Aged care research an ethical minefield: Bernoth

To build a robust research culture in aged care, key issues such as funding, the absence of aged care ethics committees and guidelines on confidentiality and consent need to be addressed, writes Dr Maree Bernoth.


To build a robust research culture in aged care, key issues such as funding, the absence of aged care ethics committees and guidelines on confidentiality and consent need to be addressed, writes Dr Maree Bernoth.

Maree Bernoth
Dr Maree Bernoth

Nurses in aged care can work together and collaboratively with their tertiary sector colleagues and stakeholders in the industry to build a research culture which has the potential to promote a vibrant, curious environment in which to live, work and visit.

I can say this confidently as I worked in such an environment; I witnessed one grow, thrive and then disappear under changes resulting from the Aged Care Act 1997.

The current issues of attracting and retaining staff, developing staff to work to their full scope of practice and the introduction of nurse practitioners in aged care provide the impetus for rebuilding a positive research culture.

This article is written for those who desire to make quality aged care research a reality. Research however, is not without its pitfalls and this article also serves to highlight areas we need to address.

Confidentiality and consent

Confidentiality is essential and an important area of ethical research yet the propensity for it to be purposefully or inadvertently breached is huge.

For example, the researcher promises confidentiality to the research participant but then faces a dilemma when abuse or neglect is reported during the research process. If the researcher is a registered nurse, they have mandatory reporting responsibilities. Do mandatory reporting requirements exist if the event is not seen by the researcher but is being reported to them by another person? Management responses to adverse reports or events should be negotiated prior to the commencement of the research with the subsequent agreement included in the forms submitted for ethics approval.

Obtaining informed consent from residents continues to be problematic but how are care strategies evaluated if the voice of the recipients of care is silenced? This is particularly pertinent to residents with a diagnosis of dementia.

Reporting abuse

Maintaining facility confidentiality and protecting businesses against false allegations is vital, but never at the expense of the vulnerable, older person depending on the organisation for care. When elder abuse is uncovered or suspected in the course of research, there can be fear surrounding the consequences of reporting that abuse.

Elders and their loved ones fear exacerbation of the abuse if it is reported. Their dependence and vulnerability are sources of fear. Staff working in facilities may fear loss of employment if they report elder abuse. Researchers fear the participants are right when they say the abuse will get worse if reported; they also fear that without clear guidelines they may be acting unethically, whether they decide to report the abuse or not. Such tensions need to be resolved or there may be a reticence of researchers to engage in aged care research. It is incumbent upon all stakeholders to collaborate in recognising and addressing the ethical dilemmas of reporting elder abuse.

Ethics committees

The majority of aged care facilities do not have ethics committees so are reliant on approval from ethics committees attached to universities or area health services. In doing so, there is a reliance on committees that may not have the expertise and knowledge of residential aged care to identify ethical issues that are particular to the sector or the strategies required to protect the vulnerable participant, facility and researcher. Facilities may be disinterested in ethics, allowing researchers to engage in a project without adequate oversight or consultation.


Inadequate funding of research in aged care inhibits research initiation and the implementation of recommendations and outcomes into practice.  Even when grants become available, it is not the prime focus of aged care facilities, especially smaller facilities, to apply. Staff may also not have the necessary skills to take part in the complex application processes. However, establishing links to the tertiary sector may be one strategy to overcome this barrier to research participation.

The Commonwealth Government, in the past, has offered large grants to improve teaching and research in aged care but these are available to a small number of aged care institutions and the outcomes of the projects are yet to permeate out to the industry. Smaller grants, available to a larger number of facilities, would enable projects that are relevant and significant to the particular facility and would start to build a culture of enquiry.

Financing for research could go directly to the facility to enable local flexibility so that the facility can determine the researchers who are most suited to their project. This turns the table on the currently accepted model which usually allocates research dollars and budgetary control to the tertiary sector.  Tertiary researchers must be inclusive and develop research skills within the aged care workforce and recognise contributions of residential aged care staff within final reports and journal articles.

Research should be seen as an important strategy to enable better aged care services and to increase the credibility and esteem of those working within the sector, subsequently improving the quality of life of people dependant on care.

Dr Maree Bernoth is a lecturer in nursing from the School of Nursing, Midwifery and Indigenous Health at Charles Sturt University. This article draws on a recent paper, ‘Information Management in Aged Care: Cases of Confidentiality and elder abuse’ published in the Journal of Business Ethics.

Tags: consent, ethics, mandatory-reporting, maree-bernoth, nursing,

1 thought on “Aged care research an ethical minefield: Bernoth

  1. I listened yesterday to Professor June Andrews Head of the Dementia Services Development Centre at Stirling University Scotland who stated that the highest level of research is that which hears the voice of those the research applies to -in this case people with dementia
    Stirling have overcome the issue of informed consent and it is widely recognized that the voice of the person with dementia should be heard. Recently a large amount of money was spent here in Canada on research into the impact of the care model and building design on those living in the facility but they excluded those people with dementia on the grounds of ethical considerations. The research then becomes useless as those most impacted are not heard. Family /carer perspectives are not the lived experience and the sooner we move away from that model perhaps we will have some research to build our practice

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