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Carers

Anyone, at anytime, can find themselves responsible for the wellbeing of a partner, family member or friend at the end of their life. Most Australians who know they are going to die spend the majority of the last year of their lives in their home – this would not be possible without the contribution of carers. [1-2]

Caring can be extremely challenging, but carers can also find it a rewarding experience and derive meaning and satisfaction from the role. [3] Caring can encompass a multitude of tasks and responsibilities both physical and emotional:

  • Keeping someone company
  • Personal care such as bathing or toileting
  • Assistance with communication
  • Providing transport
  • Administrative care, such as banking, paying bills
  • Giving medication or dressing wounds
  • Shopping and arranging medical appointments
  • Cooking meals and housekeeping
  • Maintaining friendships, social networks and activities.

Wives and husbands, sons or daughters, neighbours, friends and others can enter into the role of carer with significant ambivalence – feelings of willingness to care can be mixed with reluctance or even resentment. [3-5] Caring can alter an established relationship – for example, if a son or daughter is required to personally care for his or her parent - challenging and changing their previous or ‘normal’ roles and relationship. [5]

Carers may be unprepared and significantly unsupported for the important contributions and demands required at the end of a person's life. [6-8] Often such care can be unnoticed by friends and clinicians. 

Some people who provide care and support may not be aware that they are caring or do not wish to identify themselves as ‘carers’. [3] Clinicians have a role to play in the identification of carers and ensuring that they are supported and informed of health decisions. [9]

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Carers
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Review Collection
  1. Hudson P. Home-based support for palliative care families: challenges and recommendations, Med J Aust. 2003 Sep 15;179(6 Suppl):S35-7.
  2. Gomes B, Higginson IJ. Factors influencing death at home in terminally ill patients with cancer: systematic review. BMJ. 2006 Mar 4;332(7540):515-21. Epub 2006 Feb 8.
  3. Funk L, Stajduhar KI, Toye C, Aoun S, Grande GE, Todd CJ. Part 2: Home-based family caregiving at the end of life: a comprehensive review of published qualitative research (1998-2008). Palliat Med. 2010 Sep;24(6):594-607. Epub 2010 Jun 24.
  4. Burridge L, Winch S, Clavarino A. Reluctance to care; a systematic review and development of a conceptual framework.Cancer Nurs. 2007 Mar-Apr;30(2):E9-19.
  5. MacKinnon CJ. Applying feminist multicultural and social justice theory to diverse women who function as caregivers in end-of-life and palliative home care. Palliat Support Care. 2009 Dec;7(4):501-12.
  6. Yates P. Families' awareness of and response to dying. Oncol Nurs Forum. 1999 Jan-Feb;26(1):113-20.
  7. Kristjanson L, Hudson P, Oldham L. Working with families in palliative care. In: O'Connor M, Aranda S, editors. Palliative care nursing: a guide to practice. 2nd ed. Melbourne: Ausmed Publications; 2003.
  8. Stajduhar KI, Funk L, Toye C, Grande GE, Aoun S, Todd CJ. Part 1: Home-based family caregiving at the end of life: a comprehensive review of published quantitative research (1998-2008). Palliat Med. 2010 Sep;24(6):573-93. Epub 2010 Jun 18.
  9. Help the Hospices. Identifying carers' needs in the palliative setting. London: Help the Hospices; 2009.

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Last updated 18 January 2017