Background: the Telethon T1D Family Centre is a newly established service in Western Australia offering psychosocial support for children and youth with type 1 diabetes and their families. Research has suggested that poor mental health – including increased rates of depression and anxiety, diabetes-related distress, suicidal ideation, adjustment difficulties, poor self-esteem, and reduced quality of life – is common amongst adolescents with T1D, however little psychosocial longitudinal cohort data is available in Australia. This information would enhance our understanding of which psychological, individual and family factors influence health outcomes and emotional adjustment in the long-term. It may also facilitate identification and appropriate intervention for those at most risk of developing diabetes-related psychological conditions such as disordered eating, serious distress about the burden of living with diabetes, fear of hypoglycaemia, and depression.
Aims: to follow the development of all children with type 1 diabetes and their families in Western Australia. The project will commence in 2016 and investigate the factors which influence positive adjustment and wellbeing when living with diabetes. A major aim is to identify opportunities for improving support for children and their families and for early intervention and prevention strategies.
Method: we are developing an online psychosocial intake system and participatory research database to collect data on attitudes, priorities and support needs for families with children or youth with T1D.
Results: we will present the DATABETES intake and research database system design, and protocol for the implementation and evaluation of this project.
Discussion: this tool will used to inform the implementation, review, modification and ongoing provision of services offered at the Telethon T1D Family Centre, with scope to be distributed to other services post evaluation. This will assist us to develop targeted programs which aim to prevent serious psychological distress and poor diabetes control, and so improve quality of life and prevent future diabetes-related complications.