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WA Child Research Fund grants boost research for premmies, kids with cancer and rare diseases

The Kids Research Institute Australia researchers have been awarded 12 of 16 grants under the latest round of funding from the WA Child Research Fund

The Kids Research Institute Australia researchers share in TPCHRF funding

Eight The Kids Research Institute Australia researchers are among those who have received grant funding from the Telethon-Perth Children’s Hospital Research Fund (TPCHRF).

Eating and exercise experiences of Australian trans and gender diverse folks: lived experience and stakeholder perspectives

Trans individuals face elevated health risks and socio-environmental challenges, influencing their engagement in health-protective behaviors (e.g. exercise and nutrition). Despite these challenges, there is a significant gap in understanding the specific eating and exercise experiences of Australian trans adults, including barriers to healthy behaviors and healthcare experiences. This study aims to address this gap by exploring these experiences, informing targeted interventions and healthcare practices to improve health outcomes.

"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.

Effect of sitting posture on development of scoliosis in duchenne muscular dystrophy cases

This study assessed the contribution of physical factors including lumbar posture to scoliosis in non-ambulatory youth with DMD in Nepal.

Exploring the associations between coping, resilience, well-being and glycaemic control in adolescents with type 1 diabetes and their parents

Keely Leanne Bebbington Fried MClinPsych/PhD BSc DipEd MSpEd EdD McCusker Postdoctoral Research Fellow in Type 1 Diabetes Senior Research Fellow 08

“I don't think either of us have really got over the diagnosis.” Caregiver perspectives on medical trauma in adolescent type 1 diabetes; a trauma-informed qualitative investigation

Type 1 Diabetes (T1D) is a 'family illness'; diagnoses and management can be perceived as invasive or traumatic. Caregivers bear the brunt of the diagnostic shock, influencing their child's experience. Children and adolescents may grapple with the psychological effects of past/ongoing medical trauma. Additionally, adolescents may struggle with their mental health as they navigate tensions between caregiver involvement and their developmental need for autonomy.

Co-designing a new clinical pathway to support families with children identified as having early-stage type 1 diabetes in Western Australia

Children with early-stage (pre-symptomatic) type 1 diabetes are currently identified primarily via research-based screening programmes in Australia. Once identified, families live with the knowledge that their child has an increased chance of developing symptomatic, lifelong, insulin-requiring type 1 diabetes but have no specific clinical pathway available to them in Western Australia for accessing tailored support or education. This project aimed to co-design a new clinical pathway to address this unmet need.

Caregiver-reported quality of life in individuals with developmental and epileptic encephalopathy and other severe neurodevelopmental encephalopathies

Information on factors contributing to quality of life (QOL) informs meaningful patient-centred care. We evaluated factors influencing QOL in individuals with developmental and epileptic encephalopathy (DEE) and other severe neurodevelopmental encephalopathy conditions using hypothesis-free regression tree analysis.

Psychometric validation of the quality of life Inventory − Disability (QI-Disability) among patients with Lennox-Gastaut syndrome and Dravet syndrome

To evaluate the psychometric properties of the Quality of Life Inventory -Disability (QI-Disability) for individuals with Dravet syndrome (DS) or Lennox-Gastaut syndrome (LGS), two rare developmental and epileptic encephalopathy conditions.