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Research
Rare disease education in Europe and beyond: time to actPeople living with rare diseases (PLWRD) still face huge unmet needs, in part due to the fact that care systems are not sufficiently aligned with their needs and healthcare workforce (HWF) along their care pathways lacks competencies to efficiently tackle rare disease-specific challenges. Level of rare disease knowledge and awareness among the current and future HWF is insufficient.
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Knowledge is Power: Trans Young People’s Perceptions of Parental Reactions to Their Gender Identity, and Perceived Barriers and Facilitators to Parental SupportParental support is strongly correlated with protective factors for trans youth, however, most experience unsupportive parental attitudes. We aimed to better understand how youth perceive parental reactions to their gender identity disclosure and what they consider to be barriers to, and facilitators of, support.
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Modalities of group A streptococcal prevention and treatment and their economic justificationInfection by group A Streptococcus (Strep A) results in a diverse range of clinical conditions, including pharyngitis, impetigo, cellulitis, necrotising fasciitis, and rheumatic heart disease. In this article, we outline the recommended strategies for Strep A treatment and prevention and review the literature for economic evaluations of competing treatment and prevention strategies.
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Kids Voices, the perioperative experience of emergency surgery from children's perspectives: A qualitative studyThe study aimed to better understand children's emergency perioperative experience, a little researched topic. Current literature shows discrepancies between child and adult perceptions for the same healthcare experience. Acquisition of knowledge from the child's perspective can be utilized to improve perioperative care.
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Implementing a combined individual placement and support and vocational peer work program in integrated youth mental health settingsTo describe the implementation and outcomes of a combined individual placement and support (IPS) and vocational peer work program for young people with mental ill-health.
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Arsenic and respiratory diseaseArsenic is the only environmental toxin that has been linked to both malignant and nonmalignant respiratory disease following ingestion, rather than inhalation, making arsenic a unique toxicant to the respiratory system. Chronic exposure to arsenic has been associated with the development of respiratory symptoms, impaired lung function, and chronic lung disease.
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A study protocol for community implementation of a new mental health monitoring system spanning early childhood to young adulthoodFindings from longitudinal research, globally, repeatedly emphasise the importance of a taking an early life course approach to mental health promotion; one that invests in the formative years of development, from early childhood to young adulthood, just prior to the transition to parenthood for most. While population monitoring systems have been developed for this period, they are typically designed for use within discrete stages.
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Projected health impact of post-discharge malaria chemoprevention among children with severe malarial anaemia in AfricaChildren recovering from severe malarial anaemia (SMA) remain at high risk of readmission and death after discharge from hospital. However, a recent trial found that post-discharge malaria chemoprevention (PDMC) with dihydroartemisinin-piperaquine reduces this risk. We developed a mathematical model describing the daily incidence of uncomplicated and severe malaria requiring readmission among 0-5-year old children after hospitalised SMA.
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The neglect of a child with intellectual disability as reported in Australian news media: A Foucauldian discourse analysisPeople with intellectual disability experience a high risk of being neglected and family members are often identified as the perpetrators. Analysing the media provides insight into public narratives about social problems. A search of Australian newspapers published between 2016 and 2021 identified 27 articles that predominately reported on a single case of familial neglect of an individual with intellectual disability.
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Murru Minya-informing the development of practical recommendations to support ethical conduct in Aboriginal and Torres Strait Islander health research: a protocol for a national mixed-methods studyConducting ethical and high-quality health research is crucial for informing public health policy and service delivery to reduce the high and inequitable burden of disease experienced by Aboriginal and Torres Strait Islander people.