Voices Of Young People Research Articles

Challenges for children and adolescents with cancer in Europe: the SIOP-Europe agenda.

In Europe, 6,000 young people die of cancer yearly, the commonest disease causing death beyond the age of 1 year. In addition, 300,000–500,000 European citizens are survivors of a childhood cancer and up to 30% of them have severe long-term sequelae of their treatment. Increasing both cure and quality of cure are the two goals of the European paediatric haematology/oncology community. SIOPE coordinates and facilitates research, care and training which are implemented by the 18 European study groups and 23 national paediatric haematology/oncology societies. SIOPE is the European branch of the International Society of Paediatric Oncology and one of the six founding members of the European Cancer Organisation. SIOPE is preparing its strategic agenda to assure long-term sustainability of clinical and translational research in paediatric malignancies over the next 15 years. SIOPE tackles the issues of equal access to standard care and research across Europe and improvement of long term follow up. SIOPE defined a comprehensive syllabus for training European specialists. A strong partnership with parent, patient and survivor organisations is being developed to successfully achieve the goals of this patient-centred agenda. SIOPE is advocating in the field of EU policies, such as the Clinical Trials Regulation and the Paediatric Medicine Regulation, to warrant that the voice of young people is heard and their needs adequately addressed. SIOPE and the European community are entirely committed to the global agenda against childhood cancers to overcome the challenges to increasing both cure and quality of cure of young people with cancer. Pediatr Blood Cancer 2014;61:1551–1557.

Dusting off, refreshing, replacing: A reminder of the importance of triangles in psychological therapies

With the recent drive for evidence-based practices which, as our new co-editor Michael TarrenSweeney pointed out in his inaugural editorial piece earlier this year (see 18(1)), has been the topic of several editorials of this journal in the last few years, there are certain demands made on practitioners. One of the most recent drives that is occurring in Child and Adolescent Mental Health Services (CAMHS) in England is that the CYP-IAPT programme, which is meant to Improve Access to Psychological Therapies for children and young people, is creating whole service transformative changes (Hall et al., 2013). In addition to improved clinical outcomes, these changes – even though not straightforward (Wolpert, Fugard, Deighton, & Gorzig, 2012) – are to ensure that the voices of clients are being voiced, heard and where possible acted upon on various levels within the organizational structure. Examples of these levels are: senior management, practice managers, line and clinical supervision, senior leads and that of practitioners. The voices of young people are to be heard not only in sessions, but also regarding issues from the design of a reception or a waiting area, during the recruitment of staff to appraisal meetings. Despite the isomorphic nature of this huge endeavour, there is the pace of change for individual practitioners. A special group of the organizational players of these whole service changes are clinicians from different disciplines. They have trained long and have varied years of post-qualifying experience in their therapeutic work, and need to come on board with this session-by-session monitoring and more evidencebased delivery of interventions (Millham, 2011). It is this group of people in particular that our journal has a special connection with: the clinicians who meet with children, young people and their families “day in day out” (Vetere & Dallos, 2012). Of all the persons involved in mental health services, they are arguably most susceptible to secondary stress or compassion fatigue (Figley, 1998; Van der Kolk, McFarlane, & Weisaeth, 1996). They have their own processes in addition to what may be available through in-service, regional or other (IAPT) training events that assist in getting prepared and adjusting one’s clinical practice to embrace and incorporate the aforementioned changes. In this editorial, I would like to share a part of my own process of taking stock. With the recognition that we all have attachments to our models and ways of working in addition to the more cognitive and cerebral responses (Midgley, 2009), some of the changes may provoke a sense of excitement in some and uncertainties and anxiety in others. One strategy to deal with anxiety is to look at the introduction of new skills and practices, another could be to reach back and take stock of our existing skills base. Metaphorically speaking, we could open our 508867 CCP19110.1177/1359104513508867Clinical Child Psychology and PsychiatryEditorial research-article2014

Education strategies for social inclusion or marginalising the marginalised?

Education is the pathway that prepares young people for economic independence and social mobility in adulthood. However, school has not always been an experience that leads to success and quality of life. Opportunities and outcomes remain unequal, and subtle barriers are often entrenched in the school system, in themselves the cause of social exclusion. This paper draws on a select review of international studies of young people in historically vulnerable groups to investigate these issues, and finds that mainstream policy and educational institutions have yet to change focus from what is wrong with youth and the policy rhetoric around youth at risk, to what may be wrong with schooling and the consequent need of taking more wide-ranging actions. It also shows that when provided with an opportunity to reflect upon their experiences of education, young people can offer insights into those procedures and actions which have either supported or inhibited their learning. In too many instances, an expression of desire to listen to the voices of young people has been little more than a tokenistic gesture to appease the requirements of legislation or well-intentioned policies. The paper concludes with some conceptual platforms for transnational policy considerations.

Responsibility and participation in transition to university – voices of young people with disabilities

Students with disabilities are quantitatively under-represented in higher education. In this paper, focus is on access to and processes in transition to the initial period at university. The article is based on an empirical study examining young people's points of view, and the overall aim is to draw attention to experiences regarding responsibility and participation. Four narrative configurations represent the voices of how young people with disabilities experience the nature of the responsibility, the distribution of the responsibility and the timing that emerges. Experiences in the university context are categorized into proactive, ambivalent, reactive and non-existent community structures. Representatives of the universities are perceived as taking various levels of responsibility for the difficulties experienced by the young people. Genuine participation seems to be affected by collaboration qualities involving both the surrounding environment and the individual. This could have long-term consequence...

Africa's greatest assets are its young people - Interview: Ahmad Alhendawi, UN youth envoy

Ahmad Alhendawi was appointed in January as the UN Secretary-General’s envoy on youth who will be the voice of young people all over the world. In his Five-Year Agenda, the Secretary-General recognized “working with and for women and young people” as one of his priorities. At 29, Mr. Alhendawi already has a rich background as a youth advocate and activist. Before joining the UN he served as a youth policy advisor for the World Bank–funded programme on institutional development in the Arab League, with headquarters in Cairo, Egypt. He had also been a team leader for a youth project in Iraq and worked with the UN Population Fund and many other organizations and governments on youth issues. In this interview with Africa Renewal’s Kingsley Ighobor on Mr. Alhendawi’s second day in office, the youth envoy talks about his new role, his hopes for young people in Africa and the rest of the world, and his hobbies.

‘Let’s Get Sexting’: Risk, Power, Sex and Criminalisation in the Moral Domain

This article explores the criminalisation and governance of sexting among young people. While the focus is on Australian jurisdictions, the article places debates and anxieties about sexting and young people in a broader analysis around concerns about new technologies, child sexual abuse, and the risks associated with childhood sexuality. The article argues that these broader social, cultural and moral anxieties have created an environment where rational debate and policy making around teen sexting has been rendered almost impossible. Not only has the voice of young people themselves been silenced in the public, political and media discourse about sexting, but any understanding about the differing behaviours and subsequent harms that constitute teen sexting has been lost. All the while, sexting has been rendered a pleasurable if somewhat risky pastime in an adult cultural context lending weight to the argument that teen sexting is often a subterranean expression of activities that are broadly accepted. The article concludes that the current approaches to regulating teen sexting, along with the emergence of sexting as a legitimate adult activity, may have had the perverse consequence of making teen sexting an even more attractive teenage risk taking activity.

‘Until it ends, you never know…’: Attending to the voice of adolescents who are facing the likely death of a parent

Abstract In contrast to much adult-focused and adult-controlled research on the impact of cancer on families, the author's action research project privileges the voice of young people whose parents were seriously ill. Its key findings, as demonstrated in the DVD they produced, were that the young people: box Struggled with the sense of isolation and all-pervasive uncertainty inherent in the life-threatening illness of a parent. box Preferred support and understanding to protection and prevarication. box Disliked delay and deception, preferring to be informed and involved. box Wished to be told the truth as fully and as soon as possible. This article focusses particularly on the teenagers in the research group and presents their voices and views unmediated by adult exegesis. The author argues, on the basis of their evidence, that a clearer recognition of the capacities and competences of young people is needed by all who wish to engage with and support those facing the likely death of a parent.

Language Policy and Multilingual Identity in Sweden Through the Lens of Generation Y

MODERN SOCIETIES IN EUROPE are increasingly multicultural. Sweden today is part of a multicultural and multilingual Europe, where politics, business, education, and the private sphere confront linguistic and cultural diversity. The lives of young people are, in this regard, quite different from those of their parents. Young people travel, work, and study in other countries and move in and out of their home countries more frequently than ever before. New technology facilitates access to multimodal communication with people around the world. Swedish society itself also faces changes as almost 20 percent of its inhabitants have family or roots in other countries. This development brings with it challenges and new ways of thinking in many fields of society. One important and interesting aspect of a multicultural society is the role of language, communication, and mutual understanding. Interest in seems to be growing. Various debates in Swedish media focus on issues such as the role of the Swedish as compared to that of English, the role of knowledge of the Swedish in the context of education and the labor market, and the role of tests for citizenship. Sweden can be seen in a European context as having a Swedish language model with the right to stipulated in a new law, the designation of five official minority languages, the Plain Language movement in public administration, and the state offering free training in Swedish as a second as well as instruction in children's native languages at school. This article focuses on the voices of young people in Sweden today and portrays a number of young Swedes with multicultural backgrounds. Through their voices, I wish to explore multilingualism as a crucial and contested feature of our current world from a Swedish perspective. How can the local practices of young adults in Sweden of today inform policy makers and the ideologies behind a Swedish model? THE LANGUAGE ACT OF JULY 1, 2009 Sweden has, for the most part, been described as a rather monolingual and culturally homogeneous society, embracing a majority-centred monolingualist (Wingstedt 1998, 343). At the same time, national minority groups--such as the Finns, the Romany, and the Sami--have used their languages in Sweden for several hundred years. At the same time, a process of Swedification was taking place in the new areas of the country with virtually no deliberate policy enacted by the nation-state (Teleman 2002, 27). Swedish sign has also been used and developed over a long period of time. During the period between 1850 and 1960, however, a centralized, monolingual ideology held the central position as a part of the modern nation-state building project. Minority languages, such as Tornedalian Finnish, were oppressed and the use of dialects actively discouraged in schools and public life. Since the Second World War, the sociolinguistic landscape of Sweden has become even more diversified in the context of globalization just as in many other European countries. One reason for this diversification is the use of English as the lingua franca in the economic community. Another is the arrival of new languages brought by the increasing number of immigrants. A third reason is the European Union and its declared policy of multilingualism. In this context of globalization and European Union membership, and linguistic issues receive considerable attention. Furthermore, as Milani claims (2007, 23), a nation-state receiving new forms of linguistic, symbolic resources will also experience conflicting ideologies as they seek a new form for linguistic and hence social as well as moral order. Various debates in the Swedish media focus on issues such as the role of the Swedish as compared to that of English, the role of knowledge of the Swedish in the context of education and the labor market, and the role of tests for citizenship. …

‘Emboldened bodies’: social class, school health policy and obesity discourse

This paper examines the multiple ways in which health policy relating to obesity, diet and exercise is recontextualised and mediated by teachers and pupils in the context of social class in the UK. Drawing on a case study of a middle-class primary school in central England, the paper documents the complexity of the policy process, its uncertainty, its intended and unintended affects and effects on the lives and bodies of young people as they negotiate ‘health’ across a range of social contexts. Particular attention is paid to the voices of young people, whom by way of embodying imperatives found in health discourses become ‘troubled bodies’, ‘emboldened bodies’, or ‘insouciant bodies’, as such imperatives intersect with pupils' various subjectivities. It is argued that whilst all pupils appear to be affected by health policy, they are differently effected by it. The paper will outline how pupils were effected by health policy in emboldened and privileged ways and how the young people seem to not only remain unscathed by health imperatives but are also positively emboldened and privileged by them. This paper adds to understandings of social class and relationships between public health discourse and individual (e.g. pupil) subjectivity, and highlights both the complexity of the policy process itself as a product of the organisational and social relations of schooling, as well as the complex and idiosyncratic nature of young people's embodied subjectivities.

Creating spaces to belong: listening to the voice of girls with behavioural, emotional and social difficulties through digital visual and narrative methods

While interest in the voice of children and young people has grown alongside concern for their rights and participation, for those excluded from mainstream education or with a label of behavioural, emotional and social difficulties, the issue of student voice takes on particular relevance. Yet the voices of these young people, and particularly girls, are often hidden and unheard both in education and educational research. Using digital visual and narrative methods we have been listening to girls excluded from mainstream education. They attend Kahlo School, a small special, girl-only secondary provision in the south of England, and our focus has been on gathering their views as stakeholders in the school and engaging them in curriculum and school development. In this paper, we reflect on the affordances of visual and digital methods and on how the girls perceive their educational inclusion and exclusion. We discuss the themes of space, identity, relationships and community that have emerged from analysis of the data, and conclude by outlining the importance of the core messages about belonging and not belonging that we heard in the girls' accounts.

‘Youth is Present Only When Its Presence is a Problem’: Voices of Young People on Discipline in School

Discipline in schools is a topic of enduring public interest and concern. This article reviews findings from three recent research studies, which gathered views of young people on this issue in mainstream, alternative and special school settings. It reveals the confusion and frustration of students seeking to contribute to the debate, often on aspects that affect them directly and significantly. Their reflections are contextualised within a discussion of different conceptualisations of discipline, and from there, it is argued that, by strengthening the voice, power and presence of young people in dialogue on this key issue, the debate itself will be more relevant and well-focused.

Good practice in secondary school careers programs

PurposeCareer programmes within secondary school curriculum can impact on a young person's sense of direction and meaning in life. The purpose of this paper is to report on an evaluation that was conducted in 2009 of the careers programmes in one secondary college in the western suburbs of Melbourne.Design/methodology/approachThe research team utilised a multi‐method approach collecting 273 surveys and undertaking both focus groups and interviews, ensuring the voices of young people were at the centre of the work.FindingsInnovative careers and transition programmes create opportunities for young people to plan for their future. Similarly the absence of established careers programmes can compound the disadvantage that some students experience. The findings evidence how important it is for schools to support inclusive classrooms that enable young people to make informed decisions about their career pathways.Research limitations/implicationsThe research findings were used to form a model of good practice and highlight the transformational impact of career and transition programmes for young people. The current research explores student knowledge, confidence, attitudes and perceptions while they are still at school. A longitudinal study, tracking these same young people as they progress to tertiary education and/or employment, would enable more definitive evidence on actual transitions and the actual outcomes experienced by young people.Originality/valueThis paper is of value to the education sector as it looks to respond to the need to develop a more seamless approach to young people making successful transitions to further education and/or employment.

So That Our Dreams Will Not Escape Us: Learning to Think Together in Time of War

Armed conflict creates situations that tear at the fabric of life, affecting both emotional and material circumstances. Far from being confined to one brief, traumatic moment, most armed conflicts today go on for an indeterminate number of years. Yet, children are engaged in a dynamic process of development. That process doesn't hold still and wait for better times. The challenge to all concerned with child development is to find ways to assist communities and families to enable their children to grow up properly in time of war. When children are asked to name their own priorities, attending school is at the top of the list. Children associate school success with a hopeful future. But when they have been exposed to the most extreme forms of violence, they often find that the very same mental mechanisms that have allowed them to endure prevent them from using what they have experienced, making learning impossible. Further, their teachers have also been exposed to the horrors of war. Extremely violent experiences are remembered differently, held in the mind without symbolic representation and are not held to the internal scrutiny of reflective functioning. Education programs that attempt to support mentalization may call up unexpected levels of resistance as the young minds unconsciously struggle to keep terrifying meanings away. However, by combining traditional healing with reparative activity, the Ministry of Education and Sports (MOES) of Uganda was able to create conditions for Acholi children abducted as child soldiers, even those who had seen parents and siblings killed before their eyes, to be able to tolerate the possibility of thinking. By addressing this fear first, the MOES has been able to embed relational principles into the fabric of its program so that in the midst of war, teachers can teach, children can learn, and adolescents can have hope that their dreams will not escape them. In wars, we suffer from and witness some of the worst forms of violence committed against us and the people we love. Some of us have been born in the midst of this violence. It has become a way of life. We believe that education is essential to our future and that we have a right to dream of a better life. (However) even if we go (to school) we have a hard time concentrating because we keep thinking about what happened to us and our relatives. But when we lose months or years of school because of war, we worry that our dreams will escape us. When we should be learning, we are growing up in ignorance. As a result of this ignorance comes lack of hope. (Voices of Young People From Conflict Zones, From a Report by the Office of the Special Representative of the Secretary General for Children in Armed Conflict and UNICEF 2009)

Perceptions and Experiences of Cannabis Use by Young Adults Living with a Mental Illness: A Qualitative Study

While studies of cannabis use are numerous, the voices of consumers of cannabis are rarely heard. Even less prevalent are the voices of young people living with a mental illness, whose perceptions, attitudes and experiences are crucial to construction of effective health strategies and campaigns. This paper seeks to enhance understanding of the perceived and experienced links between cannabis use and mental health by young adults between the ages of 18 and 30 years who are living with a mental illness. With reference to insight gained from focus groups comprising members of this cohort, motivations for use and non-use of cannabis are discussed. Reappraisal of cannabis from a relatively safe and ‘soft’ drug to one that is implicated in psychosis and mental illness renders the experience of this cohort particularly relevant to public policy and debate. To the extent that cannabis can precipitate a predisposition to mental illness — thus catalysing a risk factor that may not be known in advance — it is vital that we know more about the perceptions of young people who are already confronting mental illness and their attitudes to cannabis use. Such knowledge can potentially lead both to more effective health promotion campaigns in relation to this cohort, and more effective engagement of young people in general (where, in the context of cannabis use and mental health, youth itself is a risk factor).

Every voice counts: Towards a new agenda for schools in rural communities in the age of AIDS

This discussion piece focuses on possible strategies for taking action around some of the challenges teachers and schools in rural communities face in the context of larger systemic changes in southern Africa, and particularly in the context of HIV/AIDS. For this purpose we examine five key entry points, i.e. teachers’ lives, school leadership and management, the voices of young people, teachers working with communities, and partnerships and pedagogies for preparing new teachers. We propose visual participatory research as a possible strategy for providing a space for dialogue that could be unleashed from the narrow political and economical aims of education transformation in South Africa. In a context where rural communities and schools are often viewed and approached as deficient, we consider the importance of an asset-based approach, invoking specific types of communication as an alternative to a needs-based approach to community development.

The story they want to tell, and the visual story as evidence: young people, research authority and research purposes in the education and health domains

The decision to use participatory visual methods with young people in education, health or public policy research is linked to a desire to allow them to have some greater voice in the research and the professional activities that impact on their lives. But how that ‘voice’ is produced, whose voice it represents, and how the product of that research is used and interpreted are all contentious issues for researchers. This article analyses some of these conceptual, methodological, political and pragmatic issues from the perspective of a current Australian Research Council-funded project working with young people across education and health domains. It is argued that allowing or not allowing visual accounts to speak for themselves is not simply a political decision but one related to epistemological understandings about meaning, and also to different purposes of different visual projects, in particular their relative emphasis on voice as a window to the world of the young people, compared with voice as a window to ‘who I am’. The project discussed is one which aims to give greater authority and centrality to the visual accounts and voices of young people, but also one where researchers understand both the visual and voice as constructed rather than given. Case studies from the project are used to illustrate the way in which these commitments frame decisions about technology and methodology, and also to show and argue for an approach which treats the meaning of the visual evidence as something to be constructed ethnographically and reflexively over time.

ORIGINAL ARTICLE: Negotiating autonomy within the family: the experiences of young adults with intellectual disabilities

Accessible summary In this study we asked six young people with intellectual disabilities what they thought about becoming independent in their families. One person wanted more independence within her family and sometimes this caused fights. Three people were happy with the independence they had in their families and did not want things to change. Two people, with the help and support of their families, were trying to be more independent. Families play an important part in young people becoming more independent. It was important for this group of young people for their families to understand and support their points of view. SummaryThere is a small but expanding literature about the transition to adulthood for young people with intellectual disabilities. However, voices of young people with intellectual disabilities are under‐represented. This study explored the perspectives of young people with intellectual disabilities on their transition to adulthood, focusing particularly on the process of negotiating autonomy within the family. This exploratory study employed a life history approach, involving six young people with mild intellectual disabilities, aged 18–25 years, and two waves of responsive interviews. First interviews explored participants’ life roles, relationships and goals. Second interviews focused on the process of negotiating autonomy within the family. Three approaches to negotiating autonomy within the family were identified: defiant, passive and proactive. The particular approach taken by each participant was associated with the level of congruence between their perceived and desired levels of autonomy and parental support. The study suggests that the transition to adulthood for young people with intellectual disabilities and their parents is not inevitably conflict‐ridden. Parents and professionals may support young people with intellectual disabilities through this life stage by including them in family and service decision‐making, and by supporting them to take on varied and valued roles and responsibilities within the family and community.

Choosing your Friends: Young People Negotiating Supporting Relationships

This paper explores questions of the agency and voice of young people in the negotiation of supportive relationships with adults, and the example of youth mentoring as one form of ‘professional friendship’. It discusses the role of such relationships in the current context, and highlights gaps in knowledge about the value of the concept. The paper suggests that an understanding of young people's perspectives on their relationships with adults offers a framework to interrogate how supports are structured which could inform future interventions. Data from three studies undertaken by the authors suggests that young people are strategic in their help-seeking, turning to different people at different times for different purposes and frequently seeking out egalitarian styles of relationship. It also highlights that young people are wary of being labelled ‘a problem’, leading some to avoid use of services which they perceive as carrying stigma or threatening their anonymity. Finally, the paper argues that young people prefer to choose whom to speak to rather than to be allocated. It asks how these perspectives can be addressed by professionals and others working with young people, and suggests a need for frameworks which take more account of young people as active participants in their own development.

Note to Educators: Hope Required When Growing Roses in Concrete

In this essay, Jeff Duncan-Andrade explores the concept of hope, which was central to the Obama campaign, as essential for nurturing urban youth. He first identifies three forms of "false hope"—hokey hope, mythical hope, and hope deferred—pervasive in and peddled by many urban schools. Discussion of these false hopes then gives way to Duncan-Andrade's conception of "critical hope," explained through the description of three necessary elements of educational practice that produce and sustain true hope. Through the voices of young people and their teachers, and the invocation of powerful metaphor and imagery, Duncan-Andrade proclaims critical hope's significance for an education that relieves undeserved suffering in communities.

Changing families, changing childhoods: changing schools?

This paper reports key findings from a study of young people’s engagement in ‘atypical’ activities in their families. The project focused on young caring and language brokering as two roles that are not assumed to be ‘normal’ activities for children and young people. The findings presented are from a survey of 1002 young people and from one‐to‐one interviews with a sample selected from the survey sample. The voices of young people in the interview study are used in the paper to illustrate the diverse range of childhood experiences. The paper discusses some of the ways in which pastoral systems in schools can take account of diverse childhoods and family needs more effectively than they have done in the past.