data available from the All Our Babies community-based, prospective, pregnancy cohort in Calgary, Alberta. Participants were a sample of mothers of 52 infants born late preterm and 156 randomly selected mothers of term infants, matched for infant sex; eligible infants were singleton births. Mothers completed a developmental screening tool, the Ages and Stages Questionnaire, version 3 (ASQ-3), when their infant was age 12months. Corrected age (CA) was used for preterm infants. RESULTS: Both late preterm and term infants who required neonatal intensive care (NICU) were more likely to demonstrate risk of developmental delay. Compared to term infants, there was a trend for late preterm infants to be at risk of communication and gross motor delay at age 12months CA that was attenuated to the null when adjustments were made for NICU admission and other covariates. CONCLUSIONS: Infants born between 34 and 41weeks who are admitted to NICU are at increased risk of developmental delay. Early identification of risk provides an opportunity for referral for developmental assessment and early intervention programming.

A cluster randomized trial of a transition intervention for adolescents with congenital heart disease: rationale and design of the CHAPTER 2 study.

BACKGROUND: The population of adolescents and young adults with congenital heart disease (CHD) is growing exponentially. These survivors are at risk of late cardiac complications and require lifelong cardiology care. However, there is a paucity of data on how to prepare adolescents to assume responsibility for their health and function within the adult health care system. Evidence-based transition strategies are required. METHODS: The Congenital Heart Adolescents Participating in Transition Evaluation Research (CHAPTER 2) Study is a two-site cluster randomized clinical trial designed to evaluate the efficacy of a nurse-led transition intervention for 16-17 year olds with moderate or complex CHD. The primary endpoint is excess time to adult CHD care, defined as the time interval between the final pediatric cardiology appointment and the first adult CHD appointment, minus the recommended time interval between these appointments. Secondary endpoints include the MyHeart score (CHD knowledge), Transition Readiness Assessment Questionnaire score, and need for catheter or surgical re-intervention. Participants are enrolled in clusters based on week of attendance in the pediatric cardiology clinic. The intervention consists of two one-hour individualized sessions between a cardiology nurse and study participant. Session One focuses on knowledge of the participant's CHD, review of their cardiac anatomy and prior interventions, and potential late cardiac complications. Session Two focuses on self-management and communication skills through review and discussion of videos and role-play. The study will recruit 120 participants. DISCUSSION: Many adolescents and young adults experience a gap in care predisposing them to late cardiac complications. The CHAPTER 2 Study will investigate the impact of a nurse-led transition intervention among adolescents with CHD. Fidelity of the intervention is a major focus and priority. This study will build on our experience by (i) enrolling at two tertiary care programs, (ii) including a self-management intervention component, and (iii) evaluating the impact of the intervention on time to ACHD care, a clinically relevant outcome. The results of this study will inform pediatric cardiology programs, patients and policy makers in judging whether a structured intervention program provides clinically meaningful outcomes for adolescents and young adults living with CHD. TRIAL REGISTRATION: ClinicalTrials.gov ID NCT01723332.

Enabling 2-Wheeled Cycling for Youth With Down Syndrome.

PURPOSE: To study the effectiveness of cognitive orientation to daily occupational performance (CO-OP) to teach motor skills to youth with intellectual disabilities. METHODS: Six youth aged 12 to 19 years participated in this study. A multiple baseline design was employed to evaluate distance and time cycled, and a pre-post-follow-up design was used to evaluate the effect on cycling skills mastered, cycling performance, and parent satisfaction. RESULTS: At follow-up, 5 of the 6 youth rode their 2-wheeled bicycles over 100 m in their communities (range, 103-1400 m) and demonstrated improved cycling skills and parent satisfaction. CONCLUSIONS: The skills acquired by youth with Down syndrome using a CO-OP approach exceeded what has been reported in the literature. CO-OP offers a promising alternative to existing approaches for teaching 2-wheeled cycling to youth with Down syndrome.

Playfulness in Children with Limited Motor Abilities When Using a Robot.

AIMS: Children with limited gross motor and manual abilities have fewer opportunities to engage in free play. We investigated the effect of a robotic intervention on the playfulness of children with cerebral palsy (CP). METHODS: We used a partially nonconcurrent multiple baseline design with four children and their mothers. Children were classified in level IV or V on the Gross Motor Function and Manual Ability Classification Systems. The intervention was the availability of an adapted Lego robot during a 15-min free play session between the child and mother. There were two sessions per week for about 14 weeks. Playfulness was measured using the Test of Playfulness. RESULTS: Statistical comparisons using the 2 SD band and X-moving range chart methods revealed that all the children's levels of playfulness increased significantly while they played with the robot. Comparison of baseline and follow-up phase indicated that three children had retention of improved level of playfulness. CONCLUSION: Play with adapted Lego robots increased the level of playfulness in all four children during free play with their mothers. The findings have implications for providing children with limitations in motor abilities opportunities for free play with family and friends.

Psychosocial Maturity, Autonomy, and Transition Readiness among Young Adults with Congenital Heart Disease or a Heart Transplant.

OBJECTIVE: The population of young adults with congenital heart disease (CHD) or a heart transplant (HTx) is growing rapidly. These survivors require lifelong cardiology care and must assume self-management responsibilities with respect to their health. Accordingly, we sought to assess psychosocial maturity and validity of the Transition Readiness Assessment Questionnaire (TRAQ) in this population. DESIGN: The study was designed as a cross-sectional observational study. SETTING: The study was set at tertiary-care pediatric and adult cardiology clinics in Edmonton and Toronto, Canada. PATIENTS: The patients were 18- to 25-year-olds with moderate or complex CHD or a HTx in childhood. OUTCOME MEASURES: Participants completed validated instruments including the TRAQ, Erickson's Psychosocial Stage Inventory (EPSI), and Kenny's Parental Attachment Questionnaire (PAQ). RESULTS: We enrolled 188 participants (41% women), 109 (58%) having moderate CHD, 64 (34%) complex CHD, and 15 (8%) with a HTx. Mean age for those followed in a pediatric clinic was 21.3 ± 2.3 years, compared with 21.8 ± 2.3 years for those attending an adult clinic (P = 0.20). All questionnaire scores were similar among participants with moderate CHD vs. complex CHD vs. an HTx, and among participants followed in a pediatric clinic vs. an adult clinic. EPSI and PAQ scores were similar to those of healthy populations, though perception of maternal overprotection was common. TRAQ scores increased with age. A response of "not needed for my care" to 5 or more of the 29 TRAQ items was provided by 110 (75%) participants. CONCLUSIONS: Age, but not disease severity should be a factor when considering the transition needs of young adults with heart disease. The TRAQ has important limitations in the adult CHD/HTx population and a cardiac-specific measure of transition readiness is needed.

Parental mediation of television viewing and videogaming of adolescents with autism spectrum disorder and their siblings.

Adolescents with autism spectrum disorder spend considerable time in media activities. Parents play an important role in shaping adolescents' responses to media. This study explored the mediation strategies that parents of adolescents with autism spectrum disorder used to manage television and video game use, factors associated with their use of different strategies, and whether mediation strategies changed over time. A secondary purpose was to examine whether parents applied different mediation strategies to adolescents with autism spectrum disorder versus siblings, and the factors that created stress related to managing media use. Parents of 29 adolescents with autism spectrum disorder and 16 siblings completed questionnaires at two time points. Parents most frequently supervised their television viewing by watching it with the adolescents, and used restrictive strategies to regulate their videogaming. Parents used similar strategies for siblings, but more frequently applied restrictive and instructive strategies for videogaming with adolescents with autism spectrum disorder than their siblings. Restrictive mediation of television viewing for the adolescents decreased significantly over the year. Adolescents' time spent in media activities, age, and behavior problems, and parents' concerns about media use were significant factors associated with the strategies that parents employed. Parents' stress related to the adolescents' behavioral and emotional responses to parental restrictions.

Through the eyes of a new dad: experiences of first-time fathers of late-preterm infants.

Fathers of late-preterm (34-36 weeks' gestation) infants may experience challenges in parenting. Late-preterm infants are more irritable and less responsive in interactions. The unexpected early birth of an infant may negatively affect fathers' cognitive and emotional experiences. The Father-Infant Interaction Program (FIIP) is a video-modeled play intervention that aims to increase fathers' sensitivity and responsiveness to infant cues. Using data from a larger randomized controlled trial (RCT) to evaluate FIIP, the purpose of the present study was to explore the experiences of first-time fathers of late-preterm infants and their perceptions of the intervention. We conducted semistructured qualitative interviews with 85 fathers of 8-month-old infants during the outcome home visit for the RCT and thematically analyzed data. Three main themes about fathers' experiences emerged: Fathers believed they had the "best job in the world," yet saw fathering as the "biggest job ever." Fathers viewed fatherhood as an opportunity for personal growth and reflected on how their lives had changed since the arrival of their infant. Fathers in the intervention and comparison groups liked the convenience of the home visits and validation of their role as a father. Fathers in the intervention group liked the tailored feedback about play.

Texting teens in transition: the use of text messages in clinical intervention research.

BACKGROUND: The rapidly growing population of young adults living with congenital heart disease (CHD), currently challenging ill-prepared cardiac care systems, presents a novel population in which to consider the use of mHealth. This methodological study was part of a larger study that tested the effectiveness of a clinic-based nursing intervention to prepare teens for transfer from pediatric to adult cardiology care. The intervention included creation of a MyHealth Passport and subsequently SMS (short message service) text messages between the intervention nurse and study participant. OBJECTIVE: Our aim was to determine (1) the preference of teens with CHD to be contacted via text message following the nursing intervention, (2) the effectiveness of texting to collect data regarding the use of MyHealth Passport after participation in the intervention, (3) the nature of the texting interaction, and (4) the risks and benefits of texting. METHODS: Participants were recruited through the intervention study (n=24) by either choosing to receive information from the study coordinator through text message, or texting a question to the study nurses. Inclusion criteria were age 15-17 years, diagnosed with moderate or complex heart disease, and currently being followed by the Division of Cardiology at Stollery Children's Hospital. Exclusion criteria were heart transplantation and/or less than a 6th grade reading and comprehension ability. Text message transcripts were analyzed by qualitative inductive content analysis. RESULTS: Two-thirds of teens (16/24, 67%) chose text messaging as their preferred contact, making them eligible for the study. Texting was effective in collecting information regarding the MyHealth Passport; all but one teen had their MyHealth Passport on them, and many reported carrying it with them wherever they went. All teens reported showing their MyHealth Passport to at least one person. Seven themes were identified in the texting transcripts: mixing formal and informal language, the passive teen, interaction with health care providers, texting teens in transition, texting as a mechanism to initiate other forms of communication, affirmation, and the nurse as an educator. Benefits of texting were identified as flexibility, ability to respond over time, information presented in byte-sized amounts, and information directly related to patient questions. Risks of texting were identified as the possibility that interactions may not be in-depth, distraction of teen and researcher, and invasiveness. CONCLUSIONS: Text messaging was useful in collecting data regarding the use of the MyHealth Passport. Text messaging resulted in conversations with the teens that were sometimes in-depth and meaningful, especially when combined with other communication modalities. Using text messaging in a manner resulting in full conversations with the patients requires more study and may benefit from protocols and the use of solid theoretical foundations that would standardize the interaction so that more conclusions could be drawn.

Healthcare transition for youth with heart disease: a clinical trial.

OBJECTIVES: Adolescents with heart disease have complex health needs and require lifelong cardiology follow-up. Interventions to facilitate paediatric to adult healthcare transition are recommended, although outcomes are unknown. We sought to determine the impact of a transition intervention on improving knowledge and self-management skills among this population. METHODS: We conducted a clinical trial of 15-17 year olds with moderate or complex congenital heart disease (CHD) or cardiomyopathy. Participants were systematically allocated to either usual care (controls) or a 1 h nurse-led one-on-one teaching session about their heart. Allocation was determined by week of attendance in the cardiology clinic. The primary outcome was change in Transition Readiness Assessment Questionnaire (TRAQ) score at 6 months, possible scores ranging from 1 (low) to 5 (optimal). Cardiac knowledge (MyHeart score, range 0-100) was a secondary outcome. Analysis was intention to treat. RESULTS: Of 58 participants (48% female), 52 had CHD and 6 had cardiomyopathy. 27 were allocated to the intervention group; 3 declined the intervention and received usual care. When comparing the intervention group with the usual care group at 6 months postintervention, the mean self-management TRAQ score was 3.59 (±0.83) vs. 3.16 (±1.05), respectively (p=0.048, adjusted for baseline score); the mean self-advocacy TRAQ score was 4.38 (±0.56) vs. 4.01 (±0.95) (p=0.18) and the mean MyHeart score was 75% (±15) vs. 61% (±25) (p=0.019). CONCLUSIONS: A 1 h nurse-led transition intervention resulted in a significant improvement in self-management and cardiac knowledge scores. An educational intervention should be routine for youth with congenital or acquired heart disease. TRIAL REGISTRATION NUMBER: NCT01286480.

Stability of parent report on Mobility and Self-Care item scores of the Pediatric Evaluation of Disability Inventory.

Secondary analysis using data from a clinical trial was performed to evaluate the stability of individual items of the Mobility and Self-Care functional skills scales of the Pediatric Evaluation of Disability Inventory (PEDI). Parents of 113 children aged 1-6 years old with cerebral palsy completed the PEDI twice by questionnaire 6 months apart. An item was classified "unstable" if the score changed from capable to unable. The number of children with more than five unstable items and the number of items with more than five children having unstable scoring patterns were calculated. Nineteen children (17%) and 13 items had unstable scoring patterns. The majority of PEDI items demonstrated stability of parent scoring. Examination of unstable items suggests that parents may need assistance in understanding the difference between "usual" and "best" performance, interpreting descriptors such as "thoroughly," and maintaining the same context reference for outdoor mobility items.

Key components of early intervention programs for preterm infants and their parents: a systematic review and meta-analysis.

BACKGROUND: Preterm infants are at greater risk for neurodevelopmental disabilities than full term infants. Interventions supporting parents to improve the quality of the infant's environment should improve developmental outcomes for preterm infants. Many interventions that involve parents do not measure parental change, nor is it clear which intervention components are associated with improved parental outcomes. The aim of this review was to categorize the key components of early intervention programs and determine the direct effects of components on parents, as well as their preterm infants. METHODS: MEDLINE, EMBASE, CINAHL, ERIC, and Cochrane Database of Systematic Reviews were searched between 1990 and December 2011. Eligible randomized controlled trials (RCTs) included an early intervention for preterm infants, involved parents, and had a community component. Of 2465 titles and abstracts identified, 254 full text articles were screened, and 18 met inclusion criteria. Eleven of these studies reported maternal outcomes of stress, anxiety, depressive symptoms, self-efficacy, and sensitivity/responsiveness in interactions with the infant. Meta-analyses using a random effects model were conducted with these 11 studies. RESULTS: Interventions employed multiple components categorized as (a) psychosocial support, (b) parent education, and/or (c) therapeutic developmental interventions targeting the infant. All interventions used some form of parenting education. The reporting quality of most trials was adequate, and the risk of bias was low based on the Cochrane Collaboration tool. Meta-analyses demonstrated limited effects of interventions on maternal stress (Z = 0.40, p = 0.69) and sensitivity/responsiveness (Z = 1.84, p = 0.07). There were positive pooled effects of interventions on maternal anxiety (Z = 2.54, p = 0.01), depressive symptoms (Z = 4.04, p <.0001), and self-efficacy (Z = 2.05, p = 0.04). CONCLUSIONS: Positive and clinically meaningful effects of early interventions were seen in some psychosocial aspects of mothers of preterm infants. This review was limited by the heterogeneity of outcome measures and inadequate reporting of statistics. IMPLICATIONS OF KEY FINDINGS: Interventions for preterm infants and their mothers should consider including psychosocial support for mothers. If the intervention involves mothers, outcomes for both mothers and preterm infants should be measured to better understand the mechanisms for change.

Parenting under pressure: a grounded theory of parenting young children with life-threatening congenital heart disease.

AIM: To report a grounded theory study to describe the process of parenting young children who have survived hypoplastic left heart syndrome to inform parent-focused interventions. BACKGROUND: Technological advances in paediatric cardiology worldwide have improved the survival rates for young children with hypoplastic left heart syndrome who undergo staged surgical palliation. These children, however, are at risk for life-threatening complications and parents are charged with the responsibility to monitor their children at home with minimal support and guidance from healthcare professionals once home. DESIGN: A constructivist grounded theory study. METHOD: The study was conducted in 2006-2008. Participants were 25 parents (15 mothers, 10 fathers) and 28 grandparents (17 grandmothers, 11 grandfathers) of 15 young children (6 months-4·5 years) who had undergone the Sano surgical approach for hypoplastic left heart syndrome. The 53 interviews were digitally recorded, transcribed and analysed using open and focused coding, constant comparative analysis and memoing. FINDINGS: A process of Parenting under Pressure emerged that was characterized by four overlapping and re-emerging phases: (1) realizing and adjusting to the inconceivable; (2) growing increasingly attached; (3) watching for and accommodating the unexpected; and (4) encountering new challenges. CONCLUSIONS: In-depth understanding of the phases of Parenting under Pressure provides direction for nurses to support parents of children who survive hypoplastic left heart syndrome. Interventions that help carers of children with complex health conditions move through the phases of our Parenting under Pressure process may help them safeguard the survival of their children, and their own survival as parents as they manage multiple demands.

"It's no big deal": adolescents with congenital heart disease.

Improved survival rates for congenital heart disease (CHD) have increasing numbers requiring lifelong specialized health care. In this interpretive description, interview data were analyzed to understand how adolescents with CHD describe everyday life and relate to questions about quality of life. Most viewed themselves as normal, their CHD something that they situated into the foreground or background of their lives as it suited their needs. They spoke of quality-of-life issues in a concrete manner focusing on physical activity limitations and their need to fit in. These findings can direct interventions for adolescents with CHD for transition to adulthood.