'Our time is precious': An exploration of parental feeding behaviours for boys with Duchenne muscular dystrophy.

INTRODUCTION: Due to the increased risk of obesity for boys with Duchenne muscular dystrophy (DMD), recent guidelines recommend that dietary intake is carefully managed. Parents play an important role in the development of their child's eating behaviours and patterns. However, despite what is known about the increased risk of obesity for children with DMD, little is known about parental feeding behaviours in this population. The objective of this study was to qualitatively explore the experiences of parents of children with DMD around their child's weight management and understand what influences their feeding behaviours. METHODS: This paper reports a secondary data analysis. Semi-structured, individual interviews were conducted and analysed using qualitative description. RESULTS: Thirteen parents were interviewed for the study. Three themes were developed: (1) parent responses to healthcare provider interactions, (2) mixed emotions contributing to feeding approach and (3) variable parenting feeding styles. Within the third theme, two subthemes arose including (1) control and preoccupation and (2) striking a balance. CONCLUSION: Given the potential impact of higher weights on the progression of DMD, it is important that healthcare providers explore feeding behaviours with families. However, it is essential that healthcare providers consider the impact of these conversations on parents, as well as the broader issues that may place additional pressure on the lives of families.

Utilizing an Environmental Framework to Explore the Acceptability of a Health Promotion Program for Youth with Disabilities.

This study explored the acceptability of Children and Teens in Charge of their Health (CATCH), a program for children with spina bifida or cerebral palsy to enhance their physical activity and diet. Qualitative interviews were conducted with children (n = 6) and their parents (n = 6) who participated in CATCH. Analysis used an environmental systems framework. Microsystem factors impacting acceptability of the program were: Children's motivations for change, their age, and their physical health. Mesosystem factors were: Use of virtual coaching and the relationship between coach and child. Macrosystem factors (e.g. Covid-19), did not impact acceptability, but affected some goal attainment strategies. CATCH was broadly acceptable to children and parents and shows promise as a health promotion program tailored to children with disabilities. An environmental systems framework can potentially help other health promotion programs enhance their acceptability and success.

A qualitative exploration of the priorities and experiences of children with Duchenne muscular dystrophy, their parents, and healthcare professionals around weight management.

PURPOSE: The quality and length of life for boys with Duchenne muscular dystrophy (DMD) has improved due to medical advancements, but obesity has emerged as and may pose a risk to their physical health. Clinical guidelines recommend attention to weight management, but healthcare professionals (HCPs) find implementing them in clinical care challenging. Little information is available about the perspectives of children with DMD and their families around weight management. This study explored the key priorities of children with DMD, their parents, and HCPs who treat them, around weight management. METHODS: Qualitative, individual, semi-structured interviews were conducted and analyzed using a qualitative descriptive approach. RESULTS: Participants included parents of children with DMD (n = 13), children with DMD (n = 10), and HCPs (n = 14). Theme one: "Competing priorities between healthcare providers, parents, and boys" contained two sub-themes: (i) Body mechanics and function; and (ii) Psychosocial well-being. Theme two: "The realities of living with Duchenne's Muscular Dystrophy," with subthemes: (i) Striving for normality; (ii) The trajectory of DMD; (iii) The labour associated with DMD. CONCLUSION: HCPs, parents, and boys have diverging worldviews around weight management, highlighting the importance of integrating the priorities of families into care, even when not aligned with guideline recommendations.IMPLICATIONS FOR REHABILITATIONHCPs must understand the competing priorities in the lives of children with DMD and their families when discussing weight, weight management, and lifestyle changes.Quality of life and living a "normal" life are prioritized by children and families over the surveillance and time demands of lifestyle routines recommended by clinicians for weight management.Weight management recommendations should be based upon the individual needs and priorities of the family.

Growth assessment and weight management in paediatric neuromuscular clinics: a cross-sectional survey across Canada.

PURPOSE: To identify current practices related to the assessment, monitoring and discussion of bodyweight, growth and obesity in neuromuscular clinics for children with Duchenne muscular dystrophy (DMD). METHODS: A cross-sectional, online survey was distributed using snowball sampling to healthcare providers working with children with DMD across Canadian neuromuscular clinics. Summary and descriptive statistics were calculated. Content analysis was performed on open text responses. RESULTS: Thirty-seven responses were received, representing a range of healthcare disciplines. Height and weight were routinely assessed by 32/37 (87%) respondents, although only 21/37 (57%) responses reported having a clinic standard for measuring height and 23/37 (62%) for weight. While 32/36 (89%) reported discussing weight during consultations, only 13/37 (35%) felt confident doing so. Dietitians were considered the most appropriate person to discuss and manage weight with children and families, although only 17/37 (46%) reported having a dietitian involved in their clinic. CONCLUSIONS: Neuromuscular clinics could benefit from implementing consistent and recommended growth assessment practices. The development of evidence-based tools, training and protocols tailored to Duchenne muscular dystrophy should be a priority.IMPLICATIONS FOR REHABILITATIONGrowth and weight monitoring approaches vary within and between neuromuscular clinics.Additional training on discussing and managing weight are warranted across disciplines.Advocacy is required to ensure access to dietetic expertise within neuromuscular clinics.

Children and Teens in Charge of their Health (CATCH): A protocol for a feasibility randomised controlled trial of solution-focused coaching to foster healthy lifestyles in childhood disability.

INTRODUCTION: Children with physical disabilities are rarely included in interventions to promote healthy lifestyles, despite being at higher risk for suboptimal dietary and physical activity behaviours. The Children and Teens in Charge of their Health study explores the feasibility and acceptability of conducting a randomised controlled trial (RCT) of a strengths-based, solution-focused coaching intervention for improving and sustaining physical activity and healthy dietary habits in children and young people with physical disabilities. METHODS AND ANALYSIS: Thirty children aged 10-18 years with a diagnosis of spina bifida or cerebral palsy who are able to set healthy lifestyle goals will be recruited from two children's rehabilitation hospitals in Ontario, Canada. Participants will be enrolled in the study for twelve months. All participants will receive standard care and printed information about healthy lifestyles. Of the 30 participants, 15 will be randomised to receive a coaching intervention for the first 6 months. Health indicators and psychosocial outcomes will be assessed by blinded assessors four times: at the start of the trial, immediately postintervention (6 months after randomisation), and at 3 and 6 months postintervention (9 and 12 months after randomisation, respectively). Predefined success criteria will be used to assess the feasibility of trial processes such as recruitment, attrition, stratification and intervention fidelity. Acceptability and perceived impact of the intervention will be explored qualitatively. ETHICS AND DISSEMINATION: The study has been approved by Holland Bloorview Kids Rehabilitation Hospital's Research Ethics Board (Ref: 17-752). A knowledge translation planning template will be used to ensure our findings have maximum reach. TRIAL REGISTRATION NUMBER: NCT03523806.

A pilot dose finding study of pioglitazone in autistic children.

Background: Pioglitazone is a promising compound for treatment of core autism spectrum disorder (ASD) symptoms as it targets multiple relevant pathways, including immune system alterations. Objective: This pilot study aimed to elucidate the maximum tolerated dose, safety, preliminary evidence of efficacy, and appropriate outcome measures in autistic children ages 5-12 years old. Methods: We conducted a 16-week prospective cohort, single blind, single arm, 2-week placebo run-in, dose-finding study of pioglitazone. Twenty-five participants completed treatment. A modified dose finding method was used to determine safety and dose response among three dose levels: 0.25 mg/kg, 0.5 mg/kg, and 0.75 mg/kg once daily. Results: Maximum tolerated dose: there were no serious adverse events (SAEs) and as such the maximum tolerated dose within the range tested was 0.75 mg/Kg once daily.Safety: overall, pioglitazone was well tolerated. Two participants discontinued intervention due to perceived non-efficacy and one due to the inability to tolerate interim blood work. Three participants experienced mild neutropenia.Early evidence of efficacy: statistically significant improvement was observed in social withdrawal, repetitive behaviors, and externalizing behaviors as measured by the Aberrant Behavior Checklist (ABC), Child Yale-Brown Obsessive Compulsive Scale (CY-BOCS), and Repetitive Behavior Scale-Revised (RBS-R). Forty-six percent of those enrolled were deemed to be global responders. Conclusions and relevance: Pioglitazone is well-tolerated and shows a potential signal in measures of social withdrawal, repetitive, and externalizing behaviors. Randomized controlled trials using the confirmed dose are warranted. Trial registration: ClinicalTrials.gov, NCT01205282. Registration date: September 20, 2010.

A randomized, placebo controlled trial of omega-3 fatty acids in the treatment of young children with autism.

BACKGROUND: Autism spectrum disorder (ASD) is a neurodevelopmental disorder affecting more than 1% of children. It is characterized by social communication deficits and repetitive behaviors/restricted interests. In the absence of any medications known to improve core symptom domains, parents often use complementary alternative treatments, including omega-3 fatty acid supplements. METHODS: We conducted a 6-month, randomized, placebo controlled trial of omega-3 fatty acid supplements (1.5 g) vs placebo in children 2 to 5 years of age with ASD. Primary outcome measures included the autism composite score of the Pervasive Developmental Disorders Behavioral Inventory (PDDBI) and the externalizing problems score of the Behavior Assessment System for Children (BASC-2). Secondary outcome measures included clinical global improvement (Clinical Global Impression-Improvement (CGI-I)), adaptive function (Vineland Adaptive Behavior Scale (VABS-II)), and language gains (Preschool Language Scale (PLS-4)), as well as safety. Exploratory analysis investigated potential correlations between changes in cytokine profiles and treatment response. RESULTS: Thirty-eight participants were randomized in a 1:1 fashion. There was no significant difference between groups on the 0- to 24-week change in PDDBI autism composite scores (p = 0.5). There was a significant group by week interaction on the BASC-2 externalizing problem score, with participants randomized to the treatment group demonstrating worsening scores (p = 0.02). There was no statistically significant week by group effect on either adaptive function (p = 0.09) or language (p = 0.6). Omega-3s were relatively well tolerated. Changes in cytokines during the study did not significantly correlate with treatment response. CONCLUSIONS: This study does not support high dose supplementation of omega-3 fatty acids in young children with ASD. TRIAL REGISTRATION: Clinicaltrials.gov NCT01248728. Registered 22 November 2010.

Is two a plural marker in early child language?

Is two ever a plural marker in child language? By some accounts, children bootstrap the distinction between the words one and two by observing their use with singular-plural marking (one ball/two balls). Others argue that the numeral two marks plurality before children begin using numerals to denote precise quantities. We tested the relation between numerals and singular-plural marking in English-speaking 2- and 3-year-olds by asking them to label sets of objects. When children were not prompted to use numerals they hardly ever did so, although they did frequently use plural marking. Thus, it does not appear that children spontaneously use numerals like two as plural markers. Also, children who used numerals when labeling sets were significantly more likely to use a plural marker than children who did not use numerals, suggesting that most children view plural marking as obligatory when numerals are used, rather than viewing the 2 forms as alternative markers of plurality. Finally, two was no more likely than other numerals to be used with unmarked nouns (i.e., as an alternative to the plural), suggesting that it does not have a special status as a plural marker. We conclude that two is not a plural marker in early child language.