Ethical issues in participatory arts methods for young people with adverse childhood experiences

ContextParticipatory arts‐based methods such as photovoice, drama and music have increasingly been used to engage young people who are exposed to psychosocial risks. These methods have the potential to empower youth and provide them with an accessible and welcoming environment to express and manage difficult feelings and experiences. These effects are, however, dependent on the way these methods are implemented and how potential ethical concerns are handled.ObjectiveUsing the current literature on arts‐based health research as a foundation, this paper examines ethical issues emerging from participatory arts methods with young people with traumatic experiences.ResultsWe present a typology covering relevant issues such as power, accessibility, communication, trust and ownership, across the domains of partnership working, project entry, participation and dissemination. Drawing on our extensive clinical and research experiences, existing research and novel in‐practice examples, we offer guidance for ethical dilemmas that might arise at different phases of research.ConclusionAdequate anticipation and consideration of ethical issues, together with the involvement of young people, will help ensure that arts methods are implemented in research and practice with young people in a fair, meaningful and empowering way.Patient or Public ContributionThe issues reviewed are largely based on the authors'' experience conducting participatory research. Each of the projects referenced has its own systems for PPI including, variously, consultations with advisory groups, coproduction, youth ambassadors and mentor schemes. One of the coauthors, Josita Kavitha Thirumalai, is a young person trained in peer support and has provided extensive input across all stages.     

Youth and wellbeing: experiencing bereavement and ill health in marginalised young people’s transitions

Research that explores youth transitions, health, bereavement and wellbeing is rare. Rarer still is research that does this on the basis of long‐term, longitudinal, qualitative research with socioeconomically disadvantaged young people. This article draws upon biographical interviews undertaken with 186 young adults in some of England’s poorest neighbourhoods (in Teesside, North East England) to examine how experiences of health, wellbeing and bereavement interact with processes of youth transition and social exclusion. Depression was the most widespread health problem arising from the multiple pressures and hardships encountered in contexts of severe socioeconomic deprivation. Unpredictable ‘critical moments’ (for example, of bereavement) were common and had unpredictable consequences for youth transitions. It is argued that research of this sort, particularly with a close, qualitative and biographical focus on critical moments, has value for research about youth, health and wellbeing that seeks to better understand how spatially concentrated, class‐based inequalities are lived by young people and play out in their lives.     

Promoting social inclusion for young people affected by psycho-social disability in India – a realist evaluation of a pilot intervention

ABSTRACT

India has 600 million young people, more than any other country in the world. Mental illness is the leading burden of disease for young people, and those affected experience restrictions in social participation that compromise recovery. The aim of this study was to assess the impact of a peer-led, community-based, participatory group intervention on social inclusion and mental health among 142 young people affected by psycho-social disability (PSD) in Dehradun district, Uttarakhand. Qualitative data were obtained via in-depth interviews and focus-group discussions. A realist evaluation identified contextual factors, mechanisms and outcomes to develop the programme theory. Group participants described intermediate outcomes including establishment of new peer friendship networks, increased community participation, greater self-efficacy (for young women particularly), and improved public image (for young men) that are likely to have contributed to the primary outcomes of greater (self-perceived) social inclusion and improved mental health (as assessed quantitatively). Mechanisms were identified that explain the link between intervention and outcomes. These findings demonstrate the effectiveness of a brief intervention to improve mental health and social inclusion for young people with PSD and are potentially relevant to programme implementers and policy-makers working with young people and promoting social inclusion, in other low- and middle-income settings.     

Longing to belong: Social inclusion and wellbeing among youth with refugee backgrounds in the first three years in Melbourne,Australia

For young people with refugee backgrounds, establishing a sense of belonging to their family and community, and to their country of resettlement is essential for wellbeing. This paper describes the psychosocial factors associated with subjective health and wellbeing outcomes among a cohort of 97 refugee youth (aged 11–19) during their first three years in Melbourne, Australia. The findings reported here are drawn from the Good Starts Study, a longitudinal investigation of settlement and wellbeing among refugee youth conducted between 2004 and 2008. The overall aim of Good Starts was to identify the psychosocial factors that assist youth with refugee backgrounds in making a good start in their new country. A particular focus was on key transitions: from pre-arrival to Australia, from the language school to mainstream school, and from mainstream school to higher education or to the workforce. Good Starts used a mix of both method and theory from anthropology and social epidemiology. Using standardized measures of wellbeing and generalised estimating equations to model the predictors of wellbeing over time, this paper reports that key factors strongly associated with wellbeing outcomes are those that can be described as indicators of belonging – the most important being subjective social status in the broader Australian community, perceived discrimination and bullying. We argue that settlement specific policies and programs can ultimately be effective if embedded within a broader socially inclusive society – one that offers real opportunities for youth with refugee backgrounds to flourish.     

Managing food insecurity through informal networks of care: an ethnography of youth practices in the North of England

Food insecurity in the UK is a pressing concern that is associated with poor health outcomes. Research to date has focused on the challenges for adults in providing food for families. However, there is little evidence showing how children and young people experience food insecurity, particularly outside of the home and school. This paper, drawing on 14 months of ethnography in a youth club in the North of England, explores how young people manage food insecurity. In this youth club, the circulation of takeaway food is part of an informal network where boys purchase, share and receive food. This practice allows the boys to participate meaningfully within their peer groups whilst also providing stable access to food. This peer practice, however, was not available to everyone. This was a gendered practice that for the girls held little benefit due to their concerns about eating and pressure to provide for others. Instead, some girls depend on romantic relationships for food provision that is equated with affection and care. The findings will be discussed through a ‘materialities of care’ perspective to explore the complex ways in which food as a practice of care is part of everyday routines embedded within local places.     

Social transformation,collective health and community-based arts: ‘Buen Vivir’ and Ecuador's social circus programme

ABSTRACT

Worldwide, interest is increasing in community-based arts to promote social transformation. This study analyzes one such case. Ecuador's government, elected in 2006 after decades of neoliberalism, introduced Buen Vivir (‘good living’ derived from the Kichwan sumak kawsay), to guide development. Plans included launching a countrywide programme using circus arts as a sociocultural intervention for street-involved youth and other marginalised groups. To examine the complex ways by which such interventions intercede in ‘ways of being’ at the individual and collective level, we integrated qualitative and quantitative methods to document relationships between programme policies over a 5-year period and transformations in personal growth, social inclusion, social engagement and health-related lifestyles of social circus participants. We also conducted comparisons across programmes and with youth in other community arts. While programmes emphasising social, collective and inclusive pedagogy generated significantly better wellbeing outcomes, economic pressures led to prioritising productive skill-building and performing. Critiques of the government's operationalisation of Buen Vivir, including its ambitious technical goals and pragmatic economic compromising, were mirrored in social circus programmes. However, the programme seeded a grassroots social circus movement. Our study suggests that creative programmes introduced to promote social transformation can indeed contribute significantly to nurturing a culture of collective wellbeing.     

Youth social action: building a global latticework through information and communication technologies

New technologies and a growing global consciousness have created innovative opportunities for young people to connect locally, nationally and internationally for social action. This paper describes the dynamics of collective action in this new environment. Particular attention is given to how youth social action initiatives use information and communication technologies (ICT) to foster connection, action and sustainability. In-depth interviews were performed with five youths (aged 18-24 years) and two youth workers at two international non-government organizations (NGOs) focusing on social justice and human rights: Global Youth Connect and Amnesty International Canada. Qualitative methods were used to code and analyze the interview tapes and notes. Three main results are discussed: (i) the role of connection in building a youth action movement; (ii) the differential use of various communication technologies; and (iii) access barriers to connection opportunities. ICT enables new and expanded ways of connecting youth to express and share their experiences, which is a key success factor for social action initiatives.     

The experiences of young people with obesity in secondary school: some implications for the healthy school agenda

In 1995, the World Health Organisation launched a Global School Health Initiative to reduce health risks among young people. In the UK, the National Healthy School Programme (HSP) developed as part of a wider government commitment to promoting social inclusion. One of the key issues to be tackled by the programme is childhood obesity, for obesity is widely argued to be a public health problem for which a solution needs to be found. However, the assumption that obesity is necessarily problematic and that a higher body weight leads to health problems and social exclusion, is not without challenge. Critics of anti-obesity campaigns question the significance of weight per se and highlight the potential implications of discrediting not only fatness, but also the people who are seen as fat. This paper therefore explores the experiences of young people with obesity within the secondary school environment in relation to areas of concern prioritised by the HSP. The paper draws upon data from a qualitative research study involving 18 children and young people, between the ages of 10 and 17. Data were generated in focus group discussions and individual interview with participants of a community-based obesity intervention programme in South Yorkshire, UK. Data collection took place in 2005, and thematic analysis of the data was undertaken. Findings suggest that the issues prioritised in the HSP, particularly physical exercise and healthy eating, present challenges to young people with obesity and can reinforce their vulnerability to bullying in schools and contribute to their social exclusion. It concludes that social exclusion is a process experienced by, and pertinent to, children and young people, which has meaning for their experiences of, and during, childhood and youth. The whole-school approach of the HSP may fail to adequately address the experiences of marginalised and vulnerable groups of young people within schools, challenging and undermining the social inclusion agenda in which the programme is grounded and contributing to the construction of undesirable, fat, young bodies.     

Enabling talk and reframing messages: working creatively with care experienced children and young people to recount and re-represent their everyday experiences

ABSTRACT

The educational experiences and outcomes of care experienced children and young people is of longstanding concern. The pervasive inequalities they face suggest that current policies have been unable to respond fully to the complex causes of the problem. This paper reflects on a qualitative study into the educational experiences and aspirations of children and young people who are looked after in Wales. The project worked with care experienced peer researchers and drew on visual, creative and participatory techniques to explore 67 children’s and young people’s experiences of education and, importantly, their opinions on what could be done to improve it. This multimodal approach allowed space for participants to think through their subjective, mundane, but important, experiences that operate alongside, and interact with, more structural challenges. A range of films, magazines, artwork, and music outputs were developed to ensure that the project recommendations could reach wide and diverse audiences. This paper argues the voices of children and young people need to be given a platform to inform policy and practice. For this to happen researchers need to be creative in their approaches to both fieldwork and dissemination; harnessing the power of the arts to make positive changes in the everyday lives of children and young people.     

The Participation of Disabled Children and Young People: A Social Justice Perspective

There is an increasing expectation that children, young people and their parents should participate in decisions that affect them. This includes decisions about their health and social care and collective or public decisions about the way in which such services are designed, delivered and evaluated. Indeed this has become a policy priority across the United Kingdom. The participation of disabled children and young people, however, has been slow to develop in the United Kingdom and concerns have been expressed about progress in this area. Drawing on the results of an Economic and Social Research Council-funded, mixed-methods study, the aim of this article is to explore the participation of disabled children and young people through a social justice lens. Participants, recruited by purposeful sampling, included 18 disabled children and young people, 77 parents and 90 professionals from one health and social care trust in Northern Ireland. There were four phases of data collection: surveys to parents and professionals, parent interviews, interviews with children and young people using creative and participatory techniques, and a focus group with professionals. Results showed that for most disabled children and young people, decision-making was firmly grounded in a family-centred model. However, when children and young people were drawn into participatory processes by adults and recognised as partners in interactions with professionals, they wanted more say and were more confident about expressing their views. Choices, information and resources were at times limited and this had a key impact on participation and the lives of these children, young people and their parents. The article concludes by exploring implications for further research and practice. The need for a two-pronged, social justice approach is recommended as a mechanism to advance the participation agenda.     

Evidence-based advocacy. the Australian Research Alliance for Children and Youth (ARACY)

The Australian Research Alliance for Children and Youth (ARACY) was established in 2002 by leading stakeholders from three sectors - research, government policy, and professional practice - concerned to tackle the major issues affecting the wellbeing of Australia's children and young people. This is a network-based organisation, with major emphasis on collaboration across these three sectors. Strong emphasis is placed on promoting an evidence-based approach, focussing on a manageable number of key topics, building and disseminating the knowledge base, and translating knowledge into positive solutions that have support across these sectors. This network approach is making a difference in attracting support for evidence-based advice about effective early intervention in areas of particular concern for the wellbeing of young people, such as mental health, drugs and alcohol use, juvenile justice, and vocational skills training.     

An Exploratory Study of Oncology Specialists' Understanding of the Preferences of Young People Living With Cancer

Awareness about the specific needs of Adolescents and Young Adults (AYA) aged 15–25 with a diagnosis of cancer has grown rapidly over the past 10 years. To improve outcomes for these patients it is essential that services are developed within youth friendly models. This requires awareness by healthcare professionals of unique biological, genetic, epidemiological, psychological, social, and cultural factors that affect the AYA population. This study sought to explore oncology professionals understanding of the healthcare preferences of AYAs with cancer receiving treatment at a specialist cancer centre. Participants comprised 60 professionals in allied health (n = 15); nursing (n = 32); oncology (n = 6) and those from the Victorian AYA Cancer Service (n = 7). A questionnaire, developed from pilot work, collected demographic information, investigated professionals' top five perceived issues for AYAs, and examined perceptions in the areas of communication; information provision; environment; services; education, employment and social life, fertility and sexuality; support and survivorship. Results illustrate that, with a strong focus on survival and physical wellbeing, professionals significantly underestimate the breadth of AYA psychosocial concerns. The findings further indicate: that young people report different healthcare preferences compared to those reported by professionals; there are varying levels of professional skill, experience and confidence; there are significant workforce development and support needs for professionals; and AYA models of care require rigorous evaluation to ensure the improvement of outcomes for young people living with cancer.     

YOUNG PEOPLE TODAY

The new sociology of childhood sees children as competent social agents with important contributions to make. And yet the phase of childhood is fraught with tensions and contradictions. Public policies are required, not only to protect children, but also to control them and regulate their behaviour. For children and young people in the UK, youth justice has become increasingly punitive. At the same time, social policies have focused more on children's inclusion and participation. In this interplay of conflict and contradictions, the role the media play is critical in contributing to the moral panic about childhood and youth. In this article, we consider media representations of “antisocial” children and young people and how this belies a moral response to the nature of contemporary childhood. We conclude by considering how a rights‐based approach might help redress the moralised politics of childhood representations in the media.     

Realizing or Relinquishing Rights? Homeless Youth,Their Life on the Streets and Their Knowledge and Experience of Health and Social Services in Hillbrow,South Africa

Poverty and youth unemployment are critical issues in South Africa with homeless persons begging at traffic light intersections in all major cities. Support services represent one way of empowering homeless youth. The study therefore examined the experiences of 10 homeless young adult males in Hillbrow, Johannesburg and whether they were aware of local health and social services. Qualitative interviews revealed that participants experienced poor health, addiction, physical violence, psychological trauma, and public hostility. Despite limited education, they were aware of and utilized local health and social services. Findings are discussed in terms of their implications for social work.     

Identifying and strengthening the structural roots of urban health in Canada: participatory policy research and the urban health agenda

An urban health research agenda for health promoters is presented. In Canada, urban issues are emerging as a major concern of policy makers. The voices raising these issues are from the non-health sectors, but many of these issues such as increasing income inequality and poverty, homelessness and housing insecurity, and social exclusion of youth, immigrants, and ethno-racial minorities have strong health implications as they are important social determinants of health. Emphasis on these and other social determinants of health and the policy decisions that strengthen or weaken them is timely as the quality of Canadian urban environments has become especially problematic. We argue for a participatory urban health research and action agenda with four components: (a) an emphasis on health promotion and the social determinants of health; (b) community-based participatory research; and (c) drawing on the lived experience of people to influence (d) policy analysis and policy change. Urban health researchers and promoters are urged to draw upon new developments in population health and community-based health promotion theory and research to identify and strengthen the roots of urban health through citizen action on public policy.     

Exploring Transitions with Disabled Young People: Our experiences,Our Rights and Our Views

At the beginning of the 2000's there was little evidence of outcomes from the participation of disabled children and young people in decision-making within public services. In the 15 years that have followed, advances have been made in participatory research and in outcome-led research. This paper, written with young people, will present evidence of the outcomes from a research project led entirely by a group of disabled young people. We are Aidan, Jessica and Jamie and we are part of the eXtreme group which is supported by Investing in Children (a children's human rights project based in the North East of England). The eXtreme group consists of 50 young people aged 12–19 who get involved in decision-making to improve the lives of disabled people. Investing in Children promotes children and young people's rights. Over the past year we have made children's voices heard, by getting them involved in decision-making. One of the topics we have looked at is Transitions, and we are putting together a DVD based on people's experiences, such as young people moving from schools into colleges or universities or into adult services. Transitions processes start at primary school right through to applying for a job. In every step of the way, young people with disabilities have different experiences through Transitions. This research has been carried out entirely by young people who are now working with local services to make improvements.     

Mindfulness and meditation as an adjunctive treatment for adolescents involved in the juvenile justice system: Is repairing the brain and nervous system possible?

Adolescents involved in the juvenile justice system are prone to more traumatic events than other adolescents, leaving them in danger of developmental difficulties. Trauma exposure is predictive of poor outcomes including mental and physical health issues as well as criminal activity. Current treatment approaches either have a nominal effect on recidivism rates or increase the likelihood of future criminal offenses. This article explores adolescent brain development, the unique difficulties that juvenile justice youth face, and mindfulness meditation as an adjunctive treatment to system-based treatment. Mindfulness meditation may be a way to redress damage to the brain and facilitate healthy brain development, thus impacting prosocial behavior. Practice implications include integrating mindfulness meditation as an important part of rehabilitative efforts with juvenile justice youth.     

Sexual minority youth, social connection and resilience: from personal struggle to collective identity

Sexual minority youth are at increased risk for negative health outcomes including substance abuse, depression, anxiety, and suicide. Researchers suggest that sexual orientation victimization is a predictor of such outcomes. Social connectedness--or the importance of belonging where youth perceive they are cared for and empowered within a given context--has been associated with positive youth outcomes. This qualitative study utilized life story methodology. Life stories are considered to be important expressions of one's identity and are shaped by personal, social, and cultural contexts. Twenty-two interviews were conducted with 15 young people ranging in age from 14 to 22 years. Two focus groups with youth were also conducted. Youth were recruited from rural and urban communities in Massachusetts. This study contributes to the literature on resilience by including the voices of sexual minority youth and explores the meaning of social connection in their lives. Youth discuss the ways in which individual connection and group affiliation served to affirm one's identity, and provided a forum for moving personal struggle to collective action. The findings suggest the need to reconceptualize consequences of disconnection (such as depression or suicide) from individual pathology and attend to these consequences as a response to discrimination and stigma. Implications for these findings and areas for future research are discussed.     

The psychological development of justice and injustice in child maltreatment: some theoretical implications

This article presents how children construct their experiences of justice and injustice and how abuse relates exclusively to the meanings assigned to these constructs. The effects of trauma are most apparent when significant and generalized others (i.e.; family, community, culture) cannot maintain the human contracts that bond people, define social order, and ensure justice. The psychological adaptation of the child is also shaped by the way the legal system responds to the plight of the child, and how the traumatic event is interpreted according to the ethical standards that the child has developed.     

Coming ‘down here’: Young people's reflections on becoming entrenched in a local drug scene

Recent research has highlighted the ways in which social structural processes and physical environments operate to push young drug users towards risk. We undertook this study in order to explore how young people who were currently street-entrenched characterized and understood their initiation into the local drug scene in downtown Vancouver, Canada. Semi-structured qualitative interviews were conducted with 38 individuals recruited from a cohort of young drug users known as the At-Risk Youth Study (ARYS). Participant narratives reflected an understanding among young people that they are simultaneously pulled and pushed towards the local scene. Push factors were understood as circumstances that propelled young people towards this setting, in some cases because of proximity to it from a very early age, and in other cases because of adverse situations experienced elsewhere and the need to find a new place to live that was both affordable and safe. Interwoven with accounts of how youth were pushed towards the local scene were stories that emphasized a high degree of autonomy and the factors that initially attracted them to this scene, including a desire for excitement, independence and belonging. Once young people were more permanently based in downtown Vancouver, participants identified several factors that accelerated their entrenchment in this locale, including increasingly ‘problematic’ drug use, an intensified need to generate income, experiences of chronic homelessness, and unstable social relationships. Our findings stress the need for early intervention with youth, before they are initiated into the social networks and processes that rapidly propel young people towards risk within these contexts. Once initiation has occurred, the boundary between safety and risk quickly becomes difficult to navigate, and young people become highly vulnerable to numerous harms.