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Objective To elicit patient safety issues pertaining to children and young people with intellectual disability in hospital from healthcare staff perspectives. This follows a previous paper of parent interviews of patient safety experiences of their child in hospital.Design Qualitative study.Setting We conducted semi-structured interviews and focus groups of staff of tertiary children’s hospitals based on the domains of the Patient Safety Education Framework and using the framework methodology for data analysis.Participants There were 29 female and 7 male staff aged between 27 and 70 years from a range of departments and specialties including ancillary staff.Intervention Questions based on the patient safety framework were developed from consultation with parents, researchers and clinicians exploring staff views and experiences of safety and quality care of these children in hospital. During April 2021 to May 2022, 22 interviews and 3 focus groups were conducted of staff who have had experience caring for children and young people with intellectual disability in the last 12 months in the hospital.Results Key themes elicited include Definition of Safety, Need to consider additional vulnerabilities of children and young people with intellectual disability in hospital, Communication is key to safe care, Parent and family perspectives on safe care, Management challenges compromising safety and Service system gaps in preventing, identifying and managing risk.Conclusions Staff need to consider additional vulnerabilities, mitigate negative attitudes and biases towards better engagement and relationships with parents, children and young people of this population. Improvement of current systems that prevent the identification, prevention and management of risk and safety issues for this population need to be undertaken. Future developments include combining data from parent interviews, academic and grey literature in developing safety competencies in this population for training and education of staff across the health system.

Objectives Early developmental assessment is crucial for effective support and intervention. This study examined factors that contribute to (a) older child age when caregivers first became concerned about their child’s development and (b) older child age at the point of entry into developmental and diagnostic assessment. We also quantified how factors contributed to risk of children not receiving an assessment by 5 years and considered the acceptability of electronic data capture for families.Design This cross-sectional study collected information about caregiver developmental concerns, family history and child characteristics.Setting Children and families entered a large, publicly funded hospital-based paediatric developmental assessment service.Participants Consecutively enrolled children (N=916) aged 6 months to 17 years with neurodevelopmental concerns and their caregivers.Main outcomes and measures A developmental history questionnaire completed by caregivers.Results The average age that caregivers identified developmental concerns was 3.0 years of age but the average age of a receiving a developmental assessment was 6.6 years. Only 46.4% of children received a diagnostic assessment by 5 years of age, even though 88.0% of caregivers were concerned about their child’s development by that age. Parental age, relationship status, education level, prior use of support services and being from a culturally and linguistically diverse background contributed to age at identification of concern, age at diagnostic assessment and the likelihood of receiving a diagnostic assessment by 5 years. Electronic data capture had high acceptability, with 88.2% of caregivers reporting a preference for electronic completion of questionnaires.Conclusions The study shows a substantial delay in diagnostic assessments that leaves most vulnerable children without an assessment by school age and highlights contributors to delays. These delays highlight the complexity of delivering early intervention and support policies that rely on swift and appropriate developmental assessment to vulnerable families.

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).

Introduction The increasing prevalence of developmental disorders in early childhood poses a significant global health burden. Early detection of developmental problems is vital to ensure timely access to early intervention, and universal developmental surveillance is recommended best practice for identifying issues. Despite this, there is currently considerable variation in developmental surveillance and screening between Australian states and territories and low rates of developmental screening uptake by parents. This study aims to evaluate an innovative web-based developmental surveillance programme and a sustainable approach to referral and care pathways, linking primary care general practice (GP) services that fall under federal policy responsibility and state government-funded child health services.Methods and analysis The proposed study describes a longitudinal cluster randomised controlled trial (c-RCT) comparing a ‘Watch Me Grow Integrated’ (WMG-I) approach for developmental screening, to Surveillance as Usual (SaU) in GPs. Forty practices will be recruited across New South Wales and Queensland, and randomly allocated into either the (1) WMG-I or (2) SaU group. A cohort of 2000 children will be recruited during their 18-month vaccination visit or opportunistic visit to GP. At the end of the c-RCT, a qualitative study using focus groups/interviews will evaluate parent and practitioner views of the WMG-I programme and inform national and state policy recommendations.Ethics and dissemination The South Western Sydney Local Health District (2020/ETH01625), UNSW Sydney (2020/ETH01625) and University of Queensland (2021/HE000667) Human Research Ethics Committees independently reviewed and approved this study. Findings will be reported to the funding bodies, study institutes and partners; families and peer-reviewed conferences/publications.Trial registration number ANZCTR12621000680864.