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Background: Children and young people (CYP) with complex neurodisability experience multiple physical, communication, educational and social challenges, which require complex packages of multidisciplinary care. Part of the holistic care required includes supporting the families and parents/caregivers. The aim of the wider study was to introduce a new programme ('Ubuntu') to parents/caregivers and healthcare professionals (HCPs) in order to test the feasibility and acceptability of the concept and content, with the goal of potential adaptation for the UK in mind. Data collection and analysis uncovered rich data on caregiving journeys, navigation of health services, and perceived service gaps. This paper focuses solely on these topics. Further papers will report on the feasibility and adaptation data. Methods: Two rounds of semi‐structured interviews were conducted with 12 caregivers of CYP with complex neurodisability and six HCPs from a variety of disciplines, recruited from a community child health service in London Borough of Newham, UK in 2020. The interviews included open‐ended questions to explore caregiving journeys, experiences of navigating health services and perceived service gaps. Transcripts were analysed using a data‐driven inductive thematic analysis. Results: Three themes were identified that related to the aim of understanding caregivers' experiences and unmet needs relating to current service provision. These were (1) Caregiver Mental Health, (2) The Information Gap and (3) The Need for Holistic Support. Mental health difficulties were reported, particularly around the period of diagnosis. Priority needs included the provision of clear information about the diagnosis and services offered, opportunities to forge peer support networks and for services across the community to collaborate. Conclusions: The delivery of health services for CYP with neurodisability should encompass the broad needs of the family as well as meeting the clinical needs of the CYP. [ABSTRACT FROM AUTHOR]

The article offers the authors' insight on the impact of the sponsorship of paediatricians or paediatric societies by the baby feeding industry to their reputation and professional practice. Topics discussed include the importance of breastfeeding in child survival, the role of baby feeding companies in the promotion of breastmilk substitutes, and the spreading lobby pressure by infant formula and baby food manufacturers in emerging markets.

Background: Blended feeding has become increasingly prevalent in recent years with its practice gaining some momentum. With anecdotal reports of benefits and little evidence of harm in the literature regarding blended feeding, this scoping review was deemed important. The aim of this scoping review was to summarise the published evidence about blended feeding in gastrostomy‐fed children. Method: The scoping review methodology used included searches in specific online databases: PUBMED, PsychINFO, CINAHL, SCOPUS, AMED and EMBASE for articles that addressed issues pertaining to blended feeds in gastrostomy‐fed children. Grey literature was also considered. Inclusion criteria included papers that pertained to information and research on blended feeding in gastrostomy‐fed children. Studies published in English over the past 11 years (2011–2022) were included. This resulted in 59 papers being included in this scoping review. Results: Thematic analysis of the literature identified eight overall themes. It was clear that parents found blended feeding promoted the normalising of feeding, their own involvement in decision‐making around foods and promotion of a socially inclusive mealtime. The need for dietician and health professional input and support is key, whereas a lack of guidelines acts as a barrier to blended feeding. Furthermore, risks associated with blended feeding are identified but also the benefits to the physical well‐being of the child are considered. Conclusion: The review was comprehensive in that it identified a broad range of literature, exploring the extent, range and nature of research activity related to the use of blended feeds. The lack of original research is a concern. However, it is expected this review will provide direction for researchers, and in particular inform policy and practitioners working in the field where blended feeds may be an option for gastrostomy‐fed children. [ABSTRACT FROM AUTHOR]

Background: Collaboration between therapists and parents of children with developmental disabilities is a key element of family‐centred care. In practice, collaboration appears to be challenging for both parents and therapists. This systematic review aims to make explicit how therapists can optimise their collaboration with parents of young children with developmental disabilities, according to the perspectives of parents and therapists. Methods: A systematic review was conducted using the following databases: Medline (PubMed), CINAHL (OVID) and PsychINFO (OVID). Those papers were selected, which focused on collaboration using a two‐way interaction between therapists and parents, exploring the perspectives of therapists and/or parents of children between 2 and 6 years. Papers needed to be published in English or Dutch between 1998 and July 2021. Included papers were synthesised using a qualitative analysis approach by two researchers independently. Results sections were analysed line‐by‐line, and codes were formulated and discussed by all authors. Codes were aggregated, resulting in a synthesis of specific collaboration strategies in combined strategy clusters. Results: The search generated 3439 records. In total, 24 papers were selected. Data synthesis resulted in an overview of specific strategies organised into five clusters: (1) continuously invest time in your collaboration with parents, (2) be aware of your important role in the collaboration with parents, (3) tailor your approach, (4) get to know the family and (5) empower parents to become a collaborative partner. Conclusions: This systematic review resulted in an overview of concrete strategies for therapists to use in their collaboration with parents of children with developmental disabilities. The strategies formulated enable therapists to consciously decide how to optimise their collaboration with each individual parent. Making these strategies explicit facilitates change of practice from therapist‐led and child‐centred towards family‐centred care. [ABSTRACT FROM AUTHOR]

Background: Mil Días (A Thousand Days) is a programme for the first thousand days of life, from gestation to 2 years of age, targeted at highly vulnerable children and/or mothers and pregnant women. The programme was implemented in August 2015 in the municipality of San Miguel, in Argentina. Mil Días is designed in a holistic and intersectoral way. The main form of intervention is through home visits, but other benefits are available depending on the 51 vulnerability criteria by which participants are admitted to the programme, most of which are related to health issues. Exits of the programme occur when the mother and/or child have reversed the deprivation/s of the entrance‐criteria. Methods: This paper provides an analysis of the programme's primary data between August 2015 and May 2019, with a total of 1,111 programme participants. First, we perform a statistical analysis of the targeted population of the programme. Second, using a logistic regression, we study factors associated to the withdrawal from the programme. Third, using survival analysis, we study the correlates of time to graduation from the programme. Results: We find that the programme is well‐targeted, as participants exhibit higher deprivation levels than those exhibited by beneficiaries of social programmes in general in the same municipality. We also find that programme participants in situations of most extreme vulnerability are more likely to abandon the programme and that successful exits from the programme take longer for more complex cases. Conclusions: Mil Días–San Miguel is a programme for early childhood development in Argentina, which was pioneer when it was first introduced. It is well targeted and exhibits encouraging results despite complex cases taking longer to sucessfully exit the programme. In addition, the poorest poor participants are more likely to abandon the programme and so additional actions could be taken to retain them, as intended by the 'Leave No One Behind' 2030 commitment. [ABSTRACT FROM AUTHOR]

This paper reports part of a wider systematic review commissioned by the English National Safeguarding Panel on Sudden Unexpected Death in Infancy (SUDI). The wider review covered three areas: interventions to improve safer sleep practices in high‐risk families, interventions to improve engagement with services and decision making by parents at high risk of SUDI about infant sleep environments. Here, we report the qualitative and quantitative studies reviewed under the engagement strand. Parental engagement is understood to be a multidimensional task for health and social care professionals comprising attitudinal, relational and behavioural components. Following a PROSPERO registered systematic review synthesizing the three strands outlined, 28 papers were found to be relevant in the review of interventions to improve engagement with services in families with children at risk of significant harm through abuse or neglect. No studies were found that specifically focused on engagement of families at high risk for SUDI, so these wider engagement studies were included. The different types of intervention reported in the included studies are described under two broad themes: Enablers (including parental motivation and working with families) and Barriers. Given the focus in the studies on interventions that support parental engagement, the Enablers theme is more extensive than the Barriers reported although all studies noted well‐understood barriers. The evidence underpinning these interventions and approaches are reviewed in this paper. We conclude that effective engagement is facilitated by experienced professionals given time to develop supportive non‐judgemental relationships with families in their homes, working long‐term, linking with communities and other services. While these conclusions have been drawn from wider studies aimed at reducing child maltreatment, we emphasize lessons to be drawn for SUDI prevention work with families with children at risk of significant harm. [ABSTRACT FROM AUTHOR]

Background: The "F‐words in childhood disability" (function, family, fitness, fun, friends, and future) were introduced in a concept paper in 2012 entitled, "The F‐words in childhood disability: I swear this is how we should think!". The "F‐words" are grounded in, and aim to operationalize, the World Health Organization's (World Health Organization, 2001) International Classification of Functioning, Disability and Health (ICF) framework. A citation analysis was conducted to explore the extent of research uptake of the "F‐words" concepts. Methods: Three databases—Google Scholar, Wiley Online, and Web of Science—were searched from July 2012 to December 2018 for sources that cited the original F‐words paper. Dates of publication and countries of first authors were extracted from all cited articles, and a taxonomy was developed to categorize the type of usage. Results: The search yielded 157 sources from 26 countries, and the number of citations has continued to increase since the paper's publication. Sources were placed into three categories: cited/referenced (n = 109; i.e., the paper was simply cited), integrated/informed (n = 36; i.e., the F‐words were stated within the text), and non‐English (n = 12). Of the 36 integrated/informed sources, 34 (94.4%) applied the F‐words to the ICF framework and five themes emerged with respect to the use of the F‐words: (a) support of a holistic approach to childhood disability, (b) association of the F‐words to physical activity and rehabilitation, (c) application and measurement of quality of life, (d) F‐words research team‐related papers, and (e) "other" category. Conclusion: This citation analysis shows that the F‐words are mainly being used to operationalize the ICF, support a holistic approach to childhood disability, and inform physical activity and rehabilitation‐based interventions. These perspectives will play an important role in informing the next steps with respect to moving the F‐words into research and practice. [ABSTRACT FROM AUTHOR]

Aim: The aim of this study is to describe the individualized occupational performance issues identified by parents/carers and children prior to selective dorsal rhizotomy (SDR) surgery and analyse change up to 2 years post surgery in goal attainment and quality of life (QoL). Method: The Australian SDR Research Registry (trial registration: ACTRN12618000985280) was used to extract data for individualized goals, goal attainment and QoL based on the Canadian Occupational Performance Measure (COPM) and the Cerebral Palsy Quality of Life Questionnaire for Children (CP QOL‐Child parent‐proxy) at baseline and 1 and 2 years following SDR. Change in mean scores was analysed using linear mixed models. Results: Fifty‐two children had COPM scores at baseline and 1 and/or 2 years post, of which 28 had two QoL scores. COPM problem areas included leisure (n = 39), productivity (n = 37) and self‐care (n = 173). The most common goals were walking (26.1%), participation in physical activities (17.7%) and transitions (14.1%). Mean COPM scores improved significantly between baseline to 1 year and baseline to 2 years (P < 0.001). Mean QoL scores improved between baseline to 1 year for functional QoL domains: participation and physical health (P = 0.003) and pain and impact of disability (P = 0.011). Conclusions: Collaborative goal setting is an integral part of family‐centred rehabilitation practice. The COPM was an appropriate individualized outcome measure in identifying meaningful goals for our SDR cohort. Results demonstrate improved scores in goal attainment and improvement in functional QoL domains. This paper highlights the need to include outcomes that measure daily life experiences. [ABSTRACT FROM AUTHOR]

Growing evidence demonstrates that the mental and psychosocial health impacts of caring vary significantly for individual children, depending on who they are, the person that they care for, their responsibilities and the wider family situation. Although individual studies have made progress in identifying the range of impacts, there is a lack of clarity around which impacts affect who and in what circumstances. This synthesis, based on RAMESES realist protocols, aims to increase clarity concerning how and why the mental and psychosocial health impacts of caring for a family member vary for different children. There were 12 391 unique search results screened at title, abstract and full‐paper levels. Forty‐four retained studies were analysed, resulting in the development of a model with 17 context‐mechanism‐outcome configurations. The model divides the configurations into three interlinking domains. The caregiving responsibilities domain considers how the impacts of caring vary with the circumstances of the individual young carer, the person they care for and their family. The identity domain details the development of a caring identity that potentially mitigates the negative effects of caring and enables positive benefits. The support domain concerns the support provided from family, community and services that, depending on quality, can mitigate or exacerbate the impacts of caring. Support also moderates the care identity by affecting self‐perception of the caring role. The model has the potential to inform the development of interventions that target particular mechanisms to enable positive change for young carers. This potential can be enhanced by further research to test the model, with a focus on refining configurations where less evidence is available. There is a particular need to focus on identification which is under‐represented in the model as both a mechanism and a contextual factor due to unidentified young carers being largely absent from past research. [ABSTRACT FROM AUTHOR]

Background: Since the Convention on the Rights of the Child in 1989, interest in the ethical and methodological challenges involved in conducting research with children has increased considerably. Researchers who work with children have to take into account children's intrinsic physical, mental and emotional vulnerability as well as their interdependence with other family members, particularly their parents. This is especially challenging in research that seeks to explore children's lived experience in relation to aspects of their family lives. Objective: We aimed to identify specific ethical issues and ways of overcoming challenges in conducting research with children on some aspects of their family lives. Methods: We conducted a scoping review according to the PRISMA Extension for Scoping Reviews Checklist. Seventeen publications were selected for data extraction and synthesis, 4 of which were original studies and 13 reflexive papers. Results: Our results confirm that a research project that asks children about aspects of their family lives leads to a number of ethical tensions: While children depend on their parents and family to ensure that their safety and physical needs are met, they also greatly contribute to the development of family dynamics. We highlight methodological strategies that allow researchers to mitigate the ethical challenges that are inherent to this type of research. Discussion/conclusion: A promising approach is to use participative methods at each stage of research, including developing a trusting and triadic partnership that includes parents, children, a multidisciplinary research team and professional gatekeepers. Benefits as well as possible risks for participants should also be considered when children and their parents are engaged in a study. [ABSTRACT FROM AUTHOR]

Background: Respiratory disease is a leading cause of hospitalizations and deaths in young people with cerebral palsy (CP). It is insidious and multifactorial. Clinical management can be complex. This systematic review describes effects of interventions for the prevention and management of respiratory disease in young people with CP. Methods: Nine databases (Cochrane, CINAHL, Embase, EMCare, MEDLINE, PEDro, OpenGrey, ScienceDirect, and SpeechBITE) were searched. Eligibility criteria were as follows: the population included at least 50% individuals with CP aged under 26 years, the intervention was for chronic respiratory illness, the outcomes were any measurable indicators of respiratory health or morbidity; the study design could be any original study reporting effects of an intervention on measurable outcomes, and the study was published January 1998 or later. The American Academy for Cerebral Palsy and Developmental Medicine methodology guided study appraisal and synthesis. The review was registered with PROSPERO (reference number CRD42018086314). Results: The search yielded 3,347 papers; 37 papers (reporting 34 studies) of these met the eligibility criteria. They included 582 participants with CP (ranging from 1 to 77 across studies) with ages from 5 months to 25 years. Interventions were diverse and included: airway clearance techniques, exercise, positioning, mealtime management, salivary management, upper airway interventions, antibiotics, gastro‐intestinal interventions, and spinal surgery. There were no interventions aimed at prevention of respiratory disease in this population. Research designs were classified as Levels 2 (n = 3), 3 (n = 2), 4 (n = 25), and 5 (n = 4). Conclusions: Evidence for most respiratory interventions for young people with CP is absent or weak. No controlled trials demonstrated significant effects on respiratory morbidity, owing to their scarcity, weak designs, and inadequate power. There is an urgent need for well‐designed prospective controlled studies investigating prevention and management of respiratory disease in young people with CP. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background Numbers of looked-after children and young people (LACYP) in the UK have risen over the last seven years. Looked-after children and young people should receive regular health assessments, including establishing immunization status and, if needed, developing a health plan to achieve full immunization. The Department for Education publish data on immunizations among LACYP to monitor both how well they are immunized and service performance. Methods A literature review was conducted using four databases (PubMed, Embase, Scopus and Web of Science) on immunization status of LACYP, factors affecting uptake and challenges to immunization, and interventions to improve immunization rates. Results Thirty-two papers were identified, 16 of which were UK based. Looked-after children and young people are less likely to be 'up-to-date' with their immunizations than children in the general population. Looked-after children and young people are less likely to receive timely immunizations, and older LACYP are less likely to be 'up-to-date' than younger LACYP. Barriers to immunization include failure to attend health checks, absence from school and frequent placement moves. Unknown and discrepant immunization histories, name changes, sharing of information between organizations and obtaining consent for immunizations are also challenges. Conclusions In recent years, immunization of LACYP has been given a higher priority. However, the immunization figures produced by the Department for Education are problematic because of challenges in determining whether the child is 'up-to-date', and data are not comparable with the general population; ideally, this should be changed to correspond to routine immunization data. In the interim, for reporting purposes, the use of a tool to assist with determining a child's immunization status would be beneficial. When a child's immunization status is incomplete or unknown, Public Health England's algorithm for vaccination of individuals with uncertain or incomplete status should be used. Practice to improve immunization uptake amongst LACYP needs to be evaluated to develop evidence-based recommendations. [ABSTRACT FROM AUTHOR]

Background: Maternal parity, which is usually measured as the number of children born to a mother, has a substantial impact on the social and environmental factors around children and their development. This paper estimates the Early Childhood Development Index (ECDI) of 3‐ and 4‐year‐old children in Bangladesh and examines the relationship between maternal parity and early childhood development. Methods: The study analysed nationally representative data from the Bangladesh Multiple Indicator Cluster Survey 2019. The dataset had 9453 children aged from 36 to 59 months. The ECDI was computed following the UNICEF's approach involving psychometric computation of four domains of development: physical, literacy‐numeracy, learning and social–emotional. Since the dataset has a hierarchical structure, we used multilevel logistic regression. Results: A quarter (25%) of the children were not on track in their early childhood development. Seventy‐one percent were not developmentally on track in the literacy‐numeracy domain, 27% were not in the social–emotional and smaller percentages were not in learning (9%) and physical (1%) domains. There was a significant negative association between maternal parity and ECDI (adjusted odds ratio [AOR] 0.95; 95% CI: 0.91–0.99). Attendance at early childhood education programmes was significantly associated with early childhood development (AOR 1.73; 95% CI: 1.47–2.03). Also, female children, those who were not stunted, located in rural areas, received parental stimulation activities, lived in relatively wealthy households or had mothers who had received secondary or further education were more likely than others to be on track of early childhood development. Conclusions: Early childhood development is negatively correlated with maternal parity. The literacy‐numeracy domain constitutes the major developmental delay. Programmes for parental awareness should be widely expanded. [ABSTRACT FROM AUTHOR]

Background: Recently in Australia, access to culturally safe developmental practices for Aboriginal and Torres Strait Islander families has been enhanced by the availability of a culturally appropriate developmental screening tool, the Ages and Stages Questionnaire – Talking about Raising Aboriginal Kids (ASQ‐TRAK). This paper aims (i) to describe the uptake of the ASQ‐TRAK developmental screening tool in Aboriginal Community Controlled Organizations and mainstream services in Australia and (ii) to explore the extent to which organizations using the ASQ‐TRAK have engaged training for staff. Methods: A retrospective review of ASQ‐TRAK sales and training records from January 2015 to May 2020 to determine the ASQ‐TRAK distribution by jurisdiction and service type and the number of services that have engaged training. Results: Five hundred ASQ‐TRAK kits have been distributed across 77 agencies. Of those, 100 kits (20%) have been purchased by Aboriginal Community Controlled Organizations. Most have been distributed in the Northern Territory (NT) (178, 36%), Western Australia (165, 33%) and South Australia (64, 13%). Of the 15 ASQ‐TRAK training workshops, nine have been in the NT. Of the 196 practitioners trained, 25 were identified as facilitators for their organization. Conclusion: Despite substantive research translation across Australia, with evidence of its acceptability in different contexts, most Aboriginal Community Controlled Organizations have not yet accessed the ASQ‐TRAK, and most organizations have not participated in training. There is an imperative to progress knowledge translation to improve quality and accessibility of culturally appropriate developmental care. Adequately resourced ASQ‐TRAK implementation support is needed to ensure sustainable implementation at scale. [ABSTRACT FROM AUTHOR]

Background: The use of screen time for young children has been hotly debated among experts. This study explored the utilization of screen time among mothers with young children during the COVID‐19 pandemic. The objective of this study was to understand maternal motivation for utilizing screen time and how mothers have engaged in screen time since the beginning of the pandemic. Method: This paper uses a sample of n = 25 mothers who participated in an in‐depth interview about parenting during the COVID‐19 pandemic. The team utilized a thematic analysis approach to qualitatively code the transcripts. All analyses were conducted in Dedoose 8.3, and all transcripts were coded by three independent researchers to enhance rigour. Results: Five main themes emerged from the interviews: (1) harbouring screen guilt versus letting it go, (2) managing full‐time work and full‐time parenting, (3) prioritizing mental sanity, (4) socially distant supports demand screen time and (5) screens can have positive uses, too. Conclusion: During the COVID‐19 pandemic, mothers have resorted to screen time use to cope with increased stress and challenges. However, mothers have also found positive uses for screen time, such as connection with extended family members, peer interaction and educational activities. Findings highlight the need to differentiate screen time use by quality and to update formal screen time guidelines considering changing roles of technology. [ABSTRACT FROM AUTHOR]

Background: Children and young people with long‐term conditions (LTCs) are usually dependent on, or share management with, their families and are expected to develop self‐management skills as they mature. However, during adolescence, young people can find it challenging to follow prescribed treatment regimens resulting in poor clinical outcomes. Though reviews have looked at children's and parents' experiences of self‐management, none have explicitly examined the parent‐to‐child transfer of self‐management responsibility. Methods: An integrative review was conducted with the aim of exploring the parent‐to‐child transfer of LTC self‐management responsibility, through addressing two questions: (a) How do children assume responsibility from their parents for self‐management of their LTC? (b) What influences the parent‐to‐child transfer of this responsibility? Eight databases were searched for papers published from 1995 to 2017. Methodological quality was assessed; included papers were synthesized to identify themes. Results: Twenty‐nine papers were identified. Most papers used qualitative designs and focused on children with diabetes. Participants were predominantly children and/or parents; only two studies included health professionals. Assuming self‐management responsibility was viewed as part of normal development but was rarely explored within the context of the child gaining independence in other areas of their life. Children and parents adopted strategies to help the transfer, but there was limited evidence around health professionals' roles and ambivalence around what was helpful. There was a lack of clarity over whether children and parents were aiming for shared management, or self‐management, and whether this was a realistic or desired goal for families. Multiple factors such as the child, family, social networks, health professional, and LTC influenced how a child assumed responsibility. Conclusions: Evidence suggests that the parent‐to‐child transfer of self‐management responsibility is a complex, individualized process. Further research across childhood LTCs is needed to explore children's, parents', and professionals' views on this process and what support families require as responsibilities change. [ABSTRACT FROM AUTHOR]

Background: In China, there are approximately 70 million children, nearly 25% of the child population, who are left behind in the care of other family members when their parents migrate to urban areas, for increased economic opportunities. This paper presents a systematic review and a meta‐analysis of studies that have examined the phenomenon of depression among these left‐behind children (LBC). Methods: Six hundred three papers published between 2000 and 2017 were retrieved from five databases (China National Knowledge Infrastructure, Wanfang, Weipu, PubMed, and Web of Science). Results: Twenty‐one studies (18 in Chinese and 3 in English) met the criteria for inclusion in this meta‐analysis. The pooled estimate of depression among LBC was 26.4%. A significant heterogeneity has been found in reported findings, and this heterogeneity was associated with three types of study characteristics, including using an unclear definition of LBC and using invalidated depression instruments, and the geographic location. Conclusions: The risk of mental health problems among this large number of LBC suggests the need to quantify the extent and distribution of their mental health state. Implications for methodological improvements for future research have been discussed. [ABSTRACT FROM AUTHOR]

Aim: As increasing numbers of unaccompanied refugee minors (URMs) are arriving in Europe, there is a need to investigate which factors promote psychological resilience and improve their mental health. This review aims to identify preventive post settlement influences, including living arrangements, access to mental health services, and effective treatments that may improve mental health outcomes. Methods: A systematic literature review was conducted of published papers in any language for children (<18 years) entering a host country, unaccompanied and seeking asylum. Specific studies were eligible if they examined any treatment or nontreatment influences on mental health or psychological resilience for the URM. Thirteen published quantitative studies were identified. Results: URMs in more supportive living arrangements including foster care had lower risk of PTSD and lower depressive symptoms compared with those in semi‐independent care arrangements. URMs living in reception settings that restricted freedom had more anxiety symptoms. Regarding help seeking, one study found only 30% of URMs had foster parents or guardians who could detect a mental health need. Two papers found the URMs had low levels of contact with mental health services despite the high prevalence of psychiatric symptoms. URMs were less likely than accompanied children to receive trauma‐focused interventions, cognitive therapy, or even practical assistance with basic social needs. With regard to treatment evaluation, only case series were identified. Three studies found cognitive behavioural therapy improved PTSD symptoms and mental health outcomes. A less structured approach (mental health counselling alone) did not improve functional health outcomes. Conclusion: Higher support living arrangements with low restrictions are associated with lower psychological distress. Most URMs are not receiving psychological interventions, and there is a dearth of studies evaluating treatment effectiveness for this group. There is an urgent need for more research to investigate pathways to mental health services and treatment efficacy in this vulnerable group. [ABSTRACT FROM AUTHOR]

Background: Children experiencing critical illness or injury may require admission to a paediatric intensive care unit (PICU) to receive life‐sustaining or life‐saving treatment. Studies have explored the experience of parents with a child in PICU but tend to focus on subgroups of children or specific healthcare systems. Therefore, we aimed to undertake a meta‐ethnography to draw together the published research. Methods: A systematic search strategy was developed to identify qualitative studies, which had explored the experiences of parents with a critically ill child treated in a PICU. A meta‐ethnography was undertaken following the structured steps of identifying the topic; undertaking a systematic search; reading the research; determining how the studies relate and translate into each other; and synthesising and expressing the results. Results: We identified 2989 articles from our search and after a systematic series of exclusions, 15 papers remaining for inclusion. We explored the original parent voices (first order) and the interpretation of the study authors (second order) to identify three third‐order concepts (our interpretation of the findings), which related to technical, relational and temporal factors. These factors influenced parents' experiences, providing both barriers and facilitators to how parents and caregivers experienced the time their child was in the PICU. The dynamic and co‐constructed nature of safety provided an analytical overarching frame of reference. Conclusion: This synthesis demonstrates novel ways in which parents and caregivers can contribute to the vital role of ensuring a co‐created safe healthcare environment for their child when receiving life‐saving care within the PICU. [ABSTRACT FROM AUTHOR]

Background: Attention deficit hyperactivity disorder (ADHD) is a common neurodevelopmental disorder that can persist into adulthood. Young people often stop taking ADHD medication during adolescence despite evidence that continuation would be beneficial. Increasingly, young people are restarting medication in early adulthood suggesting that cessation was premature. In this paper we explore the reasons given by young people for discontinuing ADHD medication. Methods: Qualitative data from the Children and Adolescents with ADHD in Transition between Children's and Adult Services (CATCh‐uS) project was analysed to look for reasons for stopping medication. Semi‐structured interviews with three groups of young people were analysed using thematic and framework analysis; this included young people prior to transition (n = 21); young people that had successfully transitioned to adult services (n = 22); and young people who left children's services prior to transition but re‐entered adult services later (n = 21). Results: Reasons given by young people for stopping ADHD medication included the following: the perceived balance between benefits and adverse effects of medication; perceptions of ADHD as a childhood or educational disorder; life circumstance of the young person and challenges young people faced in accessing services. Conclusions: A multidimensional approach is needed to address discontinuation of ADHD medication in order to improve the long‐term prospects and quality of life for these young people. Possible approaches include access to non‐pharmacological treatments and improved psychoeducation. As many reasons given by young people are not unique to ADHD, these findings are also of relevance to medication adherence in other chronic childhood conditions. [ABSTRACT FROM AUTHOR]

Objective To summarize the parenting intervention literature for parents of children aged 2-10 years (mean age <10 years) with type 1 diabetes and to evaluate intervention efficacy in improving a range of parent, family and child outcomes. The present review de-emphasizes the traditional medical approach to illness management summarized in previous reviews and focuses on parenting factors identified in the literature as important to diabetes management. This review article is important as it outlines the present state of parenting intervention literature for this population. Methods Electronic searches were conducted for seven databases (Cumulative index to nursing and allied health literature, MEDLINE, PsycINFO, PubMed, Scopus, The Cochrane library and Web of Science) from their start dates until April 2014. Reference lists of all included papers were also searched for potentially relevant articles. Results Seven papers, representing six studies, met the inclusion criteria. Three studies primarily focused on improving parenting practices. The intervention programmes described in the remaining studies comprised multiple components; thus, it is difficult to establish the contribution of the parenting components to improving outcomes. Conclusions Parenting interventions may help to improve responsibility sharing and cooperation in diabetes management, child behaviour difficulties, parental behaviour, parents' psychological distress and child health outcomes. This review suggests the need for further well-designed trials of parenting interventions to determine their specific contribution to improving outcomes for this population. [ABSTRACT FROM AUTHOR]

Background In the last decade, the number of children with life-limiting and life-threatening conditions in England has almost doubled, and it is estimated that worldwide, there are 1.2 million children with palliative care needs. Families and professionals caring for children with life-limiting conditions are likely to face a number of difficult treatment decisions and develop plans for future care over the course of the child's life, but little is known about the process by which these decisions and plans are made. Methods The purpose of this review is to synthesize findings from qualitative research that has investigated decision-making and future planning for children with life-limiting conditions. A systematic search of six online databases was conducted and identified 887 papers for review; five papers were selected for inclusion, using predefined criteria. Reference list searching and contacting authors identified a further four papers for inclusion. Results Results sections of the papers were coded and synthesized into themes. Nineteen descriptive themes were identified, and these were further synthesized into four analytical themes. Analytical themes were 'decision factors', 'family factors', 'relational factors' and 'system factors'. Conclusions Review findings indicate that decision-making and future planning is difficult and needs to be individualized for each family. However, deficits in understanding the dynamic, relational and contextual aspects of decision-making remain and require further research. [ABSTRACT FROM AUTHOR]

Background: Parental self‐efficacy describes parents' self‐perceived competence in fulfilling their roles. The Parenting Sense of Competence Scale (PSOC) is one of the most commonly used self‐report instruments, allowing for parental self‐efficacy measurement. Methods: This paper summarizes the results of three studies (total N = 2088) conducted to examine factor structure, internal consistency, test–retest reliability and criterion validity of the Polish version of PSOC (PSOC‐PL). The studies were carried out among parents (mothers and fathers) of typically developing 14‐ and 15‐year‐olds (Study 1, n = 1404) as well as among parents of typically developing children aged 6–16 (Study 2, n = 248), parents of typically developing children and children with a diagnosis of autism spectrum disorder (Study 3, n = 436, ages ranged from 6 to 13). Results: Confirmatory factor analysis (Study 1) demonstrated an acceptable fit of the theorized two‐factor model, with theorized Satisfaction and Efficacy factors. The subscales' internal consistencies were satisfactory across all studies (Studies 1–3), and PSOC's test–retest reliability (Study 2) over a 3‐week interval was very high. Parents of children with developmental disorders (Study 3) reported lower efficacy than parents of typically developing children. Conclusions: The results of these three studies attest that the Polish version of PSOC is a reliable and valid measure of parental self‐efficacy beliefs. [ABSTRACT FROM AUTHOR]

Children and young people can be valuable partners in research, giving their unique perspectives on what and how research should be done. However, disabled children are less commonly involved in research than their non-disabled peers. This review investigated how disabled children have been involved as research partners; specifically how they have been recruited, the practicalities and challenges of involvement and how these have been overcome, and impacts of involvement for research, and disabled children and young people. The INVOLVE definition of involvement and the Equality and Human Rights Commission definition of disability were used. Relevant bibliographic databases were searched. Websites were searched for grey literature. Included studies had involved disabled children and young people aged 5-25 years in any study design. Reviews, guidelines, reports and other documents from the grey literature were eligible for inclusion. Twenty-two papers were included: seven reviews, eight original research papers, three reports, three guidelines and one webpage. Nine examples of involvement were identified. Recommendations included developing effective communication techniques, using flexible methods that can be adapted to needs and preferences, and ensuring that sufficient support and funding is available for researchers undertaking involvement. Positive impacts of involvement for disabled children included increased confidence, self-esteem and independence. Positive impacts for research were identified. Involving disabled children in research can present challenges; many of these can be overcome with sufficient time, planning and resources. More needs to be done to find ways to involve those with non-verbal communication. Generally, few details were reported about disabled children and young people's involvement in studies, and the quality of evidence was low. Although a range of positive impacts were identified, the majority of these were authors' opinions rather than data. There remains scope for methodological research to inform appropriate approaches to public and patient involvement in childhood disability research. [ABSTRACT FROM AUTHOR]

Background: Children have the right to health and countries a duty under the United Nations Convention on the Rights of the Child to facilitate this. The European Union has emphasized the importance of investing in children, but at times this seems more wish than pragmatism. Furthermore, European statistical systems do not provide any relevant data, and the degree of unmet need has hitherto been unknown. However, new ad hoc household survey data have now been published by Eurostat showing the percentage of children with a purported unmet medical or dental need and the expressed reasons for this. Method: This paper critically reviews these data on children with a reported unmet medical or dental need to create an indication of the number of European children with unmet medical and dental needs, and the contributory factors. Results: This paper calculates that some 1 million European children can be estimated to have an unmet medical need and 2 million children an unmet dental need, though the survey approach has some weaknesses. A probable overestimate of children affected in sample households offsets the likely failure to capture data about children in institutions, homeless, or in fractured families, or about multiple needs. The reported reasons for not obtaining treatments are a valuable first step in highlighting an important issue for Europe's children—measurement of service accessibility. Conclusion: Potentially over 3 million European Union children are failing to have their health needs and their rights met. If the incoming European Commission is serious about its predecessor's promise to invest in children and to take seriously their rights, action is needed to improve quantification of unmet need and to reduce suffering and potential lasting damage. [ABSTRACT FROM AUTHOR]

While children in general are usually seen as a societal priority, many children are disadvantaged by marginalization, with adverse effects on health and development. Following feasibility studies, the European Commission has now adopted a formal Child Guarantee of service access. This paper links the Feasibility Studies to other reports on the need to address marginalized and institutionalized children. The problems in identifying and quantifying such children are outlined, as are the challenges of planning for these groups of children and the difficulty of finding universal definitions and data. This European Union initiative is timely, given that around a quarter of European children are marginalized, while the effects of Covid‐19 will add to this marginalization. [ABSTRACT FROM AUTHOR]

Background: Advancing physical therapy interventions for children and young people is a high research priority. This includes research to describe and specify the control condition, typically 'current care', for effectiveness trials. This paper aims to identify physical therapy outcomes commonly targeted, and intervention techniques and approaches commonly used, by physiotherapists working with children (aged 2–19 years) with mobility limitations in the United Kingdom. Methods: A cross‐sectional survey. Participants were recruited through the interactive Chartered Society of Physiotherapy members‐only online discussion forum, the Association of Paediatric Chartered Physiotherapists, direct emails and snowball sampling within the authors' professional networks and Twitter. Data were collected using a structured online questionnaire and analysed using descriptive statistics. Results: We received 146 responses, 95/146 (65.1%) of which were fully complete. Therapists reported targeting 367 unique outcome constructs, of which 193 (52.6%) mapped onto activities and participation (e.g. moving around using equipment, maintaining body position and walking), 158 (43.1%) on body functions (e.g. muscle strength, joint mobility and gait functions), 11 (3.0%) on body structure (e.g. muscle length) and 3 (0.8%) on environmental factors (e.g. access home environment, access school environment and family confidence). The most commonly used interventions related to postural management (115/133 of respondents, 86.4%) and exercise therapy (116/137, 84.67%) and included techniques such as 'use equipment' (118/137, 86.1%), 'instruct how to do something' (117/137, 85.4%), 'practice' (105/137, 76.6%) and 'stretch' (99/137, 72.3%). Conclusions: In designing trials, current care can be described as a combination of biomechanical and physiological techniques and approaches targeted at body functions and through that to activity and participation. Although some environmental behaviour change techniques and strategies were reported, the explicit use of these in current care appears limited. [ABSTRACT FROM AUTHOR]

Background: Consensus opinion supports standing frame use as part of postural management for nonambulant young people with cerebral palsy. Most young people with cerebral palsy in the United Kingdom, who use standing frames, use them at nursery or school, rather than at home. In this paper we report professionals' and parents' experiences and views of standing frame use specifically in educational settings. This research was conducted as part of a large mixed methods study to determine the acceptability and inform the design of a future trial of standing frames. Methods: Qualitative methods were used: focus groups with educational professionals, parents and clinicians (paediatricians, physiotherapists and occupational therapists) were convened. Data were analysed thematically using framework analysis. Results: Five focus groups were conducted. The overarching theme "flexibility" encompassed four subordinate themes: (i) "balancing education and therapy," which described the way education professionals had to juggle different priorities from health professionals within a multi‐disciplinary team; (ii) "young people's autonomy," which highlighted participants' belief that standing frame use should be centred on the individual young person and their needs; (iii) "working within logistical boundaries," which demonstrated that "ideal" standing frame use was not always possible due to logistical issues (e.g., staffing and standing frame availability); and (iv) "competence and confidence," which highlighted that educational professionals felt that they lacked the training to confidently position young people in their standing frame. Conclusions: This paper highlights the complexity of standing frame use in the educational setting. If a standing frame programme is prescribed to be delivered in an educational setting, strong multidisciplinary and interagency communication is essential to balance therapy versus education. Training is required to ensure staff are competent in using the standing frame with the young person understanding their individual requirements. A flexible approach—inclusive of the young person's needs, logistical demands and resource—is necessary. [ABSTRACT FROM AUTHOR]

Descriptive title: Parents of children with rare diseases face pervasive challenges in meeting medical and social care needs. Existing research on the parents' experience of caring for a child with a rare disease is limited. This paper offers suggestions for better supporting families living with rare disease as well as possible avenues of future research. Background: Parents of children with rare diseases face pervasive challenges in meeting medical and social care needs. Existing research on the parent's experience of caring for a child with a rare disease is limited. Methods: An interpretive phenomenological approach was applied in this inquiry. Fifteen parents of children with rare diseases participated in semistructured interviews. Results: Interpretive thematic analysis revealed that due to the rarity of the disease and an overall lack of knowledge of the disease, there is an increase in the burden on the family in relation to "rarity" in addition to "disability." Four insights were also revealed: (a) Parents often know more about the disease then Health Care providers, and this leads to entanglements in communication and collaboration as experts and parents; (b) there is lack of coordination of care between providers and services caring for children with rare diseases; (c) there is a gap in accessibility to government supports; and (d) due to fragmented care, parents must fill the aforementioned gaps by juggling multiple roles including that of advocate, case manager, and medical navigator. Conclusion: This paper offers suggestions for better supporting families living with rare disease as well as possible avenues of future research. [ABSTRACT FROM AUTHOR]

The article presents the cover of the magazine along with editorial staff.

Background: As the prevalence of paediatric dysphagia increases, the need for long‐term non‐oral feeding has also increased. Despite these developments, little is known about caregiver experiences of transitioning a child onto long‐term non‐oral feeds, and the factors which influence the process of decision‐making and the provision of consent to do so. This paper aims to explore these factors. Methods: Semi‐structured interviews were conducted with nine participants recruited from the multidisciplinary out‐patient non‐oral feeding clinic at a hospital. Interviews explored caregiver experiences of decision‐making and the process of providing consent when transitioning their child to non‐oral feeds, as well as the support structures available to the caregivers. Interviews were audio recorded and transcribed, then analyzed using thematic analysis (Braun & Clarke, 2013) and content analysis (Neuendorf, 2016). Results: Challenges to care and quality of life, access to information and culturally relevant counselling, and the involvement of family members and significant others emerged as prominent themes. Findings suggest that quality of life was the most common motivating factor for transitioning a child to non‐oral feeding methods. Several participants suggested that support and information sharing via digital platforms were both useful and effective. Implications: The findings highlight caregivers' needs for improved access to information and social support. The findings hold implications for training of healthcare providers working in similar contexts and for models of service delivery which ensure that family‐centred intervention can be delivered in culturally and contextually relevant ways. With widespread access to smartphones, counselling should include digital messaging as a way of providing support and information sharing. Future research should focus on the complexities of counselling and the process of informed consent in settings impacted by diverse cultural, contextual and linguistic barriers, as well as the potential value of mobile health (mhealth) in ensuring improved health outcomes. [ABSTRACT FROM AUTHOR]

Background: Healthcare professionals are ideally placed to discuss weight management with children and families to treat and prevent childhood obesity. The aim of this review was to collect and synthesize primary research evidence relating to health professional's views and experiences of discussing weight with children and their families. Methods: Systematic searches were conducted using the following databases: MEDLINE (OVID), Cumulative Index to Nursing and Allied Health Literature (CINAHL), EMBASE (OVID), PsycINFO (OVID) and Healthcare Management Information Consortium (HMIC). Twenty‐six full text qualitative studies published in English Language journals since inception to October 2019 were included. Papers were quality assessed and synthesized using an inductive thematic analysis approach. Results: Data analysis generated five themes: sensitivity of the issue, family–professional relationships, whole systems approach, professional competency and sociocultural context. Conclusion: Supporting behaviour change through discussion of healthy weight with children and families is an important part of the health professional's role. Tailored information for professionals, including resources and training, facilitates them to confidently talk to children and families about weight prioritized within interventions. The success of such interventions requires commitment from a range of professionals to ensure healthy weight is tackled through a whole system approach. [ABSTRACT FROM AUTHOR]

Background: University researchers worked with 13 children's service provider agencies to conduct a programme evaluation of parents' perceptions of the family‐centredness of service spanning 3 years (January 2015 to May 2018). Parents of Ontario children with autism spectrum disorder (ASD) receiving applied behaviour analysis (ABA) programming reported outcomes of their experience of family‐centred services (FCS) using the 20‐item Measure of Processes of Care (MPOC‐20). The purpose of this paper is to report the outcomes of the quality assurance evaluation of FCS as measured by MPOC‐20 among parents of children with ASD receiving ABA services. Methods: A total of 11 490 surveys (from 21 571 potential respondents [53.3%]) were completed. Means and proportions were used to describe the demographics, service utilization and MPOC‐20 scores with its 7‐point Likert scales, ranging from 1 (lowest) to 7 (highest). Results: The overall provincial MPOC scores were consistent over the 3 years, ranging from very good to excellent, with Respectful and Supportive Care (n = 11 348, x¯ = 6.27, SD = 0.83) reporting the highest scale score and Providing General Information (n = 10 485, x¯ = 5.51, SD = 1.43) the lowest. Conclusion: Given the consistently high MPOC scores found in this and other programme evaluations, it is believed that health service providers have caught up to the FCS quality standards proposed 30 years ago. For this reason, the developers of MPOC are now planning a revision of the measure to address its ceiling effects and to integrate contemporary perspectives on family‐centred practice for children and their families. [ABSTRACT FROM AUTHOR]

Background: Families and professionals caring for a child without a definitive diagnosis face unique challenges, particularly in relation to managing uncertainty; access to healthcare; obtaining relevant information and support; and trying to navigate a healthcare system that is often fragmented. We used co‐design to inform the establishment of the first UK specialist nursing post dedicated to working with children with undiagnosed genetic conditions and their families. Objectives: (1) To understand what families and hospital staff want from the service; (2) To understand how the post should be operationalized in practice; (3) To develop the job description and person specification for the postholder. Methods: A range of approaches were used to collect data: interviews (nine parents and 10 hospital staff); a focus group (three parents); a creative workshop (six patients and siblings); and an online forum (81 parents). Data were analyzed using framework and thematic analysis. The strands of data were brought together and reviewed as a whole to formulate the postholder's job description and person specification. Results: Stakeholders identified nine key elements to the role which were incorporated into the job description: practical support; point of contact; community liaison; signposting to other services; care coordination; supporting families; advocacy; raising awareness; and emotional support. Conclusions: Highlighted in this paper are the practical aspects of engaging and involving all relevant stakeholders in the process of co‐designing a new post and subsequent staff recruitment. The flexibility employed in the setting and methods of data collection were instrumental in ensuring that the views of a diverse range of participants were ascertained. A major consideration is the resources required to undertake co‐design, in terms of time and finances. We believe that the resources required for the co‐design are offset by the advantages of having the right person in the right post, doing the right job. [ABSTRACT FROM AUTHOR]

There is increased awareness that attention deficit hyperactivity disorder ( ADHD) continues into adulthood. Thus, health services are faced with a new challenge in providing a 'smooth' transition to adult services appropriate for young people with ADHD. This scoping review sought to identify the literature addressing transition for young people with ADHD to adult mental health services ( AMHS). A scoping review, in which the search terms ' ADHD' and ' Transition' or ' Transfer' were entered into eight healthcare publication databases facilitated by NHS Evidence to identify both published and unpublished papers between 2000 and June 2013. Additional informal searches were also undertaken. Twenty-three papers were selected for this review. This review confirms the lack of research explicitly tracking transition from Paediatrics/ Child and Adolescent Mental Health Services ( CAMHS) to AMHS for young people with ADHD. Only four papers directly studying transition for ADHD patients were identified. Three further studies surveyed clinician perspectives. Taken together, the studies address a number of issues in relation to transition, including the developmental course of ADHD symptoms, appropriate adult care, knowledge and communication, unmet need, comorbidities, environmental demands and medication cessation/dosage during the transition period. While literature surrounding transition exists, the scope of the evidence showing successful and unsuccessful transition activity from Paediatric and CAMHS to AMHS for young people with ADHD is limited. Future quality research in the form of audits, longitudinal tracking studies and service evaluations are required if we are truly to understand and identify what is needed and currently available for successful transition to an appropriate adult service for ADHD patients. [ABSTRACT FROM AUTHOR]

Abstract: Background: Advances in medical knowledge have contributed to the increase in the number of children living with some form of long‐term chronic illness or condition. As a consequence of these advancements, treatments that are more accessible and easier to administer, usually within a child's home, have been developed. However, this may mean that parents take on greater treatment responsibility and require extra time and energy to meet these tasks, additional to other responsibilities. This review paper aims to summarize and critique existing literature on working parents of children with a chronic condition, by focusing on patterns of parent work, the challenges experienced, and the flow‐on consequences to well‐being. Methods: Employing a narrative, meta‐synthesis of the current literature, this review identified 3 key themes related to working parents of children with chronic illness. Results: The paper first identifies that although employment is less common, these parents are not necessarily nonworking. Second, these parents experience numerous challenges including balancing work and family, time constraints, stress, and feelings of “doing it all.” And third, the above challenges lead to additional impacts on parental quality of life. Conclusions: This review summarizes what is currently known about work patterns, challenges, and consequences in parents of children with chronic conditions. Employment is clearly impacted for these parents. Although workplace challenges have been extensively researched, other challenges (eg, personal and family) and impacts on their well‐being have not. This review discusses the present standing of this research. It outlines the strengths and limitations of the current literature, makes recommendations for future research, and suggests theoretical and practical implications of the further findings. [ABSTRACT FROM AUTHOR]

Abstract: Background: There is an increasing recognition that sleep is an important aspect of health and well‐being, and this is particularly the case in infancy and early childhood where sleep behaviours and patterns can result in substantial problems. Methods: This paper draws on Wave 1, 2, and 3 data from Growing Up in Ireland, the national longitudinal study of children in Ireland to provide an overview of sleep patterns in a population of children aged 9 months (n = 11,112), 3 years (n = 9,790), and 5 years (n = 8,996). The anonymised data made available through the Irish Social Science Data Archive were analysed using descriptive statistics. Results: Findings from the analysis show that about two thirds of infants (66.9%; n = 7,433) and just under 3 quarters of children aged 3 years (72.8%; n = 7,127) go to sleep between 7:00 p.m. and 9:00 p.m. and about 3 quarters (78.6%; n = 7,070) of 5‐year‐old children are in bed by 9:00 p.m. Just under half of infants (48.5%; n = 5,000) wake up between 7:00 a.m. and 8:00 a.m. and 13.5% (n = 1,500) wake up between 6:00 a.m. and 7:00 a.m. More than 80% (n = 8,889) of mothers report their 9‐month‐old infant wakes up at least occasionally and 13.8% report it happens every night. Almost all infants nap during the daytime, with the majority (56.0%; n = 6,222) doing so for between 1 and 2 hours. About one third (65.4%; n = 6,402) of 3‐year‐olds take daytime naps, but only 5.0% (n = 449) of 5‐year‐olds do so. Substantial proportions of mothers report children's sleep patterns are at least a small problem for them (ranging from about 30% (n = 3,333) in infancy to 22% (n = 2,444) at 3 years and 12% (n = 1,079) at 5 years). Conclusions: These findings highlight a substantial unmet need, and it is suggested that public health nurses and health visitors have a key role to play in supporting positive sleep patterns in early childhood. [ABSTRACT FROM AUTHOR]

Background: Social support can be an important buffer to stress to parents when their child has a disability. Parent to parent (P2P) is an evidence‐based peer support program for parents of children with disabilities, where support is provided over the telephone. However, younger parents may prefer electronic communication platforms. Methods: This paper reports on the results of an online survey of P2P stakeholders regarding: How text‐based support is being used in P2P programs and whether text‐based support is perceived as providing benefits to parents of children with disabilities. A 13‐item survey was developed, which included 10 opportunities to provide Likert, nominal, ordinal and dichotomous responses, as well as three open‐ended questions. Thirty‐one P2P coordinators participated. Results: The majority of participants reported that text‐based support was provided regularly in support relationships, most frequently to parents between 25 and 34. The most common platforms used included email and text messages, private Facebook groups and the Facebook Messenger application. Participants indicated that most P2P programs did not have a written policy or guidelines regarding text‐based support. Qualitative themes of best practice, connection, (mis)understanding, convenience, preferences and privacy are also presented. Conclusion: Because parents of young children are frequently referred to P2P programs for information and support, it is important the P2P program adapts to the preferences of a new generation while continuing to provide reliable and effective support. (word count: 225). [ABSTRACT FROM AUTHOR]

Introduction: The input from practitioners in developmental assessment test revision is a crucial and leading component of the project. This paper highlights six key phases of the Griffiths III revision process and the value of having a guiding plan that includes test practitioner input. Methods: The revision of the Griffiths III consisted of six separate phases that were supported by practitioner and user input and feedback. These six phases and practitioner views ensured that the necessary core constructs and new areas for item development were included in the revised version. These processes also underscored the construct development and task review, item design, piloting and standardization of the revised version, as well as its production, release and subsequent training methods. Results: The six guiding phases provided a methodologically robust frame to the revision process. Practitioners valued an overall developmental measure with discrete data about and within the 'avenues of learning' allowing them to analyse a child's strengths and weaknesses. Communication with practitioners across the world demonstrated the wide disparity of culture and environments that the Griffiths Scales are deployed in. It is not possible to design a revised scale that is appropriate for all areas of use, so in this revision process, it was decided to design the scales as culturally fair as possible and support practitioners in other countries to translate and validate the scales for use. Conclusions: The revision of the Griffiths III found test users to be valuable sources of information on the basis of their experiences with the test and professional knowledge. Creating a continuous feedback mechanism within a phased process provided opportunities for the revision team to engage meaningfully with the data being obtained as well as test users to advance the scope and quality of the test. Revision teams are encouraged to consider the process and engagement methods explored in this study during their projects. [ABSTRACT FROM AUTHOR]

Background Early identification of children with potential development delay is essential to ensure access to care. The Ages & Stages Questionnaires (ASQ) is used as population outcome indicators in England as part of the 2.5-year review. Method The aim of this article was to systematically review the worldwide evidence for the psychometric properties of the ASQ third edition (ASQ-3TM) and the Ages & Stages Questionnaires®: Social-Emotional (ASQ:SE). Eight electronic databases and grey literature were searched for original research studies available in English language, which reported reliability, validity or responsiveness of the ASQ-3TM or ASQ:SE for children aged between 2 and 2.5 years. Twenty studies were included. Eligible studies used either the ASQ-3TM or the ASQ:SE and reported at least one measurement property of the ASQ-3TM and/or ASQ:SE. Data were extracted from all papers identified for final inclusion, drawing on Cochrane guidelines. Results Using 'positive', 'intermediate' and 'negative' criteria for evaluating psychometric properties, results showed 'positive' reliability values in 11/18 instances reported, 'positive' sensitivity values in 13/18 instances reported and 'positive' specificity values in 19/19 instances reported. Conclusions Variations in age or language versions used, quality of psychometric properties and quality of papers resulted in heterogeneous evidence. It is important to consider differences in cultural and contextual factors when measuring child development using these indicators. Further research is very likely to have an important impact on the interpretation of the ASQ-3TM and ASQ:SE psychometric evidence. [ABSTRACT FROM AUTHOR]

Background There is a growing impetus across the research, policy and practice communities for children and young people to participate in decisions that affect their lives. Furthermore, there is a dearth of general instruments that measure children and young people's views on their participation in decision-making. This paper presents the reliability and validity of the Child and Adolescent Participation in Decision-Making Questionnaire (CAP-DMQ) and specifically looks at a population of looked-after children, where a lack of participation in decision-making is an acute issue. Methods The participants were 151 looked after children and adolescents between 10-23 years of age who completed the 10 item CAP-DMQ. Of the participants 113 were in receipt of an advocacy service that had an aim of increasing participation in decision-making with the remaining participants not having received this service. Results The results showed that the CAP-DMQ had good reliability (Cronbach's alpha = 0.94) and showed promising uni-dimensional construct validity through an exploratory factor analysis. The items in the CAP-DMQ also demonstrated good content validity by overlapping with prominent models of child and adolescent participation (Lundy 2007) and decision-making (Halpern 2014). A regression analysis showed that age and gender were not significant predictors of CAP-DMQ scores but receipt of advocacy was a significant predictor of scores (effect size d = 0.88), thus showing appropriate discriminant criterion validity. Conclusion Overall, the CAP-DMQ showed good reliability and validity. Therefore, the measure has excellent promise for theoretical investigation in the area of child and adolescent participation in decision-making and equally shows empirical promise for use as a measure in evaluating services, which have increasing the participation of children and adolescents in decision-making as an intended outcome. [ABSTRACT FROM AUTHOR]

Background: The existing evidence is limited in terms of perspectives of preschool children with speech and language needs and their views on activities used to support their needs. This paper discusses a stream of work from the interdisciplinary research programme known as "Child Talk," based in England, UK. The overall purpose of this work stream was to gain the perspectives of preschool children aged 2 to 5 years and 11 months, with speech and language needs, to use in the development of an evidence‐based framework of activities. Methods: Twenty‐four preschool children with a variety of needs from diverse backgrounds took part. An observational methodology was used to capture children's experiences. Children were filmed during a series of sessions, with innovative head‐mounted cameras worn by the children and supported by researcher field notes. Framework analysis was used to analyse the data based on the body movement, vocalization, and visual attention of the children during these sessions. Results and Conclusions: Results included that children expressed enjoyment and engagement in the activities. The children expressed themselves and demonstrated their focus "multimodally" through combinations of body language, vocalization, and visual attention. These modalities were present across all contexts and children. It highlights the importance of encouraging participation in preschool children and consequently this innovative piece of work has national and international importance. [ABSTRACT FROM AUTHOR]

Background: Theory‐based interventions have been recommended to target relevant issues and improve outcomes in children and adolescents with Type 1 diabetes. Furthermore, the timing of interventions has been recognized as key to improving outcomes, suggesting a need to focus on preteens (9–12 years old) with Type 1 diabetes. The aim of the present study was to identify the theories that inform interventions targeting preteens with Type 1 diabetes and to analyse the studies for their understandings of theory. Methods: We conducted a systematic literature review of intervention studies targeting preteens with Type 1 diabetes to identify the theoretical frameworks applied. Seven databases across different scientific disciplines were searched for papers published between 1995 and 2018. Results: Twenty‐four studies were included in the review. Of these, 14 were categorized as theory‐inspired and 10 as theory‐related studies. Social cognitive theory appeared most frequently. Most studies did not provide a rationale for their choice and application of theory to inform interventions. The studies were characterized by use of adult‐centric theories and a focus on the relationships between children and their parents. Conclusions: The present review shows variations and limitations in the description and application of theories across interventions targeting preteens with Type 1 diabetes. This emphasizes the need for future studies to address for what reason and how a certain theory or method is applied. We suggest that interventions might benefit from using theories that are centred on the needs and experiences of children, target family dynamics that include all important family members, and address the mutually constitutive relationship between interventions and the social context in which they are implemented. [ABSTRACT FROM AUTHOR]

Background: Children and adolescents with neurodevelopmental disabilities may be less well integrated into their community than their peers. Online groups can be particularly accessible for individuals with neurodevelopmental disabilities, as individuals may be able to connect with a larger network than they would in their local community. This systematic review aimed at estimating the effectiveness of online peer mentorship programmes on children and adolescent's participation in life situations. Methods: A systematic review was conducted to search Medline, PsycINFO, Embase, CINAHL, and Education Research Complete (ERIC) electronic databases. Thematic analysis was done for studies that used qualitative methodology. Results: Eleven articles were included, and they examined the influences of five different structured online peer mentorship intervention programmes and six different online support groups. The disabilities included cerebral palsy (n = 3), autism spectrum disorder (n = 3), spina bifida (n = 2), attention deficit hyperactivity disorder (n = 2), and other neurodevelopmental disorders. The mentors included in the studies were caregivers of children with disabilities, youth and adults with disabilities, and a virtual peer actor. The mentees included in the studies were youth with disabilities (age 10–19 years) and their families. Intervention characteristics varied across the studies but consistently showed a unique potential to facilitate social networking and support. Intervention programmes with specific content and structure showed better participation outcomes than unstructured interventions. Presence of a moderator and participant characteristics (age and sociocultural background) was suggested to influence the outcomes of interventions. Conclusions: Online peer mentorship programmes appear to have positive influence on social engagement and participation in life situation for children and adolescents with disabilities. This paper discusses several areas that should be considered in future research studies to improve potential effectiveness and use of study designs that help to establish not only if interventions work but also for whom they work best and why. [ABSTRACT FROM AUTHOR]

Background: It is widely agreed that children's services should use participation‐focused practice, but that implementation is challenging. This paper describes a method for using audit and feedback, an evidence‐based knowledge translation strategy, to support implementation of participation‐focused practice in front‐line services, to identify barriers to implementation, and to enable international benchmarking of implementation and barriers. Method: Best‐practice guidelines for using audit and feedback were followed. For audit, participation‐focused practice was specified as clinicians' three observable behaviours: (a) targets participation outcomes; (b) involves child/parent in setting participation outcomes; and (c) measures progress towards participation outcomes. For barrier identification, the Theoretical Domains Framework Questionnaire (TDFQ) of known implementation barriers was used. A cycle of audit and barrier identification was piloted in three services (n = 25 clinicians) in a large U.K. healthcare trust. From each clinician, up to five randomly sampled case note sets were audited (total n = 122), and the clinicians were invited to complete the TDFQ. For feedback, data on the behaviours and barriers were shared visually and verbally with managers and clinicians to inform action planning. Results: A Method for using Audit and feedback for Participation implementation (MAPi) was developed. The MAPi audit template captured clinicians' practices: Clinicians targeted participation in 37/122 (30.3%) of the sampled cases; involved child/parent in 16/122 (13.1%); and measured progress in 24/122 (19.7%). Barriers identified from the TDFQ and fed back to managers and clinicians included clinicians' skills in participation‐focused behaviours (median = 3.00–5.00, interquartile range [IQR] = 2.25‐6.00), social processes (median = 4.00, IQR = 3.00–5.00), and behavioural regulation (median = 4.00–5.00, IQR = 3.00–6.00). Conclusions: MAPi provides a practical, off‐the‐shelf method for front‐line services to investigate and support their implementation of participation‐focused practice. Furthermore, as a shared, consistent template, MAPi provides a method for generating cumulative and comparable, across‐services evidence about levels and trends of implementation and about enduring barriers to implementation, to inform future implementation strategies. [ABSTRACT FROM AUTHOR]

Background: Preschool language and behavioural difficulties impact on multiple domains of the child's early life and can endure into adulthood, predicting poor educational, social, and health outcomes. Highlighting risk factors associated with poor outcomes following language and behavioural difficulties raised in early childhood may facilitate early identification and intervention. Methods: Data from the Growing Up in Scotland national birth cohort study were used. Language and behavioural difficulties were assessed at age 4 years using parent‐reported language concerns and the Strengths and Difficulties Questionnaire. Measures of adjustment were collated into four key outcome domains: attitude to school life, language and general development, behaviour, and general health at age 6 years. Both univariate and multivariate logistic regression models were fitted in order to explore independent associations between language and behavioural difficulties at age 4 years and adjustment to life circumstances at age 6 years, whilst controlling for other risk factors. Results: Language difficulties at age 4 years increased the odds of the child experiencing difficulty with language and general development, poorer health outcomes, and behavioural difficulties at age 6 years. Behavioural difficulties alone at age 4 years were associated with increased odds of the child experiencing all of the aforementioned outcomes and difficulties in early school life. Lone parent family, low income, and male gender were identified as risk factors for poorer outcomes in the domains measured. At age 4 years, there was no additive effect found with the presence of behaviour difficulties on the relationship between language difficulties and language and developmental outcomes at 6 years. Conclusions: This paper demonstrates language and behavioural difficulties are associated with poor social, educational, health, and behavioural outcomes. Taking seriously parent‐reported concerns and identifying risk factors could limit negative outcomes for the child, their family, and society. [ABSTRACT FROM AUTHOR]

Background: Children with chronic medical conditions often experience limited opportunities for social experiences due to frequent hospitalizations and medical appointments. Computer technology can provide valuable opportunities for social inclusion through online communities. However, moderation has been shown to be an important component of safe and successful use. This paper explores the potential of a social media platform technology, Upopolis, to promote social connection and health‐related management for children with chronic medical conditions, as well as the role of the coordinators who support children's use. Methods: This study conducted qualitative in‐depth, semi‐structured telephone interviews with hospital‐based child life specialists across Canada who acted as coordinators for Upopolis. Thematic analysis was employed on verbatim interview transcripts. Results: Seven Upopolis coordinators (n = 7 female) from across Canada participated in six telephone interviews. Four themes were identified: First, Upopolis offered opportunities for connection (social and emotional) through receiving and giving support to others in similar situations. Second, Upopolis was considered safe and reliable for younger children (under 12) within the broader social media landscape. Third, Upopolis was a helpful resource for children to learn about medical diagnoses and procedures, as well as for expressing their experiences and reducing isolation. Fourth, participants identified that time, misuse of technology, and technical problems were challenges to the successful coordination of Upopolis. Conclusions: Children with chronic medical conditions were reported to use Upopolis to develop a greater social community. Specialized websites such as Upopolis have the potential to offer a safe online social networking opportunity where children can discuss what is happening to them, compared with other mainstream social media platforms. Given the increase in technology use in health and high usage of social media among children generally, these data can potentially inform the development and implementation of other specialist health‐related online platforms for children with chronic medical conditions. [ABSTRACT FROM AUTHOR]

Background: Parenting stress is influenced by many factors including maternal attachment and excessive infant crying, yet the nature of these relationships is not well understood. For example, excessive infant crying despite maternal soothing may impact maternal attachment to the child, leading to higher stress. This paper explored whether maternal perception of excessive infant crying at 6 months was associated with higher maternal parenting stress at 24 months, and whether maternal attachment mediated this relationship. Methods: All families, present at 24 months in a randomized controlled trial of a 5‐year early intervention programme targeting school readiness skills in disadvantaged area of Ireland, were included. At 6 months, infant crying was assessed using a maternal reported measure of duration of infant crying, and maternal attachment to the infant was assessed using the Condon Maternal Attachment Scale. Parenting stress was assessed at 24 months using the childrearing stress subscale from the Parenting Stress Index. Structural equation modelling was used to explore the direct and indirect effects of maternal perceptions of excessive infant crying on parenting stress, controlling for infant, maternal, and environmental characteristics, and focusing on the mediating role of maternal attachment. Results: Reporting excessive infant crying at 6 months was associated with lower maternal attachment at 6 months, which led to higher parenting stress at 24 months. In addition, vulnerable adult attachment style, previous maternal mental health difficulties, low paternal education, paternal involvement with the child, and not being married were associated with higher parenting stress. Conclusion: Findings suggest that the association between maternal perceptions of excessive crying at 6 months and later parenting stress may be mediated through maternal attachment to the infant. Interventions based on improving maternal attachment could be investigated to determine the effectiveness of supporting mothers with low attachment. [ABSTRACT FROM AUTHOR]

Background: This systematic review explored the occurrence and types of somatic symptoms in children (0–20 years) who have experienced parental cancer. Methods: We complemented a systematic literature search from PubMed and PsycInfo with a reference search. We identified 1,694 articles, which were independently screened by two authors; they further evaluated potentially relevant papers for quality and extracted the data. We found nine relevant studies (10 publications) on altogether 672 children with a parent who had cancer; four studies included a control group. Results: The studies typically focused on children's psychosocial reactions on parental cancer rather than somatic complaints, so symptom prevalence cannot be reliably summarized. Several studies were small, and the types of somatic symptoms were only specified in five studies. Somatic symptoms were reported as a measure of emotional reactions in the remaining four studies. Three studies provided longitudinal data. The main types of specific symptoms reported were eating problems, pain, sleeping troubles, and bed‐wetting. Children of cancer patients tended to show an increase of unspecified somatic symptoms and pain, but evidence was inconsistent. There was a tendency that somatic complaints were associated with increased emotional distress in the children. The material did not allow for separate analysis by age group or bereavement status. Conclusions: Children in families with parental cancer may present with somatic complaints, but the prevalence and significance is not possible to estimate due to very sparse research in this area. Health professionals or counselling providers should not overlook this possible sign of distress. Qualitative studies report significant health anxiety in these children; this may represent a specific topic for counselling in this population. Targeted studies are needed to evaluate the prevalence and significance of somatic symptoms, and especially vulnerable groups need to be identified. [ABSTRACT FROM AUTHOR]