The knowledge base: What do

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The knowledge base: What do

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

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