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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Ethical research with young children: Whose research, whose agenda?0

 

The last decade has seen increased global focus on research with young children within and across a range of disciplines (Farrell, 2016). The period, birth to age eight years, known colloquially as the ‘early years’ or ‘early childhood’, has been conceptualized as pivotal to young children’s current wellbeing and future life chances and, in turn, the increasing focus of research within the disciplines of education, health, human services, developmental science, law, economics and neuroscience. New theoretical perspectives, expanded methodological approaches and fresh lines of inquiry are being brought to bear on the ethical design, conduct and dissemination of early childhood research (Kagan, Tisdall & Farrell, 2016). The global focus on ethical research with young children has been prefaced, to some extent, by global recognition of the rights of children to participation and protection in everyday activities (Tisdall, 2012). Despite the focus on children and their rights, child research is largely an adult enterprise serving adult-driven agendas, albeit driven by genuine adult concern for children’s rights to participation and protection. On the one hand, it is driven by the imperative to protect children, quite rightly, from risk of harm, often drawing upon normative views of child development and young children’s pre-competence or developmental incapacity to consent to, participate in or withdraw from research. On the other hand, there is a growing quest to listen to and consult with children as competent and active research participants, while still enacting protective ethical obligations towards them (Alderson & Morrow, 2011). While much child research claims to be with children rather than on, for or about children, the enterprise is typically driven by the agendas of research productivity, performativity and empirical leverage of research within policy and provision for young children – by and for adults. The upshot is that some children, families and communities increasingly experience the over-burden of research, their demographic characteristics making them prime sites for research and their participation essential for attaining research targets and outputs. The enterprise of ethical research with children calls for ethical consideration of the adult performance-driven agendas that drive much child research. It calls for consideration of the agency and active participation of children, families in communities in ways that respect their decision to engage in the research and greater affordances of co-constructed research for children and adults than is currently the case.

References

Alderson, P., & Morrow, V. (2011). The ethics of research with children and young people. A practical handbook (2nd Ed).London: Sage.

Farrell, A. (2016). Ethics in early childhood research. In A. Farrell, S.L. Kagan & E.K.M. Tisdall (Eds.), Sage handbook of early childhood research (pp. 163-184). London: Sage.

Kagan, S.L., Tisdall, E.K.M., & Farrell, A. (2016). Future directions in early childhood research: Addressing next-step imperatives, In A. Farrell, S.L. Kagan & E.K.M. Tisdall (Eds.), Sage handbook of early childhood research (pp. 517-534). London: Sage.

Tisdall, E.K.M, (2012). Taking forward child and young people’s participation. In M Hill, G. Head, A. Lockyer, B. Reid & R. Taylor (Ed), Children’s services: Working together (pp.151-162). Harlow: Pearson.

Contributor
Professor Ann Farrell
Head, School of Early childhood and Inclusive Education
Faculty of Education Queensland University of Technology
QUT staff page a.farrell@qut.edu.au

 

This post may be cited as:
Farrell A. (2017, 23 October 2017) Ethical research with young children: Whose research, whose agenda? Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/ethical-research-young-children-whose-research-whose-agenda

Terms and conditions apply0

 

Kids tell us that making decisions can sometimes be hard (anyone who has taken a child to an ice cream shop can attest to this). Adults don’t often give children choices and kids tell us that when they do it can be confusing: ‘what am I being asked?’, ‘can I really say no?’, ‘do they seriously care?’ and ‘what will happen if I make a decision the adult doesn’t like?’ are questions that might spring to mind. After all, they tell us that it’s not usual for adults to seek out children’s views, to let them make big decisions or to give up some of their ‘adult power’ and act on children’s wishes.

And yet children are required to ‘assent’ to research, often with little information about what research actually is and what they will be required to do. In most cases, they know that their parents have already given permission for them to be involved – which may be reassuring but also a bit daunting (how often is it that kids can say ‘no’ when their parents have already said ‘yes’?) – but in most cases a complete stranger comes into their home or schoolroom and pulls out a note pad and asks them whether their happy to answer a few questions. “Um OK?”

Since the Helsinki Declaration there has been an expectation that children provide assent to their participation in research. Often this entails providing them with a long-winded, legalistic and ‘pretty boring’ information letter, telling them that if they agree they might get a movie voucher or at least a packet of chips and a can of soft drink before asking them to tick a box to show that they agree. As a child in one of my studies reported, the process is ‘kinda like’ the terms and conditions process they go through when downloading a new app from i-Tunes. Like 73% of Terms and Conditions non-readers, kids in research often have no idea what they are signing up for and what their rights are when things go wrong.

In a recent study my colleagues and I conducted for the Australian Royal Commission into Institutional Responses to Child Sexual Abuse we got advice from children and young people about how to best help kids understand and consent to participating in research on a fairly sensitive topic. Based on this advice we conceptualized consent as an ongoing process that included six steps: (1) present information in a child-friendly and accessible way; (2) make sure they understand what research is and what they are expected to do; (3) give them the choice to participate (or not) and ask them to formally agree; (4) give them lots of opportunities (and the skills or tools) to bow out of the research (particularly after they’ve got a ‘feel’ for what they are being asked to do) or to change the way that they are participating; (5) be aware of the ways that kids resist or ‘dissent’ (yawning or sneaking out of the room might give it away) and constantly ‘check in’ with them in child-friendly ways (6) Get an agreement with them at the end of the research activity that they are still happy for their input to be included in the study and negotiate what, if anything, they’re happy for the researcher to share with their parent, teacher or older sibling who is standing behind the door.

In the paper “More a marathon than a hurdle: towards children’s consent in a safety study” my colleagues and I outline how we went through these steps with kids, we describe how we used felt toys, ‘stop signs’ and ‘rights posters’ to help children and young people consent and, most importantly, quote advice and feedback from children and young people on how adult researchers might best help kids to make decisions within the research context.

One tool we feature in the article is our “Charter of Rights” poster which we provide kids in our studies. The poster informs them of what they should expect from us, as researchers, and what to do if they are unhappy. The poster is given to the children prior to them meeting with our staff and is further explained before assent is sought. On the advice of children and young people who have advised our projects, the rights charter has also been used as the basis of a series of games and activities that can be used to help children understand their rights in research (and in welfare practice). More detail about these can be found here. My team at the Institute of Child Protection Studies are working with peers from the Centre from Children and Young People (Southern Cross University), UNSW and the University of Melbourne to progress ethical research with children and young people. We’re currently hosting a survey on ethical decision-making – take a minute to fill it in! We’re keen to chat with others who are grappling with how to meaningfully engage kids in research (and support them to make good decisions) and would love to hear from you. *Terms and Conditions Apply.

Contributor
Dr Tim Moore
Senior Research Fellow | Institute of Child Protection Studies, ACU
Bio page at ACUTim.Moore@acu.edu.au

This post may be cited as:
Moore T. (2017, 21 July) Terms and conditions apply; Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/terms-conditions-apply

Building beneficial relationships when conducting research with migrant communities0

 

In my experience, projects that involve working with migrant groups and communities reveal a range of complex issues with regards to ethics and the types of the relationships between the researcher and participants. While acknowledging the importance of formal ethical requirements I also believe that the concept of research ethics has a dynamic nature which means that many dilemmas that will emerge during the study will require an individual approach that does not necessarily fit into set rules. In this context, researchers working with migrant communities may need to think about how they can do this in a way that benefits both sides and reflects well the research situation. One of the dilemmas here is how to balance the pre-designed with the spontaneous elements of this kind of academic research project, thus avoiding an instrumental approach to gathering data that could lack sensitivity to participants’ needs and situations.

One of the ways of thinking about the research process in ethical terms is to approach it by focusing on the following key elements: characteristics of the researcher and his/her social background, characteristics of the researched community, research methods and settings, research aim and wider agenda. What I also found helpful from my experience of conducting small-scale community-based qualitative projects was defining them through the prism of building relationships between the researcher and the participants in which the purpose and boundaries are clearly identified at all stages. While the characteristics of the researcher and his/her social background play an important role in defining their position within the group and should be taken into account, it is also important to consider how s/he wants to define the roles of researched community and engage with the participants. Would the participants be treated as anonymous interviewees, or act as full collaborators? In case of collaboration will their time be acknowledged and/or compensated, and how? How will the benefits from participation be communicated to the community, before, during and after the study?

Thinking and defining participants’ roles within the study can also help to distinguish different levels of formalisations of relationships between the researcher and the participants, for example, in the situation when one collaborates with community leaders and activists (as well as thinking whether it would be useful/appropriate to use them at all). Other factors to consider when identifying types of relationships could refer to levels of vulnerability of the participants in relation to state policies, immigration status, and media attention and, subsequently, in relation to the aim, subject and scope of the conducted research and its place and connection to wider contexts and networks.

The ‘research process as relationships’ approach also helps to acknowledge the dynamic nature of established connections and perceive them as something that can change and continuously develop throughout the study. The level of closeness, trust and involvement can differ at various points of the study depending on the range of individual and social circumstances of all involved parties. If the project allows, spending more time within the community before, during and after the fieldwork and identifying modes of engagement with community at each stage can help to establish positive relationships and ensure that participants benefit from them as much as the researcher. Working within community-based/migrant contexts can require additional levels of flexibility and sensitivity towards people and their lives, their concerns, tensions, experiences and stories. Integrating these complexities into the research process in the way that would benefit all groups involved in the study is an important ethical task. So, one should think how the benefits from participation will be communicated to the community, will the participation be recognised and how, whether any events will be planned after the fieldwork and whether any further opportunities for contribution to the project will be created? Furthermore, the conditions of the study itself can have an impact on time required to establish positive relationships, such as, the location of the interview (at participants’ home, community centre, public space); whether any visual methods are used and which ones (participant or researcher generated photography); number of the interviews or focus-groups, whether additional methods such as observation are used; what and how to be recorded (audio or video); whether researcher approaches the whole families or specific family members; etc.

Certainly, each project has its own unique elements and conditions and there will always be aspects of the study that will only unfold during the fieldwork when researchers are actively engaged with the participants. At the same time, thinking of the value and impact of the study and how researcher-participant relationships can improve it should be as important as designing interview schedules, consent forms, and invitation letters.

Please see the detailed discussion on ethics and positionality when conducting research of migrants’ homemaking practices:

Pechurina, A. (2015) Material Culture, Migrations, and Identities. Chapter 3. Researching Russianness: A Discussion of Methods. London: Palgrave.

Pechurina, A. (2014) Positionality and Ethics in the Qualitative Research of Migrants’ Homes. Sociological Review Online. Vol (19) 1.

Contributor
Dr Anna Pechurina – Leeds Beckett University | Senior Lecturer in Sociology in the School of Social Sciences
Leeds Beckett profile: http://www.leedsbeckett.ac.uk/staff/dr-anna-pechurina/ Personal webpage: http://www.annapechurina.com/
A.Pechurina@leedsbeckett.ac.uk

This post may be cited as:
Pechurina A. (2017, 26 July) Building beneficial relationships when conducting research with migrant communities Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/building-beneficial-relationships-conducting-research-migrant-communities

Professional ethics0

 

As a follow up on Strategies for resolving ethically ambiguous scenarios last month below is a reprint of a discussion piece by AHRECS senior consultant Colin Thomson

In the first column in this series, the circumstances in which the ethics of health professionals emerge were identified as being a member of a profession and the context of health care. This third column examines the subject of professional ethics in more depth, focussing on matters that are generic to any health profession.

What is a profession?
Although there is no agreed definition, the Australian Consumer and Competition Commission and the Australian Council of Professions have developed the following useful definition of this concept:

A disciplined group of individuals who adhere to high ethical standards and uphold themselves to, and are accepted by, the public as possessing special knowledge and skills in a widely recognised, organised body of learning derived from education and training at a high level, and who are prepared to exercise this knowledge and these skills in the interest of others.

Inherent in this definition is the concept that the responsibility for the health and welfare and safety of the community shall take precedence over other considerations (i).

This identifies the elements that distinguish the ethical character of the professional-patient/client relationship from other relationships. These are the special knowledge and skill of professionals and the exercise of these in the interest of others.

Special Knowledge and Skill
Because professionals have special knowledge and skill, their relationships with patients and clients have been assumed to be unequal: the professional has knowledge that the patient does not. In non-professional relationships, such an inequality can place the uninformed at risk of being influenced, persuaded or exploited. In such relationships, no clear ethical obligations apply to such use of a superior position, and although society recognises the risks of being “conned”, it does not impose ethical obligations. When there is sufficient harm, common law principles that protect against fraud or statutory rules about fair trading can apply. By contrast, professionals are required to use their superior knowledge and skill in accordance with ethical obligations.

In the interest of others
The key ethical obligation of professionals is to use their knowledge and skill in the interests of, or in the health sphere, for the benefit of others, namely their patients or clients. Where professionals use the superior position that their superior knowledge and skill gives them, for their own benefit, they are exposed to professional sanctions. Using a professional relationship for sexual gratification or financial gain unrelated to expert services are gross examples of such conduct and can lead to loss of professional credentials.

From beneficence to respect
The emergence of medicine as a distinct body of knowledge and skill was closely followed by early expressions of the ethics of health professionals, notably by Thomas Percival. Although the obligation to use that knowledge and skill for the benefit of patients was recognised, the benefits of medicine were not then well established. As these benefits increased, this ethical obligation increasingly emphasised the patient’s benefit, an expression of the ethical principle of beneficence or to act for the benefit of others. When this becomes the dominant motivation in a relationship it can become paternalism, as expressed in the aphorism “doctor knows best”.

In the last four decades, as the result of a complex interaction of social factors, the prominence of beneficence has gradually been replaced by the ethical principle respect for autonomy. Although this can be described as a reaction to the undue emphasis on beneficence that became paternalism, the causes are more complex. Nonetheless, respecting a patient’s capacity and entitlement to make decisions about their healthcare has become central to professional ethics in health care.

Respect and beneficence: professional “distance”
The rise of respect for autonomy can present health professionals with another tension: that between respect for a patient’s views and the compassionate desire to achieve a patient’s maximum welfare. In non-professional personal relations, personal attachment and love freely allows such a desire to be expressed. By contrast, expressing compassion can be difficult for professionals because of the detachment and structure required by their relationships with patients. We are free to say we love our friends and family and that love explains our devotion, but professionals are not similarly free and need to express their commitment and compassion through an ethical structure that can feel impersonal.

(i) http://www.accc.gov.au/content/index.phtm/itemId/277772 (accessed 10 December 2009

Republished with permission of the Australian Hospital & Healthcare Bulletin, http://www.hospitalhealth.com.au/subscribe

Contributor
Prof Colin Thomson is one of the Senior Consultants at AHRECS. You can view his biography here and contact him at colin.thomson@ahrecs.com

This post may be cited as:
Thomson C. (2017, 14 July) Professional ethics Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/professional-ethics

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