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Textbook of Palliative Care pp 1–19Cite as

Informal/Family Caregivers

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Abstract

This chapter considers the importance of informal carers in enabling patients to remain at home towards the end of life, providing extensive hours of care and covering a range of caregiving tasks, including physical, emotional, and social care and monitoring. It highlights the considerable impact that caregiving has mainly on carers’ psychological health, but also their general wellbeing, and it reviews the evidence on factors that predict worse impact, key elements of which are carers’ own appraisal of their situation and their preparedness. The chapter describes how carers occupy two main roles: that of a co-worker and of being a client themselves, and the main areas with which they need support to enable them to support the patient as co-workers, and to look after their own health and wellbeing as clients. It reviews the limited success interventions for carers have had to date, some of the challenges that need to be overcome, the importance of individualized, person-centered interventions, and some of the assessment tools that may help facilitate tailored support. It also highlights that assessment in itself is unlikely to be of benefit without clear procedures for discussion of and response to identified problems. Finally, it considers factors required for implementation of carer support within palliative care practice, including procedures for identifying carers, recording carer data and for intervention delivery, as well as organizational level support to sustain implementation including leadership, staff training, protected time, and carer champions. However, fundamental to achieving consistent carer support is the question of whether carers are true clients of palliative care services.

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Authors and Affiliations

  1. Division of Nursing, Midwifery & Social Work, School of Health Sciences, Faculty of Biology, Medicine and Health, University of Manchester, Manchester, UK

    Gunn Grande

  2. Centre for Family Research, Department of Psychology, University of Cambridge, Cambridge, UK

    Gail Ewing

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  1. Gunn Grande
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  2. Gail Ewing
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Correspondence to Gunn Grande .

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Editors and Affiliations

  1. HammondCare Learning and Research Centre, Greenwich Hospital, Greenwich, NSW, Australia

    Roderick Duncan MacLeod

  2. Vrije Universiteit Brussel, VUB-UGent End-of-Life Care Research Grou Vrije Universiteit Brussel, Brussels, Belgium

    Lieve Van den Block

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Grande, G., Ewing, G. (2019). Informal/Family Caregivers. In: MacLeod, R., Van den Block, L. (eds) Textbook of Palliative Care. Springer, Cham. https://doi.org/10.1007/978-3-319-31738-0_52-1

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  • DOI: https://doi.org/10.1007/978-3-319-31738-0_52-1

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  • Print ISBN: 978-3-319-31738-0

  • Online ISBN: 978-3-319-31738-0

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