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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).

“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.

Priority-setting in youth with chronic conditions

Amy Keely Liz Leanne Bec Finlay-Jones Bebbington Davis Fried Sampson BPsych(Hons), MPsych(Clinical), MHealthEcon, PhD (Clin Psych) MClinPsych/PhD

Mind The Distance

Yael Penelope Keely Bep Amy Helen Perry Strauss Bebbington Uink Finlay-Jones Milroy BPsych (Hons) MPsych (Clin) PhD BA, MPH, PhD MClinPsych/PhD

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Italian Version of QI-Disability for QoL Evaluation in Children and Adolescents with Intellectual Disability: Translation and Cross-Cultural Adaptation Process

Children and adolescents with Intellectual Disability experience a worse Quality-of-Life (QoL) relative to typically developing peers. Thus, QoL evaluation is important for identifying support needs and improving rehabilitation effectiveness. Nevertheless, currently in Italy there are not tools with this scope. This study aims to translate and cross-culturally adapt the Quality-of-Life Inventory-Disability into Italian.

Overnight monitoring of sleep biomechanics: A scoping review

Body position and movement during sleep is assessed for both clinical and research purposes. A diverse array of both assessment tools and classification systems are used to capture and code sleep biomechanics data.

Using Focussed Ethnography to Observe and Understand the Actions and Interactions of People With Prader-Willi Syndrome When They Exercise at a Community Gym: A Protocol

Exercise for people with Prader-Willi syndrome (PWS) is important for their health and wellbeing and can provide opportunities for community participation. However, they may find it difficult to participate in some contexts, such as community gyms because social and environmental barriers in these settings may compound difficulties caused by physical impairments or intellectual disability.

Australia’s top 10 rare disease research priorities: a priority setting partnership

The aim of this study was to identify and prioritise the ten most important unanswered themes in rare disease research in Australia by integrating perspectives of key stakeholders, including people living with rare disease, parents/carers, health professionals, and rare disease community advocates.

The Feasibility of Personalized Endpoints in Assessing Treatment Outcomes for Rare Diseases: A Pilot Study of Goal Attainment Scaling in SCN2A-Associated

For individuals living with rare neurodevelopmental disorders, particularly those who are at the most severe end of the spectrum, standardized outcome measures may lack the sensitivity to capture small but meaningful changes.