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Abstract Background Advance care planning (ACP) is a process of discussion about goals of care and a means of setting on record preferences for care of patients who may lose capacity or communication ability in the future. Implementation of ACP is widely promoted by policy makers. This study examined how community palliative care nurses in England understand ACP and their roles within ACP. It sought to identify factors surrounding community nurses' implementation of ACP and nurses' educational needs. Methods An action research strategy was employed. 23 community nurses from two cancer networks in England were recruited to 6 focus group discussions and three follow up workshops. Data were analysed using a constant comparison approach. Findings Nurses understood ACP to be an important part of practice and to have the potential to be a celebration of good nursing care. Nurses saw their roles in ACP as engaging with patients to elicit care preferences, facilitate family communication and enable a shift of care focus towards palliative care. They perceived challenges to ACP including: timing, how to effect team working in ACP, the policy focus on instructional directives which related poorly to patients' concerns; managing differences in patients' and families' views. Perceived barriers included: lack of resources; lack of public awareness about ACP; difficulties in talking about death. Nurses recommended the following to be included in education programmes: design of realistic scenarios; design of a flow chart; practical advice about communication and documentation; insights into the need for clinical supervision for ACP practice. Conclusions Nurses working in the community are centrally involved with patients with palliative care needs who may wish to set on record their views about future care and treatment. This study reveals some important areas for practice and educational development to enhance nurses' use and understanding of ACP.

Introduction: This exploratory literature review seeks to examine the literature around commissioning processes in the co-production of health and care services, focusing on two questions: How do health and care commissioning processes facilitate and/or pose barriers to co-production in service design and delivery? What are the contextual factors that influence these processes?, Method: A systematic search of three databases (Medline, Public Health and Social Policy and Practice) and a search platform (Web of Science) was conducted for the period 2008-2023. A total of 2675 records were retrieved. After deduplication, 1925 were screened at title and abstract level. Forty-seven reports from 42 United Kingdom and Ireland studies were included in the review. A thematic synthesis of included studies was conducted in relation to the research questions., Results: The review identified one overarching theme across the synthesised literature: the complexity of the commissioning landscape. Three interconnected subthemes illuminate the contextual factors that influence this landscape: commissioners as leaders of co-production; navigating relationships and the collective voice., Conclusion: Commissioning processes were commonly a barrier to the co-production of health and care services. Though co-production was an aspiration for many commissioners, the political and economic environment and service pressures meant that it was often not fully realised. More flexible funding models, longer-term pilot projects, an increased emphasis in social value across the health and care system and building capacity for strong leadership in commissioning is needed., Patient and Public Contribution: Patients and the public did not contribute to this review as it was a small piece of work following on from a completed project, with no budget for public involvement., (© 2024 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

A recent national survey of bereaved partners found high levels of complicated grief and psychological distress, with evidence that loneliness and isolation may contribute to these outcomes. However, the mechanisms of action for this have not been explored. To advance grief theory this paper reports analysis of the survey free-text data to examine the relationship between social support and emotional responses to bereavement. Individuals bereaved of a civil partner or spouse 6-10 months previously were identified through death registration data. 569/1945 (29 %) completed surveys were received. Of those, 311 participants (55 %) provided responses to two free-text questions which asked about their 'feelings since the death of their partner or spouse', and 'about the support around' them. Data were analysed using corpus-assisted discourse analysis and the discourse dynamics approach for figurative language. Participants described diverse emotional responses to the bereavement (e.g. sadness, anger, denial, acceptance), and the value of formal and informal bereavement support. Although many of the experiences described are accounted for in existing grief theory, some participants described a liminal experience not recognised within these theories. They felt trapped, unable to engage with loss or restoration, and unable to move forward as their planned future no longer existed. They sought out 'communitas' (solidarity in experiences), but often found support from their social networks had diminished. Metaphors were used to describe this liminality, with partner grief expressed as a dark agentic force, a monster, an abyss, and as water. The findings of this study offer original insights into experiences and trajectories of bereavement, and our understandings of prolonged or complicated grief. A novel model 'Between Loss and Restoration' is presented to include these experiences. Recognition of the place for liminality within the spectrum of grief experiences could enhance grief literacy and improve formal and informal bereavement support provision., Competing Interests: Declaration of competing interest The authors report there are no competing interests to declare., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Background: Data suggest poorer bereavement outcomes for lesbian, gay and bisexual people, but this has not been estimated in population-based research. This study compared bereavement outcomes for partners of same-gender and different-gender decedents., Methods: In this population-based, cross-sectional survey of people bereaved of a civil partner or spouse 6-10 months previously, we used adjusted logistic and linear regression to investigate outcomes of interest: (1) positive screen on Inventory of Complicated Grief (ICG), (2) positive screen on General Health Questionnaire (GHQ), (3) grief intensity (ICG) and (4) psychiatric symptoms (GHQ-12)., Results: Among 233 same-gender partners and 329 of different-gender partners, 66.1% [95% confidence interval (CI) 60.0-72.2] and 59.2% [95% CI (53.9-64.6)] respectively screened positive for complicated grief on the ICG, whilst 76.0% [95% CI (70.5-81.5)] and 69.3% [95% CI (64.3-74.3)] respectively screened positive on the GHQ-12. Same-gender bereaved partners were not significantly more likely to screen positive for complicated grief than different-gender partners [adjusted odds ratio (aOR) 1.56, 95% CI (0.98-2.47)], p = 0.059, but same-gender bereaved partners were significantly more likely to screen for psychiatric caseness [aOR 1.67 (1.02, 2.71) p = 0.043]. We similarly found no significant association of partner gender with grief intensity [ B = 1.86, 95% CI (-0.91to 4.63), p = 0.188], but significantly greater psychological distress for same-gender partners [ B = 1.54, 95% CI (-0.69-2.40), p < 0.001]., Conclusions: Same-gender bereaved partners report significantly more psychological distress. In view of their poorer sub-clinical mental health, clinical and bereavement services should refine screening processes to identify those at risk of poor mental health outcomes.

Background: Studies have highlighted how advanced prostate cancer causes biographical disruption and presents challenges to masculine identities for men. This article draws on a wider study that focused on the experiences of men living with advanced prostate cancer and their caregivers. Although men's experience of advanced illness is not overlooked in the literature, only a small body of work has taken an in-depth look at men's experiences with advanced prostate cancer and their caregivers in a non-Westernised cultural and social context., Objective: To explore how advanced prostate cancer impacts on men's masculine identity from the perspective of patients and their caregivers., Methods: A qualitative study of men living with advanced prostate cancer ( n  = 23) and family caregivers ( n  = 23) in Ghana. We used the Consolidated Criteria for Reporting Qualitative Studies (COREQ) as the reporting guideline., Results: The findings from this study highlight profound challenges for most men to their masculine identities, from both the treatment and the symptoms of advanced prostate cancer within a non-Westernised, patriarchal society. Four main themes were developed. These were the impact on masculinity in terms of: (1) physical changes, (2) sexual ability, (3) socio-economic roles and (4) expressing emotions. Changes in physical appearance, feeling belittled, having no active sexual life and the inability to continue acting as provider and protector of the family made some men describe their situation as one of moving out of the 'frying pan into the fire'., Conclusion: This study revealed the impact of advanced prostate cancer on masculine identity. These narratives add a new dimension to what is already known about the impacts on men's masculine identities when dealing with advanced prostate cancer. This knowledge can help improve the care provided to men with advanced prostate cancer with emphasis on the cultures, beliefs and aspirations of these men and their caregivers., Competing Interests: The authors declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article., (© The Author(s), 2023.)

Lesbian, gay, bisexual and trans+ (LGBT+) people report poorer health than the general population and worse experiences of healthcare particularly cancer, palliative/end-of-life, dementia and mental health provision. This is attributable to: (a) social inequalities, including 'minority stress'; (b) associated health-risk behaviours (eg, smoking, excessive drug/alcohol use, obesity); (c) loneliness and isolation, affecting physical/mental health and mortality; (d) anticipated/experienced discrimination and (e) inadequate understandings of needs among healthcare providers. Older LGBT+ people are particularly affected, due to the effects of both cumulative disadvantage and ageing. There is a need for greater and more robust research data to support growing international and national government initiatives aimed at addressing these health inequalities. We identify seven key research strategies: (1) Production of large data sets; (2) Comparative data collection; (3) Addressing diversity and intersectionality among LGBT+ older people; (4) Investigation of healthcare services' capacity to deliver LGBT+ affirmative healthcare and associated education and training needs; (5) Identification of effective health promotion and/or treatment interventions for older LGBT+ people, and subgroups within this umbrella category; (6) Development of an (older) LGBT+ health equity model; (7) Utilisation of social justice concepts to ensure meaningful, change-orientated data production which will inform and support government policy, health promotion and healthcare interventions., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. No commercial re-use. See rights and permissions. Published by BMJ.)

There have been substantial achievements in legislative and human rights for lesbian, gay, bisexual and transgender (LGBT) older people and their visibility in health and social care has equally increased. These appear to have surpassed the ability of care services to meet their needs given documented concerns about the accessibility, inclusiveness and safety of care services particularly institutionalised care. This requires systemic change not easy to operationalise. This paper describes an action research initiative where six care homes belonging to a national care provider, collaborated to assess and develop their services with the support of local LGBT "Community Advisors" and academic partners. Framed within Rogers' (2003) change management framework and combined with a participatory leadership approach, a programme of intervention was implemented comprising structured activities around seven key areas thought to promote LGBT inclusion. A formal evaluation was conducted involving 35 pre- and post-intervention qualitative interviews with 18 people (community advisors; care home managers and senior managers). The findings are presented across three key themes (1) starting points on the journey; (2) challenges encountered along the journey (organisational and interpersonal); and (3) making change happen; opportunities, initiatives and gains. We make recommendations on the value of a programme approach for achieving tangible outcomes that demonstrate increased inclusion for older LGBT people living in long-term care settings., (© 2017 John Wiley & Sons Ltd.)

Background: Lesbian, gay, bisexual and/or trans (LGBT) people have higher risk of certain life-limiting illnesses and unmet needs in advanced illness and bereavement. ACCESSCare is the first national study to examine in depth the experiences of LGBT people facing advanced illness., Aim: To explore health-care experiences of LGBT people facing advanced illness to elicit views regarding sharing identity (sexual orientation/gender history), accessing services, discrimination/exclusion and best-practice examples., Design: Semi-structured in-depth qualitative interviews analysed using thematic analysis., Setting/participants: In total, 40 LGBT people from across the United Kingdom facing advanced illness: cancer ( n = 21), non-cancer ( n = 16) and both a cancer and a non-cancer conditions ( n = 3)., Results: In total, five main themes emerged: (1) person-centred care needs that may require additional/different consideration for LGBT people (including different social support structures and additional legal concerns), (2) service level or interactional (created in the consultation) barriers/stressors (including heteronormative assumptions and homophobic/transphobic behaviours), (3) invisible barriers/stressors (including the historical context of pathology/criminalisation, fears and experiences of discrimination) and (4) service level or interactional facilitators (including acknowledging and including partners in critical discussions). These all shape (5) individuals' preferences for disclosing identity. Prior experiences of discrimination or violence, in response to disclosure, were carried into future care interactions and heightened with the frailty of advanced illness., Conclusion: Despite recent legislative change, experiences of discrimination and exclusion in health care persist for LGBT people. Ten recommendations, for health-care professionals and services/institutions, are made from the data. These are simple, low cost and offer potential gains in access to, and outcomes of, care for LGBT people.