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This article explores the experiences of young adults with a life-shortening condition in the first wave of the Coronavirus (COVID-19) pandemic in the UK. It presents the findings from an inclusive qualitative research study using constructivist grounded theory which aimed to examine the unintended consequences of pandemic control measures (lockdown and ‘shielding’) on this population. Purposive and theoretical sampling methods were used to recruit young adults with a life-shortening condition, employing a range of recruitment methods such as social media, advertising in newsletters and snowballing. Twenty-six young adults (aged 22–40 years), with a wide range of life-shortening conditions participated in the study. Seventeen participants were female and nine male. The majority identified as White British/Other and the remainder as Black British (2), Mixed Race (2) or Latin American (1). Data were generated iteratively using in-depth guided interviews and analysed collectively by an inclusive research team using the constant comparative method. The article explores a theory of embodied precariousness of living with a life-shortening condition during the first wave of the Coronavirus pandemic in relation to three categories: the rationing of life-saving treatment, the deterioration of health and retraction of healthcare provision, and the disruption of typical care arrangements. The findings show that the pandemic control measures introduced to keep people safe have intensified the precarity of this group promoting inequalities in healthcare and health outcomes. The article identifies some implications for practice to support the future management of unexpected and unwanted change.

Women have the right to make choices during pregnancy and birth that sit outside clinical guidelines, medical recommendations, or normative expectations. Declining recommended place or mode of birth, routine intervention or screening can be considered 'non-normative' within western cultural and social expectations around pregnancy and childbirth. The aim of this review is to establish what is known about the experiences, views, and perceptions of women who make non-normative choices during pregnancy and childbirth to uncover new understandings, conceptualisations, and theories within existing literature.Using the meta-ethnographic method, and following its seven canonical stages, a systematic search of databases was performed, informed by eMERGe guidelines.Thirty-three studies met the inclusion criteria. Reciprocal translation resulted in three third order constructs - 'influences and motivators', 'barriers and conflict and 'knowledge as empowerment'. Refutational translation resulted in one third order construct - 'the middle ground', which informed the line of argument synthesis and theoretical insights.The findings of this review suggest that whilst existing literature from a range of high-income countries with similar healthcare systems to the UK have begun to explore non-normative decision-making for discrete episodes of care and choices, knowledge based, theoretical and population gaps exist in relation to understanding the experiences of, and wider social processes involved in, making non-normative choices across the UK maternity care continuum.

Research examining the effects of spinal cord injury on sexuality has largely focused on physiological functioning and quantification of dysfunction following injury. This paper reports a systematic review of qualitative research that focused on the views and experiences of people with spinal cord injury on sex and relationships. The review addressed the following research question: What are the views and experiences of people with spinal cord injury of sex, sexuality and relationships following injury? Five databases were relevant and employed in the review: CINAHL (1989–2016 only), PsychInfo, PubMed, Scopus and Web of Science, for research published between 1 January 1980 and 30 November 2019. After removing duplicates, 257 records remained and were screened using a two-stage approach to inclusion and quality appraisal. Following screening, 27 met the criteria for inclusion and are reported in the paper. The review includes studies from fifteen countries across five continents. Two main approaches to data analysis summary and thematic synthesis were undertaken to analyze the qualitative data reported in the papers. The analysis revealed four main themes: sexual identity; significant and generalized others, sexual embodiment; and; sexual rehabilitation and education.

In ‘Western’ contexts, school attendance is considered central for an ‘ideal’ childhood. However, many young people engage with home roles that conflict with school expectations. This article explores perceptions of that process in relation to two home activities – language brokering and young caring. We interviewed 46 young people and asked them to reflect on what the teacher would think when a child had to miss school to help a family member. This article discusses the young people’s overall need to keep their out-of-school lives private from their teachers.

In the current research climate, in which many autistic and autism communities are increasingly calling for a move towards collaborative forms of research, we consider how a loosely formed epistemological community may serve to challenge ‘business as usual’ in the academy. Mindful of the need to move beyond theory, we use this experience to concretely consider how knowledge about autism and neurotypicality can be meaningfully (co)-produced, and made available both to the research community and also to autistic and autism communities. Here, we use our own co-production of this article to explore how autistic experience may trouble normative meanings of academic knowledge production. We also consider the limits and possibilities of a neurodiverse research collaboration to reflect on ways in which a loose epistemological space may serve to contribute to knowledge about both autism and neurotypicality, adding to debate around collaborative research.

Spinal cord injuries can result in significant physiological and psychological challenges for patients. Nurses have an important role in the rehabilitation of people with a spinal cord injury, as does the provision of peer support by people who are 'living well' after experiencing a spinal cord injury. Aim To explore peer support and whether it can have an effective role in a multidisciplinary team approach to supporting a patient with a spinal cord injury. Method This was an independent evaluation that used an online survey, a focus group and telephone interviews to elicit the views of respondents about the Spinal Injury Association (SIA) peer support service in England and Wales. There were four groups of respondents: people with a spinal cord injury; their family and friends; peer support officers; and nurse specialists and other healthcare practitioners. Findings It was identified that peer support officers were valued for their ability to provide a positive role model for people with a spinal cord injury. Healthcare practitioners involved in the care of people with a spinal cord injury also appreciated the training and support they received from peer support officers. Conclusion This evaluation demonstrated that peer support officers were regarded as an important element of a multidisciplinary team approach to managing the care of those who had experienced a spinal cord injury. Peer support officers were also considered a valuable source of information and education, particularly for healthcare practitioners working in settings where spinal cord injury was not a common presentation.

This chapter discusses the difference and transgression through a series of empirical, conceptual and literature-based exemplars. It addresses the ways in which normative ideas about childhood impact on understandings of particular kinds of children and set up assumptions about the norms against which 'others' are judged. The chapters draws on a range of dimensions of difference, including how difference is manifested through geographical location; economic differentiation and identification through social class; embodied differences such as gender and disability; and through a developmental lens, which demarcates activities as congruent within a particular developmental age or as transgressive. It discusses these instances in ways that attend to the local, contingent and partial knowledges about contexts of development and movements through time. The introduction chapter then presents an overview of the key concepts discussed in the subsequent chapters of this book.

This conclusion presents some closing thoughts on concepts discussed in the preceding chapters of this book. The book discusses the three interrelated themes to explore how they offer possibilities with which to refine and extend knowledge about non/normative development and 'different' childhoods. It has been structured around three core themes that speak to critiques of developmental psychology. The book discloses several issues that are relevant to understanding and developing theory about non-normative or different childhoods. It discusses geographical location as it intersects with understandings of nation, childhood and gender for child migrants in a host country; gender and role models within families and other care settings; the location of the child as a vulnerable subject; and development as located within particular understandings of mothers' work, food and social class. The book highlights that the construction of a child was in relation to the duties of adults to provide for and protect children and to ensure that they develop appropriately.

Different Childhoods: Non/Normative Development and Transgressive Trajectories opens up new avenues for exploring children's development as contextual, provisional and locally produced, rather than ...

This paper reports the analysis of qualitative data from a broader study of young people’s representations of conflicting roles in child development. Just over a quarter of the group, bilingual students who spoke a variety of first languages, had had personal experience of child language brokering (CLB). Employing vignette methodology, they were invited to reflect on the implications of an adolescent boy’s language brokering activities for, among other things, his relationships within his family. In this paper we will present brief case studies to illustrate different positions that members of the group adopted in relation to developmental scripts emphasizing independence and interdependence between young people and their parents (Dorner et al. 2008). Through an analysis of individual CLB case studies, we illustrate various ways in which individual young people reported the balancing of the demands of autonomy and connectedness in their analysis of relationships between young people and their parents.

In this chapter, Brownlow et al. seek to explore the positioning of individuals with autism within clinical consultation sessions. They draw upon the previous work of Edley (Discourse as data: A guide for analysis. Sage, 2001) in applying the principles of critical discursive psychology to a section of data drawn from a clinical consultation session. In doing this, they use the data to illustrate how the method of analysis works in practice. The chapter explores issues of power, dominant repertoires, positioning, and ideological dilemmas operating within the therapeutic context. Discussion of the strengths and limitations of the method of data analysis are considered, in addition to implications for researchers using the method.

In this paper, we seek to explore the tensions between advocacy and self advocacy autistic movements in a Swedish context with a special focus on the meanings that enable the production of particular understandings of autism and the autistic subject. Drawing on articles written for the Swedish advocacy magazine Empowerment written for and by people with autism, the discourse analysis explores two competing discourses: a reformist and a radical. The reformist discourse underlines a goal of (political) representation expressed in Empowerment. It may be understood as an important part of producing a legitimate autistic political subject–positioned as a full member, with a full membership–within a parent-dominated autistic advocacy movement. The reformist discourse can be viewed as a result of a negotiation, where full membership is conditioned on the parents' terms and granted on specific terms. These include working together (neuro-inclusively), advocacy based on interest rather than identity/position as a specific target/member group, agreement upon a definition of autism as a disability (a deficit) a person has rather than an identity. In relation to this, an alternative legitimate autistic subject is produced through invoking the counter-hegemonic radical discourse. Such a narrative produces the ‘Asperger’ or ‘Aspie’. Here, the ‘full membership’ refers to a sense of identification with sense of belonging to and being at home with other people with autism. It contains a certain amount of autistic solidarity within the group of adults with autism.

Within dominant approaches to autism and relationships, people with autism are assumed to be either unable to form relationships or are in need for educational interventions to be better equipped at managing relationships in a social world dominated by non-autistic people (neurotypicals). In this paper, we argue that broader constructions of friendship are needed in order to best account for the desire and abilities of high-functioning people with autism to have satisfying friendships and that the engagement with online social networking may provide a useful tool in achieving this.

This paper draws together empirical work that has been produced by the authors in two different autistic spaces: the Swedish magazine Empowerment produced by and aimed at adults with autism, and English-speaking autistic communities online. While the two points of data collection are quite different, there are important points of commonality that enable us to explore central issues concerning autistic and neurotypical space and the meanings assigned to these in different contexts. The paper aims to introduce the notion of social geographies of autism, based on talks among adults with autism and a social movement to promote autistic identities, giving examples from our previous work that has spanned both online and off-line spaces. Key issues discussed in the paper include a focus on autistic political platforms and the carving out of both social and political spaces for people with autism. In doing so, neuro-separate and neuro-shared spaces must be negotiated.

In this article, we explore how interpretation is dealt with by researchers using a vignette methodology. Researchers using vignette methodology often struggle with interpretation: how to interpret the responses when participants shift between discussing the vignettes as themselves, taking the perspective of the character in the vignette and commenting on what ‘ought’ to happen. We argue that by foregrounding a consideration of the method with an explicitly articulated theoretical position of dialogicality, issues inherent in interpretation become a valuable addition to the research rather than an obstacle to be overcome. In this article, we discuss ‘Louise’ a young carer, detailing the various positions she takes in her talk about the vignette of Mary, a fictitious young carer, to illustrate how a perspective based in dialogical theory contributed to the analysis of her various moves through different identity positions.

In recently arrived immigrant families, children and young people often act as language brokers for their parents and other adults. In public and academic debate, this activity is sometimes portrayed negatively as imposing excessive burdens of responsibility on the young people. This paper reports an analysis of qualitative data from a broader study of young people's representations of conflicting roles in child development. Interview participants were monolingual and bilingual students, aged 15-18 years. Half of the latter had had personal experience of language brokering. The paper examines differences within this sample in their representations of a young person's involvement in language brokering. Monolingual students were not generally negative in their attitudes to bilingualism and language brokering, but many showed only a vague understanding of them and perceived them as unusual or 'strange'. Bilingual speakers, on the other hand, and in particular those with language brokering experience, saw these activities as 'normal' and often showed a richer and more subtle appreciation of what was involved. These differences illustrate ways in which personal experiences influenced individuals' representations of language brokering. Implications for an understanding of developmental scripts emphasising independence and interdependence between young people and their parents are discussed.

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.

In this paper, we explore young peoples' normative representations of work. In particular, we are interested in the ways young people view work roles which could be considered 'atypical' such as young caring or language brokering. Interviewed were 46 young people (15–18 years) some who did, and some who did not engage in the 'atypical' work roles of language brokering or young caring. Findings indicated that young people have a strong representation of what a 'normal' childhood comprises and that friends, teachers and parents play a mediational role in cementing this contextually. However, respondents presented two alternative representations around engagement in 'atypical' roles, with some individuals holding both views at the same time. On the one hand, they felt that engagement in 'atypical' activities would be experienced as a loss of 'normal' childhood. On the other hand, a more positive representation of 'atypical' childhoods was also drawn on, in which engagement in 'atypical' activities was seen as a source of pride and a contributor of additional skills to a child's development. This opinion was evidenced by both those who had, and those who had not engaged in 'atypical' work.

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.

This article discusses the representation of abused children as 'damaged', drawing on a series of three advertising campaigns for a British children's charity. The pictures and text of the advertisements seek to elicit readers' concern for abused children by portraying them (a) as passive agents in their development and (b) as signifiers of the dangers of the world and the safeness of the home. The portrayal of abused children in the advertisements serves to reinforce a perception of the vulnerability of all children and the need for adult supervision and 'care'. Without seeking to dismiss the seriousness of abuse or of the work done by children's charities, the article questions the implications of these representations of childhood and 'damage', and argues that the dominant representation of abused children drawn on in such campaigns oversimplifies many complexities in the worlds and the lives of children who have been abused.

This article examines how vignette methodology can aid understanding of cultural identity. This is demonstrated through a study of child language brokers, wherein a child is engaged in the cultural contexts of both the host culture and the home culture and must therefore negotiate new cultural identities. Participants were young people aged 15 to 18 years; some of them were brokers, others were not. Drawing on notions of adequacy and inadequacy, visibility and invisibility, theoretical ideas around cultural identity theory and dialogical self-theory can provide an understanding of how the young people moved through different (often conflicting) identity positions.

In this paper we discuss the notion of 'autistic friendship'. Drawing on articles published in the Swedish advocacy magazine Empowerment,written for and by autistic people, a thematic analysis explores two interrelated themes: the meaning and performance of friendship in non-autistic (NT) and autistic (AS) worlds and the meaning of space in social interaction and community. Articles published in the magazine frequently discuss autistic only spaces as safe places in which to make friends with other autistic people and also in which to perhaps learn how to manage social interactions with the dominant non-autistic (NT) culture.

Erica Burman asks in Deconstructing Developmental Psychology, whose development privileged in developmental psychology and other disciplines, and whose development is therefore unaccounted for. Reflecting on Burman’s work, particularly on this question, has informed my research and teaching since I first read the book in 1994. In this short commentary, I discuss the impact of Burman’s theorising beyond her original focus on the development of young children and their relationships. I focus on how her work has informed research into understandings and representations of children and families who are for some reason considered to be ‘different’. I focus on three themes addressed in the book: the production of universal development and the ‘normal’ child, selective abstraction and the (im)possibility of singularised representations of traumatised children. I consider how Deconstructing Developmental Psychology has relevance to an understanding of children, young people and families’ lives and (beyond psychology as a discipline) to examine how dominant ideas of children’s development is implicated within national, and international policy and other public arenas that regulate lives of children and families.

As critical scholars, we are interested in the social construction of ‘normal’ development in children and how this operates discursively through the construction of ‘other’ childhoods that are seen to be different from the norm. Ideas about ‘normal’ development are naturalised in and through psychological descriptions of children’s behaviours, particularly in the appeal to childhood as biologically constituted, and produced through an evolutionary process (Brownlow & Lamont-Mills, Chapter 13, this volume; Burman, 2008; Morss, 1990; Rose, 1989a).

In this article Lindsay O'Dell and Jess Prior present the findings of a small survey, organised as a collaborative project to evaluate a schools' service, set up in 1998 by the charity Changing Faces1 to assist pupils with facial disfigurements. Twenty schools responded, each of which had a pupil in their school, aged between 3–16 years, with a facial disfigurement. Qualitative and quantitative questions addressed schools' expectations of the service, ratings of visits from Changing Faces, helpful/unhelpful aspects of the service and suggestions for improvements, as well as information about the child and school. The data was analysed using both quantitative data and a qualitative thematic analysis. Findings point to reasons for initial contact, and effectiveness of any intervention. Whilst many families and schools seek support in times of crisis, sometimes contact is made to try and prevent future difficulties. Professionals working in education may have much to learn from cases where the child, school and family are all coping well. Future research plans include extending this pilot survey to include the views of a wider range of schools as well as those of the children and families involved.

It is argued that the mainstream understandings of the child given within (and outwith) developmental psychological theorisation have profound implications for both the sexually abused and the ‘non-abused’ child. In particular, the view of sexually abused children as distinctly different from other children is a common assumption within such understandings. The issue of difference is explored in this paper using a simple Q study which required participants to describe either a sexually abused child or a child more generally. The Q study is reported and the different descriptions of childhood from the analysis are discussed.

Little work has addressed how smokers represent their own smoking rather than smoking in general. Research has identified a huge number of variables that contribute to smoking, yet not much is known about how smokers ‘make sense’ of these and construct explanations of the factors that contribute to their own smoking. This study used Q-methodology to investigate smokers’ own representations of their smoking behaviour. Analysis revealed four main factors: smoking as a social tool; the dual identity smoker; reactionary smoking; and smoking as a social event. We argue that an understanding of the diversity of smokers’ representations and explanations of their own smoking could play a useful role in developing more effective targeted interventions.

Recent years have witnessed a rapid growth in Internet technologies, which offer new possibilities for researching hard to reach groups. However, research guidelines, which could aid research in this new forum, have not yet been fully developed. The focus of the article will be ethical issues that may arise from using the Internet as a research tool if we are to protect and respect our participants. Questions surrounding gaining informed consent, privacy of participants and new power differentials, which may arise through interaction in an on-line forum, are raised. These are supplemented by reflections from work conducted by the authors using on-line discussion formus as method of research with people with autism.

Researchers have proposed numerous theories to explain autism, ranging from those that are psychologically focused to those influenced by biology and neurology. Many theories of autism share the assumption that there is a deficit in people with autism that should be researched, classified, and, ultimately, modified if the hypothesis suggests that this may be possible. Therefore, the common link among these theories is an assumption that there is something wrong with the person with autism. One highly influential theory purporting to explain the characteristics of autism is that they are caused by an inability to understand others’ mental states; in other words, autistic people are considered to lack a ‘‘theory of mind.’’ This theory is dominant in explanations of autism, with significant influence within the professional field and in constructions of the person with autism. In this article, we critically examine the theory of mind hypothesis using empirical analysis of online material in which neurodiverse adults, including some who identified with the label of autism, reflected on theory of mind. Neurodiversity is a term that was initially conceived by people with autism in their reframing of deficits and differences and first appeared in an academic essay by Judy Singer in 1999. There has been a call for neurodiversity to be recognized and considered among with the more familiar categories of gender, class, and race (Singer, 1999).

Facial disfigurement affects approximately one in 500 children and young people in the UK. Four mothers and their four children aged 11—13 years who have a facial disfigurement were recruited through the charity Changing Faces, in order to examine the perspectives and concerns of adolescents and their mothers, and how they live with their disfigurement. Semi-structured interviews were analysed using Interpretative Phenomenological Analysis. The implications for research and practice in health psychology are discussed, and in particular the support and intervention of friends, constant vigilance and practical assistance from mothers, and the individual characteristics of the child are highlighted for further consideration.

The work presented in this paper is part of a larger project in which online asynchronous discussion groups were employed to examine how a range of contributors--including people with autism, parents of people with autism, and professionals working within the field of autism--view and understand autism. In this paper, we focus on the voices of people with autism. The terminology used in the paper takes its lead from the writings of people with autism, who frequently use the term 'AS' to refer to autistic spectrum and Asperger syndrome and 'NT', which refers to neurologically typical people without autism. We examine a key theme identified in the online discussion groups--the representation of individuals with autism as occupying a separate world of autism. In doing so, we question an apparent goal of therapeutic interventions--to bring people with autism out of their 'separate world' and integrate them into a more typically 'social world'. We present an alternative understanding of autism that argues for valuing diversity and viewing autism as a difference rather than a deficit. We will discuss some of the implications that this may have for working with people with autism in health and social care practice.