Adolescent and parental perceptions of the Fontan Udenafil Exercise Longitudinal Assessment Randomised Controlled Trial (FUEL) and its open-label extension were examined, to identify factors affecting future research participation.

A validated survey was administered at two time points to adolescents (12–19 years) and their parents to assess likes/dislikes of study participation, research team, study burden and benefits. A 5-point Likert scale (strongly disagree [−2] to strongly agree [ + 2]) was used, and scores were averaged. Regression models explored potential predictors. Open-ended questions queried the most/least appealing aspects of participation and considerations for future research.

Among 250 FUEL participants at 14 centres, 179 adolescent and 183 parent surveys were completed at T1 (6 months after randomisation). Perceptions of research participation were generally positive: 1.35 ± 0.45 for adolescents; 1.56 ± 0.38 (p < 0.001) for parents. There were no significant differences between females vs. males. Themes from open-ended responses included liking to help others and themselves, liking the study team, and disliking study burden. Adolescents liked the compensation and disliked study-related testing. At T2 (end of open-label extension study), 121 adolescents and 114 parents responded. Perception scores remained high at 1.39 ± 0.51 for adolescents and 1.58 ± 0.37 for parents (p = 0.001). There were no significant gender differences in perceptions between adolescents, but mothers had slightly better perceptions than fathers (p = 0.004).

Perceptions of research were positive and slightly better for parents. Study teams and compensation were key contributors to positive perceptions. Study burden and testing were viewed less favourably. Future studies should consider families’ preferences and potential barriers to participation.

Mothers, particularly those who are breastfeeding, as well as their babies are often overlooked populations during natural disasters. Still, the ever-growing frequency and severity of natural disasters in the United States (US) have increased the likelihood that a breastfeeding family will experience a natural disaster. In 2019, 83% of all newborns received breastmilk, and 84% of Americans lived in an area that recently experienced a natural disaster. This scoping review aimed to identify ways to support breastfeeding women, infants, and young children during a natural disaster.

A search was performed using Embase, Scopus, PubMed, and CINHAL databases to identify articles published in the English language from September 2005—September 2023 according to the Joanna Briggs Institute (JBI). Each article was chosen based on noted inclusion and exclusion criteria. Data were extracted per the pre-prepared protocol.

Ten articles were selected for the scoping review, examining key characteristics and recommendations. The authors of the included articles used varying approaches to present the information, and differing approaches to supporting breastfeeding during disasters were observed. Only 3 of the 10 articles were research studies, 3 were editorials, 2 were program descriptions or evaluations, 1 was an education article, and 1 was a report. All articles addressed women, pregnant or postpartum women, infants, and/or young children. All articles addressed hurricanes, and 1 article addressed 2 disasters: a winter storm and a hurricane.

Recommendations include the adoption of breastfeeding women, infants, and young children in disaster plans as a special population with unique needs, integration of breastfeeding support into disaster plans, and training disaster workers to support breastfeeding during disasters.

Differences in social behaviours are common in young people with neurodevelopmental conditions (NDCs). Recent research challenges the long-standing hypothesis that difficulties in social cognition explain social behaviour differences.

We examined how difficulties regulating one's behaviour, emotions and thoughts to adapt to environmental demands (i.e. dysregulation), alongside social cognition, explain social behaviours across neurodiverse young people.

We analysed cross-sectional behavioural and cognitive data of 646 6- to 18-year-old typically developing young people and those with NDCs from the Province of Ontario Neurodevelopmental Network. Social behaviours and dysregulation were measured by the caregiver-reported Adaptive Behavior Assessment System Social domain and Child Behavior Checklist Dysregulation Profile, respectively. Social cognition was assessed by the Neuropsychological Assessment Affect-Recognition and Theory-of-Mind, Reading the Mind in the Eyes Test, and Sandbox continuous false-belief task scores. We split the sample into training (n = 324) and test (n = 322) sets. We investigated how social cognition and dysregulation explained social behaviours through principal component regression and hierarchical regression in the training set. We tested social cognition-by-dysregulation interactions, and whether dysregulation mediated the social cognition–social behaviours association. We assessed model fits in the test set.

Two social cognition components adequately explained social behaviours (13.88%). Lower dysregulation further explained better social behaviours (β = −0.163, 95% CI −0.191 to −0.134). Social cognition-by-dysregulation interaction was non-significant (β = −0.001, 95% CI −0.023 to 0.021). Dysregulation partially mediated the social cognition–social behaviours association (total effect: 0.544, 95% CI 0.370–0.695). Findings were replicated in the test set.

Self-regulation, beyond social cognition, substantially explains social behaviours across neurodiverse young people.

The Scottish Medicines Consortium (SMC) patient group submission process includes a written submission of patient experience evidence from Patient Group Partners (PGPs). To maximize the relevance and quality of information included in submissions, the first draft is reviewed by the Public Involvement Team and feedback is provided. The submission is then amended by the submitting PGP before final submission.

Upon receiving a new written patient group submission, the Public Involvement Team reviews it and provides feedback highlighting any evidence gaps and areas where wording could be amended to strengthen the patient voice. The draft submission is then amended by the submitting PGP, with support from the SMC reviewer. Once finalized, the submission is collated into the body of evidence used by the SMC Committee members to assess a new medicine. The satisfaction of participating PGPs is continually assessed by an online survey. During the 2021 to 2023 period, the SMC received 232 patient group submissions, with 77 percent being amended and strengthened after receiving feedback.

The feedback and collaboration on amendments to draft submissions has improved the quality of patient experience evidence submitted to the SMC by PGPs. PGPs value their draft evidence being reviewed by the SMC Public Involvement Team prior to final submission. This approach resulted in high levels of trust in and satisfaction with how the SMC involves patient representatives in medicine assessments. In 2022, 89 percent of the 28 PGPs surveyed were very satisfied and 11 percent were satisfied with the support provided during the submission process.

Evaluation of the SMC’s formal process to provide input and feedback on draft written patient group submissions demonstrates high levels of satisfaction with how the SMC works in partnership with PGPs. This approach has strengthened written evidence of patient experiences for SMC assessments. Furthermore, it helps to build and maintain a partnership approach in how the SMC works with PGPs.

Over the past 10 years, the Scottish Medicines Consortium (SMC) has strived to strengthen the involvement of patients and citizens in its work and improve public understanding of health technology appraisal (HTA). A series of innovations have been brought in since 2014 to increase levels of engagement and satisfaction of participants. This work describes these and their impact.

SMC has introduced numerous transformational changes since 2014. Innovations include a new Patient Group Partner (PGP) registration system, strengthened patient group submission process, participation of patient representatives at Patient and Clinician Engagement (PACE) and SMC Committee meetings, embargoed early release of SMC decisions to PGPs, provision of Summary Information for PGPs (from submitting company), and revised role of public representatives. The creation of the SMC Public Involvement Network Advisory Group has underpinned these achievements, as has the provision of comprehensive one-to-one support, information and education to PGPs. SMC has continually evaluated the satisfaction of participating PGPs using an online questionnaire.

There has been a sustained increase over the past 10 years in both the number of patient groups engaging with SMC and the number of PGP submissions that SMC receives. Adopting a continuous improvement approach, working in partnership with PGPs and public representatives, has helped SMC to ensure that stakeholders in the HTA process are effectively engaged and informed about the HTA of new medicines in Scotland. Surveys of public involvement in SMC consistently show an extremely high level of satisfaction from PGPs who work with SMC, with most PGPs consistently rating their experience of working with SMC as excellent.

Over the past 10 years, SMC has strived to strengthen how it involves citizens and patient representatives in HTA. Various innovations and a continuous improvement approach have helped to ensure that there are high levels of satisfaction and understanding of the HTA process from patient groups who engage with SMC. This is underpinned by a partnership approach to working.

Since 2018, the Scottish Medicines Consortium (SMC) has published a plain English summary for each health technology assessment (HTA) decision called Decision Explained (DE). This provides clear information to patients, Patient Group Partners (PGPs), and the public about what SMC’s decisions mean for them. The DE document was evaluated and updated in 2023 to ensure it continues to meet this purpose.

The evaluation consisted of two components. All (186) registered PGPs were invited to complete an online five-question survey focusing on the use of the DE document. This included readership, language, and SMC decision-making transparency. A separate focus group for public representatives took place, discussing design, accessibility, and content. Identical sample DE documents were used for both groups for consistency. Survey responses were collated and analyzed. Focus group responses were analyzed using thematic analysis. The DE document was revised, and the new version was considered for implementation by SMC’s Public Involvement Network Advisory Group.

Survey respondents (n=20) found the DE document helpful or very helpful in improving understanding of SMC advice. Some commented on complex language and information about how the medicine works being irrelevant. The focus group commented on excess information and favored simplified content and structure. Analysis of both sets of research data resulted in several recommended changes. These included the decision statement being moved to the start of the document, the language being simplified, and the section on how a medicine works being removed. Revised documents including these changes were prepared and were reviewed and approved by the SMC’s Public Involvement Network Advisory Group.

Published plain English explanations are helpful for improving patient and public understanding of HTA decisions for new medicines. It is important this information is concise, relevant, and aligned to accessibility good practice. The recent review of the SMC DE documents led to changes that help to ensure they meet the needs of stakeholders.

Neurodevelopmental challenges are the most prevalent comorbidity associated with a diagnosis of critical CHD, and there is a high incidence of gross and fine motor delays noted in early infancy. The frequency of motor delays in hospitalised infants with critical CHD requires close monitoring from developmental therapies (physical therapists, occupational therapists, and speech-language pathologists) to optimise motor development. Currently, minimal literature defines developmental therapists’ role in caring for infants with critical CHD in intensive or acute care hospital units.

This article describes typical infant motor skill development, how the hospital environment and events surrounding early cardiac surgical interventions impact those skills, and how developmental therapists support motor skill acquisition in infants with critical CHD. Recommendations for healthcare professionals and those who provide medical or developmental support in promotion of optimal motor skill development in hospitalised infants with critical CHD are discussed.

Infants with critical CHD requiring neonatal surgical intervention experience interrupted motor skill interactions and developmental trajectories. As part of the interdisciplinary team working in intensive and acute care settings, developmental therapists assess, guide motor intervention, promote optimal motor skill acquisition, and support the infant’s overall development.

Parent and child mental health has suffered during the pandemic and transition phase. Structured and shared parenting may be intervention targets beneficial to families who are struggling with parent or child mental health challenges.

First, we investigated associations between structured and shared parenting and parent depression symptoms. Second, we investigated associations between structured and shared parenting and depression, hyperactivity/inattention and irritability symptoms in children.

A total of 1027 parents in two-parent households (4797 observations total; 85.1% mothers) completed online surveys about themselves and their children (aged 2–18 years) from April 2020 to July 2022. Structured parenting and shared parenting responsibilities were assessed from April 2020 to November 2021. Symptoms of parent depression, child depression, child hyperactivity and inattention, child irritability, and child emotional and conduct problems were assessed repeatedly (one to 14 times; median of four times) from April 2020 to July 2022.

Parents who reported higher levels of shared parenting responsibilities had lower depression symptoms (β = −0.09 to −0.32, all P < 0.01) longitudinally. Parents who reported higher levels of shared parenting responsibilities had children with fewer emotional problems (ages 2–5 years; β = −0.07, P < 0.05), fewer conduct problems (ages 2–5 years; β = −0.09, P < 0.01) and less irritability (ages 13–18 years; β = −0.27, P < 0.001) longitudinally. Structured parenting was associated with fewer conduct problems (ages 2–5 years; β = −0.05, P < 0.05).

Shared parenting is beneficial for parent and child mental health, even under chaotic or inflexible life conditions. Structured parenting is beneficial for younger children.

Lifetime radiation exposure for paediatric orthotopic heart transplant (OHT) patients is significant with cardiac catheterisation as the dominant source. Interventional cardiac magnetic resonance is utilised to obtain simultaneous, radiation-free haemodynamics and flow/function measurements. We sought to compare invasive haemodynamic measurements and radiation exposure in traditional cardiac catheterisation, to comprehensive interventional cardiac magnetic resonance.

Twenty-eight OHT patients who underwent 67 interventional cardiac magnetic resonance procedures at Children’s National Hospital were identified. Both invasive oximetry with peripheral oxygen saturation (Fick) and cardiac magnetic resonance phase contrast measurements of pulmonary and systemic blood flow were performed. Systemic and pulmonary blood flow from the two modalities was compared using Bland–Altman, concordance analysis, and inter-reader correlation. A mixed model was implemented to account for confounding variables and repeat encounters. Radiation dosage data were collected for a contemporaneous cohort of orthotopic heart transplant patients undergoing standard, X-ray-guided catheterisation.

Simultaneous cardiac magnetic resonance and Fick have poor agreement in our study based on Lin’s correlation coefficient of 0.68 and 0.73 for pulmonary and systemic blood flow, respectively. Bland–Altman analysis demonstrated a consistent over estimation of cardiac magnetic resonance cardiac output by Fick. The average indexed dose area product for patients undergoing haemodynamics with endomyocardial biopsy was 0.73 (SD ±0.6) Gy*m2/kg. With coronary angiography added, the indexed dose area product was 14.6 (SD ± 7.8) Gy*m2/kg.

Cardiac magnetic resonancemeasurements of cardiac output/index in paediatric orthotopic heart transplant patients have poor concordance with Fick estimates; however, cardiac magnetic resonance has good internal validity and inter-reader reliability. Radiation doses are small for haemodynamics with biopsy and increase exponentially with angiography, identifying a new target for cardiac magnetic resonance imaging.

The COVID-19 pandemic changed early care and education (ECE) mealtimes. Feeding practices that support children’s emerging autonomy may support children’s healthy eating, but it is unknown whether and how COVID-19 changed feeding practices. This paper describes caregiver feeding practices in ECE centres in Florida during COVID-19.

A mixed-methods design was used to understand mealtime feeding practices. Survey and interview questions were developed based on the Trust Model. More than 7000 surveys were sent to ECE centres. Analysis included descriptive statistics for survey data and thematic analysis for interview data.

This statewide study included teachers in all licensed and license-exempt ECE centres.

Four hundred and thirty-one teachers completed a survey, and twenty-nine participated in follow-up interviews.

Surveys showed most teachers engaged in autonomy-supportive behaviours, such as letting children eat until they were finished (90 %). The most common controlling behaviour was praising children for cleaning their plates (70 %). The most common responses about changes to mealtimes were keeping physical distance and serving healthy food. Interview themes were Autonomy Support, Controlling Feeding Practices, Interactions are the Same, Interactions are Different, Physical Distancing and Healthy Eating.

Mealtimes are a central part of the day for young children and teachers in ECE environments. COVID-19 continues to influence ECE routines as behaviour change remains the primary method of reducing the risk of COVID-19 in the absence of a vaccine for young children. Understanding teachers’ practices and perspectives is important for reducing the risk of COVID-19 and supporting children’s autonomy and healthy eating.