Purpose Social participation is significantly limited for children with neurodevelopmental conditions. Many social participation opportunities are derived from physical activities, which may be restricted for children with neurodevelopmental conditions. Adapted bikes play a crucial role in facilitating physical activity. This study aims to investigate the experience of children with neurodevelopmental conditions and the impact of adapted bike use on enabling physical activity and social participation. Materials and methods A qualitative descriptive approach was used to examine the experiences of seven children aged 6 to 14 with neurodevelopmental conditions and their parents. We conducted semi-structured interviews with the seven child-parent dyads and analysed the data using reflexive thematic analysis. Results Based on the analysis, five themes were identified and labelled as 1) Pedalling towards inclusion and participation 2) Gearing up, 3) Essential skills and gains from biking, 4) Riding on different paths, and 5) Resources for biking. Conclusion Adapted bikes can enhance inclusion and social participation. Achieving this requires a proper bike fit, the development of biking skills, consideration of bikers' diverse backgrounds and contexts, and access to necessary resources. By implementing these elements, more opportunities for social participation can be created and inclusion promoted.
Abstract Parents, particularly mothers, who experienced early life adversities (ELAs) are more likely to have a child with developmental disabilities (DD). We have little knowledge about how parental health varies across race-gender groups among those with a DD child and the role of ELAs in the associations. Using Black and White adults (n = 8,778; 25% Blacks) from the Midlife in the United States (MIDUS) study, we examine racial disparities in the impact of having a child with DD (vs. having healthy children) on parental health outcomes. This study questions (1) the extent to which parents’ ELAs (e.g., poverty and abuse) are associated with having a child with DD and (2) how considering early-life factors reveals racial and gender disparities in the impact of having a child with DD. We found that as the number of ELAs increases, the probability of having a healthy child decreases for all race-gender groups, but most dramatically for Black women. Having a DD has adverse effects on chronic illnesses and functional limitations more for mothers than fathers. Black women are most adversely affected, with no effect on Black men. There is no gender difference in the impact of having a DD child on depressive symptoms, yet White parents are more vulnerable than Black parents. After controlling for ELAs, the adverse effects of having a DD child on both physical and mental health remain significant. Future research should identify life-course circumstances that reveal why the impact of having a DD child varies by race and gender.
Objectives to verify the paternal involvement in pregnancy according to maternal and clinical factors. Methods cross-sectional study conducted in two primary health care units in Fortaleza, Brazil, during prenatal consultations with 130 women between May 2022 and March 2023. Participants completed the Paternal Involvement in Pregnancy Inventory and a form on sociodemographic, obstetric, and prenatal characteristics. Statistical analyses included the Shapiro-Wilk test, Mann-Whitney U test, and Spearman's correlation. Results half of the fathers never accompanied women to medical appointments, although most were always involved in other aspects. Paternal involvement was associated with paid employment (p = 0.049), family income (p = 0.022), living with a partner (p < 0.001), children at home (p = 0.035), and number of pregnancies (p = 0.035). Conclusions greater paternal involvement was observed among employed women, living with a partner, with fewer children at home, and up to two pregnancies, while lower income was associated with less involvement.
Abstract Introduction/Background Many patients present to Paediatric Rheumatology clinic, (53%) with chronic pain related to Hypermobility. Pre-Covid, an evidenced based hypermobility class was developed and run by the Allied Health Professional team for children and young people (C & YP), and their parents/carers. These 6 classes were group-based and included education and exercise therapy but were stopped due to the pandemic. Feedback gained was good from the class, although reported issues included reduced school attendance, accessibility due to location, parental time off work, financial and time implications of travel, and unsuitability of group interventions for CYP with social anxiety and autism disorders. Description/Method A digital platform (Vimeo) was used to present Hypermobility education and exercise content created by the Paediatric Rheumatology team. The video aims to address these barriers, allowing more equality of access for all CYP; digital access allows CYP and parents to re-visit this information at any time, providing ongoing support for long term management of this condition. The digital platform is being developed to maximize the effectiveness of therapy resources and to improve the patients experience to promote self-management of their hypermobility. Funding was applied for via the Transformation service. Meeting with the hospital videographer enabled the AHP team to devise a template for the video including education on what is Hypermobility, on the role of exercise - targeted versus general, the benefits of exercise, supportive footwear, pain management, pacing, sleep hygiene, and hand function advice to manage hypermobility. The class exercise programme including hand therapy was videoed using a model. The video was filmed in half a day. It was filmed using an unscripted question- and- answer format. The Paediatric Rheumatology MDT were filmed in the video. The digital platform is currently with our videography team for further edit. Further signposting to established resources will be included in the Vimeo resource. Following a final edit, this resource will be used for this patient population group. Feedback from CYP and parents, along with other health professionals is planned. Discussion/Results On receipt of the first edit, multi-source feedback from parents/carers, CYP and other health professionals is planned via Microsoft Teams. It is hoped to show the video via Teams and seek anonymized feedback on the Teams chat function. This feedback will be discussed by the Paediatric Rheumatology MDT and will inform the final edit of the Hypermobility video resource. Further data from Vimeo analytics will be gathered e.g. how many times video watched, how long video is watched for, and what devices are being used. It is hoped that the Hypermobility Video will help support CYP and families in the long-term management and pain resulting from this condition. Key learning points/Conclusion It is hoped that the use of new technologies and innovative ways of delivering care can enable health professionals to implement clinical support, improve self-management of chronic pain related to hypermobility, whilst improving equitable patient access to therapy across the North-West. Multi-source feedback will help inform the final edit of the video resource. Ongoing evaluation and analysis of Vimeo data will inform whether the resource is a useful adjunct in long term management of pain arising from Hypermobility.
Background/objectives Advances in paediatric care have increased the survival of children with severe neurological impairment, often accompanied by complex disability, multimorbidity, and a substantial treatment burden. Determining whether interventions provide meaningful benefit to the child is ethically challenging, particularly when decision-making is shared between parents and clinicians, while the child has limited capacity to participate directly in decision-making. This paper examines the guiding question "what's in it for the kid?" as a means of strengthening child-centred ethical deliberation alongside established frameworks. Methods We undertook a conceptual bioethical analysis informed by clinical experience in an inner city tertiary public hospital. The analysis focuses on children with severe neurological impairment and medical complexity. The paper critically examines how the guiding question aligns with and extends key ethical constructs, including shared decision-making, the Zone of Parental Discretion, the Best Interests Standard, and care ethics. Clinical scenarios are used illustratively to demonstrate application in practice. Results Existing ethical frameworks form an important foundational structure for complex decision-making. The question "what's in it for the kid" translates ethical principles into a practical moral prompt that centres the child as the subject of decision-making. It facilitates clearer consideration of risks, benefits meaningful to the child and lived experience and helps to distinguish the child's interests from those of parents and clinicians. Its simplicity enhances accessibility and supports consistent use in complex, high-stakes decisions. Conclusions "What's in it for the kid?" is a pragmatic and accessible ethical prompt that complements established frameworks by translating them into clinically usable practice. It promotes explicit, child-focused deliberation and supports a more transparent and child-centred evaluation of benefit and burden, particularly in contexts of uncertainty and medical complexity.
Introduction Marriages’ dissolution phenomenon had increased in recent years in Tunisia. The impact of divorce on children depends on the interweaving of several factors and is not inevitably pathological. We have noticed in our daily practice a concomitant increase in the number of request for expert opinions concerning children. Objectives Determine the clinical children’s profile of separated parents carried out within the framework of legal expertise. Methods We carried out a retrospective study in the outpatient child psychiatry ward at Fattouma Bourguiba general hospital in Monastir, Tunisia. Including all the expert reports of children affected by parental separations during a period of two years (2017 to 2019). Results 56 children were included in our study. The average age were (6.7 years) with a majority of males (58.2%). School failure concerned (24%). In most cases, the request for expertise was made in the context of mistreatment’s suspicion (60.7%), than following the parents’ separation (16.1%). Concerning the clinical picture: a normal psychiatric examination was found in the majority of cases (55.4%), anxiety symptoms concerned (32.1%). Cases of depression, global developmental delay and autism were also found. Conclusions According to our study, the vast majority of children presented a normal psychiatric examination. Moreover, a preponderant part of the symptoms seemed to result from educational errors. While parental separation poses risks for children, research shows that these negative effects are not the same for everyone. Several factors can reduce these risks and promote children’s resilience. Thus, first-line psychosocial care should be offered for families and children in seprations’ context. Disclosure No significant relationships.
The COVID-19 pandemic dramatically reduced early-life respiratory viral exposures, yet the long-term respiratory consequences for pandemic-born children remain unclear. We aimed to compare respiratory morbidity at age 4 between children born during versus before the pandemic and assess whether atopic risk modifies this association. This single-center birth cohort follow-up study included children born in February-March 2020 (COVID-19 cohort) and pre-pandemic controls born during the same period in 2019. Respiratory outcomes at age 4 were assessed using a structured telephone questionnaire (The International Study of Wheezing in Infants). The primary outcome was composite respiratory morbidity (CRM), defined as use of a short-acting bronchodilator (SABA), inhaled and/or oral corticosteroids, and/or emergency room visits for respiratory symptoms. Of 588 eligible children, 329 (55.9%) completed follow-up (139 COVID-19, 190 controls); baseline characteristics, including atopy prevalence, were comparable between cohorts. CRM during the fourth year of life was significantly more common in the COVID-19 cohort (39.6% vs. 27.4%, p = 0.02). In stratified analyses, CRM was markedly higher among atopic-risk pandemic-born children (atopic subgroup: n = 47 COVID-19, n = 68 controls) (66% vs. 27.9%, p < 0.001), but not among non-atopic children (26.1% vs. 27%). Multivariable logistic regression confirmed a significant COVID-19 cohort × atopy interaction for CRM (OR 5.04, 95% CI 1.83-13.89, p = 0.002), while neither factor alone was independently associated with the outcome. Conclusions Birth during the COVID-19 pandemic was associated with increased preschool respiratory morbidity, particularly among children with atopic risk. These findings suggest that altered early-life microbial exposures may modify respiratory morbidity trajectories according to host atopic susceptibility. What is known • Children born during the COVID-19 pandemic had fewer respiratory infections and wheezing episodes in infancy due to reduced viral circulation. • Atopic predisposition is among the strongest risk factors for recurrent wheezing and persistent asthma in preschool children. What is new • Pandemic-born children show significantly higher composite respiratory morbidity at age 4, but exclusively among those with atopic risk (OR 5.04). • Neither pandemic birth nor atopy alone predicts excess morbidity-only their combination does, suggesting host susceptibility shapes long-term respiratory trajectories.
Introduction Maternal age and related factors, such as social vulnerability, are associated with neurodevelopmental and behavioral disorders in offspring. Objectives To examine the influence of maternal age and its related factors on the appearance of autism spectrum disorder (ASD), attention deficit hyperactivity disorder (ADHD), alterations in executive functions and behavioral syndromes of the offspring. Methods A prospective study was conducted, consisting of 131 healthy pregnant women aged 20 to 41 years, recruited at 38 weeks’ gestation. Their offspring were followed up to 2 years after birth, when psychopatology was assessed. Maternal age and possible related factors were considered predictors. Bayesian ordinal regression models were performed for each outcome variable. Results Symptoms of ASD in children were associated with an older maternal age (OR = 0.188; 95% CI[1.062, 1.401]) and a lower educational level of the parents (OR = -0.879; 95% CI[0.202, 0.832]), meanwhile poor social support predicted most ADHD symptoms OR = -0.086; 95% CI[0.838, 1]) and executive dysfunctions OR = -0.661; 95% CI[0.313, 0.845]. Lower parental education predicted both externalizing and internalizing behavior. Conclusions Maternal age-related factors were the main predictors of neurodevelopmental disorders in offspring, rather than maternal age. The performance of prenatal interventions in pregnant women with advanced age and anxious depressive symptoms or adverse social situation, is crucial to reduce the risk of neurodevelopmental disorders in the offspring. Likewise, being able to carry out an early detection of childhood psychopathology would allow the implementation of resources that improve their long-term prognosis. Disclosure No significant relationships.
Lorenzo J, García-Blanco A, Moreno-Giménez A et al.
Interventions that increase co-participation in walking between parents and children, particularly primary school-aged children, are likely to generate important health benefits. To identify potentially suitable targets for interventions, we tested the extent to which the theory of planned behaviour (TPB) could predict co-participation in walking for three journey types: school journeys; non-school journeys (e.g., going to a friend’s house of the shops); and leisure journeys (e.g. walking around a park or the neighbourhood). Parents of primary school children (N=128) completed online questionnaires measuring the TPB’s constructs with respect to each target behaviour and, one month later, their reported frequency of each target behaviour. The TPB accounted for 33%-76% of the variance in the measures of behaviour and 36%-69%% of the variance in the measures of intentions to behave. Intention and perceived behavioural control independently predicted all three types of walking behaviour. Attitude and perceived behavioural control, but not subjective norm, independently predicted intentions to perform all three types of walking behaviour. The results, therefore, supported the application of the TPB within this novel transportation and health context. Future interventions to increase parent-child co-participation in walking might usefully aim to promote positive parental attitudes and perceptions of control.
Abstract WNT-medulloblastoma has an excellent prognosis, with an overall survival rate of 90% among children receiving standard-of-care surgical resection, radiotherapy, and chemotherapy. While curative, this treatment is associated with major, long-term, debilitating side effects. Therefore, it is crucial we develop effective, less toxic therapies for these children. The Gilbertson lab has previously shown that WNT-medulloblastomas are devoid of a Blood-Brain-Barrier (BBB). This disruption allows large molecules such as monoclonal antibodies (mAbs) to penetrate WNT-medulloblastomas. To discover WNT-medulloblastoma specific antigens for mAb targeting, we have first generated bulk and single-cell RNA sequencing profiles of the wild-type and WNT-medulloblastoma-prone mossy-fibre progenitor lineages in the lower rhombic lip, as well as human medulloblastoma patient derived orthotopic xenograft (PDOX) tumours. We next generated plasma membrane proteome profiles of hindbrain germinal zones and WNT-medulloblastomas. Plasma Membrane Profiling (PMP) deploys an isobaric chemical labelling approach -Tandem Mass Tags (TMT) - that allows multiplexing of up to sixteen variables per mass spectrometry experiment and ex vivo TMT-labelling of primary cells. Using this approach, we have mapped the cell surface proteome of our medulloblastoma models. Interrogation of these developmental and tumour data has unmasked WNT-medulloblastoma associated antigens that are specific for prenatal brain and WNT-medulloblastoma, but that are not expressed on critical postnatal tissues. Our workflow integrates multi-omic data sets to uncover a targetable landscape on the surface of WNT-medulloblastoma cells that we have cross-validated with a large cohort of patient RNA sequencing profiles and histological samples of both mouse and human tumours. To translate this dataset to real patient benefit, we are generating high affinity antibodies of these validated cell-surface proteins for assessment in our pre-clinical mouse models. mAbs directed towards essential receptors may have a therapeutic effect alone, however we will additionally modify mAbs to specifically deliver cytotoxic therapeutics - curing children whilst sparing healthy brain tissue.
