Key messages
There are a wide range of carer needs and expectations reported in the literature, including:
- To understand and have education around practical aspects of home based care suchas pain management, medications and symptom control [1-2]
- To have patient symptoms effectively managed [3]
- Appropriately timed information, delivered at the carer’s pace [4]
- To have a wide range of issues explained – for example, from how to cope with prognosis and retain hope [5]
- To have practical, emotional, social, relational and spiritual support [6]
- To have treatment and health care decisions respected. [3]
What is known
Caring appears to be associated with needs and /or impacts associated with psychological issues for the carer, financial and occupational difficulties and patient care difficulties. [7]
There is good quality evidence that the use and availability of respite care for frail older adults and for those with advanced life limiting illness, limits the risk of depression and burden in carers. [8] However, the interpretation of this evidence is conflicting and some authors report ambiguous or ‘only some’ evidence of the efficacy of respite care. [9-10] Disparity in the reporting of evidence may be due to the varying types of respite available and the varying needs of carers. [11]
Good quality evidence suggests that long term education of the carers of people living with moderate or severe dementia decreases the risk of carer burden and depression. This is true only when the education is combined with psychosocial support and specific, tailored skilled advice. [8-9]
A wide variety of instruments used in assessing family caregivers are available although there has been variable testing of their psychometric properties. [12-13]
Evidence suggests that health professionals could support carers by providing education on practically focused issues such as nursing care and medication. [1]
Support groups and supportive care (carer-specific counselling) appear to be beneficial to carers of people living with dementia, disability and mental illness [9] and of Motor Neurone Disease. [14] How this might transfer to other palliative populations is unknown.
Active research areas/Controversies
- There is a lack of specificity and consensus in key definitions such as family carer, end of life or caregiver need. [7, 15] Greater definitional clarity is needed.
- More research is needed to understand issues around carer employment across the economy and how this impacts on those living with life limiting illness. [7, 16]
- There is wide agreement that more research on a finer and wider range of issues and outcome evaluations are needed in order to determine the efficacy of various interventions for the different types and ages of carers. [6-8, 10, 15, 17-18]
- More research is needed to clarify needs of family and carers who do not live nearby. More research is needed into the needs and issues regarding specific caring groups, such as Indigenous and CALD carers. [7-8] Caregiver gender also requires further investigation. [7, 19]
- The analysis of carer issues in paediatric palliative care may require particular attention given the complex and overlapping roles within the family. [20-21]
- Little attention has been given to issues for patients who live alone and are their own carer. [22]
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References
- Bee PE, Barnes P, Luker KA. A systematic review of informal caregivers' needs in providing home-based end-of-life care to people with cancer. J Clin Nurs. 2009 May;18(10):1379-93. Epub 2009 Apr 8.
- Docherty A, Owens A, Asadi-Lari M, Petchey R, Williams J, Carter YH. Knowledge and information needs of informal caregivers in palliative care: a qualitative systematic review. Palliat Med. 2008 Mar;22(2):153-71.
- Kristjanson LJ. Issues in measuring family care needs and satisfaction. In: Portenoy R, Bruera E, editors. Issues in palliative care research. Oxford: Oxford University Press; 2003.
- Convey V, Ede J, Sealey T. How are the carers being cared for? A review of the literature. Eur J Palliat Care. 2008;15(4):182-5.
- Clayton JM, Hancock K, Parker S, Butow PN, Walder S, Carrick S, et al. Sustaining hope when communicating with terminally ill patients and their families: a systematic review. Psychooncology. 2008 Jul;17(7):641-59.
- Harding R, Higginson IJ. What is the best way to help caregivers in cancer and palliative care? A systematic literature review of interventions and their effectiveness. Palliat Med. 2003 Jan;17(1):63-74.
- 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.
- Compac page
- Eagar K, Owen A, Williams K, Westera A, Marosszeky N, England R, et al. Effective Caring: a synthesis of the international evidence on carer needs and interventions. Wollongong, NSW: Centre for Health Service Development, University of Wollongong; 2007.
- Mason A, Weatherly H, Spilsbury K, Aksey H, Golder S, Adamson J, et al. A systematic review of the effectiveness and cost-effectiveness of different models of community based respite care for frail older people and their carers. Health Technol Assess. 2007 Apr;11(15):1-157, iii.
- Dow B, Haralambous B, Giummarra M, Vrantsidis F, National Ageing Research Institute (NARI). What carers value – review of carer literature and practice. Melbourne: Victorian Government Department of Human Services; 2004.
- Hudson PL, Trauer T, Graham S, Grande G, Ewing G, Payne S. A systematic review of instruments related to family caregivers of palliative care patients. Palliat Med. 2010 Oct;24(7):656-68. Epub 2010 Jul 6.
- Whalen KJ, Buchholz SW. The reliability, validity and feasibility of tools used to screen for caregiver burden: a systematic review. JBI Library of Systematic Reviews. 2009;7(32):1373-430.
- Mockford C, Jenkinson C, Fitzpatrick R. A review: carers, MND and service provision. Amyotroph Lateral Scler. 2006 Sep;7(3):132-41.
- 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.
- Smith P, Payne S, Ramcharan P, Chapman A, Patterson M. Carers of the terminally ill and employment issues: a comprehensive literature review. Sheffield: Palliative and End-of-Life Research Group, University of Sheffield. 2006. No Abstract Available.
- Aoun S. The hardest thing we have ever done - The social impact of caring for terminally ill people in Australia, 2004. Deakin West, ACT: Palliative Care Australia; 2004.
- Honea NJ, Brintnall R, Given B, Sherwood P, Colao DB, Somers SC, et al. Putting Evidence into Practice: nursing assessment and interventions to reduce family caregiver strain and burden. Clin J Oncol Nurs. 2008 Jun;12(3):507-16.
- 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.
- Klassen A, Raina P, Reineking S, Dix D, Pritchard S, O’Donnell M. Developing a literature base to understand the caregiving experience of parents of children with cancer: a systematic review of factors related to parental health and well-being. Support Care Cancer. 2007 Jul;15(7):807-18.
- Young B, Dixon-Woods M, Heney D. Identity and role in parenting a child with cancer. Pediatr Rehabil. 2002 Oct-Dec;5(4):209-14.
- Aoun S, Kristjanson LJ, Oldham L, Currow D. A qualitative investigation of the palliative care needs of terminally ill people who live alone. Collegian. 2008;15(1):3-9.
Last updated 15 October 2010*
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