Editorial - Talking about sex, relationships and intimacy: new guidance and standards for nurses and other health and social care professionals working with young people with life-limiting and life-threatening conditions

Publication of Sexuality Standards and Guidance for nurses and other health and social care professionals working with life-limited young adults, care staff and their families (December 2015 and July 2016). In 2013, The Open University Sexuality Alliance was established. This is a collaborative partnership which brings together young people and adults with Life-threatening and life-limiting conditions (LLTCs), representatives from the public and third sector, policy makers, doctors, lawyers, academics and nurses with particular expertise in addressing the sexuality of young people with an uncertain life-course. In partnership with Together for Short Lives, the UK charity for children and young people with LLTCs, the Alliance brought together a range of individuals and organisations, including Family Planning Association and Action Duchenne (the full membership is provided in Appendix 1). The primary focus for the Alliance was to develop Sexuality Guidance and Standards. These were published in December 2015 and a second edition is currently in press. The Sexuality Guidance provides important information about sex and sexuality for health, education and social care staff working with young people with LLTCs. The need for the Sexuality Guidance and Standards for people with LLTCs has been recognized by young people themselves, and practitioners in health, social care and education settings across the public and third sectors, particularly nurses

Undertaking Doctoral Research with Children and Young People with Life-limiting or Life-threatening Conditions

Doctoral level research can contribute to the evidence base, particularly in under‐researched areas and numerically small fields such as children and young people's palliative care. It is acknowledged that much of what we currently do in children's and young people's palliative care is eminence‐based, rather than evidence‐based (Together for Short Lives, 2018). Whilst sharing experience and wisdom was valuable, particularly when the specialty was in its infancy, it is important now to develop an evidence base to ensure that children, young people and their families receive the highest standard of care. This requires fostering the development of a research culture, including trained clinical and non‐clinical researchers, who will pursue a penetrating and rigorous research agenda (Beecham et al., 2016)

Involving young people and adults with life-limiting conditions in research on sex: the intersections of taboo and vulnerability

There is an increasing body of literature that seeks to explore what is ‘sensitive’ about ‘sensitive’ research but there is, arguably, an even larger canon of literature that refers more commonsensically to ‘sensitive’ research without seeking to problematise it. In order to problematise and interrogate this concept, this paper draws on four related projects exploring sex, intimacy and relationships for people, over 16 years, who have life-limiting or life-threatening conditions (LLTCs). In particular, we focus on how, when and why these projects were regarded as ‘sensitive’ and consider who defined them as such. Drawing on the notion of methodological performativity, whereby methods are seen to ‘bring into being what they also discover’, we examine aspects of the process of doing ‘sensitive’ research, exploring how research methods and techniques are employed because the research has already been defined (by others and by us) as ‘sensitive’ while simultaneously serving to (re)construct and (re)enforce the ‘sensitive’ nature of it

Relationships and sexuality in young adults with life-limiting conditions in England

Background Until recently surviving into adulthood with a life-limiting condition was rare, and as such, young(er) adults with life-limiting conditions are now a unique population about whom it is timely to explore their considerations about sexuality, relationships and reproduction. Young adults with chronic conditions diagnosed in childhood, especially those which are life-limiting or life-threatening may well be less mature than their healthy peers( Beresford, 2013) but may still desire to experience an intimate relationship. The' emerging adult's' survival into adulthood is due to advancements in medicine and technology (Craig & Lidstone, 2012). This research builds upon the first author's previous research into the sexuality of young adults with neural tube defects (Blackburn, 2002; Blackburn, 2008) and is the focus of her current PhD. Aims The research is exploring: The views and experiences of young(er) adults with life-limiting conditions about relationships, sex and reproduction? How young(er) adults with life-limiting conditions may best be supported in making relationships, sexual and reproductive choices? The views of their carers, professional staff, family members and friends who support them? Methodology Semi- structured Interviews are being conducted with young people over 16 years with Cystic Fibrosis and Duchenne Muscular Dystrophy, as well as the carers and professionals who support them. The data will be analysed using NVIVO software. Results Pilot data and early findings from the main study will be addressed plus the ethical issues of undertaking sensitive research about sexuality with young adults with life-limiting conditions. Conclusions These will be addressed in 2014

The sexuality of life-limited young(er) people in the UK

Background and Discussion Previously children and young people with life-limiting illnesses were not expected to live until adulthood. As a result of advances in medicine and technology, there are a growing number of children surviving into adulthood who cannot always access appropriate, specialist palliative care services as adults (Fraser et al, 2011; Fraser at al, 2012). Some children’s and young people's hospices in the UK and Australasia have made significant progress in developing transitional services for young adults whilst others are assessing what support maybe required and how best and where to deliver this care (Blackburn, 2010). What is less clear, is how intimacy and the sexuality of young people at the end-of- life should be addressed, given that sexuality may represent different things to people and that young people’s sexual needs at the end-of-life are often ignored (Triangle, 2011). Palliative care aims to be holistic, yet evidence suggests that sexuality is often overlooked when assessing care needs (Blagborough, 2010). As sexuality and intimacy are important components of quality of life until death, increasingly palliative care teams are seeking advice and information about addressing the relationship needs of young people with life- limiting conditions. Young people with life-limiting illnesses and their carers should be able to access information and be included in any discussions about sexuality and intimacy throughout their lives (De Vocht, et al 2011). This has not always been the case. Drawing on the international sexuality and disability literature, my previous work and current research, this session will address: • My current sexuality research with The Open University, UK • What sexuality means to people with life-limiting illnesses in different cultures • Young People’s choices about intimacy at the end -of –life • Ethical and methodological issues in conducting research about sex Methods During late 2013 and early 2014, qualitative, semi-structured interviews will be undertaken with 10 adults with cystic fibrosis (CF) and Duchene muscular dystrophy (DMD) or spinal muscular atrophy (SMA) over 16 years, as well as carers and professionals supporting people with life-limited condition. Results and analysis These will be considered in 2014 but I am unable to report these at this stag

‘Exhausted, emotional, at breaking point’: The mental wellbeing of young adults with shortened lives

Background: Young adults with life-limiting or life-threatening conditions (LLTCs) are ordinarily extremely challenged in terms of health and wellbeing and especially vulnerable to social isolation and exclusion 1,2. Society’s response to COVID-19 poses an additional threat to this group who are at risk of being further left behind, creating long-lasting consequences for their mental wellbeing. Aims: To examine the unintended consequences of (COVID-19) epidemic-control decisions on young adults with LLTCs to (a) understand the needs of this group (b) develop guidance and support and, (c) determine how consequences could be mitigated. Methods: This inclusive research project, underpinned by an interpretive qualitative framework3 draws on the principles of co-design4. Research participants were recruited using purposive and theoretical sampling using a variety of methods including advertising for participants, existing networks and snowballing. During July-September 2020, in-depth interviews were conducted via video-conference with 28 young adults aged 18-40. Data were analysed iteratively using constructivist Grounded Theory Method (cGTM)5 and using the qualitative software analysis package QSR NVivo6. Results: Participants experienced a decline in mental wellbeing with those with pre-existing mental health issues showing the most significant decline; in these cases, participants spoke about suicidal ideation, depression and anxiety and an increased need for medication and therapy. Many participants described a ‘rollercoaster’ of emotions and said that they had felt ‘petrified’ ‘overwhelmed, ‘worried’ and ‘forgotten’. Key themes included (a) the constant management of risk to avoid (physical) harm from COVID-19 while protecting mental health (b) the desire to ‘keep busy’ as a means of ‘thinking less’ in order stay mentally well (c) a re-evaluation of what matters in life. Conclusion: Key learning points: (1) acknowledgement that although people with LLTCs are typically isolated and excluded that the pandemic has magnified and exacerbated this; (2) the need for regular communication; (3) enhanced mental health support. References: 1. Johnson M & Hodgson J (2018) Hidden Lives: tackling the social exclusion of families caring for a seriously ill child. Together for Short Lives: Bristol. http://www.togetherforshortlives.org.uk/wp-content/uploads/2018/03/180312-Report-on-Family-Survey-and-Misconceptions.pdf [accessed 11 June 2021]. 2. Knighting K, Bray L, Downing J, et al. (2018) Meeting the needs of young adults with life-limiting conditions: A UK survey of current provision and future challenges for hospices. Journal of Advanced Nursing, 74: 8. https://doi.org/10.1111/jan.13702 [accessed 11 June 2021]. 3. Denzin N K (2003) The practices and politics of interpretation. In N.K.Denzin &Y.S.Lincoln (Eds) Collecting and interpreting qualitative materials (2nd ed, pp. 458–498).Thousand Oaks, CA: Sage. 4. Nind M (2014) What is Inclusive Research? London: Bloomsbury Academic. 5. Charmaz K (2006) Constructing Grounded Theory: A Practical Guide through Qualitative Analysis. London: Sage. 6. QSR International Pty Ltd. (2019) NVivo (Mac Version 12) https://www.qsrinternational.com/nvivo-qualitative-data-analysis-software/home [accessed 11 June 2021]

'I could almost just disappear, and would anyone really notice?' Precariousness and precarity when living with a life-limiting or life-threatening condition during the coronovirus (COVID-19) pandemic in the UK

Living with a life-limiting or life-threatening condition (LLTC) is a precarious embodied state. Not only do individuals need to constantly adjust to the challenges of living with complex, often progressive, chronic illness but they also contend with a lack of diagnostic certainty. Living with a prognosis of comparatively premature death is a constant existential and material threat to human existence, highlighting what Butler (2004) describes as the ‘corporeal vulnerability’ of (all) human life: a fundamental form of precariousness.As disability scholars have previously highlighted (for example, Knight, 2014), precariousness is not equally distributed; the coronavirus pandemic is deadly, but not uniformly so (Abrams and Abbott, 2020). In the UK people with ‘pre-existing’ or ‘underlying health conditions’ have been casually and repeatedly referred to as those most at risk of dying from COVID-19 in attempts to reassure the wider population that they are unlikely to die. This othering has served to render the precarity of those with living with LLTCs simultaneously visible and invisible.This paper draws on an inclusive qualitative research study based on in-depth interviews with 26 young adults (aged 18-40) with LLTCs living in the UK. Using a constructivist grounded theory approach, we explore the experiences of ‘shielding’ and ‘lockdown’ during the first wave of the COVID-19 pandemic. In particular we examine the context of participants’ embodied precariousness and precarity in relation to the rationing of limited healthcare resources, an increased reliance on private domestic care and intensified social isolation finally reflecting on their imagined post-COVID future

'Whose life are they going to save? It's probably not going to be mine!' Living with a Life-shortening Condition during the Coronavirus (COVID-19) Pandemic: A grounded theory study of embodied precarity

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