Search
Shared decision-making between patients and primary healthcare professionals positively impacts health outcomes. However, people with intellectual disability face additional barriers and require supported shared decision-making (SSDM) to participate. Little is known about how healthcare professionals use SSDM with this population. This paper explores the facilitators and barriers experienced, and strategies/resources employed by healthcare professionals working with people with intellectual disability.
CDKL5 Deficiency Disorder (CDD) is a rare neurodevelopmental disorder characterised by early onset seizures combined with complex healthcare needs and developmental impairment that influence functional domains including communication. Communication is a high priority domain for families but currently used measures demonstrate floor effects.
Children and young people with type 1 diabetes (T1D) experience high rates of mental ill health and stress due to the emotional and cognitive energy required to manage their condition. Our team has codesigned Wellbeing T1D, a brief trauma-informed online intervention for adolescents living with T1D. This 5-week intervention will teach skills to promote problem solving, improve emotional regulation and promote helpful thinking and coping.
CDKL5 deficiency disorder (CDD) is a rare developmental and epileptic encephalopathy (DEE) associated with multiple impairments and comorbidities. Outcome measures for disease-modifying clinical trials for DEEs should measurably capture a spectrum of caregiver priorities and be externally validated.
LiL' STEPS (Language development & Intervention Lab's SupporTing Early social-communication and language by Promoting caregiver Sensitive responsiveness) is a novel, manualized, caregiver-mediated early support program developed in India and delivered online for infants at elevated familial likelihood for autism. The program has been found to be feasible and acceptable. The preliminary efficacy of the LiL' STEPS program, which remains to be evaluated, was assessed in this study using a feasibility randomized controlled trial design.
Evidence suggests that the earlier supports are provided to young Autistic children, the better the overall outcomes. Supports have typically only been available after an autism diagnosis but with increased knowledge about early developmental trajectories, clinical supports can now be offered prediagnosis for infants showing early autism features and/or those with a family history of autism.
There is an urgent need for scalable interventions to promote physical activity in early childhood. An early childhood education and care physical activity policy intervention with implementation support strategies (Play Active) has been proposed for scale-up in Australia.
Yalemzewod Assefa Gelaw PhD, MPH, BSc Honorary Research Associate Yalemzewod.Gelaw@thekids.org.au Honorary Research Associate Dr Yalemzewod Gelaw
This study aimed to (i) develop a decision tree to guide clinicians to use a core outcome set (COS) of chronic pain assessment tools specific to children and young people with cerebral palsy and (ii) pilot test the implementation of the decision tree and core set in clinical practice.
Developing dietary guidelines for lactating women presents significant challenges, due to limited evidence being available on their specific nutrient needs and the biological impacts of various dietary dimensions. Current dietary recommendations often rely on data from nonlactating women, leading to potential inaccuracies.