Parents’ experiences of their child’s best interests during a hospital stay in Australia

Determining the child’s best interests in a hospital setting will ideally involve the combined views of children, parents, and healthcare professionals. However, few studies have explored parents’ experiences of their child’s best interests when they engage with the healthcare system. Therefore, this study aimed to explore parents’ experiences of their child’s best interests during hospitalisation. A descriptive qualitative inductive design using face-to-face parent–child combined interviews, analysed by latent content analysis, was used. Sixteen parents recruited from a tertiary hospital in Western Australia were interviewed. Collaboration, development of trustworthy relationships, and effective communication were essential in shaping parents’ experiences of their child’s best interests during hospitalisation

Seeing lockdown through the eyes of children from around the world: Reflecting on a children's artwork project.

The COVID-19 pandemic created new challenges for children including access to education and limiting social and emotional connections to extended family, friends, and the community. Globally, opportunities for sharing children’s self-reported experiences during lockdown were limited. The primary aim of this project was to create an art-E-Book that reflects children’s experiences of life during the COVID-19 pandemic that could be shared with other children around the world. Secondly, we wanted to reflect on the consultation undertaken within the International Network of Child and Family Centered Care (INCFCC) using Gibbs (1988) reflective cycle framework. Children from around the world were invited to submit a piece of artwork that reflected their experience during the COVID-19 pandemic via a Qualtrics-survey in May 2020. The children’s artwork and written pieces were transcribed verbatim into an E-Book and the artwork was further placed into groups based on similarity of meaning. Fifty-five children from 17 countries submitted an artwork piece. Four groups were evident within the children’s artwork including infection control measures, positive experiences and emotions (connection to family, fun activities), negative experiences and emotions (social impact, emotional impact), and uniting children globally. The E-Book is available to download free of charge via the INCFCC website. The E-Book illustrates how children of all ages can provide meaningful insightful commentary and valuable information on their experiences during an unprecedented pandemic

Improved imputation of low-frequency and rare variants using the UK10K haplotype reference panel

Imputing genotypes from reference panels created by whole-genome sequencing (WGS) provides a cost-effective strategy for augmenting the single-nucleotide polymorphism (SNP) content of genome-wide arrays. The UK10K Cohorts project has generated a data set of 3,781 whole genomes sequenced at low depth (average 7x), aiming to exhaustively characterize genetic variation down to 0.1% minor allele frequency in the British population. Here we demonstrate the value of this resource for improving imputation accuracy at rare and low-frequency variants in both a UK and an Italian population. We show that large increases in imputation accuracy can be achieved by re-phasing WGS reference panels after initial genotype calling. We also present a method for combining WGS panels to improve variant coverage and downstream imputation accuracy, which we illustrate by integrating 7,562 WGS haplotypes from the UK10K project with 2,184 haplotypes from the 1000 Genomes Project. Finally, we introduce a novel approximation that maintains speed without sacrificing imputation accuracy for rare variants

STIMULATE-ICP-Delphi (Symptoms, Trajectory, Inequalities and Management: Understanding Long-COVID to Address and Transform Existing Integrated Care Pathways Delphi): Study protocol

Introduction As mortality rates from COVID-19 disease fall, the high prevalence of long-term sequelae (Long COVID) is becoming increasingly widespread, challenging healthcare systems globally. Traditional pathways of care for Long Term Conditions (LTCs) have tended to be managed by disease-specific specialties, an approach that has been ineffective in delivering care for patients with multi-morbidity. The multi-system nature of Long COVID and its impact on physical and psychological health demands a more effective model of holistic, integrated care. The evolution of integrated care systems (ICSs) in the UK presents an important opportunity to explore areas of mutual benefit to LTC, multi-morbidity and Long COVID care. There may be benefits in comparing and contrasting ICPs for Long COVID with ICPs for other LTCs. Methods and analysis This study aims to evaluate health services requirements for ICPs for Long COVID and their applicability to other LTCs including multi-morbidity and the overlap with medically not yet explained symptoms (MNYES). The study will follow a Delphi design and involve an expert panel of stakeholders including people with lived experience, as well as clinicians with expertise in Long COVID and other LTCs. Study processes will include expert panel and moderator panel meetings, surveys, and interviews. The Delphi process is part of the overall STIMULATE-ICP programme, aimed at improving integrated care for people with Long COVID. Ethics and dissemination Ethical approval for this Delphi study has been obtained (Research Governance Board of the University of York) as have approvals for the other STIMULATE-ICP studies. Study outcomes are likely to inform policy for ICPs across LTCs. Results will be disseminated through scientific publication, conference presentation and communications with patients and stakeholders involved in care of other LTCs and Long COVID

Long Covid active case finding study protocol: A co-produced community-based pilot within the STIMULATE-ICP study (Symptoms, Trajectory, Inequalities and Management: Understanding Long-COVID to Address and Transform Existing Integrated Care Pathways)

Background and aim Long Covid is a significant public health concern with potentially negative implications for health inequalities. We know that those who are already socially disadvantaged in society are more exposed to COVID-19, experience the worst health outcomes and are more likely to suffer economically. We also know that these groups are more likely to experience stigma and have negative healthcare experiences even before the pandemic. However, little is known about disadvantaged groups' experiences of Long Covid, and preliminary evidence suggests they may be under-represented in those who access formal care. We will conduct a pilot study in a defined geographical area in London, United Kingdom to test the feasibility of a community-based approach of identifying Long Covid cases that have not been clinically diagnosed and have not been referred to Long Covid specialist services. We will explore the barriers to accessing recognition, care, and support, as well as experiences of stigma and perceived discrimination. Methods This protocol and study materials were co-produced with a Community Advisory Board (CAB) made up primarily of people living with Long Covid. Working with voluntary organisations, a study leaflet will be distributed in the local community to highlight Long Covid symptoms and invite those experiencing them to participate in the study if they are not formally diagnosed. Potential participants will be assessed according to the study's inclusion criteria and offered the opportunity to participate if they fit them. Awareness of Long Covid and associated symptoms, experiences of trying to access care, as well as stigma and discrimination will be explored through qualitative interviews with participants. Upon completion of the interviews, participants will be offered a referral to the local social prescribing team to receive support that is personalised to them potentially including, but not restricted to, liaising with their primary care provider and the regional Long Covid clinic

Bi-allelic Loss-of-Function CACNA1B Mutations in Progressive Epilepsy-Dyskinesia.

The occurrence of non-epileptic hyperkinetic movements in the context of developmental epileptic encephalopathies is an increasingly recognized phenomenon. Identification of causative mutations provides an important insight into common pathogenic mechanisms that cause both seizures and abnormal motor control. We report bi-allelic loss-of-function CACNA1B variants in six children from three unrelated families whose affected members present with a complex and progressive neurological syndrome. All affected individuals presented with epileptic encephalopathy, severe neurodevelopmental delay (often with regression), and a hyperkinetic movement disorder. Additional neurological features included postnatal microcephaly and hypotonia. Five children died in childhood or adolescence (mean age of death: 9 years), mainly as a result of secondary respiratory complications. CACNA1B encodes the pore-forming subunit of the pre-synaptic neuronal voltage-gated calcium channel Cav2.2/N-type, crucial for SNARE-mediated neurotransmission, particularly in the early postnatal period. Bi-allelic loss-of-function variants in CACNA1B are predicted to cause disruption of Ca2+ influx, leading to impaired synaptic neurotransmission. The resultant effect on neuronal function is likely to be important in the development of involuntary movements and epilepsy. Overall, our findings provide further evidence for the key role of Cav2.2 in normal human neurodevelopment.MAK is funded by an NIHR Research Professorship and receives funding from the Wellcome Trust, Great Ormond Street Children's Hospital Charity, and Rosetrees Trust. E.M. received funding from the Rosetrees Trust (CD-A53) and Great Ormond Street Hospital Children's Charity. K.G. received funding from Temple Street Foundation. A.M. is funded by Great Ormond Street Hospital, the National Institute for Health Research (NIHR), and Biomedical Research Centre. F.L.R. and D.G. are funded by Cambridge Biomedical Research Centre. K.C. and A.S.J. are funded by NIHR Bioresource for Rare Diseases. The DDD Study presents independent research commissioned by the Health Innovation Challenge Fund (grant number HICF-1009-003), a parallel funding partnership between the Wellcome Trust and the Department of Health, and the Wellcome Trust Sanger Institute (grant number WT098051). We acknowledge support from the UK Department of Health via the NIHR comprehensive Biomedical Research Centre award to Guy's and St. Thomas' National Health Service (NHS) Foundation Trust in partnership with King's College London. This research was also supported by the NIHR Great Ormond Street Hospital Biomedical Research Centre. J.H.C. is in receipt of an NIHR Senior Investigator Award. The research team acknowledges the support of the NIHR through the Comprehensive Clinical Research Network. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR, Department of Health, or Wellcome Trust. E.R.M. acknowledges support from NIHR Cambridge Biomedical Research Centre, an NIHR Senior Investigator Award, and the University of Cambridge has received salary support in respect of E.R.M. from the NHS in the East of England through the Clinical Academic Reserve. I.E.S. is supported by the National Health and Medical Research Council of Australia (Program Grant and Practitioner Fellowship)

The Child's Best Interests during Hospitalisation - What does it imply?

IntroductionThe child’s best interest has moral foundations in medicine and has existed for decades in the field of paediatrics. Indeed, there are recommendations for the child’s best interests to be a primary consideration in all matters that concern the child. However, there is uncertainty in the literature over how the child’s best interests may be safeguarded within healthcare. AimThe aim of this thesis was to elucidate from various perspectives, the experiences of the child’s best interests during hospitalisation.MethodsA naturalistic paradigm was used, employing qualitative exploratory and qualitative descriptive designs. Data were collected from paediatic units in Sweden and Australia. Thirty-two observations of the interactions between children, their parents and healthcare professionals were graded using the Scale of Degrees of Self-Determination and normative assessments. The same 32 observations were also analysed using inductive content analysis and abductive reasoning. Further, inductive thematic analysis of interviews with nine children, and inductive content analysis of interviews with 16 parents was conducted. ResultsThe findings show that interpersonal relationships, an enhancing environment, effective communication, mutual negotiations and collaborations, and active participation are essential to safeguarding the child’s best interests during hospitalisation.ConclusionThe factors involved in safeguarding the child’s best interests during hospitalisation are interconnected and nested in a rather complex system and can be further understood using Bronfenbrenner’s bioecological model. The child’s best interests are context-dependent, situational, flexible, and dependent on all actors involved and actual decisions made. Safeguarding the child’s best interests during hospitalisation requires a case-by-case approach and a holistic view of the child, beyond their clinical treatment

Family-based prevention of overweight and obesityin children aged 2–6 years : a systematic review andnarrative analysis of randomized controlled trials

Overweight and obesity in childhood are highly preventable and parents are keyrole models in the establishment of healthy behaviours. The aimof this study wasto assess the effectiveness of family-based interventions for prevention of overweightand obesity in children aged 2–6 years. A systematic literature search wasperformed in the databases such as Medline, PsycInfo, Family Study Abstracts,Embase, and CINAHL, published between 2010 and May 2019. The eligible studieswere preventive randomised controlled interventions targeting the child or thechild’s caregivers. The primary outcome was body mass index (BMI).Twelve trials were included with a total of 3506 participants. Twelve trials were included with a total of 3506 participants. The overallfollow-up rate in the intervention groups was 83% as compared to 82% in thecontrol groups. Nine trials had a high or unclear risk of bias. The children werefollowed for between 6 weeks and 3 years. Four of the interventions showedsignificant intervention effects on BMI. Significant effects on children’s foodintake were reported in one (of five) study, whereas no significant changes inphysical activity were found (six studies). Two studies (of six) measuring sedentarybehaviours and one (of three) measuring sleep showed significant differencesbetween groups favouring the intervention group. The current evidence for the effects of preventive family interventions islimited. The four trials showing positive effects on BMI were multicomponentinterventions, lasting for a minimum of 12 weekly sessions

Children\u27s voices on their participation and best interests during a hospital stay in Australia

Purpose: To explore school-aged children\u27s experiences about their best interests and participation in care during a hospital admission. Design and methods: A descriptive qualitative design involving in-depth, iterative inductive review of child responses to generate key words that led to identification of categories and themes. The study was guided by the United Nations Convention on the Rights of the Child\u27s definition of the best interests of the child, Bronfenbrenner\u27s bioecological model and a child centred care approach. Results: Nine school-aged children (5–15 years old) from one children\u27s ward in Australia participated. Analysis yielded thirteen categories, six sub-themes, and three themes: 1) Relationships with parents were positive when they met their children\u27s physical and emotional needs and advocated for them; 2) Relationships with staff were positive when staff created opportunities for children to have a say in their healthcare, and checked in on the children and 3) Seeking familiarity away from home was facilitated when the environment children found themselves in provided them their own space and various forms of entertainment. Conclusion: School-aged children were able to verbalize what their best interests were and how participation in care could be facilitated in the hospital setting. The inter-relationships of the children with their parents, healthcare professionals, and the immediate environment reflected interactions both within, and between systems. Research and practice implications: Children in hospital need to be provided with age-appropriate opportunities to participate in shared decision making to support their best interests. Studies that model and evaluate such opportunities are needed

How are children's best interests expressed during their hospital visit?-An observational study

Aims and objectives: To describe ways in which children's best interests were observed to be expressed in paediatric settings during their hospital visit.Background: The best interests of the child are embodied in national and international legal systems, although the definition remains problematic. The child's limited autonomy mandates duty bearers to have both a child perspective and the child's perspective when considering what the best interest of the child entails in care situations.Design: A qualitative descriptive study with overt, non-participant observations fulfilling the COREQ criteria.Methods: Thirty-two observations of interactions between children aged 2 to 17 years with both acute and chronic conditions, their parents and healthcare professionals were conducted at three paediatric hospitals in Sweden. Inductive and abductive reasoning were used in the content analysis of data, which followed the identification, coding, categorising and abstraction of observed patterns of the best interest of the child.Results: Findings reveal facilitating and obstructing factors for the child's best interests to be safeguarded in healthcare situations. Children were guided in or hindered from exercising their competence. The observations showed a variation in actions taken by both parents and healthcare professionals to safeguard the best interests of the child.Conclusions: Determining the best interest of the child requires a case-by-case basis, as it is context-dependent, situational, flexible and dependent on all actors involved and actual decisions made.Relevance to clinical practice: Healthcare professionals' actions can facilitate or obstruct observed expressions of the child's best interest. It is essential to enhance healthcare professionals' communication skills, knowledge awareness and continuing education about the rights of children receiving healthcare services. Reflections and discussions on how to protect the best interests of children may help healthcare professionals to uphold children's best interest in daily clinical practice.Keywords: best interest; child rights; child's perspective; child-centred care; hospitalisation; mutual negotiation; observation