Work Package 1: Integrating resourced clinical and community psychosocial support.
This Work Package aims to develop, implement and evaluate clinical and peer-led models of care that centre psychosocial support in coordination and provision of healthcare services to children with IVSCs and their families, that reflect community and human rights expectations and new regulatory norms; integrate best practice clinical and peer-led psychosocial support; promote the faster adoption of best practices developed in the ACT and national peer-led services, by health professionals in other settings. Including:
- Improve the quality and ongoing accessibility of affirmative physical and wellbeing services for the IVSC community, including those with intersectional disadvantage.
- Enhance peer-led and clinical psychosocial services to meet community expectations.
- Provide evidence to support informed decision-making in clinical and peer-led settings.
- Put in place mechanisms to improve self-knowledge, service continuation, community
- Engagement and improved agency in health-seeking behaviour across the lifespan.
Work Package 2: Improving understanding of the health and wellbeing needs of adults and adolescents with IVSCs
This Work Package aims to gain a comprehensive understanding of the health, wellbeing and health service experiences of adolescents and adults with IVSCs. Research in this stream will seek to understand: their perspectives of their health and wellbeing experiences and needs; what risks and protective factors are associated with their health and wellbeing outcomes; how do health service experiences, preferences and utilisation vary by biographic and psychosocial factors; what are the health and wellbeing needs of family members; and what are the experiences of their family members in accessing health care?
We will do this primarily via the following means:
- Conducting interviews with people with IVSCs and their families to better understand their health and wellbeing needs and experiences.
- Co-designing a new population survey with people with IVSCs to establish a national understanding of the health and wellbeing of people with IVSCs.
- Exploring the acceptability of linking people’s administrative health records to their survey data to examine people’s health service use.
- Developing new methodologies to inform a longitudinal population study
Work Package 3: Developing new bioethical frameworks informed by lived experience and psychosocial expertise
This Work Package aims to develop new bioethical frameworks for interdisciplinary, patient-centred care for individuals with IVSCs and support for their families, including developing principles, protocols and decision-making tools to assist clinicians, multidisciplinary teams, and their institutions to evaluate and deliberate considerations for treatment in individual cases, while attending to systemic concerns regarding existing treatment models.
To achieve this, we will:
- Centre the contributions of psychosocial support and peers in coordinating care.
- Attend to address systemic ethical and justice issues to ensure respect for the human rights of individuals with IVSCs, and address intersectional forms of disadvantage including for Aboriginal and Torres Strait Islander people, and people with disabilities.
- Address healthcare issues across the lifespan.
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