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 multi-level 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, 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 2017-2022, 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 open access 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.

Maternity care for refugees living in Greek refugee camps: What are the challenges to provision?

BACKGROUND: Over a two-year period between 2015 and 2016, unprecedented numbers of people arrived in Greece fleeing conflict, persecution, and poverty. With new arrivals every day, there is a significant unmet need for health care provision, posing a challenge to the Greek Healthcare System. For pregnant refugees, a known vulnerable group, this has resulted in a complex partnership of shared maternity care between humanitarian organizations, the Greek national health care system, and European multi-state initiatives. Our aim was to understand the challenges to providing maternity care services in Greek refugee camps as perceived by health care providers. METHODS: A qualitative study comprising observation and semi-structured interviews with health care providers working with pregnant refugees was conducted in five refugee camps in May 2017. Interviews were transcribed and analyzed with thematic coding. RESULTS: Twenty-one health care providers were interviewed and field notes taken from observational study of services in five refugee camps. Health care providers describe difficult cross-cultural communication to be their biggest challenge to caring for pregnant refugee women. The limited availability of female only safe spaces is also identified as a barrier. Lastly, the overburdened Greek public health system limits their ability to provide care. CONCLUSIONS: Our research supports other literature describing difficult communication and the overburdened Greek health system as significant health care barriers for pregnant refugees in Greece. There is limited literature examining the role of "safe space," and further research is needed. Stakeholders providing maternity care to refugees should look to tackle these key issues as they seek to provide care to this population.