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People living with rare diseases had a high risk of negative health outcomes due to COVID-19. Pandemic preparedness will ensure best practice procedures and optimal outcomes during future pandemic events. This paper sought to understand the needs of children with rare diseases during the COVID-19 pandemic to inform preparation for future pandemic and disaster events. First, impacts and outcomes from the COVID-19 pandemic on people living with rare disease were identified in the literature.
Despite the volume of accumulating knowledge from prospective Aboriginal cohort studies, longitudinal data describing developmental trajectories in health and well-being is limited.
Skin infections affect physical health and, through stigma, social-emotional health. When untreated, they can cause life-threatening conditions. We aimed to assess the effect of a holistic, co-designed, region-wide skin control programme on the prevalence of impetigo.
Substantial progress in adolescent health research has been made over recent decades, but important knowledge gaps remain.
In partnership with local Aboriginal Community Controlled Health Organisations, the Elder-led co-designed Koolungar Moorditj Healthy Skin project is guided by principles of reciprocity, capacity building, respect, and community involvement. Through this work, the team of Elders, community members, clinicians and research staff have gained insight into the skin health needs of urban-living Aboriginal koolungar (children); and having identified a lack of targeted and culturally appropriate health literacy and health promotion resources on moorditj (strong) skin, prioritised development of community-created healthy skin resources.
Healthy skin is important for maintaining overall physical and cultural health and wellbeing. However, remote-living Australian Aboriginal children contend with disproportionally high rates of Streptococcus pyogenes (Strep A) infected impetigo.
Fetal alcohol spectrum disorder (FASD) is a lifelong disability of varying severity that occurs among individuals prenatally exposed to alcohol. Among Aboriginal and Torres Strait Islander (Indigenous) Australians, the effects of colonisation and ongoing racism could increase the risk of alcohol consumption during pregnancy.
To assess the prevalence, clinical features and treatment of otitis media (OM) among Aboriginal children in the Kimberley region of Western Australia, and to determine if a correlation exists between OM and protracted bacterial bronchitis.
While benefits of involving consumers in research are well established, bereaved parents face unique challenges, and descriptions of their experiences with co-designed stillbirth research are lacking. The collective experience of ‘Project Engage’ involved co-designing resources to support bereaved parents’ involvement in research.
This chapter outlines the concept of ‘justice capital’. It commences with a discussion of the impacts of colonization on Indigenous people in Australia, with a particular focus on Indigenous children placed in state care systems.