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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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Perceptions of two different alcohol use behaviours in pregnancy: an application of the prototype/willingness modelThis study explored whether exposure to either an ‘ambiguous consumption’ prototype (no amount of alcohol specified) or a ‘small consumption’ prototype (‘small’ amount of alcohol specified) had an impact on prototype perceptions of, and willingness to use, small amounts of alcohol during pregnancy.
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Research opportunities for the primary prevention and management of acute rheumatic fever and rheumatic heart disease: a National Heart, Lung, and Blood Institute workshop reportPrimary prevention of acute rheumatic fever (ARF) and rheumatic heart disease (RHD) encompasses the timely diagnosis and adequate treatment of the superficial group A Streptococcus (GAS) infections pharyngitis and impetigo. GAS is the only known inciting agent in the pathophysiology of the disease.
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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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Time-out for well-being: A mixed methods evaluation of attitudes and likelihood to engage in different types of online emotional well-being programmes in the perinatal periodPositive maternal mental health during the perinatal period contributes to general well-being and positive emotional bonds with the child, encouraging an optimal developmental trajectory. Online interventions to enhance maternal well-being and develop coping skills, such as meditation-based interventions, can be a low-cost way to improve mother and child outcomes.
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Parental Challenges, Facilitators and Needs Associated with Supporting and Accepting Their Trans Child’s GenderParental support is strongly correlated with protective factors for trans youth yet most experience parental rejection or ambivalence regarding their gender. Many parents report a desire to support their child but indicate lack of understanding and support as key barriers. We aimed to develop a nuanced understanding of the challenges and facilitators experienced by Australian parents in developing understanding, support and acceptance of their child’s gender and their needs to do so.
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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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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.