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Anti-neutrophil cytoplasmic antibody (ANCA) associated vasculitis (AAV) is a chronic, relapsing-remitting condition associated with increased morbidity. Previous research has shown patients with AAV report high levels of fatigue, pain, depression and anxiety. Over recent years successful work has been carried out to improve clinical outcomes, resulting in reduced mortality and end stage kidney disease (ESKD). Despite this, little work has been done to better understand the role of the patient within this condition. The prevalence of AAV is increasing and to date, there is a shortage of specific tools that assess and measure key features relating to patient reported outcomes (PROs). This protocol details how we can better understand the lived experiences of those with AAV through the development of a disease specific, patient reported outcome measure (PROM), to be used in clinic practice. This will allow us to recognise and validate PROs and the impact the disease and its treatment has on patients' health related quality of life (HRQoL). In addition, we aim to identify potential differences in PRO's between demographics, organ involvement and treatment subgroups in AAV as well as outcomes relating to the patient experience. Patients from a single centre in the UK will be recruited to take part in the exploratory qualitative study which will include focus groups and semi-structured interviews. The inclusion criteria comprise anyone with a diagnosis of AAV and willing to participate, including those who have active or relapsing disease, those are economically active, unemployed, retired and patients receiving renal replacement therapy. The aim of the project is to identify key issues patients experience in relation to their disease and its management and how these can be better assessed in a new PROM developed for use in the clinic setting. This will enable better delivery of individualised care and inform shared decision making, while also serving as a platform for future research looking at PROs in other glomerulonephritides. [ABSTRACT FROM AUTHOR]

This article considers how undocumented youth in the UK survive and construct their everyday lives in precarious circumstances. Drawing on multiple in-depth narrative interviews with (n = 7) undocumented youth, I illustrate how these young people focus on the future and engage in purposeful activities as a way of enduring the everyday challenges of living with no papers. I reflect on the relationships, which young people draw on to enable them to endure adversity and rebuild their everyday lives. I conclude that the presence of love and community is critical for young people's survival, safety and wellbeing, and I suggest how practitioners and researchers might make use of these findings. [ABSTRACT FROM AUTHOR]

The research presented in this paper supports claims by feminists and queer theorists that there are numerous and diverse sex/gender/desire categories (Bem, 1995). Taken from a broader digital ethnography of digital sex markets in the United Kingdom, the findings are based on ten in-depth interviews with those who identified as men or 'gender flexible' and who buy and/or sell sex within digital markets. The participants featured in this paper used digital sex markets as a space to explore and express non-normative/subversive sexual and gender identities. Yet for many of them, these subversive acts were bounded by the market, so they were able to uphold masculine heterosexual identities outside of sex markets. The relative privacy of digital sex markets empowered them to maintain heterosexist power, reducing the social risks of stigmatisation and ostracisation associated with subversive sexual and gender identities. The thematic analysis revealed the limitations of heteronormative and homonormative labels and assumptions of sex work relations, thus, prompting the need to write this paper. Framing sex markets in narrow binary terms, as either homosexual or heterosexual markets, or research participants as customers or workers do not reflect the fluidity and diversity evident in this small yet revealing sample. The study shows multiple and fluid expressions of sex/gender/desire; and a duality in market roles as workers and/or customers amongst men engaged in digital sex markets. [ABSTRACT FROM AUTHOR]

Purpose: Most football clubs were founded by members of the local community within which they are based. The success of a club is built on the time, effort and resources given by these locals, which is offered due to the benefits that football promises to the community in return. However, the game has increasingly been dominated by a focus on financial (monetary) value, at the expense of such benefits being delivered to the clubs' local communities. This article examines a need for deliberation over what accountability is owed by football clubs to their local communities in the context of questioning what and for whom football is for. Design/methodology/approach: This exploration is undertaken within the context of the English game, where a series of issues has resulted in the UK Government undertaking a "fan led review of football governance". The report produced by this review is analysed to understand whether the contents and recommendations enters the debate over what accountability is owed to local communities. Findings: While the UK Government's fan led review recognises the pivotal role of local communities in the formation of the English game, its focus and resulting recommendations are mostly on the financial sustainability of the clubs. The analysis demonstrates that, due to their focus on financial value, the implementation of the report's recommendations is more likely to exacerbate the underlying issues rather than resolving them. Originality/value: The call for deliberation over whether and what accountability is owed to local communities has been repeated over time. The UK Government's fan led review provided an important opportunity to engage in that deliberation. However, the dominance of financial value within football has all but silenced any call for and action regarding this. [ABSTRACT FROM AUTHOR]