Carers and delayed discharge: Establishing research priorities

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

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

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Structure of the meeting

Presentations Perspectives on delayed discharge

Break
Formulating research questions
Prioritising questions
Wider consultation, especially with carers and
carer organisations
Future research
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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

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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.
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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
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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).

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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)

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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.