Gaining ethical approvals to undertake sexual health research with young people in the UK: Applying a 'Children's Rights Based Approach'

This paper (co-written with Dr Maria Lohan, Dr Carmel Kelly & Professor Laura Lundy) will describe the ethical review process to undertake health research in the UK, and explain an approach that can help researchers deal with ethical and methodological dilemmas in their research. Ethical review is necessary to ensure researchers and participants are protected, yet the requirement to ‘pass’ numerous committees may be challenging particularly for health researchers who work with vulnerable groups and sensitive topics. The inclusion of these groups/topics is crucial if health researchers are to understand health disparities and implement appropriate interventions with health benefits for vulnerable populations. It is proposed that to overcome ethical and methodological challenges and pitfalls, researchers must implement strategies that advocate for, and increase the participation of, vulnerable populations in health research. A ‘children’s rights based approach’ using participatory methodology will be described that draws on the jurisprudence of international law, (United Nations Convention on the Rights of the Child, 1989) and provides a framework that may empower ethics committees to carry out their function confidently. The role of the researcher, framed within the context of doctoral level study, will be reviewed in terms of the investment required and benefits of utilising this approach. It will be argued that adopting this approach with vulnerable groups, not only guarantees their meaningful participation in the research process and permits their voices to be heard, but also offers ethics committees an internationally agreed upon legal framework, ratified by their governing States, from which to fulfil their obligations and resolve their ethical dilemmas. Increasing the representation and participation of vulnerable groups in health research can inform the development of health policy and practice based on ‘insider knowledge’ that better engages with and more adequately reflects their specific needs. This is likely to yield numerous health, social and economic benefits for all of society through the delivery of more equitable, effective and sustainable services.

Childhood, Rights and Justice in Northern Ireland

Building on primary research and previous publications (Haydon, 2012; Haydon, 2014; Haydon and Scraton, 2008; McAlister, Scraton and Haydon, 2009; Scraton and Haydon, 2002), this chapter will provide a critical analysis of children’s rights and youth justice in Northern Ireland. More broadly, it will consider recent research concerning the criminalisation of children and young people in the United Kingdom and profound concerns regarding the policing and regulation of children raised in successive concluding observations about the UK Government’s implementation of the UN Convention on the Rights of the Child (UN Committee on the Rights of the Child, 1995, 2002, 2008). From this generic context, the chapter will map the ‘particular circumstances’ of Northern Ireland - a discrete legal jurisdiction to which powers for justice and policing were devolved only in 2010. Emerging from four decades of conflict and progressing through an uneasy ‘peace’, rights-based institutions and enabling legislation have, in principle, promoted and protected human rights. Yet children and young people living in communities marginalised by poverty and the legacy of conflict continue to experience inconsistent formal regulation by the police and the criminal justice system, while enduring often brutal informal regulation by paramilitaries. The chapter will explore evident tensions between the dynamics of criminalisation and promotion/ protection of children’s rights in a society transitioning from conflict. Further, it will analyse the challenges to securing children’s rights principles and provisions within a hostile political and ideological context, arguing for a critical rights-based agenda that promotes social justice through rights compliance together with policies and practices that address the structural inequalities faced by children and young people.

Do Children still need to Escape Childhood? A Reassessment of John Holt and his Vision for Children's Rights

The work of children’s liberationists have been long been critiqued for pushing the parameters of rights discourse too far; specifically, by suggesting that there are no significant differences between children and adults, including their ability for self-determination. John Holt’s 1974 text Escape from Childhood is one such work which was deemed highly controversial for its time. This article uses Holt’s Escape from Childhood as an overarching framework against which to examine the current state of play on children’s rights as explicated through the UN Convention on the Rights of the Child. It suggests that whilst Holt has often been critiqued for being too radical, in the context of current children’s rights discourse Holt’s visioning is not as radical as it might first appear.

(Re)examining the relationship between children's subjective wellbeing and their perceptions of participation rights

In recent years wellbeing has been linked increasingly with children’s rights, often characterised as central to their realisation. Indeed it has been suggested that the two concepts are so intertwined that their pairing has become something of a mantra in the literature on childhood. This paper seeks to explore the nature of the relationship between wellbeing and participation rights, using a recently developed ‘rights-based’ measure of children’s participation in school and community, the Children’s Participation Rights Questionnaire (CPRQ), and an established measure of subjective wellbeing – KIDSCREEN-10. The data for the study came from the Kids’ Life and Times (KLT) which is an annual online survey of Primary 7 children carried out in Northern Ireland. In 2013 approximately 3,800 children (51% girls; 49% boys) from 212 schools participated in KLT. The findings showed a statistically significant positive correlation between children’s overall scores on the KIDSCREEN-10 subjective wellbeing measure and their perceptions that their participation rights are respected in school and community settings. Further, the results indicated that it is the social relations/autonomy questions on KIDSCREEN-10 which are most strongly related to children’s perceptions that their participation rights are respected. Exploration of the findings by gender showed that there were no significant differences in overall wellbeing; however girls had higher scores than boys on the social relations/autonomy domain of KIDSCREEN-10. Girls were also more positive than boys about their participation in school and community. In light of the findings from this study, it is suggested that what lies at the heart of the relationship between child wellbeing and children’s participation rights is the social/relational aspects of both participation and wellbeing.

Linking Family Engagement with a Rights Perspective: Macro Factors Influencing Practice

While child welfare practitioners in many countries are struggling to develop methods of effective family engagement, they operate within different national and cultural contexts which influence, both positively and negatively, the ability to engage with families. Increasingly, international comparisons are necessary to further understanding of the development of social work practice. This is particularly necessary because most countries utilize international frameworks (such as the United National Convention on the Rights of the Child) to provide guidance in the development of policies, programs, and interventions. Each country (and locality) struggles to advance practice to be more effective and humane. Our paper offers a comparative analysis focused on family-oriented and rights-based frameworks of different countries. Based on a review of current national policies and a review of the literature regarding family based practices, we examine similarities and differences among four countries: the United Kingdom, Sweden, the United States, and South Korea. These countries were selected because they have some similarities (advanced industrialized democracies, professional social work, formal child protection systems) but have some differences in their social welfare systems (policies, specific practices, socio-cultural context). These differences can be utilized to advance understanding regarding the promise and potential for family engagement strategies. We then discuss the utility of this comparison for theory-building in the arena of child care practice and conclude by identifying the challenges and limitations of this work.

The four general principles of the United Nations Convention on the Rights of the Child: the potential value of the approach in other areas of human rights law

At the outset of the United Nations Convention on the Rights of the Child, the Committee on the Rights of the Child identified four of its provisions (non-discrimination; best interests of the child as a primary consideration; life, survival and development; and participation) as ‘general principles’. This approach has shaped implementation of, advocacy for and the scholarship on the Convention. The use of general principles has the potential to make a significant contribution in other areas of human rights law provided that the principles are selected carefully and address the distinct issues at the root of potential rights violations for particular rights-holders.

Ethical aspects of children’s perceptions of information-giving in care

The aim of this study was to identify key aspects in the exchange of information and to determine how nurses communicate news to hospitalised children. For this study, we applied the critical incident technique with 30 children aged between 8 and 14 years. Data were collected in paediatric units in a hospital in Alicante (Spain) using participant observation and semi-structured interviews. The analysis yielded three main categories: the children’s reaction to the information, nursing staff behaviour as a key aspect in the exchange of information and communication of news as well as children’s experience. This article emphasises the need to promote children’s consent and participation in nursing interventions. An analysis of these aspects will verify whether children’s rights are being respected and taken into account in order to promote children’s well-being and adaptation to hospitalisation.

Towards beneficence for young children in research : challenges for bioethics committees

Bioethics committees are the focus of international scrutiny,particularly in relation to their application of the principle of beneficence,ensuring that risks incurred in research are outweighed by benefits to those involved directly and to the broader society. Beneficence, in turn, has become an international focus in research with young children, who hitherto had been rarely seen or heard in their own right in research.Twenty years ago, The United Nations Convention on the Rights of the Child 1989 raised global awareness of children’s human rights to both participation and protection, and articulation of children’s rights came to inform understandings of young children’s rights in research. In the intervening period, countries such as Australia came to favour child protection and risk minimisation in research over the notion of children’s bone fide participation in research. A key element of the protection regime was the theoretical understanding of young children as developmentally unable and, therefore, unfit to understand, consent to and fully participate as research participants. This understanding has been challenged in recent decades by new theoretical understandings of children’s competence, where children can be seen to demonstrate competence, even at an early age, in consenting to, participating in and withdrawing from research. The paper draws on these understandings to provide insights for human research gatekeepers, such as bioethics committees, to deal with the challenges of research with young children and to realize the benefits that may accrue to children in research.

Legal, cultural and practical developments in responding to female genital mutilation : can an absolute human right emerge?

Female genital mutilation (FGM) is a cultural practice involving the deliberate, non-therapeutic physical modification of young girls’ genitalia. FGM can take several forms, ranging from smaller incisions, to removal of the clitoris and labia, and narrowing or even closing of the vagina. FGM predates and has no basis in the Koran, or any other religious text. Rather, it is a cultural tradition, particularly common in Islamic societies in regions of Africa, motivated by a patriarchal society’s desire to control female bodies and lives. The primary reason for this desire for control is to ensure virginity at marriage, thereby preserving family honour, within a patriarchal social structure where females’ value as persons is intrinsically connected to, and limited to, their worth as virgin brides. Recent efforts at legal prohibition and practical eradication in a growing number of African nations mark a significant turning point in how societies treat females. This shift in cultural power has been catalysed by a concern for female health, but it has also been motivated by an impulse to promote the human rights of girls and women. Although FGM remains widely practiced and there is much progress yet to be made before its eradication, the rights-based approach which has grown in strength embodies a marked shift in cultural power which reflects progress in women’s and children’s rights in the Western world, but which is now being applied in a different cultural context. This chapter reviews the nature of FGM, its prevalence, and health consequences. It discusses recent legal, cultural and practical developments, especially in African nations. Finally, this chapter raises the possibility that an absolute human right against FGM may emerge.

A city for all citizens : integrating children and youth from marginalized populations into city planning

Socially just, intergenerational urban spaces should not only accommodate children and adolescents, but engage them as participants in the planning and design of welcoming spaces. With this goal, city agencies in Boulder, Colorado, the Boulder Valley School District, the Children, Youth and Environments Center at the University of Colorado, and a number of community organizations have been working in partnership to integrate young people’s ideas and concerns into the redesign of parks and civic areas and the identification of issues for city planning. Underlying their work is a commitment to the Convention on the Rights of the Child and children’s rights to active citizenship from a young age. This paper describes approaches used to engage with young people and methods of participation, and reflects on lessons learned about how to most effectively involve youth from underrepresented populations and embed diverse youth voices into the culture of city planning.

Ethics in Research with Children

Widespread scholarly interest in ethics in research with children, as an extant field of inquiry and practice, is a relatively new phenomenon. The discipline of ethics can be traced back to the Hippocratic school, but its contemporary applications in the everyday worlds of children and those around them are gaining greater attention from theorists, practitioners, and those involved in policy. Heightened international awareness of the United Nations Convention on the Rights of the Child (1979) gave significant impetus to increasing international awareness of children’s rights to provision, protection, and participation in everyday contexts, including those in which research occurs. Understandings of research ethics and of children’s involvement in research relate to broader understandings of children and childhood drawn from developmental science, sociology, human geography, health sciences, and children’s human rights to participation and protection. Key understandings pertain to children’s competence to participate in research, to operate as reliable informants with respect to their own lives, to provide voluntary informed consent and dissent in research, and to make meaningful decisions about the nature and extent of their participation. The field is international and interdisciplinary, although bounded by legislative, policy, and jurisdictional requirements governing research—its conduct and dissemination. So, too, the burgeoning work of ethics committees, whether in relation to health research or social research, is evidence of a sharpened focus on governance of child research. Oxford Bibliographies offers a suite of perspectives, resources, and strategies to guide the researcher, practitioner, and policymaker and serves to challenge readers to interrogate conceptual understandings, methodologies, and dissemination of research with and about children. Exploration of the suite opens up new possibilities for considering children’s rights to participation in matters that affect their lives and for children to be seen and heard in research.