What do parents think about the quality and safety of care provided by hospitals to children and young people with an intellectual disability? A qualitative study using thematic analysis.

OBJECTIVES: Children with intellectual disability experience patient safety issues resulting in poor care experiences and health outcomes. This study sought to identify patient safety issues that pertain to children aged 0-16 years with intellectual disability admitted to two tertiary state-wide children's hospitals and a children's palliative care centre; to describe and understand these factors to modify the Australian Patient Safety Education Framework to meet the particular needs for children and young people with intellectual disability. DESIGN, SETTING AND PARTICIPANTS: Parents of children with intellectual disability from two paediatric hospitals and a palliative care unit participated in semi-structured interviews to elicit their experiences of their child's care in the context of patient safety. Thirteen interviews were conducted with parents from various backgrounds with children with intellectual, developmental and medical diagnoses. RESULTS: Eight themes about safety in hospital care for children and young people with intellectual disability emerged from thematic analyses: Safety is not only being safe but feeling safe; Negative dismissive attitudes compromise safety, quality and care experience; Parental roles as safety advocates involve being heard, included and empowered; Need for purposeful and planned communication and care coordination to build trust and improve care; Systems, processes and environments require adjustments to prevent patient safety events; Inequity in care due to lack of resources and skills, Need for training in disability-specific safety and quality issues and Core staff attributes: Kindness, Patience, Flexibility and Responsiveness. Parents highlighted the dilemma of being dismissed when raising concerns with staff and being required to provide care with little support. Parents also reported a lack of comprehensive care coordination services. They noted limitations within the healthcare system in accommodating reasonable adjustments for a family and child-centred context. CONCLUSIONS: The development of an adapted Patient Safety Education Framework for children with intellectual disability should consider ways for staff to transform attitudes and reduce bias which leads to adaptations for safer and better care. In addition, issues that apply to quality and safety for these children can be generalised to all children in the hospital. PATIENT AND PUBLIC CONTRIBUTION: Parent advocates in the project advisory team were shown the questions to determine their appropriateness for the interviews.

Open disclosure of adverse events: exploring the implications of service and policy structures on practice.

PURPOSE: The aim of this study was to explore the service and policy structures that impact open disclosure (OD) practices in New South Wales (NSW), Australia. PARTICIPANTS AND METHODS: An explorative study using semi-structured interviews was undertaken with 12 individuals closely involved in the implementation of OD in hospitals at policy or practice levels within the state of NSW, Australia. Interviews explored the service and policy structures surrounding OD and the perceived impact of these on the implementation of the OD policy. These data were thematically analyzed to understand the factors facilitating and creating barriers to openness after adverse events. RESULTS: The data identified three key areas in which greater alignment between OD policy and the wider service and policy structures may enhance the implementation of OD practice: 1) alignment between OD and root cause analysis processes, 2) holistic training that links to other relevant processes such as communicating bad news, risk management, and professional regulation and insurance, and 3) policy clarification regarding the disclosure of incidents that result in no or low-level harm. CONCLUSION: Evidence from this study indicates that formal OD processes are not routinely applied after adverse events in NSW, despite clear guidelines for OD. The reasons for this are unclear as the service-level and policy-level phenomena that support or hinder OD are understudied. This knowledge is critical to addressing the policy-practice gap. Our paper provides insights regarding the influence of current service-level and policy-level phenomena on the delivery of OD and how policy clarification may contribute to addressing some of the challenges for implementing OD policy. The principles of virtue ethics - specifically, openness and the involvement of service users - may contribute to progressing in this area.

A one health exploration of the reasons for low cocoa productivity in West Sulawesi.

We conducted an interdisciplinary One Health study of potential links between agricultural, health and associated livelihood factors on the livelihoods of smallholder cocoa-growing families in West Sulawesi. Our 2017 survey of 509 cocoa smallholder family members in 120 households in Polewali-Mandar District, West Sulawesi, Indonesia showed that farmers face many challenges to improving their livelihoods, including land management, agricultural practices, nutrition and human health, animal health, aging and demographic changes. Price fluctuations, limited access to capital and poor health deterred farmers from applying agricultural inputs and resulted in levels of low cocoa production (275 kg/annum per household). While market demand for live goats in the region is substantial and expected to increase, uptake of mixed farming with goats by smallholders was low. However, most households kept chickens. Bank accounts were held by 31% of households. Inadequate sanitation and unsafe water were reported in >50% households. Anthropometric measures showed that 42% of children under five years were significantly stunted and 32% of women were overweight. Joint, back pain and blurry vision were reported by 30% of adult respondents. High blood pressure contributed to complications in 20% of pregnancies. Primary health care provided by district health services mainly focuses on maternal and child health, leaving chronic health problems such as Type 2 diabetes, cataracts, arthritis and mental illness under-diagnosed, and if diagnosed, with inadequate treatment. Availability of food was a source of worry for 58% of households with 63% reporting limited food variety. Dietary diversity was low with an average of four out of ten food categories consumed in each household. Positive correlations were recorded for household cocoa productivity, land size, dietary diversity and perceptions that food availability and variety was sufficient. The results showed that an integrated One Health approach provides deep understanding of priority areas for improving livelihoods.