In this article, we detail the politics and practicalities of co‐produced disability research with disabled young people with life‐limiting and life‐threatening impairments. We centre an ESRC‐funded arts‐informed co‐produced research project that has brought together a Co‐Researcher Collective of disabled young people. Co‐production is an established approach; however, our co‐researchers have led us to develop inclusive research practices that engage with online social research methods in innovative ways. As we detail our experiences, we aim to encourage disability studies researchers and others to adopt virtual environments when researching with and for the lives of disabled people.

This paper is built upon an assumption: that social theory can be generated through a meaningful engagement with a co‐researcher group of disabled young people. Our co‐researchers are theoretical provocateurs and theorists in their own right who, through their activism and writing, are challenging us to reconsider the meaning of life, death and disability. Their work on our funded Economic and Social Research Council (ESRC) project has enabled us to consider the promise and potential of humanist and posthuman epistemologies, theories, methodologies, interventions and activisms. The paper introduces the research, the authors of this paper (academics and co‐researchers) and then explores three layers of analysis that work the edges of posthuman thinking; sovereign and assembled selves; affects and desires; mourning and affirmation. We conclude by asserting that as a research team we are engaging with a DisHuman approach to theory and activism: one that blends the pragmatics of humanism with posthuman possibilities.

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.

Background Research is essential to improving outcomes for patients with life-threatening illness and it is vital that hospices are at the centre of this (Payne, Preston, Turner et al, 2013). Journal clubs have been identified as a way of sharing evidence amongst hospice teams, developing staff research skills and contributing to hospice research culture but they are not widespread in hospices, with barriers often encountered in their development and sustainability (Turner & Payne, 2019. Eur J Palliat Care. 19:34). Aims This project aims to develop a toolkit to support hospices in establishing and sustaining multidisciplinary journal clubs. Methods At Marie Curie Hospice, Liverpool, a new model of journal club was implemented in January 2019 with a focus on promoting reflection of the relevance of research to clinical practice (Steele, Stanley & Nwosu, 2019. BMJ Support Palliat Care. 9:A50). Attendance, and contributions to presenting, come from across the multidisciplinary team and palliative care service sites in the locality. A toolkit to allow this to be replicated was developed by the research team, informed by participant feedback and the successes and challenges of setting up the journal club from scratch then surviving, growing and thriving in a semi-virtual model despite the COVID-19 pandemic (Stanley, Nwosu & Finney, 2021. BMJ Support Palliat Care. 11:A4). ResultsThe toolkit consists of a practical guide to both setting up and running the journal club, with flexibility to be individualised to diverse hospices across the UK. In addition, it includes resources such as presenter templates and certificates. The toolkit is being piloted in two palliative care centres so that facilitators and barriers to its use can be identified. Conclusions This work will lead to the development of a freely available toolkit that any hospice can use to support their implementation of a journal club, thus promoting a research culture and evidence-based practice.

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