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Cohort study of informal carers of first-time stroke survivors: Profile of health and social changes in the first year of caregiving

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  • Simon, Chantal
  • Kumar, Satinder
  • Kendrick, Tony

Abstract

Informal carers underpin community care policies. An initial cohort of 105 informal live-in carers of new stroke patients from the South Coast of England was followed up before discharge, six weeks after discharge and 15 months after stroke with face-to-face interviews assessing physical and psychological health, and social wellbeing. The carer cohort was compared to a cohort of 50 matched non-carers over the same time period. Carer distress was common (37-54%), started early on in the care-giving experience and continued until 15 months after stroke. Carers were 2.5 times as likely as non-carers to have significant psychological distress. Presence of early distress predicted 90% of those significantly distressed 15 months after stroke. Female carers were likely to develop distress earlier than male carers and in anticipation of the care-giving situation. Male carers developed similar levels of distress but only once the care-giving situation became reality. Further research is needed to establish ways to screen for psychological distress early after onset of caregiving, to find ways to tailor proven support interventions to the individual carer, and to evaluate the effect of early detection and support provision on later carer distress.

Suggested Citation

  • Simon, Chantal & Kumar, Satinder & Kendrick, Tony, 2009. "Cohort study of informal carers of first-time stroke survivors: Profile of health and social changes in the first year of caregiving," Social Science & Medicine, Elsevier, vol. 69(3), pages 404-410, August.
    • Handle: RePEc:eee:socmed:v:69:y:2009:i:3:p:404-410
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    References listed on IDEAS

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    1. Nieboer, A. P. & Schulz, R. & Matthews, K. A. & Scheier, M. F. & Ormel, J. & Lindenberg, S. M., 1998. "Spousal caregivers' activity restriction and depression: A model for changes over time," Social Science & Medicine, Elsevier, vol. 47(9), pages 1361-1371, November.
    2. Martin Pinquart & Silvia Sörensen, 2003. "Associations of Stressors and Uplifts of Caregiving With Caregiver Burden and Depressive Mood: A Meta-Analysis," The Journals of Gerontology: Series B, The Gerontological Society of America, vol. 58(2), pages 112-128.
    3. Hirst, Michael, 2005. "Carer distress: A prospective, population-based study," Social Science & Medicine, Elsevier, vol. 61(3), pages 697-708, August.
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    1. Torbica, Aleksandra & Calciolari, Stefano & Fattore, Giovanni, 2015. "Does informal care impact utilization of healthcare services? Evidence from a longitudinal study of stroke patients," Social Science & Medicine, Elsevier, vol. 124(C), pages 29-38.

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