Chapter 31: Ethical considerations in conducting research with hard-to-reach populations

Who and what are hard–to–reach populations?

The term ‘hard to reach’ is not well defined, but in general is used to refer to groups or populations that are difficult to engage in research.¹ The factors that make a population hard to reach are varied and may reflect institutional barriers (e.g. gatekeeping by service providers or government bodies) and/or individual characteristics of people within that population (e.g. homelessness, substance abuse, age, the presence of disabilities, or people who highly dependent on medical care).^1,2,3 Due to their hidden nature, these populations are often excluded from research. This chapter focuses on the factors that can make certain populations hard to reach and the ethical implications of not including vulnerable groups in research.

‘Hard-to-reach’ populations are typically considered vulnerable, marginalised and/or disenfranchised. Normally, hard-to-reach populations are those that exist outside of the mainstream, such as people who are homeless, children in Out-of-Home Care (OOHC), people in prison and people experiencing multiple forms of disadvantage or hardship.³ Hard-to-reach populations can be characterised by significant histories of trauma. Their interactions with systems of care and control have often exacerbated their trauma, leading to increased wariness and suspicion of systems, services and institutions, including universities.^3,4,5

There are also certain personal characteristics, including age (specifically children) and the presence of intellectual disabilities or cognitive impairments that can lead to groups being considered vulnerable and, consequently, hard to reach.^4,6,7,8

Contested terminology

While terms like ‘vulnerable’, ‘marginalised’ and ‘disadvantaged’ are commonly used to describe hard-to-reach populations, these terms are often ill-defined and contested.^3,6 Vulnerability is not a static construct: its definition depends on context and perspective. From a research governance perspective (i.e. research ethics), vulnerability is equated with risk – risk to the vulnerable individual and risk to the organisation.^7,9 This focus on managing risk creates its own set of challenges, including significant barriers that ultimately exclude certain cohorts of people from research.

However, vulnerability – particularly when it is grounded in trauma – can coexist with risks that require management or control. For example, children and young people who have experienced maltreatment are considered highly vulnerable. These same children may exhibit challenging behaviours, including antisocial and criminal activity.¹⁰ Vulnerability can therefore elicit compassion and protection, but only when it conforms to certain stereotypes of what it means to be vulnerable.³

The attributions applied to vulnerable people may not reflect how people define themselves. The term ‘vulnerability’, for example, can connote weakness and frailty, or the need for protection. It can also be used to imply that vulnerable people lack the capacity for self-protection and personal agency.^4,6,11 Similarly, the term ‘marginalised’ has connotations of personal responsibility or personal failure.¹² However, marginalisation is a process of exclusion from the mainstream, driven by entrenched systemic and structural inequities.¹³

The language we use to describe research participants is important and has implications for participants’ willingness to engage with our research. It may not be that populations are ‘hard to reach’ but that our way of thinking about and doing research needs to be more flexible, creative and inclusive.⁸

Table 31.1 provides a non-exhaustive list of groups that are typically considered vulnerable and consequently hard to reach. It is important to note that many of the characteristics in the table are not mutually exclusive. In fact, it is the intersection of multiple individual characteristics with institutional barriers that render certain populations hidden and silenced.

Table 31.1: Hard-to-reach populations and factors that increase perceived risks of research participation

As the information in Table 31.1 shows, from a research governance perspective vulnerability is framed through a lens of risk: that participants will experience distress and trauma, that the safety of participants and researchers is at risk and that there is potential for unethical conduct if the correct protocols are not in place to ensure participants are able to provide free and informed consent.

Ensuring that risks are properly managed is an important element of all research. However, when vulnerability is so narrowly equated with risk, people’s agency – their right to determine whether they want to participate in research – is eroded. In attempting to protect vulnerable participants from unethical practices, we run the risk of excluding their voices from research, policy and practice.^3,7

Institutional barriers

A group’s perceived vulnerability can also be used by institutions – including research ethics committees, service providers and statutory bodies (e.g. child protection, criminal legal systems) – to limit access to participants. This is commonly referred to as ‘gatekeeping’.^3,7,9

Often it is important to rely on the discretion of people who have a deep knowledge and understanding of the group that is being approached to participate in research. As researchers, we may not always understand the complexity of the lives of participants. Or we may be unprepared for the ways in which participants respond to the research. ‘Gatekeepers’ can provide important information to ensure that participants are approached with sensitivity.

However, gatekeeping can also be a form of control, grounded in paternalistic ideals. This is particularly evident with populations that are deemed simultaneously vulnerable and risky or dangerous. Box 31.1 provides an example of gatekeeping by statutory bodies on a project exploring the service needs and experiences of mothers in prison.

Research involving vulnerable populations sometimes entails balancing competing ethical and practical considerations. From a practical perspective, there are often external constraints linked to funding and reporting timelines, that limit the amount of time that can be spent on recruitment activities. In these situations, it is sometimes necessary to compromise certain elements of the study – in this case, giving voice to women in custody – in order to safeguard the rights of vulnerable participants.

Gatekeeping may not represent an attempt to prevent certain groups of people from participating in research. The reasons for gatekeeping are varied and in general are intended to protect vulnerable groups from exploitation.⁹ However, whether intentionally or unintentionally, gatekeeping can contribute to a population being hard to reach’ This, in turn, can result in certain groups being excluded from research, thereby diminishing their voices and making them increasingly hard to reach, in an endless loop.

The ethics of research with hard–to–reach populations

In Australia, the ethical conduct of human research is grounded in the principles of merit and integrity, justice, beneficence and respect.¹⁷

There is a tension inherent in seeking to balance these principles. Ensuring that participants are not exposed to, or directly caused, harm as a result of research is fundamentally important. However, participants also have the right to decide whether they want to participate in research. This is embodied in the principle of respect, which states that ‘respect for human beings involves giving due scope, throughout the research process, to the capacity of human beings to make their own decisions.’^17(p11) As researchers, we have an ethical obligation to support vulnerable groups to be active participants in research.

Ethical research involves more than just managing risks. It is about genuine engagement with communities and research participants, based on respect for their autonomy, dignity and expertise in their own lives. The inclusion of people with lived experience in research project – from conceptualisation to dissemination of findings – can be a powerful means of empowering vulnerable populations to be heard.¹⁸ The slogan ‘nothing about us without us’^18,19 highlights the importance of genuine engagement, ensuring that people with lived experienced are consulted and included in every stage of research.

Additional ethical considerations with hard–to–reach populations

• As far as practicable, engage people with lived experience early in the research process – preferably before you design the study.
• Include adequate and appropriate remuneration for lived-experience consultants and participants in the research budget. Consultants should be paid for their time as experts; research participants should be compensated for their time in a way that reflects their contribution. Participants should also be reimbursed for the cost of travel. Paying participants is a contentious area of research ethics. Some research ethics committees are not comfortable with high-value payments to participants, due to the risk that this will act as an inducement to participation, thereby limiting a participant’s capacity to provide free and voluntary consent. What constitutes a ‘high-value’ payment can be arbitrary, but in our research, $80 and $100 payments have been considered excessive by multiple ethics committees. However, high-value payments can be ethically justified as a means of recruiting and retaining research participants, and as a gesture that participants’ views are valued.
• Develop thorough research protocols that explain how participant distress and participant safety, as well as researcher distress and safety, will be managed. Additional considerations may be needed, depending on the nature of the population. For example, when undertaking research with families involved in the child protection system, it is important to consider:
  • the potential for extreme levels of distress among participants, including threats of suicide
  • legal obligations on the research team to report suspected child maltreatment to relevant authorities, and how this will be managed
  • how the research team will manage participant disclosures of harm perpetrated against them.
• Ethics should always be about more than managing risk. Ethical research with hard-to-reach populations is fundamentally about valuing the perspectives of people who are often excluded from research. It is about respecting their autonomy to choose whether they want to participate in a study, and about creating safe spaces that will enable their participation.
• There are unique considerations that apply to research with or about First Nations Peoples. Chapter 19 explores this in more detail.

Summary

Undertaking research with hard-to-reach populations can be challenging. Despite these challenges, it is important that researchers attempt to engage with these populations as they have too often been rendered invisible in research and policy discussions. Rather than only seeing their vulnerability and marginalisation as evidence of risk, we should be working to empower the silenced and invisible members of society to contribute to and participate in research. The experiences and perspectives of hard-to-reach populations are valuable in their own right. They also have the power to broaden our understanding and develop more creative and meaningful solutions to entrenched structural problems.

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