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Down syndrome or Rett syndrome in the family: Parental reflections on sibling experience

Siblings of children with intellectual disability have unique family experiences, varying by type of disability.

Special Issue on the Challenges for family and child well‐being in the new era

Citation: Li J, Rönkä A, Han WJ. Special Issue on the Challenges for family and child well‐being in the new era. International Journal of Social

“Sometimes Our Mob Don't Really Take It Serious Until It's Serious”: The Experiences of Western Australian Aboriginal Adolescents Living With Type 2 Diabetes, Their Parents, and Their Family Members

In Australia, Aboriginal children experience disproportionate rates of type 2 diabetes (T2D) compared with non-Aboriginal children. The aim of this qualitative study was to explore the experiences of Aboriginal adolescents with T2D and their family members to better understand the influences of T2D on self-management, with findings used to inform an enhanced service model of care.

Health Outcomes of Children Living in Out-of-Home Care in Metropolitan Western Australia: A Sequential Mixed-Methods Study—A Protocol Paper

The research protocol described aims to examine and establish the health outcomes of children and young people living in Out-of-Home Care (OOHC) in Perth, Western Australia from the perspective of the care recipients and service providers. A Study Advisory Panel will be established comprised of Aboriginal Elders (because of the over-representation of Aboriginal children in OOHC), health professionals and other relevant stakeholders to help co-design all phases of the study.

Improving the capacity of researchers and bereaved parents to co-design and translate stillbirth research together

Working with bereaved parents in co-designed stillbirth research, policy and practice is essential to improving care and outcomes. 

Exploring Exclusive Breastfeeding and Childhood Cancer Using Linked Data

Citation: Bailey HD. Exploring Exclusive Breastfeeding and Childhood Cancer Using Linked Data. JAMA Netw Open. 2024;7(3):e243075 Keywords:

The Koolungar Moorditj Healthy Skin Project: Elder and Community Led Resources Strengthen Aboriginal Voice for Skin Health

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.

Ngulluk Moort, Ngulluk Boodja, Ngulluk Wirin (our family, our country, our spirit): An Aboriginal Participatory Action Research study protocol

We are working with the leadership and staff at foster care agencies and community members to provide information about cultural connection, and cultural activity and resources for Aboriginal children living in non-Aboriginal care arrangements.

Pandemic preparedness needs for children with rare diseases and their families: A perspective of COVID-19 experiences

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.

Cohort profile: The WAACHS Linked Data Study

Despite the volume of accumulating knowledge from prospective Aboriginal cohort studies, longitudinal data describing developmental trajectories in health and well-being is limited.