What matters to parents? A scoping review of parents' service experiences and needs regarding genetic testing for rare diseases
E Crellin, M Martyn, B McClaren, C Gaff - European Journal of Human …, 2023 - nature.com
Patient care experiences are key to promoting better outcomes and are an essential
consideration for successful implementation of genomics in paediatric care. To understand …
consideration for successful implementation of genomics in paediatric care. To understand …
From biocolonialism to emancipation: considerations on ethical and culturally respectful omics research with indigenous Australians
As part of a (bio) colonial project, the biological information of Indigenous Peoples has
historically been under scientific scrutiny, with very limited benefits for communities and …
historically been under scientific scrutiny, with very limited benefits for communities and …
Investigating disparity in access to Australian clinical genetic health services for Aboriginal and Torres Strait Islander people
J Luke, P Dalach, L Tuer, R Savarirayan… - Nature …, 2022 - nature.com
Globally, there is a recognised need that all populations should be able to access the
benefits of genomics and precision medicine. However, achieving this remains constrained …
benefits of genomics and precision medicine. However, achieving this remains constrained …
[HTML][HTML] “Somewhere to turn to with my questions”: A pre-post pilot of an information linker service for caregivers who have a child with a Developmental and Epileptic …
EG Robertson, NJ Roberts, F Le Marne… - European Journal of …, 2023 - Elsevier
Background Caregivers of a child with a Developmental and Epileptic Encephalopathy
(DEE) often report challenges accessing relevant and understandable information regarding …
(DEE) often report challenges accessing relevant and understandable information regarding …
Parental perceptions, attitudes, and beliefs regarding vaccination of children aged 0–5 years: A qualitative study of hill-tribe communities, Thailand
K Moonpanane, J Thepsaw, K Pitchalard… - Human Vaccines & …, 2023 - Taylor & Francis
The widespread availability and use of vaccines have tremendously reduced morbidity and
deaths related to infectious diseases globally. However, in hill-tribe communities in Northern …
deaths related to infectious diseases globally. However, in hill-tribe communities in Northern …
Exploring self-determined solutions to service and system challenges to promote social and emotional wellbeing in Aboriginal and Torres Strait Islander people: a …
Introduction Many Aboriginal and Torres Strait Islander people living on Kaurna Country in
northern Adelaide experience adverse health and social circumstances. The Taingiwilta …
northern Adelaide experience adverse health and social circumstances. The Taingiwilta …
[HTML][HTML] An Exploration of the Goodness of Fit of Web-Based Tools for Māori: Qualitative Study Using Interviews and Focus Groups
L Donkin, MC Bidois-Putt, H Wilson… - JMIR Formative …, 2024 - formative.jmir.org
Background: Indigenous communities often have poorer health outcomes and services
under traditional models of care. In New Zealand, this holds true for Māori people who are …
under traditional models of care. In New Zealand, this holds true for Māori people who are …
Genetic counseling workforce diversity, inclusion, and capacity in Australia and New Zealand
A Kanga-Parabia, L Mitchell, R Smyth, T Kapoor… - Genetics in Medicine …, 2024 - Elsevier
Purpose To understand diversity, inclusion, and capacity of genetic counselors (GCs) in
Australasia (Australia and New Zealand). Methods Individuals with or working towards a GC …
Australasia (Australia and New Zealand). Methods Individuals with or working towards a GC …
Attendance at, and experiences of, urban hospital outpatient appointments: informing a new model of care for urban-dwelling Aboriginal and Torres Strait Islander …
Objectives To compare outpatient attendance rates for Aboriginal and Torres Strait Islander
('Aboriginal') and non-Aboriginal patients at a large metropolitan health service in …
('Aboriginal') and non-Aboriginal patients at a large metropolitan health service in …
[PDF][PDF] Supporting Indigenous health equity strategic planning: a Queensland perspective
Indigenous-led strategies to advance health equity for Aboriginal and Torres Strait Islander
people (hereafter respectfully referred to as Indigenous people) on paper and in practice …
people (hereafter respectfully referred to as Indigenous people) on paper and in practice …