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Which carers of family members at the end of life need more support from health services and why?

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  • McNamara, Beverley
  • Rosenwax, Lorna

Abstract

With end of life care a national priority in many countries, and the main place of care the family home, informal family carers are now considered the frontline of primary care. Yet we are insufficiently informed about the needs of carers, both during the time of caring and during bereavement. This study identifies which carers believed they did not get enough support from health services when caring for a terminally ill family member, what factors influenced perceptions of support, and whether inadequate support influenced the carer's health following the death of a family member. Unlike previous survey designs that explore end-of-life concerns, we were able to triangulate interview data from semi-structured telephone interviews (August 2005-June 2006) with a relatively large group of 1071 carers in Western Australia, with administrative records from death registrations, hospital morbidity and community care records from the 1071 deceased family members. The addition of administrative data allowed us to quantify hospital and community care service use. Data analysis consisted of summary statistics and logistic regressions for two groups of carers during the first few months of bereavement: those whose health got a bit/lot worse, and those who were not coping on most/all days. We found that carers were more likely to have poor health if they perceived they did not get enough support from health services and if the deceased family member did not die in the carer's preferred place of death. Additionally, carers were more likely to be not coping if they were aged 60 years or less, female, had lost a spouse/partner and the deceased family member did not die in the carer's preferred place. By identifying which carers are more vulnerable than others, carer education and practical support can be targeted to specific groups. Ideally resources for bereavement support should be extended into the months following the relative's death.

Suggested Citation

  • McNamara, Beverley & Rosenwax, Lorna, 2010. "Which carers of family members at the end of life need more support from health services and why?," Social Science & Medicine, Elsevier, vol. 70(7), pages 1035-1041, April.
  • Handle: RePEc:eee:socmed:v:70:y:2010:i:7:p:1035-1041
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    References listed on IDEAS

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    1. Exley, Catherine & Allen, Davina, 2007. "A critical examination of home care: End of life care as an illustrative case," Social Science & Medicine, Elsevier, vol. 65(11), pages 2317-2327, December.
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    4. Moorin, Rachael Elizabeth & Holman, Cashel D'Arcy James, 2008. "The cost of in-patient care in Western Australia in the last years of life: A population-based data linkage study," Health Policy, Elsevier, vol. 85(3), pages 380-390, March.
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    1. Terence V McCann & John Bamberg, 2016. "Carers of older adults' satisfaction with public mental health service clinicians: a qualitative study," Journal of Clinical Nursing, John Wiley & Sons, vol. 25(11-12), pages 1634-1643, June.

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