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Ethical Issues in Community-Based Research with Children and Youth

Ethical Issues in Community-Based Research with Children and Youth

Bonnie Leadbeater
Elizabeth Banister
Cecilia Benoit
Mikael Jansson
Anne Marshall
Ted Riecken
Copyright Date: 2006
Pages: 256
  • Book Info
    Ethical Issues in Community-Based Research with Children and Youth
    Book Description:

    Efforts to apply ethical guidelines and regulations to vulnerable populations are often problematic. Consequently, health and social scientists sometimes shy away from the challenges of research, particularly when it means addressing value-laden social problems such as sexuality, drugs, and racism.Ethical Issues in Community-Based Research with Children and Youthis a collection of essays that describe the uniqueness of community-based research, outlining several of the ethical concerns that it engenders. The contributors examine such issues as the scope of informed consent to multiple stakeholders, determining competence to give consent in marginalized populations, and managing dual roles as participant researchers. The collection suggests that a more collaborative, ongoing, and discursive approach is needed by researchers and by ethical review boards to ensure that research on sensitive social problems with high risk populations is supported and also conducted with a clear understanding of the highest ethical standards possible.

    eISBN: 978-1-4426-7465-3
    Subjects: Sociology

Table of Contents

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  1. Front Matter
    (pp. i-iv)
  2. Table of Contents
    (pp. v-viii)
  3. Preface
    (pp. ix-xiv)
  4. Acknowledgments
    (pp. xv-xvi)
  5. Contributors
    (pp. xvii-xx)
  6. Part I: The Ecology of Informed Consent in Vulnerable Child and Youth Populations and First Nations

    • 1 Community-Based Research with Vulnerable Populations: Challenges for Ethics and Research Guidelines
      (pp. 3-21)

      University–community research alliances have ushered in new methods for investigating social problems, as well as innovative or best practices for preventing or treating them. Typically, these alliances or partnerships bring together teams of university-based researchers from various disciplines with targeted members of the non-university community (for example, policy makers, police, grassroots operations, not-for-profit groups, health service providers, teachers, parents, and children or youth themselves) to address issues of mutual concern in ways which ensure that relevant questions are posed and that valid research findings can be rapidly disseminated to users as well as written up for publication in academic...

    • 2 Through the Community Looking Glass: Participant Consultation for Adolescent Risk Research
      (pp. 22-41)

      In the United States, increases in adolescent risk-taking behaviours have renewed public anxiety about the adequacy of current social policies to promote their healthy development (Takanishi, 1993). In response, developmental scientists have been called on to generate the knowledge necessary to design intervention strategies that can reduce health-compromising behaviours jeopardizing the development of productive and adaptive life skills during the critical years of adolescence (Fisher & Lerner, in press and 1994; Haggerty, Sherrod, Garmezy & Rutter, 1996).

      As the scientific study of adolescent risk has moved from the experimental laboratory to the community, the need to evaluate the costs and...

    • 3 At the Edge of Consent: Participatory Research with Student Filmmakers
      (pp. 42-56)

      Traditional Pathways to Health is an ongoing project that is unlike most research on Aboriginal health and wellness. It is a participatory action research project conducted with First Nations teachers and youth in Victoria, British Columbia. Using digital video technology, the youth themselves identify the questions and issues relevant to them, gather footage in the form of interviews, images, songs, and text, and use digital video editing technology to produce short videos. These videos are then viewed by members of the university and the wider community, in homes, classrooms, and the offices of Aboriginal community organizations. While the project was...

  7. Part II: Longitudinal Samples:: Protecting Privacy and Maintaining Consent

    • 4 A Youth Population Health Survey
      (pp. 59-69)

      Along with an increasing number of surveys that collect data for various purposes are resources that describe and guide this data collection process (see for example, Gilbert, 2001; Robson, 2002). These publications range from short guidebooks to extensive and detailed commercial and non-commercial products, such as the Total Design Method (Dillman, 1978). Most writing in this area has focused on maximizing the reliability and validity of the analyses that are conducted. While emphasizing the importance of research design, sample selection, and survey construction, the literature places less emphasis on the ethical issues that may arise and how they may be...

    • 5 The Ethics of Peeking behind the Fence: Issues Related to Studying Children’s Aggression and Victimization
      (pp. 70-90)

      Over the past fifteen years our research group has been involved in multimethod research into children’s and adolescents’ experiences of bullying, victimization, and related problem behaviours. Bullying is a relationship problem in which one person uses power aggressively to cause distress to another (Pepler, Craig, Yuile, & Connolly, 2004). As bullying interactions are repeated, the relative power of the aggressive child over the victimized child becomes increasingly differentiated. Bullying encompasses a wide range of verbal, social, and physical forms of aggression such as name-calling, social exclusion, gossiping, spreading rumours, hitting, issuing threats, and confinement. Bullying is most often short-lived, verbal,...

  8. Part III: Weighing Benefits and Preventing Harms

    • 6 The Ecstasy and the Agony of Collecting Sociometric Data in Public School Classrooms: Challenges, Community Concerns, and Pragmatic Solutions
      (pp. 93-110)

      Most children care deeply about fitting into their peer group, getting along, and making friends. Many children want to have someone to sit with at lunch, play with at recess, hang around with after school, make sure they never are picked last for a team, and commiserate with when they are feeling left out and excluded. Researchers seeking to understand social development have been powerfully motivated to discover what enables children to initiate peer interactions and maintain friendships. This question is central to the subarea of developmental and child clinical psychology that focuses on children’s peer relationships, which has burgeoned...

    • 7 Ivory Tower Ethics: Potential Conflict between Community Organizations and Agents of the Tri-council
      (pp. 111-136)

      Recently, extreme negative outcomes of school-based peer victimization among adolescents have attracted substantial media attention in Canada. In British Columbia, the suicides of two adolescents, one girl and one boy, have been attributed to intense emotional and frequent physical abuse from their peers at school (Jiwa, 2000; McMartin, Fong & Skelton, 2000; Munro, 2000; Owens, 2000). In Alberta an adolescent boy, reported to be alienated and rejected by his peers, shot and killed a popular boy in his high school (Dimmock, 1999; Nagy, Stewart & Dudley, 1999). More recently, lawsuits have been brought against school administrators and teachers by individuals...

  9. Part IV: The Special Case of Research with Groups

    • 8 Youth on the Margins: Qualitative Research with Adolescent Groups
      (pp. 139-156)

      Adolescents spend much of their time in groups – in classrooms, with their families, and among their peers. Connectedness with groups reinforces personal relationships and offers a context in which youth can learn about themselves as individuals (Connell, 1990; Harter, 1999). Peer groups are of particular importance in their lives, and very influential for most teens. Within this arena they may try out new styles, discover new selves, engage in new relationships, and encounter new ideas. The relational dynamics that unfold when conducting focus group research with young people are very similar to those encountered in other youth groups. The use...

    • 9 Walking a Fine Line: Negotiating Dual Roles in a Study with Adolescent Girls
      (pp. 157-172)

      Ethical issues can emerge at every stage of community-based research and intervention and can present significant challenges. Community-based research is often designed to contribute not only to science or knowledge but also to the participants and their community. Researchers must choose their methods with sensitivity, according to the culture, needs, and perspectives of the participant population. The communitybased researcher also needs to take into account the participants’ and gatekeepers’ assessments of the risks and potential benefits of research, and furthermore, must take the lead in apprising all involved and the community of these issues (Sieber, 2000).

      Researchers using qualitative research...

  10. Part V: Child Protection Issues in Research with Vulnerable Children and Youth

    • 10 Respect and Protect? Conducting Community–Academic Research with Street-Involved Youth
      (pp. 175-189)

      This chapter discusses two difficult ethical challenges we faced in conducting a community–academic research collaboration: ‘Risky Business? Experiences of Youth Involved in the Sex Trade.’ This University of Victoria CAHR project followed a sample of street-involved youth over time, examining their risk behaviours (including incidental or entrenched involvement in trading sex) and the impact of those behaviours on their health and well-being.

      Methodologically, it is difficult to reach these youth because they are marginalized both socially and economically and because much of their behaviour – including interactions with the drug or sex trades – is highly stigmatized. Street-involved youth also have,...

    • 11 Conducting Research in Child Maltreatment: Problems and Prospects
      (pp. 190-206)

      Child maltreatment is an important public health problem that requires a commitment to scientifically rigorous research if we are to understand its prevalence, risk and protective factors, and sequelae. This information is critical to inform the development of effective approaches to prevention and treatment. Researchers must carry out scientifically sound inquiries while protecting the subjects of research from harm. This dilemma is no more pronounced than when children and adolescents are participants and child abuse and neglect is the focus of the research. The clear articulation of the ethical and methodological problems faced by child maltreatment researchers is crucial in...

    • 12 The Study of Suicidality among Children and Youth: Preliminary Recommendations and Best Practices
      (pp. 207-218)

      In recent years, increased research attention on the mental health of children and youth has exposed disconcerting findings regarding the prevalence of suicidality, which includes suicidal ideations, plans, attempts, and completions. Suicide is the second-leading cause of death among Canadian youth between 10 and 19 (Health Canada, 1999) and the third-leading cause of death among American youth between 15 and 24 (Anderson, 2002; Centers for Disease Control and Prevention, 2004; National Institute for Mental Health, 2003). Data from the Youth Risk Behavior Study (see Grunbaum, Kann, Kinchen, Williams, Ross, Lowry & Kolbe, 2002), a national survey of students in Grades...

  11. Part VI: Summary and Recommendations for Ethical Guidelines, Research, and Training

    • 13 Unique Roles, Unique Challenges: Graduate Students’ Involvement in Community–Academic Research
      (pp. 221-231)

      Academics, policy makers, and practitioners are forming collaborative research partnerships to increase the evidence base for policy and practice, and graduate students are central to research that is being conducted. The Healthy Youth in a Healthy Society Community Alliance for Health Research (CAHR) project at the University of Victoria aims to train graduate students to forge, maintain, and advance community–academic research partnerships in the course of their target projects and throughout their careers.¹ One aspect of this training involves helping them develop an understanding of the ethical dilemmas that can arise in the context of community–academic partnerships, and...

    • 14 Stepping into Community-Based Research: Preparing Students to Meet New Ethics and Professional Challenges
      (pp. 232-247)

      Training in research ethics is too often viewed as inconsequential. In most social science programs, students take course work on ethics separately from courses in the substantive areas of the discipline, and even separately from courses on research design and analysis. In programs offering professional degrees, such as clinical psychology and counselling, students usually complete a course on ethics; however, the content focuses almost entirely on ethical issues related to clinical practice. When research ethics are covered in such courses, students often get the message that research ethics are relatively straightforward and easily resolved through a quick reference to standards...

    • 15 Including Vulnerable Populations in Community-Based Research: New Directions for Ethics Guidelines and Ethics Research
      (pp. 248-266)

      What have we learned from the case studies of community-based research presented in this book? In this chapter we reflect on the benefits of community-based interdisciplinary research for increasing the inclusion of marginalized populations and for increasing knowledge to help us better address a range of long-standing social problems. We also summarize the ethical dilemmas that warrant continued discussion and research. For some ethical concerns, strategies and guidelines for ethical research practice already exist. For others, we argue that ethical solutions are not merely a matter of adjudicating compliance with an established set of guidelines. Rather, for these a more...