Parental experience of an early developmental surveillance programme for autism within Australian general practice: a qualitative study.

OBJECTIVES: Implementing support and services early in the life course has been shown to promote positive developmental outcomes for children at high likelihood of developmental conditions including autism. This study examined parents'/caregivers' experiences and perceptions about a digital developmental surveillance pathway for autism, the autism surveillance pathway (ASP), and usual care, the surveillance as usual (SaU) pathway, in the primary healthcare general practice setting. DESIGN: This qualitative study involves using a convenience selection process of the full sample of parents/caregivers that participated in the main programme, 'General Practice Surveillance for Autism', a cluster-randomised controlled trial study. All interviews were audio-recorded, transcribed and coded using NVivo V.12 software. An inductive thematic interpretive approach was adopted and data were analysed thematically. PARTICIPANTS: Twelve parents/caregivers of children with or without a developmental condition/autism (who participated in the main programme) in South Western Sydney and Melbourne were interviewed. SETTINGS: All interviews were completed over the phone. RESULTS: There were seven major themes and 20 subthemes that included positive experiences, such as pre-existing patient-doctor relationships and their perceptions on the importance of knowing and accessing early support/services. Barriers or challenges experienced while using the SaU pathway included long waiting periods, poor communication and lack of action plans, complexity associated with navigating the healthcare system and lack of understanding by general practitioners (GPs). Common suggestions for improvement included greater awareness/education for parents/carers and the availability of accessible resources on child development for parents/caregivers. CONCLUSION: The findings support the use of digital screening tools for developmental surveillance, including for autism, using opportunistic contacts in the general practice setting. TRIAL REGISTRATION NUMBER: ANZCTR (ACTRN12619001200178).

'Smiles and laughter and all those really great things': Nurses' perceptions of good experiences of care for inpatient children and young people with intellectual disability.

AIM: To understand what constitutes a good experience of care for inpatient children and young people with intellectual disability as perceived by nursing staff. DESIGN: Interpretive qualitative study. METHODS: Focus groups with clinical nursing staff from speciality neurological/neurosurgical and adolescent medicine wards across two specialist tertiary children's hospitals in Australia were conducted between March and May 2021. Data analysis followed interpretative analysis methods to develop themes and codes which were mapped to a conceptual model of safe care. RESULTS: Six focus groups with 29 nurses of varying experience levels were conducted over 3 months. Themes and codes were mapped to the six themes of the conceptual model: use rapport, know the child, negotiate roles, shared learning, build trust and relationships, and past experiences. The analysis revealed two new themes that extended the conceptual model to include; the unique role of a paediatric nurse, and joy and job satisfaction, with a third contextual theme, impacts of COVID-19 pandemic restrictions. With the perspectives of paediatric nurses incorporated into the model we have enhanced our model of safe care specifically for inpatient paediatric nursing care of children and young people with intellectual disability. CONCLUSION: Including perceptions of paediatric nurses confirmed the position of the child with intellectual disability being at the centre of safe care, where care is delivered as a partnership between nursing staff, child or young person and their parents/family and the hospital systems and processes. IMPACT: The enhanced model offers a specialized framework for clinical staff and health managers to optimize the delivery of safe care for children and young people with intellectual disability in hospital.

Connecting healthcare with income maximisation services, and their financial, health and well-being impacts for families with young children: a systematic review protocol.

INTRODUCTION: Poverty has far-reaching and detrimental effects on children's physical and mental health, across all geographies. Financial advice and income-maximisation services can provide a promising opportunity for shifting the physical and mental health burdens that commonly occur with financial hardship, yet awareness of these services is limited, and referrals are not systematically integrated into existing healthcare service platforms. We aim to map and synthesise evidence on the impact of healthcare-income maximisation models of care for families of children aged 0-5 years in high-income countries on family finances, parent/caregiver(s) or children's health and well-being. METHODS AND ANALYSIS: To be included in the review, studies must be families (expectant mothers or parents/caregivers) of children who are aged between 0 and 5 years, accessing a healthcare service, include a referral from healthcare to an income-maximisation service (ie, financial counselling), and examine impacts on child and family health and well-being. A comprehensive electronic search strategy will be used to identify studies written in English, published from inception to January 2021, and indexed in MEDLINE, EMBase, PsycINFO, CINAHL, Proquest, Family & Society Studies Worldwide, Cochrane Library, and Informit Online. Search strategies will include terms for: families, financial hardship and healthcare, in various combinations. Bibliographies of primary studies and review articles meeting the inclusion criteria will be searched manually to identify further eligible studies, and grey literature will also be searched. Data on objective and self-reported outcomes and study quality will be independently extracted by two review authors; any disagreements will be resolved through a third reviewer. The protocol follows the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols. ETHICS AND DISSEMINATION: Ethical approval is not required. The results will be disseminated widely via peer-reviewed publication and presentations at conferences related to this field. PROSPERO REGISTRATION NUMBER: CRD42020195985.

Taking Paediatrics Abroad: Working with low- and middle-income countries in a global pandemic.

Children and young people around the world face challenges to their health and wellbeing. In particular, in low- and middle-income countries they experience a higher burden of disease, exacerbated by global inequity limiting access to quality health care. According to the inverse care law, the availability of quality health care varies inversely to the need of the population, and hardworking health-care professionals in under-resourced countries may face impediments to continued education or subspecialty training. In line with the Sustainable Development Goals, collaborations have been developed between high-income and low- and-middle-income countries to address global disparities in health. These collaborations face challenges of high financial costs, difficulties creating long-term sustainable change, and with the emergence of the COVID-19 pandemic, border closures preventing fly-in volunteers. In this paper, we describe the development of an innovative, paediatric-specific model of care for training and support between high- and low-income countries - Taking Paediatrics Abroad Ltd. Taking Paediatrics Abroad supports the development of mutually beneficial relationships between Australian paediatric health-care professionals and paediatric health-care professionals in developing countries and remote, underserved Australian Aboriginal communities. Since May 2020, there have been over 100 sessions covering a vast array of paediatric specialties. This article explores Taking Paediatrics Abroad's model of care, its implementation and challenges, and opportunities for the future.

Study protocol for the Healthier Wealthier Families (HWF) pilot randomised controlled trial: testing the feasibility of delivering financial counselling to families with young children who are identified as experiencing financial hardship by community-based nurses.

INTRODUCTION: Poverty and deprivation can harm children's future health, learning, economic productivity and societal participation. The Australian Healthier Wealthier Families project seeks to reduce the childhood inequities caused by poverty and deprivation by creating a systematic referral pathway between two free, community-based services: universal, well-child nursing services, which provide health and development support to families with children from birth to school entry, and financial counselling. By adapting the successful Scottish 'Healthier Wealthier Children' model, the objectives of this Australian pilot are to test the (1) feasibility of systematising the referral pathway, and (2) short-term impacts on household finances, caregiver health, parenting efficacy and financial service use. METHODS AND ANALYSIS: This pilot randomised controlled trial will run in three sites across two Australian states (Victoria and New South Wales), recruiting a total of 180 participants. Nurses identify eligible caregivers with a 6-item, study-designed screening survey for financial hardship. Caregivers who report one or more risk factors and consent are randomised. The intervention is financial counselling. The comparator is usual care plus information from a government money advice website. Feasibility will be evaluated using the number/proportion of caregivers who complete screening, consent and research measures, and access financial counselling. Though powered to assess feasibility, impacts will be measured 6 months post-enrolment with qualitative interviews and questionnaires about caregiver-reported income, loans and costs (adapted from national surveys, for example, the Household, Income and Labour Dynamics in Australia Survey); health (General Health Questionnaire 1, EuroQol five-dimensional questionnaire, Depression, Anxiety, Stress Scale short-form); efficacy (from the Longitudinal Study of Australian Children); and financial service use (study-designed) compared between arms. ETHICS AND DISSEMINATION: Ethics committees of the Royal Children's Hospital (HREC/57372/RCHM-2019) and South West Sydney Local Health District (2019/ETH13455) have approved the study. Participants and stakeholders will receive results through regular communication channels comprising meetings, presentations and publications. TRIAL REGISTRATION NUMBER: ACTRN12620000154909; prospectively registered. Pre-results.

Impact of the COVID-19 pandemic on the well-being of children with neurodevelopmental disabilities and their parents.

AIMS: To examine the impact of COVID-19 pandemic on child mental health and socio-emotional and physical well-being (including sleep, diet, exercise, use of electronic media; care giver perceptions of symptoms of child neurodevelopmental disability [NDD] and comorbidities), and care giver mental health and well-being, social support and service use. METHODS: An online cross-sectional self-report survey was distributed via disability service providers and support groups. Care givers of children aged 2-17 years with a NDD were invited to respond to questions on child symptom severity and well-being, parent well-being and service access and satisfaction. RESULTS: Overall, 302 care givers (94.7% female) completed the survey. Average child age was 9.7 years and 66.9% were male. Worsening of any child NDD or comorbid mental health symptom was reported by 64.5% of respondents and 76.9% reported child health and well-being was impacted by COVID-19. Children were viewing more television and digital media (81.6%), exercising less (68.0%), experiencing reduced sleep quality (43.6%) and had a poorer diet (32.4%). Almost one fifth (18.8%) of families reported an increase in the dosage of medication administered to their child. Parents reported COVID-19 had impacted their own well-being (76.1%). Over half of respondents were not satisfied with services received during COVID-19 (54.8%) and just 30% reported that telehealth works well for their child. CONCLUSION: Targeted interventions are required to address worsening child neurodevelopmental disability, mental health symptoms and poor diet, sleep and exercise patterns. Improved access to telehealth services is indicated, as is further research on barriers and enablers of effective telehealth services.

COVID-19 pandemic: The impact on vulnerable children and young people in Australia.

The COVID-19 pandemic and associated system disruptions are impacting all children and young people (CYP) in Australia. For vulnerable groups of CYP, who already experience poorer health and well-being, these impacts are amplified. Challenges include reduced access to usual services, reduced community supports, financial instability, unemployment and other life circumstances that threaten to widen pre-existing inequities. This article aims to present the reasons for vulnerability of CYP during the pandemic, and to focus on actions by health professionals that mitigate additional challenges to their health and well-being. Using a rapid review of the literature and team-based discussions, eight vulnerable groups were identified: CYP with disabilities, mental health conditions and chronic diseases; CYP facing financial hardship; within the child protection system; Aboriginal; migrant and refugee; in residential care; rural; and isolated CYP. Recommendations for action are required at the level of governments, health professionals and researchers and include enhancing access to health and social supports, prioritising vulnerable CYP in resuming health activity and elevating the voice of CYP in designing the response. The pandemic can be conceptualised as an opportunity to create a more equitable society as we document the inequities that have been exacerbated. Vulnerable groups of CYP must be recognised and heard, and targeted actions must focus on improving their health outcomes during the pandemic and beyond.