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Advocacy

Key Messages

  • Advocacy aims to support and promote a person’s rights and interests. A person may advocate for themself or an advocate may undertake this. [1, 2]
  • The core aim of aged care advocacy is to support those who are vulnerable or ‘hard to reach’ or who have complex needs. Appropriate funding is needed to recognise to serve these groups satisfactorily. [1]
  • Education and information sessions on consumer rights often result in consumers seeking advocacy assistance. [1]
  • A national framework provides guidance for people and organisations in Australia which deliver advocacy services through the National Aged Care Advocacy Program (NACAP) [3]
  • Much of the literature on advocacy comes from the disability sector and there is very little in relation to palliative care. [1]

Background

Advocacy in all its forms seeks to ensure that people, particularly those who are vulnerable, are able to have their voice heard on issues that are important to them, have their rights defended and protected, and have their views and wishes genuinely considered when decisions are being made about their life. [1, 4]

Evidence Summary

Advocacy is a process of supporting and enabling people to express their opinions and concerns, to access information and services, to defend and promote their rights and responsibilities, and to explore choices and options. [1, 5] In the case of end-of-life care, this may be ensuring a person’s wishes are upheld. [6] While advocacy is present at an individual, community and systemic level, the literature discussing advocacy in a palliative care setting is scant across all domains.

Education and information sessions on consumer rights are integral elements of advocacy and the review noted that these often result in consumers seeking advocacy assistance. [1]

The regulatory framework that applies to aged care safety and quality in Australia includes advocacy and community visitors. [7] The Charter of Aged Care Rights, applicable to all aged care services, includes the right for each older person receiving services to have a person of their choice, including an aged care advocate, to support them or speak on their behalf. [8, 9]

At a community level, in Australia, older people and/or family members requesting assistance with advocacy may be referred to the National Aged Care Advocacy Program (NACAP). [3] NACAP is funded by the Australian Government under the Aged Care Act and provides free, independent and confidential advocacy support, education and information and services are implemented Australia-wide by the Older Persons Advocacy Network (OPAN). [3, 4]

Statements and testimonies from advocates and advocacy groups were included in the Royal Commission into Aged Care. The Interim Report (2019) notes the need for improved advocacy services for older people. [10] Families are often active in advocating for their family member and this can detract from the time that they can spend together. [11] Careworkers often become advocates for older people in their care including advocating for services outside their own service provider. [11]

A key finding of the Review of Commonwealth Aged Care Advocacy Services is the diversity of interpretations of the nature of advocacy work among aged care service providers, peak bodies, and even some services that report undertaking advocacy. [1] It also cautions that aged care advocacy should ideally be provided independently from aged care services, government and faith-based organisations to maximise acceptability and reduce the possibility of perceived/real conflicts of interest.

With the implementation of consumer-directed care (CDC) aged care services, older Australians and their family and carers are asked to exercise individual responsibility in making decisions about care. With this and the expansion of community-based aged care, appropriate funding needs to be allocated to support people who are vulnerable or ‘hard to reach’ (including rural/remote) and those with specific/special or complex needs. [1]

Evidence is emerging about the involvement of people with dementia as dementia advocates speaking out on behalf of themselves and others. [2] Self-advocacy has benefits for people with dementia include regaining their voice and membership of social networks with a shared experience.[2] However, this is not a universally positive experience with some advocates feeling fatigued by the effort or burdened by the perceptions of the expectations of others. [2]

Quality Statement

Overall, there is a paucity of research for patient advocacy for older adults receiving care in a palliative care setting. The two literature reviews sourced for this summary [2, 5] are of low quality and narrow in the research focus, while the review of advocacy services [1] cited for context is of low applicability to palliative care.

 

Page updated 26 May 2021
 

  • References

  • About PubMed Search

  1. Australian Government Department of Social Services, Australian Healthcare Associates (AHA). Review of Commonwealth Aged Care Advocacy Services: Final report (1.67MB pdf). Melbourne: AHA; 2015 Dec.
  2. Weetch J, O'Dwyer S, Clare L. The involvement of people with dementia in advocacy: a systematic narrative review. Aging Ment Health. 2020 Jun 24:1-10. doi: 10.1080/13607863.2020.1783512. Epub ahead of print.
  3. Australian Government. National Aged Care Advocacy Framework. Canberra: Department of Health; 2018 Dec.
  4. Australian Government. Older Persons Advocacy Network (OPAN) [Internet]. Canberra: Department of Health [cited 2021 May 26].
  5. Reed FM, Fitzgerald L, Bish MR. District nurse advocacy for choice to live and die at home in rural Australia: a scoping study. Nurs Ethics. 2015 Jun;22(4):479-92. Epub 2014 Jun 29.
  6. Reed FM, Fitzgerald L, Bish MR. A practice model for rural district nursing success in end-of-life advocacy care. Scand J Caring Sci. 2018 Jun;32(2):746-755. doi: 10.1111/scs.12505. Epub 2017 Aug 24.
  7. Royal Commission into Aged Care Quality and Safety. Legislative framework for aged care quality and safety regulation - Background Paper 7. Canberra: Commonwealth of Australia; 2019 Aug.
  8. Aged Care Quality and Safety Commission. Charter of Aged Care Rights (information for providers). Canberra: Commonwealth of Australia; 2021 [updated 2021 May 17; cited 2021 May 25]. 
  9. Aged Care Quality and Safety Commission. Charter of Aged Care Rights. Canberra: Commonwealth of Australia; 2020 [updated 20 January 2020]. 
  10. Royal Commission into Aged Care Quality and Safety. Interim Report Volume 1. Canberra: Commonwealth of Australia; 2019 Oct.
  11. Royal Commission into Aged Care Quality and Safety. Interim Report Volume 2. Canberra: Commonwealth of Australia; 2019 Oct.

Advocacy for patients, their unpaid carers, and their family

Definition

Patient Advocacy: Promotion and protection of the rights of patients, frequently through a legal process. (MeSH)
Consumer Advocacy: The promotion and support of consumers' rights and interests. (MeSH)

Searches

Final search
"Patient Advocacy"[mh] OR "Consumer Advocacy"[mh] OR Patient advocacy [tiab] OR client advocacy[tiab] OR consumer advocacy[tiab] OR ombudsmen[tiab] OR patient representative*[tiab] OR family representative*[tiab] OR patient advocate*[tiab] OR family advocate*[tiab] OR healthcare advocate*[tiab]