Work Package 2, this stream, 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 risk 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
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