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.</p

Heterosexual couples and prostate cancer support groups: a gender relations analysis.

Introduction: Men diagnosed with prostate cancer (PCa) can receive supportive care from an array of sources including female partners and prostate cancer support groups (PCSGs). However, little is known about how heterosexual gender relations and supportive care play out among couples who attend PCSGs. Distilling such gender relation patterns is a key to understanding and advancing supportive care for men who experience PCa and their families

COVID-19: impact on pediatric palliative care

Context Children and young people (CYP) with life-limiting or life-threatening conditions (LLLTC) and their families are potentially vulnerable during COVID-19 lockdowns due to pre-existing high clinical support needs and social participation limitations. Objectives To explore the impact of the COVID-19 pandemic and lockdowns on this population. Methods Sub-analysis of an emergent COVID-19 related theme from a larger semi-structured interview study investigating priority pediatric palliative care outcomes. 106 UK-wide purposively-sampled CYP with LLLTC, parent/carers, siblings, health professionals and commissioners. Results COVID-19 was raised by participants in 12/44 interviews conducted after the UK's first confirmed COVID-19 case. Key themes included loss of vital social support, disruption to services important to families, and additional psychological distress. Conclusions Continued delivery of child- and family-centred palliative care requires innovative assessment and delivery of psycho-social support. Disruptions within treatment and care providers may compound support needs, requiring co-ordination for families facing multi-agency delays

COVID-19: impact on pediatric palliative care

Context Children and young people (CYP) with life-limiting or life-threatening conditions (LLLTC) and their families are potentially vulnerable during COVID-19 lockdowns due to pre-existing high clinical support needs and social participation limitations. Objectives To explore the impact of the COVID-19 pandemic and lockdowns on this population. Methods Sub-analysis of an emergent COVID-19 related theme from a larger semi-structured interview study investigating priority pediatric palliative care outcomes. 106 UK-wide purposively-sampled CYP with LLLTC, parent/carers, siblings, health professionals and commissioners. Results COVID-19 was raised by participants in 12/44 interviews conducted after the UK's first confirmed COVID-19 case. Key themes included loss of vital social support, disruption to services important to families, and additional psychological distress. Conclusions Continued delivery of child- and family-centred palliative care requires innovative assessment and delivery of psycho-social support. Disruptions within treatment and care providers may compound support needs, requiring co-ordination for families facing multi-agency delays

Spiritual, religious, and existential concerns of children and young people with life-limiting and life-threatening conditions: a qualitative interview study

Background: Despite being a core domain of palliative care, primary data on spiritual and existential concerns has rarely been collected among children with life-limiting and life-threatening conditions and their families. Existing evidence has tended to focus on the religious aspects among children with cancer. Aim: To identify the spiritual needs of children with life-limiting and life-threatening conditions. Design: Cross-sectional semi-structured, qualitative interview study with children, families and health and social care professionals. Verbatim transcripts were analysed using Framework analysis Setting/participants: Purposively sampled children with life-limiting and life-threatening conditions, their parents and siblings, health and social care professionals recruited from six hospitals and three children’s hospices in the UK, and commissioners of paediatric palliative care services recruited through networks and a national charity. Results: One hundred six participants were interviewed: 26 children (5–17 years), 53 family members (parents/carers of children 0–17 years and siblings (5–17 years)), 27 professionals (health and social care professionals and commissioners of paediatric palliative care). Themes included: living life to the fullest, meaning of life and leaving a legacy, uncertainty about the future, determination to survive, accepting or fighting the future and role of religion. Children as young as 5 years old identified needs or concerns in the spiritual domain of care. Conclusions: Addressing spiritual concerns is essential to providing child- and family-centred palliative care. Eliciting spiritual concerns may enable health and social care professionals to identify the things that can support and enhance a meaningful life and legacy for children and their families