This Position Paper is the result of work undertaken by the University of Sunderland and the Sunderland Carers’ Centre (part of the Princess Royal Trust for Carers). It is premised on the belief that carers are experts in their own lives, and that their participation in service planning and delivery should lead to improvement in those services. The Position Paper has been carer-led from the outset. Carers have had a key role in focusing on the methods adopted, formulating research instruments, reviewing the
progress of the work, undertaking matched interviews with carers and appraising draft copies of the document. Carers in both London and Belfast have been involved in showcasing the work as it developed. Partnership principles and a participatory research paradigm have been adopted as the basis of the study and a wider Position Paper.
In addition, the researchers wanted to establish the principles of carer participation through the research process.