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Family Carers

Key Messages

  • Carers are an integral part of Australia's health system and are the foundation of our aged, disability, palliative and community care systems [1] yet little is known about how they can best be supported. 
  • Providing informal care can generate strong positive emotions however it can be stressful both mentally and physically. [2-5]
  • People who care for older people receiving palliative care be of a similar age and have health problems. They may therefore have particular needs for assistance with caring. [3]
  • Recognising the contribution, needs and concerns of a carer can provide reassurance and contribute to the positive aspects of caring. [3]

Background

Carers Australia describes a carer as a person who provides unpaid care and support to a family member or friend who has a disability, mental illness, chronic condition, terminal illness, an alcohol or other drug issue or who are frail aged. [1] Caring in a palliative scenario can be complex. Carers can be challenged when dealing with issues such as pain management, managing cognitive decline, increased functional dependency on the carer, and ultimately their bereavement following the death of the person for whom they cared.
 

Evidence Summary

While the needs of people receiving palliative care appear to be well-documented and include practical, emotional, physical and existential domains of support; the needs of family carers are less well discussed or addressed. [6] Care may be provided over a long period of time. Home is often the preferred environment. Carers and families need to receive sufficient support to continue to provide care. [7,8]

In developed countries, most deaths occur in people over the age of 65 years. Global ageing and increases in long-term illness will see more patients with a wide variety of diagnoses needing palliative care towards the end of life. [9] Most older adults prefer to die in their own home [8] however it is more common in a hospital or increasingly in an aged care setting. [9-11] More research is required to identify how end-of-life can be better supported in an institutional setting. 

Palliative services are often more geared to the support of carers for people with cancer, yet there is an increasing need to assist carers of people with non-malignant illnesses. [2,4,11,12] Carers may have needs such as the sharing experiences, anxiety of managing symptoms and decision-making, being isolated, maintaining a relationship outside of the role of the ‘carer’ and access to support which could include physical, emotional or financial assistance. [4,6,7,12-14]

Supporting carers in their role as carer is an important part of palliative care. While providing informal care can generate strong positive emotions, caring can be extremely stressful both mentally and physically. [2-5] Carer ‘strain’ or ‘burden’ is a common experience. Studies show that younger, female carers, culturally and linguistically diverse (CALD) carers and carers in socioeconomic disadvantage are more susceptible to carer burden. [5] Carers of older people may themselves be of a similar age possibly with health problems and will therefore have particular needs for assistance with caring. [3] Ultimately support strategies need to be individualised and may also be dependent on disease trajectory, diagnosis and the pre-existing support network for the carer.

Carers often look to health professionals to aid their understanding of the disease and necessary symptom management including how to manage acute episodes and end of life planning. [5] Carers often seek practical support with decision-making. [13] Regular contact and reassurance from the palliative care team, written information and access to self-care strategies and relevant support groups may reduce carer burden. [15,16] When health professionals recognise the needs and concerns of a carer, it can provide reassurance and contribute to the positive aspects of caring. [3]

It should be recognised that carer grief can be experienced at different points along the care journey, as early as at diagnosis to years after the death. [11,13] Grief should therefore be considered in palliative care planning. Grief may also be experienced in conjunction with feelings of guilt, ambivalence and relief which can be distressing to family carers. [11] Information on grief and bereavement can be found in the Bereavement pages.
 

Quality Statement

Overall the evidence is of adequate quality, with most reviews comprising of qualitative or mixed method studies.



Page updated 23 May 2017
 

References

  1. Carers Australia. About carers [Internet]. 2017 [cited 2017 May 24].
  2. Candy B, Jones L, Drake R, Leurent B, King M. Interventions for supporting informal caregivers of patients in the terminal phase of a disease. Cochrane Database Syst Rev. 2011 Jun 15(6):CD007617.
  3. Whittingham K, Barnes S, Gardiner C. Tools to measure quality of life and carer burden in informal carers of heart failure patients: a narrative review. Palliat Med. 2013 Jul;27(7):596-607.
  4. Kang X, Li Z, Nolan MT. Informal caregivers' experiences of caring for patients with chronic heart failure: systematic review and metasynthesis of qualitative studies. J Cardiovasc Nurs. 2011 Sep-Oct;26(5):386-94.
  5. He Leow MQ, Wai Chi Chan S. Factors affecting caregiver burden of terminally ill adults in the home setting - A systematic review. JBI Libr Syst Rev. 2011;9(45):1883-1916.
  6. Ventura AD, Burney S, Brooker J, Fletcher J, Ricciardelli L. Home-based palliative care: a systematic literature review of the self-reported unmet needs of patients and carers. Palliat Med. 2014 May;28(5):391-402.
  7. Woodman C, Baillie J, Sivell S. The preferences and perspectives of family caregivers towards place of care for their relatives at the end-of-life. A systematic review and thematic synthesis of the qualitative evidence. BMJ Support Palliat Care. 2015 Dec;6(4):418-429.
  8. Morris SM, King C, Turner M, Payne S. Family carers providing support to a person dying in the home setting: A narrative literature review. Palliat Med. 2015 Jun;29(6):487-95.
  9. Brereton L, Gardiner C, Gott M, Ingleton C, Barnes S, Carroll C. The hospital environment for end of life care of older adults and their families: an integrative review. J Adv Nurs. 2012 May;68(5):981-93.
  10. Fosse A, Schaufel MA, Ruths S, Malterud K. End-of-life expectations and experiences among nursing home patients and their relatives--a synthesis of qualitative studies. Patient Educ Couns. 2014 Oct;97(1):3-9.
  11. Peacock SC. The experience of providing end-of-life care to a relative with advanced dementia: an integrative literature review. Palliat Support Care. 2013 Apr;11(2):155-68.
  12. Tong A, Cheung KL, Nair SS, Kurella Tamura M, Craig JC, Winkelmayer WC. Thematic synthesis of qualitative studies on patient and caregiver perspectives on end-of-life care in CKD. Am J Kidney Dis. 2014 Jun;63(6):913-27.
  13. Lord K, Livingston G, Cooper C. A systematic review of barriers and facilitators to and interventions for proxy decision-making by family carers of people with dementia. Int Psychogeriatr. 2015 Aug;27(8):1301-12.
  14. Aoun SM, Bentley B, Funk L, Toye C, Grande G, Stajduhar KJ. A 10-year literature review of family caregiving for motor neurone disease: moving from caregiver burden studies to palliative care interventions. Palliat Med. 2013 May;27(5):437-46.
  15. Jaffray L, Bridgman H, Stephens M, Skinner T. Evaluating the effects of mindfulness-based interventions for informal palliative caregivers: A systematic literature review. Palliat Med. 2016 Feb;30(2):117-31.
  16. Powazki R, Walsh D, Hauser K, Davis MP. Communication in palliative medicine: a clinical review of family conferences. J Palliat Med. 2014 Oct;17(10):1167-77.

About PubMed Search

Definition

Caregivers: Persons who provide care to those who need supervision or assistance in illness or disability. They may provide the care in the home, in a hospital, or in an institution. Although caregivers include trained medical, nursing, and other health personnel, the concept also refers to parents, spouses, or other family members, friends, members of the clergy, teachers, social workers, fellow patients. (Source: MeSH thesaurus)
Searches

Final search

Family[mh:noexp] OR adult children[mh] OR caregivers[mh] OR famil*[ti] OR carer[ti] OR carers[ti] OR caregiv*[ti] OR care giver*[ti] OR care giving[ti] OR ((famil*[tiab] OR carer[tiab] OR carers[tiab] OR caregiv*[tiab] OR care giver*[tiab] OR care giving[tiab]) NOT medline[sb])