Participatory Research on Child Maltreatment with Children and Adult Survivors

Drawing on key concepts from childhood studies, this chapter provides a theoretical grounding for children's participation rights in research on maltreatment. The chapter discusses the sociology of childhood, tracing how it brought a focus to children's participation in research, and introduces the concepts of adultism and childism to help critique children's participation in research on maltreatment. The chapter is framed by a familiar debate on tensions between children's right to participate and their right to protection. It explores the relevance of these debates for research on child maltreatment. Through its discussion, the chapter explores key issues that have traditionally led to children being kept out of research on child maltreatment. It argues that children's participation is key to advancing knowledge on child maltreatment and fundamentally a way to uphold children's human rights. The concepts introduced in this chapter are threaded and explored throughout the subsequent chapters of the book, in their examination and reflections on children's participation in research on maltreatment.

The objective of the chapter is to provide an integrative appraisal of recent participatory research projects with children on violence and maltreatment conducted by members of the COST Action CA 19106 working group on children's participation (WG3) and their colleagues to identify what is working well and what needs to change in future research. The evaluation of research examples clustered around four key questions: Why, when, how and how much do children participate in research? Data were collected using a unified tool designed to characterise participatory research, which was distributed among WG3 members. In addition, chapters of the current book were another source of data about participatory research. Overall, data on 19 studies involving 46,761 children were collected and analysed using Shier's matrix. Findings show that most studies (n = 10) engaged children as consultants to adults in data collection, whereas a few studies (n = 5) demonstrated a more children-led research approach. The analysis uncovered specific areas where more progress is required, including engaging children in decisions about the research topic, involving young children, utilising methods that are more natural and familiar to children, and gaining children's reflective accounts about their participation experience. The authors encourage scholars to publish their work to advance evidence-based knowledge and skills in participatory research with children about sensitive topics.

Involvement of children in research on different aspects of children's rights, including research on violence against children, is continuously increasing, as is the interest in participatory approaches (European Agency for Fundamental Rights [FRA], 2014; Larsson et al., 2018; UN Committee on the Rights of the Child, 2011). Svevo-Cianci et al. (2011) noted that ‘as researchers commit to learning from community members, including children and adolescents themselves, it has become more clear that an understanding of the lived reality and definition of violence for children in their individual communities, is essential to envision and implement effective child protection’ (p. 985).

In this chapter, the legislative context regarding children's rights to be heard and participate is initially discussed; currently applied age requirements for children to acquire rights across the countries of the European Union (EU) are briefly presented; and children's potential roles and relevant provisions for their participation in social research are explored. The last part is dedicated to the presentation and discussion of the General Data Protection Regulation (GDPR; Regulation [EU] 2016/679, 2016) – specifically, children's personal data–related recitals and articles; the importance of the definition of a legal basis for personal data processing according to the GDPR, including consent; and the necessary information to be provided to children before their data are processed.

From an ethical point of view, the inclusion of children and young people in research is problematic due to their inability to give informed consent and meaningfully express their views. The ethical aspects of research are multiplied if the research participant might have experienced child abuse, neglect, exploitation, or other forms of violence or assisted in such acts. Talking about victimization might be difficult and generate a sense of betrayal of attachment figures. On the other hand, the usual ethical procedure of asking parents or other caretakers to give consent for their children to discuss issues of maltreatment gives them the power to act as gatekeepers to stop children from participating in research. Therefore, researchers should contemplate if parental consent should be waived and how research can be developed to mobilise children's agency and ensure their meaningful cooperation in researching different aspects of violence that affect them. This chapter presents and critically analyses different research examples and discusses their ethical dimensions from a children's rights perspective. The research questions start with discussing the utility of consulting children in research on maltreatment; the gatekeeping role of caregivers; the distress and harm eventually caused to children and young people by participation in research and the benefits of participation for children. The survey examples discussed lead to the conclusions that research on maltreatment might sometimes cause distress; caregivers' power to refuse consent for their children's participation in research on maltreatment can alter epidemiologic data and impede children's right to express their opinion on issues that are central to their lives and therefore, it should be waived; consulting children is essential for collecting data on and improving responses to child maltreatment; and children's contribution to research on maltreatment depends on the adopted methodologies of the research, more advanced forms of participation, and training children to express their opinions, thus enriching scientific knowledge and promoting change.

Culture significantly influences individuals' lives and shapes their behaviour in an ecological framework. In this chapter, we examine the issue of children's participation in research about child abuse and neglect (CAN) in the context of Turkey – a country that bridges the Asian and European continents. This study was based on a review examining studies on CAN in Turkey. Thus, the main goal was to find cultural explanations for the scarcity of participatory research with children in the field of child maltreatment. A review examining studies on CAN in Turkey found that no study included children victims of CAN or explored why children victims of CAN have not been participating in research. Therefore, we analysed ecological factors influencing the participation of children in CAN studies and interpreted the findings based on our observations as experts in this field. The analysis indicated that causes are not only due the characteristics of the caregivers and children but also result from the interaction of various environmental and systemic factors. Recommendations for politicians and researchers to increase children's participation in research are discussed.

This chapter reflects on the use of interviews as a method of data collection with children and presents an innovative tool to encourage children and youth to express their views and opinions about different areas of their life, especially their experiences in foster care. The innovative tool presented is a gamified interview called ‘Play&Talk: The Magic Cards of Foster Care’. The interview progresses through three levels based on the complexity of the topic to be discussed, and the children or young people decide which topics to discuss and in what order to discuss them. Seventeen children in nonkinship foster care participated for the first time in the Play&Talk interviews in a research context. Based on this experience, this chapter discusses ethical issues relevant to promoting children's expression and fully realising their right to be heard and express their opinions. The age of the children (6–11 and 12–17 years old) was considered in design and data collection. It conditioned how children received the research information, how they completed informed consent, the use of language, the selection of questions and feedback regarding the results. In addition, the chapter discusses how to involve children and youth in research and their relationship with researchers. This research tool is an example of how to offer children a more participatory role in research interviews and illustrates the importance of age-appropriate designs.

The population of internationally forcibly displaced people, which includes refugees and asylum seekers, is large and heterogeneous. To determine the varying reasons for and experiences during the migration journey, including exposure to violence and health- and integration-related needs, there is an urgent need to involve children with refugee backgrounds in research and development activities. This chapter describes a model for the child participatory approach developed at Barnafrid, a national competence centre on violence against children at Linköping University in Sweden. The model has been tested in the Long Journey to Shelter study, which investigated exposure to violence and its consequences on mental health and functional ability among forcibly displaced children and young adults. As part of this project, we conducted workshops with children (n = 36, aged 13–18 years) to design a questionnaire on exposure to community violence in the country of resettlement. Experiences recounted during the child participatory workshops indicated no problems involving newly arrived children with refugee backgrounds and Swedish-born adolescents in research activities. However, attention should be paid to proper preparatory work and the need for adjustments. We discuss the results in light of other studies on refugee child participation, the United Nations Convention on the Rights of a Child and diversity considerations.

This chapter discusses how to involve children and young people in decisions and encourage them to express their needs and participate in the decision-making process to develop a quality intervention. By describing the different aspects of projects involving a participatory approach, it shows how giving voice to children and young people unlocked new perspectives regarding the Hungarian child protection system. Participation of children in research is limited in Hungary, partly due to the challenging legislation and authorisation process. This chapter shows how research to develop child-friendly digital tools can contribute to collecting children's views on their needs related to child protection support, and how the process of listening to children can improve parenting and caregiving responses to the needs of younger and older children living with their families or in the child protection system. The chapter analyses the effect of digital applications on children's and young people's capacity to advance towards autonomy, including applications and a video campaign with short video clips created by young people. These projects gave an opportunity for children and youth in the public care system to describe their lives and wishes for the future. The analysis found: (a) for a functional child protection system and to promote development for children and young people, children's voices need to be amplified; (b) by expressing their voices, children become more autonomous; (c) children's voices contribute to decreasing social prejudices against children and young people in public care; and (d) listening to children and youth who age out of care can help professionals working in the child protection system better understand their beneficiaries.

Increased emphasis is being placed on developing creative approaches when working with children in research settings, especially with sensitive research topics like violence against children. Community art is a social form of art that gives artists the opportunity to work in collaboration with the public, with the aim of highlighting and addressing specific social issues. This chapter reflects on an art exhibition organised in Reykjavík called Wishes of Icelandic Children. The project was a collaboration between artists and children. The aim of the chapter is to present how an art exhibition may put violence that children experience into focus and encourage attendees to reflect on the subject by looking at descriptive pictures and texts from the Convention on the Rights of the Child and then writing comments about their thoughts and feelings. The research questions are: How do children express themselves about sensitive topics such as abuse and violence? Can community art enable professionals to better support increased participation of children in discussions about abuse and violence? This study involved a qualitative thematic analysis of comments written by children after having seen the exhibition. Three students took part in the analysis process as co-researchers. The exhibition was successful in creating a platform where children could express themselves on topics concerning abuse and violence. Many comments expressed an ardent desire to end violence in society, especially emphasising bullying, which can limit young people's capacity to feel safe and express themselves.

The topic of parent migration and its effects on the family environment has become a focus of moral dilemmas in East Europe for the last three decades. Children have been portrayed as social orphans and parents working abroad as neglectful parents. Today, with more evidence from research and experience, the impact of parental migration is much more comprehensive and nuanced, recognising its noxious or even harmful but also possibly empowering effects. This chapter reflects on the involvement of left-behind adolescents as co-researchers in a study of transnational families. It acknowledges the agentic role of children (often automatically labelled as victims of neglect), amplifies their voices to inform existing data on the impact of parents' departure to work abroad and identifies directions for intervention that might strengthen families.

The research is an integral part of CASTLE – Children Left Behind by Labour Migration, an ongoing project (June 2021–December 2023). ¹ This chapter presents the research collaboration experience with 12 co-researcher adolescents with previous left-behind experiences, originating from Moldova and currently residing in Romania. The co-researchers participated in all stages of the research process: training, design of data collection, recruitment of research participants, data analysis and dissemination of results. Taking co-researcher roles had an empowering effect on adolescents, who learnt how to express their views on the topic, voiced their experiences about the emotional costs of being left behind by their parents and reflected on sensitive issues like separation of family members and violence in the family.

The neighbourhoods surrounding social housing are often characterised by poverty, high rates of unemployment, community violence and other social stress factors that are often linked with adverse childhood experiences, including diverse forms of family, community and institutional violence against children. Based on the sociology of childhood, which considers children as active subjects with rights and promotes a critical understanding of their participation in matters that concern them, this chapter reviews participatory research with children, highlighting the importance of hearing their voices, to sustain their key role in building knowledge about them and the contexts in which they live. In this case, children participated in research to provide a deeper understanding of their needs in their neighbourhood, the role of their families and communities and what they needed to improve the quality of their lives.

Swedish society has systematically worked to improve children's health and well-being since the early twentieth century and is considered a leading figure globally in battling violence against children. Awareness of violence against children and its detrimental effects on development and health is generally high in Sweden. Violence is also broadly recognised as a violation of human rights. A ban on corporal punishment was enacted in 1948 in social childcare institutions, in 1958 in schools, and in 1979 at home. The more recent landmark was the United Nations Convention on the Rights of the Child, established as law on 1 January 2020. In line with convention's Article 12, stating that a child has the right to express their views in all matters affecting them, more attention to child participation has been paid since 2020. This chapter provides several recent examples of strategic measures that have been used to enhance child participation in governmental assignments and enquiries and state-funded research. We discuss the examples considering the United Nations convention and child participation methods and pinpoint opportunities and obstacles to further develop and consolidate child participation as a norm in publicly funded societal activities.

Based on an extensive literature review, this chapter outlines key developments in global health and research during the last century with focus on the emergence of violence and child maltreatment as international public health priorities. Violence has been known to humans for millennia, but only in the late 1990s was it recognised as a global public health issue. Every year, an estimated 1 billion children are exposed to trauma, loss, abuse and neglect. Child maltreatment takes a social and economic toll on countries. Research initiated in 1985 found child maltreatment to be associated with increased disease, disability and premature death in adult survivors. The global availability of data on child maltreatment is, however, sporadic with low validity and reliability. Few global experts have consulted and involved the survivors of child maltreatment, as the experts by experience, in their attempts to provide a more comprehensive picture of reality. Youth and adult survivors of child maltreatment are often traumatised by the experience, and it is important to use trauma-informed approaches to prevent re-traumatisation. Participatory and inclusive research on child maltreatment is only in its infancy. There is a need for more inclusive research, designed by survivors for survivors, hereby strengthening local capacity building and informing policymakers from the bottom up. This chapter reviews lessons learnt and provides recommendations for how to enhance the participation and inclusion of the experts by experience in research on child maltreatment.

Through research on child sexual abuse (CSA) and adult survivors, knowledge is gained. This knowledge might support decisions – whether political, professional or otherwise – that affect the lives of children who are victims of CSA and adult survivors. Additionally, this knowledge influences what the public knows about CSA and adult survivors and as a consequence, how child victims of CSA and adult survivors are treated in everyday life. Given the huge impact research can have on survivors' lives, this chapter raises the question of what aspects of CSA and survivorship are relevant for survivors from survivors' perspective and whether these aspects can be addressed by Participatory Action Research (PAR) as a research paradigm. To identify relevant aspects, survivors' artwork is analysed because art is a way to contribute to public discourses with very little regulation. For analysis, the Sociology of Knowledge Approach to Discourse is used. In this chapter, we introduce basic theories of knowledge from a constructivist perspective in a short background section and explain the aim and method of analysis. Afterwards, we present some key aspects of survivors' art on CSA and survivorship: The invasiveness of CSA, speech, the symbolic violence behind physical abuse and issues of injustice and responsibility are discussed. Additionally, the discursive relation between artists and audience is of interest to finally answer whether – and, if so, why – PAR is an appropriate research paradigm to address these aspects.

The process of knowledge production is usually assigned to scientists who use specific methods to extract knowledge from someone else's experience. Usually this includes collecting, aggregating and interpreting data from an uninvolved point of view; that is, from the outside. This procedure is supposed to guarantee objectivity and generalisation. Many child sexual abuse (CSA) survivors reject such an approach that turns them into objects again. This presents a problem for research because it limits the number and contribution of potential participants and can lead to bias. In self-help groups of CSA survivors, an enormous amount of experiential knowledge accumulates, and sometimes this is transferred into more than only individually valid knowledge. Based on this experience and aiming for more agency of CSA Survivors, a group of adult survivors and researchers developed a new approach to research. It focuses on the development of self-organised research, which enables survivors of sexualised violence to practice research without losing agency. They are indispensable and elementary parts in all phases of the process. This chapter shows one way of formalising this process so quality criteria can be developed and applied. Following the presented approach, evaluation of the presented methods is the appropriate next step because self-help groups give reason to estimate significant outcomes. These outcomes not only enable self-help groups of CSA survivors to incorporate new methods but also include the chance to empower adults, children or youth who have been victims of sexualised violence.

This chapter focuses on ways of giving voice to the survivors of institutional abuse and how their contribution can be capitalised in raising community awareness of this phenomenon. The collection of testimonies demonstrates that institutional abuse is a common and widespread phenomenon that in most cases remains unrevealed throughout the life course. The participatory research process we describe is part of an important social and clinical intervention developed in the framework of two projects. The chapter illustrates outputs and outcomes related to disclosure of institutional abuse and its long-term consequences, as well as the meaning and implications of collective trauma. Results confirm the need to promote the voice of survivors to build a new professional and community culture and sensitisation towards children's right to be heard as an essential instrument to prevent and detect institutional ill treatment. Participatory processes can overcome the resistance of individuals, professional communities and politicians to recognising the phenomenon, emphasising institutional responsibilities and the specific effects of a serious form of maltreatment that requires extraordinary and specific interventions in terms of intensity and flexibility. This chapter describes a fieldwork and research experience made possible thanks to a strong alliance with survivors who engaged in a process of reflection and theoretical elaboration that generated both social and clinical impacts.