Reaching the ‘hard to reach’: strategies to recruit black and minority ethnic service users with rare long-term neurological conditions

Little is known about health and social care experiences of patients with rare long-term neurological conditions. Furthermore, black and minority ethnic (BME) service users are often perceived to be under-represented in health services research. BME service users have been described as ‘hard to reach’ in the past. However, evidence suggests that a variety of recruitment methods need to be used in order to increase recruitment. We employed a range of recruitment strategies shown to be effective in recruiting BME patients, to recruit patients to participate in one-to-one interviews to establish experiences of health and social care. Strategies included community and clinically based strategies. In total we recruited 15 participants through these recruitment methods, with all recruits ultimately coming from neurology clinics and disease-specific charities. Despite community-based strategies generating interest and a willingness to be involved, the rare nature of these conditions resulted in a lack of recruits from these strategies. Consequently we conclude that researchers need to plan and prioritise strategies carefully in order to maximise recruitment and utilise resources efficiently dependent on the nature of the research.     

On being ‘in the field’: practice,progress and problems in research with young people in rural areas

Alongside growing research interest in the lifestyles of young people has come recognition of the need for ethical codes of conduct to protect children and young people from exploitation. While many academic papers provide valuable guidelines for researchers, little consideration has been given to how methodological issues are actually played out in practice. In particular, the practicalities of fulfilling methodological obligations whilst at the same time managing often challenging research situations is elided. In this paper I foreground how methodological considerations impact upon research with both individuals and groups of young people in the countryside.     

Constructing ‘normal childhoods’: young people talk about young carers

There has been a great deal of attention paid to young carers in recent research, social policy and service provision. In this paper we report on a survey and interview study of 46 young people aged 15 to 18, nine of whom had experience as young carers, to explore the ways in which young people construct the young carer and their disabled parent. A key theme arising from the interview data analysis is the construction of a series of normative assumptions about ‘normal’ childhood through which young carers and their disabled parent are viewed as non‐normative and deficient. The predominantly negative construction of both parent and child/carer is critically analyzed and alternatives suggested in the discussion of these findings.     

‘Generation rent’ and the ability to ‘settle down’: economic and geographical variation in young people’s housing transitions

The term ‘Generation Rent’ denotes young people who are increasingly living in the private rented sector for longer periods of their lives because they are unable to access homeownership or social housing. Drawing on qualitative data from two studies with young people and key-actors, this paper considers the phenomenon of ‘Generation Rent’ from the perspective of youth transitions and the concept of ‘home’. These frameworks posit that young people leaving the parental home traverse housing and labour markets until they reach a point of ‘settling down’. However, our data indicate that many young people face difficulties in this ‘settling’ process as they have to contend with insecure housing, unstable employment and welfare cuts which often force them to be flexible and mobile. This leaves many feeling frustrated as they struggle to remain fixed in place in order to ‘settle down’ and benefit from the positive qualities of home. Taking a Scottish focus, this paper further highlights the geographical dimension to these challenges and argues that those living in expensive and/or rural areas may find it particularly difficult to settle down.     

‘We are just ordinary people working hard to reach our goals!’ Disabled students’ participation in Norwegian higher education

In this article we shed light on the experiences of disabled students attending professional courses in higher education in Norway. The findings from this empirical study are based on interviews with 14 students with diverse impairments, ranging from the visible to the invisible. They faced barriers that they resolved to address on their own, using their capabilities and working ‘in silence’ to meet the expectations of normal students in academia as strong and independent. In addition to their own motivation and self-determination, what facilitated their progress in their studies was that some of the staff and fellow students met them respectfully as ordinary students, while recognizing their strain and providing support without calling attention to it. Leaning on the Nordic Relational Model of Disability, we call for greater awareness of the complex interactional processes between the disabled students and people in their social environment.     

Recruiting young people to sensitive research: turning the ‘wheels within wheels’

Abstract

This article contributes to a growing literature that takes a more nuanced approach to exploring the complexities of relationships and negotiations with gatekeepers. Using our study of young people living with a parent at the end of life as a ‘critical case’ of sensitive qualitative research, we discuss how far from being a smooth, linear process, participant recruitment was experienced as a series of overlapping challenges, characterised here as ‘wheels within wheels’. Each component of this multi-faceted process relied on identifying and engaging with key practitioners who acted as gatekeepers. We discuss how researcher and gatekeeper positionality influenced the outcome of negotiations with gatekeepers, and highlight potential implications for young people in exigent sets of circumstances. If the routes ‘in’ to access young people are difficult, then this also raises questions about routes ‘out’ for young people and their access to support when living through challenging times.     

‘We need to understand what’s going on because it’s our life’: Using sandboxing to understand children and young people’s everyday conversations about care

Children and young people who live away from birth families (through adoption or being in care) need an understanding of their life story, including reasons for removal from birth family to process what has happened to them and to develop a secure identity. We report data produced with care experienced children and young people using a creative sandboxing method capturing hopes and fears for conversations about care in sand scenes. The themes presented emphasise the need for care-experienced children and young people to be supported to engage in ‘difficult conversations’ about their lives in warm, open and responsive ways.     

‘Cruel and unusual punishment’: an inter-jurisdictional study of the criminalisation of young people with complex support needs

Although several criminologists and social scientists have drawn attention to the high rates of mental and cognitive disability amongst populations of young people embroiled in youth justice systems, less attention has been paid to the ways in which young people with disability are disproportionately exposed to processes of criminalisation and how the same processes serve to further disable them. In this paper, we aim to make a contribution towards filling this gap by drawing upon qualitative findings from the Comparative Youth Penality Project – an empirical inter-jurisdictional study of youth justice and penality in England and Wales and in four Australian states. We build on, integrate and extend theoretical perspectives from critical disability studies and from critical criminology to examine the presence of, and responses to, socio-economically disadvantaged young people with multiple disabilities (complex support needs) in youth justice systems in our selected jurisdictions. Four key findings emerge from our research pertaining to: (i) the criminalisation of disability and disadvantage; (ii) the management of children and young people with disabilities by youth justice agencies; (iii) the significance of early and holistic responses for children and young people with complex support needs; and (iv) the inadequate nature of community based support.     

Arts policy and practice for disabled children and young people: towards a ‘practice spectrum’ approach

This article argues for an approach to the evaluation of arts policy and practice for disabled children and young people that goes beyond the dialogic antagonism between Disability Arts and community arts, and towards a ‘practice spectrum’. Little is known about the extent to which a Disability Arts perspective has extended into arts policy and practice for disabled children and young people. The article aims to redress this knowledge gap. It is based upon two sets of data collected in relation to the East Midlands region of England during 2014. First, a critical evaluation was conducted of official and institutional attitudes to arts practice with disabled children and young people. Second, interviews exploring contemporary practice were conducted with 24 arts organisations. Their practice represents a diverse range of art forms and programmes undertaken in the region, and a range of attitudes and positions taken towards disabled children and young people. We argue that the best way to conceive of current practice is as a spectrum, as opposed to an antagonism between community arts and Disability Arts perspectives. There is, however, little evidence of the penetration of a Disability Arts perspective into policy and practice for children and young people.     

Beyond ‘developmentalism’: A relational and embodied approach to young children's development

This article begins by discussing ‘developmentalism’, one of the key debates that has characterised the current theoretical impasse in the development of childhood studies. I use Norbert Elias's concept of the relation between love and learning as a foundation to develop the way in which young children's development is a non-linear, temporal and embodied process. I argue that we need to develop a relational approach that moves beyond some of the binary divisions between ‘nature’ and ‘biology’, drawing on concepts from particular theoretical traditions that have been under-utilised, particularly the relational school of psychoanalysis and the work of Maurice Merleau-Ponty.     

‘Individual and connected’: an exploration of young people’s discourses about youth cafes in Ireland

Since 2000, youth cafes are accorded prominence in Irish youth policies and research. Youth cafes are drug and alcohol free recreational spaces and research shows that they impact positively on young people. Youth cafes are broadly similar to youth clubs, but they are less structured and are primarily youth-led spaces. This paper draws on qualitative materials from a national study of youth cafes in Ireland, arguing that young people’s perceptions of youth cafes are linked to individuality and connectedness. In this paper, we explore these discourses surrounding individuality and connection in detail and argue that youth work in the twenty-first century must simultaneously appeal to young people’s need for space to ‘be’ and to find themselves and provide a structure within which they can relate to others and wider society.     

The ‘right time’ – negotiating the timing of interviews with vulnerable young people

Participant retention is a key factor in determining the success of longitudinal research. Challenges in re-locating and retaining participants over the long term are major issues for researchers working with young people who face adversity and experience frequent changes in circumstances. This article reports on a study of vulnerable young people and their transition into adulthood. Rather than the more conventional schedule-based approach to locating and re-interviewing young people, a relational process, the ‘right time’ framework, was used to facilitate young people's involvement in the study. Embedded in the ‘right time’ framework is recognition of the diverse and fluctuating circumstances that shape young people's availability for interviews. Several case examples are considered which amplify the way that the ‘right time’ framework allowed the research to navigate around these circumstances. The case examples highlight the value young people attached to being involved in the research, the influence on the ‘right time’ of wider relational tensions for young people and the need to negotiate researcher status as a different sort of adult. The ‘right time’ framework contributed to a high retention rate in the study generating a more representative sample and enhancing the subsequent data analysis by providing valuable insights into the lives of these vulnerable young people.     

Educational interventions for people with social and health difficulties in Italy: the case of a ‘welcoming community’ for young and adults

This article presents a case study that we consider significant for the social work of ‘welcoming communities’ in Italy. In the first part, we describe the history, methodologies and educational instruments aimed at young adults with social and work integration difficulties. In the second part, we present research questions, methods and results of a field research study carried out over 8 years, during which researchers were continuously present. All the 375 persons living in the welcoming community Villa S. Ignazio, in Northern Italy, have been observed. In the conclusions, we point out the main elements for a critical reflection that may lead to a methodological enhancement of the activities, also considering the global economic and political crisis, which is particularly dangerous for the rights of the vulnerable people.     

Hoofbeats and heartbeats: equine-assisted therapy and learning with young people with psychosocial issues – theory and practice

The practice of equine-assisted therapy and learning (EAT/L) to deliver psychosocial interventions to young people is a rapidly growing field. However, recent reviews have cited a need for further documentation of a theoretical foundation and evidence of outcomes of these programmes. This paper is a theoretical discussion of psychotherapeutic theories and models that the authors understood as being relevant and giving substance to the application of EAT/L at a Therapeutic Horsemanship centre in the UK. It also describes and defines the practice of EAT/L at the centre. Philosophical and psychological theories/models of Non-Violent Communication, Object Relations, Play and Dramatherapy, Mindfulness practice, and Attachment Theory, all set within a person-centred and relationship-based approach employed at the centre were examined and illustrated in the form of client case material. The authors report the central role relationship plays between client-horse-therapist and horse-handler in the building of trust and resolution of the impact of trauma. The paper highlights a need to carry out well-designed empirical studies with different client groups in the field of EAT/L in order to gain more insight into this growing field.     

‘Queen of the world’: experiences of ‘at-risk’ young people participating in equine-assisted learning/therapy

There is a significant body of research into the benefits of animal-assisted therapy (AAT) but less into the fields known as equine-assisted learning and therapy (EAL/EAT) where horses are incorporated in therapeutic and learning interventions. This paper explores the experiences of seven ‘at-risk’ young people who participated in a therapeutic horsemanship (TH) programme. The study followed a practice-near approach seeking to capture the young people's experiences within a participative ethnography. Themes related to the risk and resilience literature such as self-confidence, self-esteem, self-efficacy and a sense of mastery, empathy and the opening of positive opportunities are explored in this paper.     

Distance and mastery: poetic inquiry of young people’s subjectification processes

An increasing number of young people under 30 do not complete upper secondary education and have difficulty gaining a foothold on the labour market. Hence, there is great interest, politically as well as academically, in finding out ‘what works’ in terms of helping young people. At the same time, however, there is also a lack of research that examines the processes these young people are involved in and the context that has an effect on these. By applying the method of poetic inquiry, this article examines subjectifications processes that have education as the focal point. Poetic inquiry provides an opportunity to explore and construct ‘evocative’ and ‘polyvocal’ analyses of the young people’s subjectification processes in the current employment policy context. The analyses demonstrate how different forms of ‘distance’ occur and how the young people simultaneously are trying to master these.     

‘The notorious gambling class’: patterns of gambling among young people in Denmark

In this study, using a three wave qualitative longitudinal data set, we explored patterns of change in gambling behavior among a sample of young Danes. A total of 48 informants participated in all three sweeps of interviews. The overall aim was to explore the complexities and social contexts, as well as the subjective meanings that underlie gambling behavior changes. We identified four different types of gambling pathways, each illustrating different types of movement over time: intensification; reduction; stability, and those that were non-linear. Our overall finding was that transitions or oscillations in behavior are more common than a progressive linear gambling pattern, and that these changes are affected by a number of contextual factors. The implications for further research and policy are discussed.     

‘It’s like exercise for your soul’: how participation in youth arts activities contributes to young people’s wellbeing

Active participation in organised youth arts activities is generally considered ‘good’ for young peoples’ social and emotional wellbeing. There is, however, less known about how youth arts participation helps to create wellbeing benefits. This paper details a retrospective narrative study that sought to understand not only what wellbeing benefits 17 participants attributed to youth arts activity, but more specifically, how these outcomes occurred. The concept of liminality, within a spaces of wellbeing approach, is used as a framework to explore and understand participant’s stories of their time at Corrugated Iron Youth Arts, in Darwin, Australia. A pattern of transformation involving three phases emerged through an analysis of participant stories. This involved (1) joining in, (2) developing skills and gaining experience, and (3) becoming a ‘real’ performer. These stages have strong resonance with contemporary conceptualisations of liminal experiences, and provide further evidence for the value of youth arts activity as a space for the development of social and emotional wellbeing.     

‘Some people are not allowed to love’: intimate citizenship in the lives of people labelled with intellectual disabilities

Disability helps us think differently about the ‘ideal’ neoliberal-able citizen who may not equate to ideas of productive, sexual, ‘normal’. Intimate citizenship – our rights and access to intimacy – is often ignored by those working with people labelled with intellectual disabilities and in research. In this article, we discuss the outcome of a dialogue between self-advocates labelled with intellectual disabilities, academics, service providers, Aboriginal leaders, students and artists about intimate citizenship through love, intimate work and consumption.