Perspectives on Family Carers

When different people, organisations and government are involved in providing support and services to a person at the end of life different expectations, different endpoints and hopes come to bear on caring. Health professionals can more effectively manage and negotiate care when they are aware of these differing points of view.

Carer perspectives of carers and caregiving

Carers have expressed different views and experiences about being a carer and providing care. [1-3] Positive effects include:

  • Giving and receiving care
  • Appreciation of life and themselves
  • Feeling useful, needed and satisfied
  • Strengthening of family relationships.
Negative effects have also been described including:
  • Increased morbidity for older carers
  • Loss of personal freedoms and autonomy
  • Increased depression, distress and anxiety
  • Increased financial hardship
  • Altered relationship with the care recipient.

Various risks for some carer groups and circumstances have also been noted. [1]

Patient perspectives on carers and caring

There is very little published information on the care recipient’s perception of the care given. Support for the family / caregiver was identified as one of six goals of care from the patient’s perspective. [4] Protective care given by care recipients to their professional care providers, family and friend caregivers, and other care recipients. [5] Self-perceived burden has been reported as a significant problem by 19 - 65% of terminally ill patients. [6] 

In the ‘broader’ carer literature, the lack of the care recipient’s perspective has been identified and criticised as presenting the notion of care as one-dimensional rather than reciprocal. [7] 

Health professional perspectives of carers and caring

Health professionals’ views on supporting carers are sparse in the research literature. Appropriate goals of care require effectively managed care, and in many cases are negotiated with family carers. There can be an unacknowledged view that carers are necessary to provide choice for the patient.

Government perspectives of carers and caring

Carers are an integral part of the health system in Australia. They contribute the equivalent of an estimated 30.5 billion dollars to the Australian economy (if these unpaid services were replaced by funded formal services). [8] Undoubtedly carers make it possible for people with life limiting illness to live at home. Some forms of government assistance for carers, such as respite, income support and counselling services have been introduced by national or state governments.

There is also a hidden cost in the lost capacity to earn superannuation among carers who surrender employment in order to care for someone with a long illness. This makes a potential contribution to long-term burden for the Australian economy by generating welfare-dependency among those whose income-based retirement funding plan was interrupted by becoming a carer during their pre-retirement years, and replaced by a carer pension for those deemed eligible. [9-10]

  1. Australian Government Department of Health and Ageing. Guidelines for a Palliative Approach for Aged Care in the Community Setting — Best practice guidelines for the Australian context. Canberra: Australian Government Department of Health and Ageing; 2011. (2.06MB pdf)
  2. Funk L, Stajduhar K, Toye C, Aoun S, Grande G, Todd C. 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.
  3. Stajduhar K, Funk L, Toye C, Grande G, Aoun S, Todd C. 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.
  4. Kaldjian LC, Curtis AE, Shinkunas LA, Cannon KT. Goals of care toward the end of life: a structured literature review. Am J Hosp Palliat Care. 2008 Dec-2009 Jan;25(6):501-11.
  5. Russell CK, Bunting SM, Gregory DM. Protective care-receiving: the active role of care-recipients. J Adv Nurs. 1997 Mar;25(3):532-40.
  6. McPherson CJ, Wilson KG, Murray MA. Feeling like a burden to others: a systematic review focusing on the end of life. Palliat Med. 2007 Mar;21(2):115-28.
  7. Dow B, Haralambous B, Giummarra M, Vrantsidis F. What carers value: review of carer literature and practice. Melbourne: Victorian Government Department of Human Services; 2004.
  8. Access Economics. The economic value of informal care. Canberra: Access Economics Pty Limited; 2005. (342kb pdf)
  9. Hughes J. Caring for carers: the financial strain of caring. Fam Matters. 2007;(76):32-3.
  10. Gardiner C, Brereton L, Frey R, Wilkinson-Meyers L, Gott M. Approaches to capturing the financial cost of family care-giving within a palliative care context: a systematic review. Health Soc Care Community. 2016 Sep;24(5):519-31. Epub 2015 Jun 22.
Last updated 18 January 2017