1. Carers and delayed discharge: Establishing research priorities Rosemary Chesson Chair, Carers Research Partnership

2. Carers Research Partnership A unique grouping of carers, service users, service providers and researchers Main aims are to: provide robust evidence regarding the needs of carers and service users; extend knowledge of the nature of caring, and especially of carers needs; develop a joint research agenda;

3. Carers and delayed discharge Main purpose of meeting is to Identify a research question to go forward for funding

4. Structure of the meeting Presentations: Perspectives on delayed discharge Prioritising questions Formulating research questions Future research Wider consultation, especially with carers and carer organisations Break

5. Research on delayed discharge and carers low volume of published research (largely relates to England and Wales) indirect references to carers and discharge literature (eg stroke) publications indicate differences between patients and carers majority of research related to older people

6. Problems and limitations of delayed discharge research to date ! Variety of definitions used re delay !Terms delayed discharge, inappropriate acute bed usage and bed blocker often used interchangeably. !Majority of research is historical (prior to Community Care (Delayed Discharges etc) Act 2003, Scottish Executive targets & intermediate care provision. ! !Few studies include carer perspectives.

7. Carers views From a critical evaluation of literature in 2000 it was concluded that carers views on delayed discharge were: conspicuous by their absence Victor et al, 2000

8. BUT key factor in delayed discharge is NOT having a carer (Victor et al, 2000); carers have been identified as key decision makers regarding institutional (residential care) entry (Minichiello, 1990); carers in most cases provide the majority of assistance and support post discharge (Jones & Lister, 1994).

9. Carers experience carers more likely than patients to be dissatisfied with discharge arrangements including: - length of notice - more likely than patients to believe discharge has been premature carers of older people sometimes feel that the burden of care is almost intolerable (Jones & Lister, 1994)

10. Research needs Focus on carers regarding their needs and preferences. Prospective studies needed which reflect the current situation and Scottish policy. Studies needed across a wide range of care groups.