Summary Document: Ethics

Ethics and Research with Young People in Challenging Contexts

summary document

Guiding question for this report:

What are the ethical approaches and issues in conducting research with children and youth in challenging contexts?

This document presents a summary of the information found in the CYCC Network’s knowledge synthesis report Ethics and Research with Young People in Challenging Contexts. This report brings together existing research and practice based knowledge to explore various ethical approaches and ethical challenges to conducting research involving children and youth in challenging contexts.

2Ethics and Research with Young People in Challenging Contexts

Core Concepts

The CYCC Network

The CYCC Network is a national body with an international reach. We bring together youth, community groups, front line practitioners, government officials, and researchers, all working with children and youth in challenging contexts (CYCC) throughout diverse Canadian communities. We know how to help kids do well in their lives. Now we just need to share what we know with each other. The CYCC Network represents a combination of local commitment, combined with a national and international platform.

Knowledge Mobilization

“Knowledge mobilization” is the process of taking really good ideas and turning them into action. And then taking practices and linking them with theory. It means that good research doesn’t have to just end up on a library shelf. It also means that communities across the country are sharing their ideas of what works with at-risk kids.

Resilience

The capacity of young people to navigate their way to the psychological, social, cultural and physical resources they need for well-being. Resilience is also their capacity as individuals, and collectively within communities, to negotiate for these resources to be provided and experienced in culturally meaningful ways.

Best Practices

Best Practices emerge when programs and other interventions use evidence-informed practice, and combine these findings with the right mix of programming elements that fit community needs and assets.

To improve mental health and well-being for vulnerable and at-risk children and youth in Canada and around the world.

3www.cyccnetwork.org

KnowledgeDiagram

To truly provide the best service and interventions for at-risk young people,

diverse types of knowledge need to be shared and integrated. Academic

research (evidence-informed practice) needs to be linked to what service

providers are learning (practice-based evidence) and to local

community knowledge.

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Practise

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Evidence

LocalKnowledge

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*arrows show the flow of knowledge


Core Concepts con't

Populations Vulnerable children and youth are not all the same; they differ in terms of their experiences, contexts, and cultures. They face common threats to their mental health that come from constraints and challenges built into their community and societal structures. No young person or population of young people is inherently more vulnerable than another. It is the contexts in which they reside that makes them more vulnerable.

These populations may include:

• Aboriginal children and youth

• Homeless children and youth

• Youth gangs

• Child labourers in the workplace or who have been trafficked

• Children and youth living with health-related challenges (i.e. chronic or mental illness)

• Children and youth affected by war (e.g. child soldiers, refugees)

• Children and youth in military families

• Children and youth affected by natural disasters

• Immigrant children and youth

• Children and youth subject to maltreatment

• Children and youth in alternative care (e.g. juvenile justice system)


These factors often intersect, such that a child or youth is likely to experience several stressors at once.

Some of the common factors that shape these contexts are:

Historical oppression

Populations who have been historically exposed to continuous levels of violence and mass trauma such as colonialism, war, genocide, and slavery, typically display higher rates of mental health illness such as suicide ideation, depression, anxiety, and alcohol and substance abuse. Historical oppression can create cycles of violence and trauma within individuals, rela-tionships and communities that can be passed on from one generation to the next.

Marginalization

Marginalization is the process by which individuals or groups live at the periphery of society because of their exclusion from the economic, social, political, and/or cultural arenas of everyday life. This process is linked to social status and can have a significant impact on how resources are accessed and mobilized, and how decisions are negotiated and made.

Social Exclusion

Social exclusion is exclusion from economic, social, political and/or cultural arenas or everyday life because of indicators such as gender, ethnicity, race, and class. It can be experienced at a personal, community or institutional level. As with historical oppression, marginalization and poverty, experiencing social exclusion can lead to low self-esteem, feelings of hopelessness and depression, and increased risk-taking behaviours, as well as other adverse mental health outcomes.

Poverty

Poverty may be one of a range of factors thatincrease the vulnerability of children and youth.


introduction to ethical issues

The United Nations Convention on the Rights of the Child states that:

“The child shall have the right to freedom of expression; this right shall include freedom to seek, receive and impart information and ideas of all kinds, regardless of frontiers, either oral-ly, in writing or in print, in the form of art, or through any other media of the child’s choice.” iii

This shift towards including youth in research has the potential to give young people a greater opportunity to voice their views and perspectives in an effort to influence both policy and practice. ivv Several authors have argued that there remains a need to translate existing rights into workable ethical practices. In addition, the move toward including the voices of youth has created a number of ethical dilemmas which challenge researchers, practitioners, and REBs.

One set of concerns identified in the knowledge synthesis is related to the role that REBs play in overseeing research practices with youth. The expectations of REBs can be difficult to meet, particularly when research attempts to incorporate the viewpoints of young people. Commonly used ethical standards are based upon a model that was originally developed for biomedical research. These standards can create barriers to the participation of children and youth who live in challenging contexts. This has the potential to limit what we can learn about the experiences of youth who face adversity, and may limit our ability to create programs and policies that take the perspectives of vulnerable youth into account.

Social research conducted with youth in challenging contexts attempts to gain insight into the lives and perspectives of a wide variety of young people. While there are risks associated with such research, there are also potential rewards both for participants in research and society at large.

Institutional research ethics are the rules and regulations that are intended to minimize the risks of participating in research, and promote respectful and fair research methods. Research ethics are usually implemented by Research Ethics Boards (REBs). REBs approve, reject, suggest modifications to, or discontinue proposed or ongoing research that does not meet the ethical standards set by universities and other research organizations. In Canada the actions of REBs are guided by the Tri-Council policy statement which is based on a number of core principles including: respect for persons, concern for welfare, and justice.

Including the voices, experiences and interpretations of youth in social research has received growing recognition in recent years.ii Some research has successfully engaged youth – providing avenues for them to be heard and inform our understanding of what the needs and priorities of youth are. In general, arguments supporting the rights of children to play an active role within research are gaining traction.


This knowledge synthesis revealed a number of issues and debates that surface when vulnerable youth are involved in research. Broadly speaking, it was found that conventional approaches to conducting ethical research have the potential to diminish the voices of youth who are already marginalized.

The available evidence suggests that differences can exist between the expectations of REBs and those of researchers working with children and youth in challenging contexts. REBs often require that researchers follow specific procedures for such things as maintaining the privacy of youth and ensuring informed consent. In some cases, these requirements are incompatible with conducting research in a way that many researchers believe to be truly ethical.

Many researchers strive to represent the views of the young people they work with, and some have worked with REBs to create research strategies that are capable of meaningfully involving youth while still meeting institutional ethical requirements. One case of effective collaboration between researchers and REBs is outlined further on in this summary report.

The literature on research ethics with youth is organized around four topics:vii

Informed Consent: What are the important issues relevant to obtaining informed consent from children and youth in challenging contexts? What does informed consent mean in varying cultural contexts?

Payment and Compensation: How should youth be compensated for participating in research?

Privacy and Confidentiality: What privacy concerns are relevant to research with youth in chal lenging contexts? Do young people share the concerns about maintaining privacy that have traditionally been important?

Harms and Benefits: How do REBs assess risk and how do underlying assumptions about risk relate to the experiences of youth research participants?

Informed Consent

While informed consent appears to be a straight-forward concept, it should instead be recognized as an ongoing process informed by a complicated set of contextual factors.xi In social research with youth, consent exists within a complex network of social dynamics, cultural nuances, inequalities, and oppressive forces that can influence a young person to agree to participate in research.x

When gathering consent from youth, it is important to consider the complications that their given context may add. For example, youth who live independently

or in contexts of conflict, or a young person dealing with mental health challenges, may be impacted by particular power relations that cause them to experience consent differently.xi

The knowledge synthesis suggests that researchers working with youth should strive to develop procedures for ensuring consent which are flexible and nuanced. In some cases it may be necessary to tailor consent procedures to the context of the young people who are specifically involved in the research.


key findings


Privacy and Confidentiality

Traditionally, a ‘one-size-fits-all’ approach has been adopted around issues of privacy and confidential-ity, and REBs frequently mandate the anonymity of research participants. However, examples exist in which youth have objected to remaining anonymous in research. This suggests that universal anonymity is not an adequate strategy to ensuring ethical research with youth. xviii

Harms and Benefits

The relationship between the potential risks and potential benefits of research is at the heart of most discussions of research ethics. Efforts to weigh the harms and benefits of youth participation in research appear to be rooted in a desire to produce the best possible research outcomes while protecting research participants from harm. However, there is some danger that overly protective attitudes toward vulnerable youth may lead to excluding young people from participating in research which could be beneficial to them. This exclusion may itself be considered harmful.xxi

Accurately calculating the risks and benefits of participation in research first requires an evaluation and understanding of contextual information.xxii There is a need to develop methods of ensuring that REBs evaluate risks based on an accurate understand-ing of the experiences of young people in research, and not on assumptions about these experiences.

key findings con't

Payment and Compensation

The knowledge synthesis found that most researchers who work with youth agree that youth should be compensated for their time and experience participating in research.xii

While there is relative consensus that some form of compensation is necessary, there remains consider-able debate around exactly how to approach youth compensation, and what style of compensation is appropriate. While cash payments are argued to be suitable in some contexts,xiii in other contexts researchers recommend that in-kind payments such as gift certificates or school supplies be used instead.xiv

Concerns have been voiced around the relationship between the socio-economic context of research participants and compensation, and the relationship between consent and compensation in resource-poor areas.xvi There are no simple, generalizable answers to resolving concerns about the effects of compensation on consent. Developing strategies on a case-by-case basis may be the best way forward.xiv

The knowledge synthesis found that providing youth with opportunities to speak freely about their expe-riences can be beneficial for youth research partici-pants, and can also lead to productive research out-comes. On the other hand, some studies highlighted the potential dangers in identifying youth research participants. xix

A nuanced approach to dealing with issues of privacy and confidentiality may be necessary to ensure that youth are protected from risks of participating in research, and that the potential benefits of research participation are maximized. xx


Case study: the resilience research centre

The Resilience Research Centre (RRC) works to understand the processes by which young people can achieve positive psychosocial outcomes despite facing significant adversity.

Their work attempts to incorporate localized understandings of resilience processes and outcomes, to which community ownership of research plays an important role. The organization increases community ownership by involving local Advisory Committees consisting of four to six youth or adults who are involved with youth research participants in the research context. Committee members work to ensure that the research remains relevant to the youth who are involved in the study, and that research is carried out in a locally appropriate way. It is largely through interaction with Advisory Committees that challenges to REB approved research designs have emerged.

One RRC research site presented challenges to conventional ethical procedures regarding informed consent. A local Advisory Committee opposed a model of obtaining written consent from parents on the grounds that it was dangerous to require youth to carry legal-looking documents home from school to be signed by their parents. Doing so, they argued, could endanger the lives of these youth as the documents might be understood by paramilitaries as evidence of collusion with government authorities. As a compromise, the REB overseeing the researchproject agreed that consent of a parent or legal guardian could be waived in cases of youth aged 14 and over who had a concern about the safety of obtaining written consent.

This approach exemplifies an effective collaboration between researchers and REBs to create a research strategy that both maintained the formal ethical integrity of the project while also protecting youth from harm they might encounter as a result of their participation. This demonstrates that researchers can obtain REB approval for research designed with ‘vulnerable groups’ that fall outside of mainstream models of ethical research.xxiii


Conclusion

This knowledge synthesis report found that the ethical and methodological considerations involved in research with youth are complex, and vary greatly according to the social, economic and political context within which research takes place.

Over the last two decades, developments related to ethics have led to an increased recognition of the importance of listening to young people’s voices and experiences. These developments have also led to the advance of theory supporting the inclusion of youth perspectives in research.xxiv

While there are strong theoretical arguments that support capturing the views of youth within research, there still remain many barriers to implementing this approach. In many cases, institutional research ethics mechanisms fail to adequately reflect the ethical complexities of conducting research with children and youth in challenging contexts. While institutional research ethics procedures are well-intentioned, they at times work to exclude the views and opinions of youth, particularly youth deemed to be ‘vulnerable.’xxv

The current challenge is to draw together theoretical and practical insights developed by researchers who are working with youth, and to mobilize this into meaningful organizational change. This report is intended to synthesize evidence gathered from researchers and practitioners, with the goal of creating a resource that can be used to advocate for the conduct of more ethical research with children and youth in challenging contexts.

Research which seeks to honor the perspectives of youth should build upon the already existing work of researchers who are attempting to push beyond the boundaries created by conventional ethics.


policy checklistThis checklist has been designed to help you implement the recommendations from the CYCC Network’s knowledge synthesis report Ethics and Research with Young People in Challenging Contexts. You can use it to guide your organizations programs and policies for conducting research with vulnerable children and youth.

Organizations that work with youth can act as advocates for youth involved in research or evaluation. They can work to redress power imbalances that exist between researchers and youth, and can ensure that the interests of youth are represented throughout the research process.1)

There are key ethical issues that require consideration within any research project involving youth. These issues are:

• Informed consent• Payment and compensation• Privacy and confidentiality• Harms and benefits

2)

Our organization has a procedure for learning how we can best support youth we represent.

Our organization has a policy for dealing with the requests of researchers seeking youth research subjects.

Our organization is engaged throughout the research process to ensure that the interests of youth are represented in the design of research, in the conduct of research, and in the dissemination of research.

Our organization works to understand how key ethical considerations affect the youth we represent in research and evaluation.

Our organization has a sufficient understanding of these issues so that we can advocate for the interests of the youth we represent to external researchers.

Our organization has a procedure for learning from the experiences of youth involved in research.

3) Youth should be compensated for participation in research. The most appropriate form of compensation may vary (eg. cash may be appropriate in some circumstances, while material gifts like school supplies may be more appropriate in others).

Our organization engages with the youth we represent to learn what the most appropriate forms of compensation for participation are.

We advocate for the most appropriate form of compensation for the youth we represent.



4) There is no one-size-fits-all process for ensuring the informed consent of youth to participate in research. Generally, youth must be provided with information, must interpret this information, and must then make a decision regarding their participation. Each part of this process is complicated by the ability of youth to understand information provided by researchers and by power differentials between youth and researchers.

Our organization works with researchers to develop an appropriate and effective means of informing potential research participants.

Our organization requires that researchers provide information to potential research participants that is clear, age appropriate, and manageable in terms of time and content.

Our organization ensures that youth do not feel pressured to consent to participation in research. We ensure that they feel able to say no.

5) Maintaining the privacy and confidentiality of research participants is sometimes important. At other times youth may wish to have their names attached to research that they help create. Privacy considerations are unique to each research context.

Our organization requires that researchers and evaluators engage with youth to create an acceptable strategy for dealing with privacy.

Our organization requires researchers to tailor their strategy for dealing with privacy and confidentiality to the experiences of the youth we represent.

6) It is important to ensure that calculations of harms and benefits of participating in research and evaluation are based on realistic assessments of both. Both researchers and youth participants should have shared understandings of potential risks and benefits.

Our organization engages with researchers to ensure the goals of research-ers and the interests of research participants are as aligned as possible.

Our organization requires researchers to help youth develop realistic expectations of how they will benefit from participation in research.

7) Policies and procedures regarding research ethics may need to change to reflect the experiences and learnings of every program or organization.

Our organization will reflect on and learn from our experiences as we implement the above recommendations for conducting research with vulnerable young people. We will review our practices and procedures regularly and revise them when needed.


i Canadian Institutes of Health Research, Natural Sciences and Engineer-ing Research Council of Canada, Social Sciences and Humanities Research Council of Canada. (1998 with 2000, 2002, 2005 amendments). Tri-Coun-cil Policy Statement: Ethical Conduct for Research Involving Humans. http://www.pre.ethics.gc.ca/pdf/eng/tcps2/TCPS_2_FINAL_Web.pdf

ii Hill, M. (2006). Children’s voices on ways of having a voice: Children’s and young people’s perspectives on methods of consultation. Childhood, 13, 69-89.

iii United Nations Convention on the Rights of the Child. http://www.unicef.org/crc/index_30160.html

iv Powell, M.A., Fitzgerald, R., Taylor, N.J., & Graham, A. (2012, March). International Literature Review: Ethical Issues in Undertaking Research with Children and Young People (Literature review for the Childwatch International Research Network). Lismore: Southern Cross University, Centre for Children and Young People / Dunedin: University of Otago, Centre for Research on Children and Families.

v Bell, N. (2008). Ethics in child research: rights, reason and responsibili-ties. Children’s Geographies, 6, 7-20.

vi Liebenberg, L and Ungar, M. (2011). Ethical Concerns regarding Partic-ipation of Marginalized Youth in Research. International Society for the Study of Behavioural Development. 1(59). 24-27.

vii CP MERG (2012), Ethical principles, dilemmas and risks in collecting data on violence against children: A review of available literature, Statis-tics and Monitoring Section/Division of Policy and Strategy, UNICEF, New York.

viii Powell, M.A., Fitzgerald, R., Taylor, N.J., & Graham, A. (2012,). Interna-tional Literature Review: Ethical Issues in Undertaking Research with Children and Young People (Literature review for the Childwatch Inter-national Research Network). Lismore: Southern Cross University, Centre for Children and Young People / Dunedin: University of Otago, Centre for Research on Children and Families.

ix Gallagher, M., Haywood, S. L., Jones, M. W., & Milne, S. (2010). Negotiat-ing informed consent with children in school-based research: A critical review.24(6)

x ERIC. Case study: Informed Consent. Retrieved from: http://childethics.com/resources/case-studies/

xi Powell, M.A., Fitzgerald, R., Taylor, N.J., & Graham, A. (2012, March). International Literature Review: Ethical Issues in Undertaking Research with Children and Young People (Literature review for the Childwatch International Research Network). Lismore: Southern Cross University, Centre for Children and Young People / Dunedin: University of Otago, Centre for Research on Children and Families.

xii Powell, M.A., Fitzgerald, R., Taylor, N.J., & Graham, A. (2012). Interna-tional Literature Review: Ethical Issues in Undertaking Research with Children and Young People (Literature review for the Childwatch Inter-national Research Network). Lismore: Southern Cross University, Centre for Children and Young People / Dunedin: University of Otago, Centre for Research on Children and Families.

References

xiii Morrow, V. (2009). Young Lives working paper. Available online www.younglives.org.uk

xiv Alderson, P. & Morrow, V. (2004). Ethics, social research and consulting with children and young people. Barkingside: Barnardos.

xv Alderson, P. & Morrow, V. (2004). Ethics, social research and consulting with children and young people. Barkingside: Barnardos

xvi Powell, M.A., Fitzgerald, R., Taylor, N.J., & Graham, A. (2012). Interna-tional Literature Review: Ethical Issues in Undertaking Research with Children and Young People (Literature review for the Childwatch Inter-national Research Network). Lismore: Southern Cross University, Centre for Children and Young People / Dunedin: University of Otago, Centre for Research on Children and Families.

xvii Rice, M., & Broom, M. (2004). Incentives for Children in Research. 36(2).

xviii Liebenberg, L and Ungar, M. (2011). Ethical Concerns regarding Par-ticipation of Marginalized Youth in Research. International Society for the Study of Behavioural Development. 1(59). 24-27.

xix ERIC. Case study: Harms and Benefits. Retrieved from: http://childeth-ics.com/resources/case-studies/

xx Bray, R., & Gooskens, I. (2006). Ethics and the everyday: Reconsidering approaches to research involving children and young people. Anthropolo-gy South Africa, 29, 45-55.

xxi Spriggs, M. (2007). When “Risk’’ and “Benefit’’ are open to Interpreta-tion—As is generally the case.7(3)

xxii Lincoln, Y. a. T., William. (2004). Qualitative research and institutional review boards.10(219)Yvonna S. Lincoln and William G. Tierney Qualitative Inquiry 2004 10: 219

xxiii Liebenberg, L and Ungar, M. (2011). Ethical Concerns regarding Par-ticipation of Marginalized Youth in Research. International Society for the Study of Behavioural Development. 1(59). 24-27.

xxiv Powell, M.A., Fitzgerald, R., Taylor, N.J., & Graham, A. (2012). Interna-tional Literature Review: Ethical Issues in Undertaking Research with Children and Young People (Literature review for the Childwatch Inter-national Research Network). Lismore: Southern Cross University, Centre for Children and Young People / Dunedin: University of Otago, Centre for Research on Children and Families.

xxv Swauger, M. (2009). “No Kids Allowed!!! How IRB Ethics Undermine Qualitative Researchers from Achieving Socially Responsible Ethical Stan-dards.” Race, Gender, & Class, 16/1-2: 63-81.



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This summary document is one of seven reports of its kind. Please go to our website to view these summaries or to find the full reports that give an in depth review of evidence and a full list of references on these topics.

This document should be referenced as follows:

CYCC Network (2014).

Funding for the CYCC Network is provided by the Networks of Centres of Excellence

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Summary Document: Ethics