The knowledge base: What do

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  • 1. The knowledge base: What do we know from research about supporting carers of people with long-term conditions? Hilary Arksey Social Policy Research Unit
  • 2. SPRU and the NSF
    • Commissioned by DH to carry out two scoping studies to underpin the NSF, focusing on:
      • people with LTCs
      • carers of people with LTCs
    • (focus for today)
    • Target LTCs: epilepsy, MS, MND, Parkinson’s disease, brain injury, spinal cord injury, polio, cerebral palsy
  • 3. NSF Quality Requirement 10: Supporting family and carers
    • Carers of people with long-term neurological conditions are to have access to appropriate support and services that recognise their needs both in their role as carer and in their own right.
  • 4. Focus of presentation
    • Background information on carers
    • Research methods for review
    • Evidence about impact of caring on carers
    • Evidence about carers’ unmet needs
    • Evidence about effective support for carers
    • Specific issues
    • Concluding comments
  • 5. Carers: background information
    • An estimated 850,000 people care for someone with a neurological condition
    • Recent policy measures include:
      • Carers (Recognition & Services) Act 1995
      • National Strategy for Carers (1999)
      • Carers and Disabled Children Act 2000
      • Carers (Equal Opportunities) Act 2004
  • 6. Research methods to identify evidence base
    • Literature review of national and international studies: search of electronic databases; material requested from key organisations
    • Studies reviewed by panel of expert readers
    • Strength of evidence rated as high, medium or low
    • Summarised in two reports for DH; combined executive summary (copy in delegate packs)
  • 7. Evidence about impact of caring on carers
    • Poor physical health and emotional well-being (e.g. stress, anxiety, depression, burden, anger)
    • Disturbed sleep
    • Financial strain
    • Social isolation
    • Changed marital/family relationships
  • 8. Evidence about carers’ unmet needs
    • Information about: condition; treatment; social services; housing adaptations; welfare benefits
    • Reliable, appropriate services for carers and care recipients
    • Respite care and short breaks
  • 9. Evidence about effective support for carers
    • Efficacy of interventions?
    • Specialist staff
    • Educational/support programmes
  • 10. Specific issues
    • Implications of long-term nature of recovery: needs change over time; carers can feel forgotten as time goes on
    • Services: too little, too late; responsiveness; timing
    • Rural carers: limited services; transport/ distance issues
  • 11. Concluding comments
    • Carers may neglect own health needs, so even more reason for professionals to be vigilant
    • Implications for Carers (Equal Opportunities) Act 2004
      • Combining work and care
      • Multi- and inter-agency working
  • 12. Quote of the day
    • ‘ There was a correlation between age of care-giver and years of supporting (r=.362, p<.01). These responses are reasonable given the chronicity of MS and the likelihood of care-givers getting older they longer they care.’