Hidden From Sight-From the Closet to the Paywall: A Rapid Evaluation of Restricted and Monetized Access to LGBTQ+ Inclusive Palliative, End-of-Life, and Bereavement Care Research.

INTRODUCTION: LGBTQ+ people experience higher burdens of life-limiting illnesses, poorer health outcomes, and multilevel barriers to accessing palliative, end-of-life, and bereavement care. High quality evidence is needed to inform interventions to address these inequities, and inform inclusive practices and policies. Despite global initiatives to improve availability of peer-reviewed journal articles, the minority of research is open access (OA). We aimed to evaluate accessibility of literature related to LGBTQ+ inclusive palliative, end-of-life, and bereavement care. METHODS: A rapid review of the evidence regarding LGBTQ+ inclusive palliative, end-of-life, and bereavement care was conducted; OA status of identified articles was assessed. Articles from three published systematic reviews were included (2012, 2016, and 2020). Review articles were updated using the original search and inclusion/exclusion strategies. RESULTS: 66 articles related to LGBTQ+ inclusive palliative, end-of-life and bereavement care were identified between 1990-2022. Of these, only 21% (n=14) were OA. Of the OA articles, 79% were published between 2017 and 2022, and 50% were published between 2020-2022, reflecting more recent shifts towards OA publishing. DISCUSSION: Health and social care professionals and policy makers rely on access to high quality evidence to inform their work. Failing to make articles related to the needs of LGBTQ+ people and populations OA risks further marginalisation and worsened inequities. Innovative journal policies and funding are needed to enable access, particularly for research that foregrounds the needs of marginalised communities. Where articles are currently behind paywalls, there is a need for accessible summaries or policy briefs to inform inclusive policy and practice.

'My life is a mess but I cope': An analysis of the language children and young people use to describe their own life-limiting or life-threatening condition.

BACKGROUND: Children and young people with life-limiting and life-threatening conditions have multidimensional needs and heterogenous cognitive and communicative abilities. There is limited evidence to support clinicians to tailor their communication to each individual child. AIM: To explore the language children and young people use to describe their own condition, to inform strategies for discussing needs and priorities. DESIGN: Positioned within a social constructivist paradigm, a secondary discourse analysis of semi-structured interview data was conducted incorporating the discourse dynamics approach for figurative language. SETTING/PARTICIPANTS: A total of 26 children and young people aged 5-17 years with life-limiting or life-threatening conditions (6 cancer; 20 non-cancer) were recruited from nine clinical services (six hospitals and three hospices) across two UK nations. RESULTS: The language children and young people use positions them as 'experts in their condition'. They combine medical terminology with their preferred terms for their body to describe symptoms and treatments, and use comparatives and superlatives to communicate their health status. Their language depicts their condition as a 'series of (functional and social) losses', which single them out from their peers as 'the sick one'. Older children and young people also incorporate figurative language to expand their descriptions. CONCLUSION/DISCUSSION: Children and young people can provide rich descriptions of their condition. Paying attention to their lexical choices, and converging one's language towards theirs, may enable more child-centred discussions. Expanding discussions about 'what matters most' with consideration of the losses and differences they have experienced may facilitate a fuller assessment of their concerns, preferences and priorities.

Effect of Anti-TNF Biologic Exposure During Pregnancy on Villitis of Unknown Etiology Diagnoses in Patients with Autoimmune Disease.

Tumor necrosis factor-α (TNF-α) antagonists are highly effective in controlling autoimmune diseases. This has led to speculation that they might also be useful in treating inflammatory placental conditions, such as chronic villitis of unknown etiology (VUE). VUE affects 10-15% of term placentas and is associated with recurrent fetal growth restriction (FGR) and pregnancy loss. We aimed to evaluate outcomes in patients with autoimmune diseases with and without anti-TNF-α biologic exposure during gestation. This retrospective cohort study compared pregnant women with autoimmune disease taking anti-TNF-α biologics (n = 89) to pregnant women with autoimmune disease but not taking a biologic (n = 53). We extracted data on all patients meeting our inclusion criteria over a 20-year period. Our primary outcome was the diagnosis of VUE by histology. Our secondary outcomes were maternal and neonatal complications such as preeclampsia, FGR, and neonatal intensive care admission. Kruskal-Wallis and chi-squared tests were performed as appropriate for statistical analysis. Maternal characteristics were comparable between groups, and there was no increase in adverse pregnancy outcomes based on anti-TNF-α treatment. Exposure to anti-TNF-α therapy had no significant effect on the incidence of VUE or other obstetric complications. Within the cohort exposed to anti-TNF-α biologics during pregnancy, the rate of VUE was 9.3%, which is comparable to the reported general population risk. Our data support the safety profile of biologic use in pregnancy.