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Background Children with medical complexity (CMC) have a wide range of long term health problems and disabilities that have an adverse impact on their quality of life. They have high levels of family identified health care needs and health care utilisation. There is no Australian literature on the experiences of health care providers working in the Australian tertiary, secondary and primary health care system, whilst managing CMC. This information is essential to inform the design of integrated health care systems for these children. We address this knowledge gap by exploring the perceptions and experiences of health care providers on the provision of health care for CMC aged 0 to 18 years. Method A qualitative research study was undertaken. Stakeholder forums, group and individual in depth interviews were undertaken using a semi-structured interview guide. The stakeholder forums were audio recorded and transcribed verbatim. Field notes of the stakeholder forums, group and individual interviews were taken. Inductive thematic analysis was undertaken to identify key themes. Results One hundred and three providers took part in the stakeholder forums and interviews across 3 local health districts, a tertiary paediatric hospital network, and primary health care organisations. Providers expressed concern regarding family capacity to negotiate the system, which was impacted by the medical complexity of the children and psychosocial complexity of their families. Lack of health care provider capacity in terms of their skills, time and availability to manage CMC was also a key problem. These issues occurred within a health system that had impaired capacity in terms of fragmentation of care and limited communication among health care providers. Conclusion When designing integrated care models for CMC, it is essential to understand and address the challenges experienced by their health care providers. This requires adequate training of providers, additional resources and time for coordination of care, improved systems of communication among services, with timely access to key information for parents and providers.

Objective To systematically identify and synthesize peer‐reviewed qualitative evidence of the parental experience of hospitalization with a child with Intellectual Disability. Search strategy Key words, synonyms and MeSH subject headings that related to the three key concepts of parental experience, children with Intellectual Disability and hospital settings were applied to six electronic databases: Medline, CINAHL, Embase, PsycINFO, Scopus and Web of Science. Titles and s of publications between January 2000 and February 2019 were screened for relevance. Inclusion criteria Empirical qualitative research involved participants aged 0‐18 years, involved children with Intellectual Disability, involved participants hospitalized as an in‐patient and involved participants focused on parent perspective. Data extraction and synthesis Data were extracted and synthesized using a meta‐narrative approach. Results Eleven publications met the inclusion criteria. Data synthesis revealed three research traditions contributing to this meta‐narrative: Paediatric Nursing Practice, Intellectual Disability Healthcare and Patient Experience. A total of five themes were identified: (a) being more than a parent, (b) importance of role negotiation, (c) building trust and relationships, (d) the cumulative effect of previous experiences of hospitalization and (e) knowing the child as an individual. Discussion and conclusion This review presents a working model for professional‐parent partnership for the safe care of children with Intellectual Disability in hospital. Shifting paediatric healthcare to whole of hospital/multidisciplinary models of care that centre on the child will necessitate partnerships with the parent to identify and manage the needs of the child with Intellectual Disability, in order to achieve safe and equitable care for these children.

Background Over a third of Australian children have long-term health conditions, often involving multiple organ systems and resulting in complex health care needs. Our healthcare system struggles to meet their needs because of sectoral fragmentation and episodic models of care. Children with medical complexity (CMC) currently rely on tertiary paediatric hospitals for most of their healthcare, but this is not sustainable. We evaluated the impacts of Care Coordination on tertiary hospital service use and family outcomes. Methods A pre- and post-implementation cohort evaluation of the Care Coordination service at a tertiary paediatric hospital network, was undertaken. From July 2015 CMC enrolled in the service had access to a Care Coordinator, shared-care plans, linkage with local general practitioners (GPs), and access to a 24-h Hotline from August 2016. CMC were those with ≥4 emergency department (ED) presentations, hospital stays of ≥14 days, or ≥ 10 outpatient appointments in 12 months. Medically fragile infants at risk of frequent future hospital utilisation, and children with medical problems complicated by difficult family psychosocial circumstances were also included. Care Coordinators collected outcomes for each enrolled child. Administrative data on hospital encounters 6 months pre- and post-enrolment were analysed for children aged > 6 months. Results An estimated 557 hospital encounters, were prevented in the 6 months after enrolment, for 534 children aged > 6 months. ED presentations decreased by 40% (Chi 2  = 37.95; P  < 0.0001) and day-only admissions by 42% (Chi 2  = 7.54; P  < 0.01). Overnight admissions decreased by 9% but this was not significant. An estimated Au$4.9 million was saved over 2 years due to prevented hospital encounters. Shared-care plans were developed for 83.5%. Of 84 children who had no regular GP, 58 (69%) were linked with one. Fifty-five (10%) of families were linked to the 24-h Hotline to enable remote access to support and advice. Over 50,000 km of family travel and 370 school absences was prevented. Conclusions The Care Coordination service has clear benefits for the tertiary paediatric hospital network and for families. Ongoing evaluation is essential for continuous improvement and to support adjustments to the model according to the local context.

Objective We conducted a systematic review and meta-analysis to determine the effectiveness of comprehensive community-based interventions with ≥ 2 components in improving asthma outcomes in children. Methods A systematic search of Medline, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Excerpta Medica Database (EMBASE), Cochrane Library and hand search of reference collections were conducted to identify any research articles published in English between 2000 and 2019. All studies reporting community-based asthma interventions with ≥ 2 components (e.g., asthma self-management education, home environmental assessment or care coordination etc.) for children aged ≤ 18 years were included. Meta-analyses were performed using random-effects model to estimate pooled odds ratio (OR) with 95% confidence intervals (CIs). Results Of the 2352 studies identified, 21 studies were included in the final analysis: 19 pre-post interventions, one randomised controlled trial (RCT) and one retrospective study. Comprehensive asthma programs with multicomponent interventions were associated with significant reduction in asthma-related Emergency Department (ED) visits (OR = 0.26; 95% CI 0.20–0.35), hospitalizations (OR = 0.24; 95% CI 0.15–0.38), number of days (mean difference = − 2.58; 95% CI − 3.00 to − 2.17) and nights with asthma symptoms (mean difference = − 2.14; 95% CI − 2.94 to − 1.34), use of short-acting asthma medications/bronchodilators (BD) (OR = 0.28; 95% CI 0.16–0.51), and increase use of asthma action plan (AAP) (OR = 8.87; 95% CI 3.85–20.45). Conclusion Community-based asthma care using more comprehensive approaches may improve childhood asthma management and reduce asthma related health care utilization.

Background Parental concerns about their children’s development can be used as an indicator of developmental risk. We undertook a systematic review of the prevalence of parents’ concerns as an indicator of developmental risk, measured by the Parents’ Evaluation of Developmental Status (PEDS) and associated risk factors. Methods Electronic databases, bibliographies and websites were searched and experts contacted. Studies were screened for eligibility and study characteristics were extracted independently by two authors. A summary estimate for prevalence was derived. Meta-regression examined the impact of study characteristics and quality. Meta-analysis was used to derive pooled estimates of the impact of biological and psychosocial risk factors on the odds of parental concerns indicating high developmental risk. Results Thirty seven studies were identified with a total of 210,242 subjects. Overall 13.8% (95% CI 10.9 -16.8%) of parents had concerns indicating their child was at high developmental risk and 19.8% (95% CI 16.7-22.9%) had concerns indicating their child was at moderate developmental risk. Male gender, low birth weight, poor/fair child health rating, poor maternal mental health, lower socioeconomic status (SES), minority ethnicity, not being read to, a lack of access to health care and not having health insurance were significantly associated with parental concerns indicating a high developmental risk. Conclusions The prevalence of parental concerns measured with the PEDS indicating developmental risk is substantial. There is increased prevalence associated with biological and psychosocial adversity. Trial registration PROSPERO Registration: CRD42012003215 .

Introduction Biomedical progress has facilitated breakthrough advanced neurotherapeutic interventions, whose potential to improve outcomes in rare neurological diseases has increased hope among people with lived experiences and their carers. Nevertheless, gene, somatic cell and other advanced neurotherapeutic interventions carry significant risks. Rare disease patient organizations (RDPOs) may enhance patient experiences, inform expectations and promote health literacy. However, their perspectives are understudied in paediatric neurology. If advanced neurotherapeutics is to optimize RDPO contributions, it demands further insights into their roles, interactions and support needs. Methods We used a mixed‐methodology approach, interviewing 20 RDPO leaders representing paediatric rare neurological diseases and following them up with two online surveys featuring closed and open‐ended questions on advanced neurotherapeutics (19/20) and negative mood states (17/20). Qualitative and quantitative data were analysed using thematic discourse analysis and basic descriptive statistics, respectively. Results Leaders perceived their roles to be targeted at educational provision (20/20), community preparation for advanced neurotherapeutic clinical trials (19/20), information simplification (19/20) and focused research pursuits (20/20). Although most leaders perceived the benefits of collaboration between stakeholders, some cited challenges around collaborative engagement under the following subthemes: conflicts of interest, competition and logistical difficulties. Regarding neurotherapeutics, RDPO leaders identified support needs centred on information provision, valuing access to clinician experts and highlighting a demand for co‐developed, centralized, high‐level and understandable, resources that may improve information exchange. Leaders perceived a need for psychosocial support within themselves and their communities, proposing that this would facilitate informed decision‐making, reduce associated psychological vulnerabilities and maintain hope throughout neurotherapeutic development. Conclusion This study provides insights into RDPO research activities, interactions and resource needs. It reveals a demand for collaboration guidelines, central information resources and psychosocial supports that may address unmet needs and assist RDPOs in their advocacy. Patient or Public Contribution In this study, RDPO leaders were interviewed and surveyed to examine their perspectives and roles in advanced neurotherapeutic development. Some participants sent researchers postinterview clarification emails regarding their responses to questions.

Background Numerous systematic reviews have shown home visiting interventions to be effective at improving a variety of parent and child outcomes. No review has, however, examined the impact of home visiting programs targeting child (aged 0–5 years) mental health, socioemotional and/or developmental outcomes in the context of families with high vulnerability and complex needs. Method A systematic review and meta-analysis were undertaken to examine and synthesize the literature on home visiting programs administered by professionals/paraprofessionals for families with young children, high vulnerability, and complex needs. PsychInfo, Scopus, Embase, PubMed, and CINAHL were searched through August 2023. A manual review was also undertaken of the reference lists of the articles selected for the review and the Home Visiting Evidence of Effectiveness 2023 review/database. English language studies were included if they were evaluated with a group of participants (case studies were excluded), reported results of home visiting intervention targeted at improving mental health and psychosocial outcomes of caregivers and/or developmental outcomes for children (aged 0–4 years 11 months) of families with high vulnerability and complex needs. Two independent reviewers extracted data and assessed for risk of bias. Qualitative results were consolidated narratively while a meta-analysis was used to synthesize quantitative results. Results Initial searches identified 623 articles, of which 22 were included in the final review. Findings showed that 18 different home visiting interventions have been implemented with families with high vulnerability and complex needs, and that these interventions are effective at improving a variety of child outcomes. The meta-analysis showed that the weighted mean standardised effect sizes ranged from -0.31 to 0.20, with only one of the four outcomes (i.e., socioemotional and/or behavioural outcomes) being significantly different from 0 (standardised mean difference -0.31; 95% CI: -0.49, -0.13; z  = 3.45, p  = 0.00). High intervention variability and missing information meant that it was not possible to determine clear patterns regarding features that led to effective versus non-effective interventions. Conclusion Taken together, results indicate that there is some evidence showing that home visiting interventions targeted at families with high vulnerability and complex needs can be effective at improving some child outcomes. More research is required to solidify findings. Trial registration The University of York Centre for Reviews and Dissemination (PROSPERO) registration number CRD42023460366.

ObjectiveTo examine and synthesise the literature on adverse childhood experience (ACE) screening in clinical and healthcare settings servicing children (0–11) and young people (12–25).DesignA systematic review of literature was undertaken.Data sourcePsycInfo, Web of Science, Embase, PubMed and CINAHL were searched through June 2021. Additional searches were also undertaken.Eligibility criteriaEnglish language studies were included if they reported results of an ACE tool being used in a clinical or healthcare setting, participants were aged between 0 and 25 years and the ACE tool was completed by children/young people or by parents/caregivers/clinicians on behalf of the child/young person. Studies assessing clinicians’ views on ACE screening in children/young people attending health settings were also included.Data extraction and synthesisTwo independent reviewers extracted data and assessed for risk of bias using the Mixed Methods Appraisal Tool. Results were synthesised qualitatively.ResultsInitial searches identified 5231 articles, of which 36 were included in the final review. Findings showed that the most commonly used tool for assessing ACE was the ACE questionnaire; administering ACE tools was found to be feasible and acceptable; there were limited studies looking at the utility, feasibility and acceptability of assessing for ACE in First Nations people; and while four studies provided information on actions taken following ACE screening, no follow-up data were collected to determine whether participants accessed services and/or the impact of accessing services.ConclusionAs the evidence stands, widespread ACE screening is not recommended for routine clinical use. More research is needed on how and what specific ACE to screen for and the impact of screening on well-being.PROSPERO registration numberUniversity of York Centre for Reviews and Dissemination (CRD42021260420).

To identify and describe caregiver perspectives on factors important for the health and wellbeing of urban Aboriginal children. Caregivers of Aboriginal children participating in the Study of Environment on Aboriginal Resilience and Child Health (SEARCH) were asked to describe the single most important factor that would help their children to be healthy and well. Responses were analysed using thematic and content analysis. Of the 626 carers in SEARCH, 425 (68%) provided a response. We identified 13 factors related to: loving family relationships, culturally competent healthcare, food security, active living, community services, education, social and emotional connectedness, safety, breaking cycles of disadvantage, housing availability and affordability, positive Aboriginal role models, strong culture, and carer wellbeing. Aligning with holistic concepts of health, caregivers believe that a broad range of child, family and environmental‐level factors are needed to ensure the health and wellbeing of Aboriginal children. This study highlights the importance of providing public health initiatives that enable equal access to the social determinants of health for carers of Aboriginal children. Affordable and adequate housing, food security, culturally appropriate healthcare, and family and community connectedness remain critical areas for targeted initiatives.

IntroductionAdvances in the care of patients with single-ventricle congenital heart disease have led to a new generation of individuals living with a Fontan circulation. For people with Fontan physiology, physical, psychological and neurodevelopmental challenges are common. The objective of this study is to describe and develop a deeper understanding of the factors that contribute to quality of life (QOL) among children, adolescents and adults living with a Fontan circulation across Australia and New Zealand, their parents and siblings.Methods and AnalysisThis article presents the protocol for the Australian and New Zealand Fontan Registry (ANZFR) QOL Study, a cross-sectional, population-based study designed to examine QOL among people of all ages with a Fontan circulation, their parents and siblings. Study eligibility criteria includes (1) individuals with a Fontan circulation aged ≥6 years, at least 12 months post-Fontan procedure and enrolled in the ANZFR; (2) parents of individuals enrolled in the ANZFR; and (3) siblings aged ≥6 years of an individual enrolled in the ANZFR. A novel, online research platform is used to distribute personalised assessments tailored to participant age and developmental stage. A suite of validated psychometric self-report and parent-proxy report instruments capture potential correlates and predictors of QOL, including symptoms of psychological distress, personality attributes, coping and cognitive appraisals, family functioning, healthcare experiences and costs, access to emotional support and socioeconomic factors. Clinical characteristics are captured via self-report and parent-proxy report, as well as the ANZFR. Descriptive analyses and multilevel models will be used to examine QOL across groups and to investigate potential explanatory variables.Ethics and DisseminationApproval has been obtained from all relevant Human Research Ethics Committees (HRECs), including the Sydney Children’s Hospitals Network and the Royal Children’s Hospital Melbourne HRECs. Study findings will be published in peer-reviewed journals and presented at national and international meetings and seminars.