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The knowledge base: What do

The knowledge base: What do






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    The knowledge base: What do The knowledge base: What do Presentation Transcript

    • The knowledge base: What do we know from research about supporting carers of people with long-term conditions? Hilary Arksey Social Policy Research Unit
    • 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
    • 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.
    • 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
    • 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
    • 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)
    • 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
    • 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
    • Evidence about effective support for carers
      • Efficacy of interventions?
      • Specialist staff
      • Educational/support programmes
    • 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
    • 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
    • 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.’