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COVID-19 in Western Australia: ‘The last straw’ and hopes for a ‘new normal’ for parents of children with long-term conditions

Children with long-term conditions are vulnerable due to the treatments required for their conditions. Since the start of the coronavirus disease 2019 (COVID-19) pandemic, Western Australians experienced restrictions that changed daily life activities but were able to return to some of their previous routines due to the restrictions.

Transition models of care for type 1 diabetes: a systematic review

Managing the care regimen for Type 1 Diabetes is challenging for emerging adults, as they take on greater responsibility for self-management. A diverse range of models of care have been implemented to improve safety and quality of care during transition between paediatric and adult services. However, evidence about acceptability and effectiveness of these is limited.

Priority setting for children and young people with chronic conditions and disabilities

The aim of this project was to identify the top 10 priorities for childhood chronic conditions and disability (CCD) research from the perspectives of children and young people with lived experience, their parents and caregivers and the professionals who work with them.

Environmental Determinants of Islet Autoimmunity (ENDIA) longitudinal prospective pregnancy to childhood cohort study of Australian children at risk of type 1 diabetes: parental demographics and birth information

The Environmental Determinants of Islet Autoimmunity Study is an ongoing Australian prospective cohort study investigating how modifiable prenatal and early-life exposures drive the development of islet autoimmunity and type 1 diabetes in children. In this profile, we describe the cohort's parental demographics, maternal and neonatal outcomes and human leukocyte antigen genotypes. 

"i Think i Could Have Used It Better": Experiences of Youth with High HbA1c Commencing Advanced Hybrid Closed-Loop Therapy in a Clinical Trial Setting - A Qualitative Research

Advanced hybrid closed-loop (AHCL) therapy improves glycemia. However, it is not known if there is an improvement in overall outcomes with AHCL for youth with type 1 diabetes (T1D) at high risk of diabetes-related complications. The study aimed to capture the experiences of youth with suboptimal glycemic control when commencing AHCL therapy in a clinical trial setting. 

Contributions of digital technologies for resilience capacity in a type 1 diabetes transition clinic: A qualitative study

A type 1 diabetes (T1D) transition clinic in Sydney, Australia, provides age specific care for young adults (aged 16-25 years) and for adults (aged 21 years and above), and has reported improved clinical outcomes post transition to adult care over a 21-year period. This study investigated the contribution of digital technology to long-term resilient capacity of the clinic.

Behavior Change Techniques Involved in Physical Activity Interventions for Children with Chronic Conditions: A Systematic Review

Behavior change techniques (BCTs) have been extensively used in physical activity interventions for children, however, no systematic reviews have synthesized their effects.

Development of a Model of Care resource for FASD in the justice system

This article describes the development of a Model of Care resource to support youth involved with the justice system where a neurodevelopmental disability such as Fetal Alcohol Spectrum Disorder is suspected. Service staff within the Youth Justice sector were engaged in an iterative process of resource development over a 9-month period.

Coping Compass: co-designing a brief online positive psychology programme for youth with chronic conditions

This article presents a case study of a 12-month co-design process with young people (16–25) living with chronic health conditions to create an online, self-guided intervention based on positive psychology. Following an established framework for co-designing with vulnerable consumers, the co-design process was designed with stakeholders to promote accessibility and maximise youth engagement in the design of the programme. 

Perceived stress in mothers of children with and without islet and coeliac autoimmunity in the ENDIA study

We aimed to assess perceived stress and influencing factors in mothers with children at risk of type 1 diabetes and coeliac disease who did, or did not, develop islet autoantibodies or coeliac autoantibodies by 4 years of age.