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.

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Abstract. Improvements in biomedical technologies, combined with changing social attitudes to sexual minorities, provide new opportunities for HIV prevention among gay and other men who have sex with men (GMSM). The potential of these new biomedical technologies (biotechnologies) to reduce HIV transmission and the impact of HIV among GMSM will depend, in part, on the degree to which they challenge prejudicial attitudes, practices and stigma directed against gay men and people living with HIV (PLHIV). At the structural level, stigma regarding gay men and HIV can influence the scale-up of new biotechnologies and negatively affect GMSM's access to and use of these technologies. At the personal level, stigma can affect individual gay men's sense of value and confidence as they negotiate serodiscordant relationships or access services. This paper argues that maximising the benefits of new biomedical technologies depends on reducing stigma directed at sexual minorities and people living with HIV and promoting positive social changes towards and within GMSM communities. HIV research, policy and programs will need to invest in: (1) responding to structural and institutional stigma; (2) health promotion and health services that recognise and work to address the impact of stigma on GMSM's incorporation of new HIV prevention biotechnologies; (3) enhanced mobilisation and participation of GMSM and PLHIV in new approaches to HIV prevention; and (4) expanded approaches to research and evaluation in stigma reduction and its relationship with HIV prevention. The HIV response must become bolder in resourcing, designing and evaluating programs that interact with and influence stigma at multiple levels, including structural-level stigma.Additional keywords: community mobilisation, health promotion, men who have sex with men, policy, social inequality.

We developed a chronic obstructive pulmonary disease (COPD) patient-reported experience measure (PREM-C9). 174 patients with COPD (86 [49%] with a confirmed diagnosis and 88 [51%] with a self-reported diagnosis of COPD) completed a 38-item list, COPD Assessment Test (CAT) and Hospital Anxiety and Depression Scale (HADS). Hierarchical and Rasch analysis produced a 9-item list (PREM-C9). It demonstrated fit to the Rasch model (χ² p=0.33) and correlated moderately with CAT (r=0.42), HAD-anxiety (r=0.30) and HAD-depression (r=0.41) (p<0.05). A substudy confirmed its ability to detect change prepulmonary and postpulmonary rehabilitation. The PREM-C9 is a simple, valid measure of experience of patients living with COPD, validated in this study population with mild to very severe disease; it may be a useful measure in research and clinical audits.

Objectives: In recent decades, the needs of people living with HIV have evolved as life expectancy has greatly improved. Now, a new definition of long-term success (LTS) is necessary to help address the multifaceted needs of all people living with HIV. Methods: We conducted a two-phase research programme to delineate the range of experiences of people living with HIV. The insights garnered from these research phases were explored in a series of expert-led workshops, which led to the development and refinement of the LTS framework. Results:The insights generated from the research phases identified a series of themes that form a part of LTS. These themes were subsequently incorporated into the LTS framework, which includes five outcome pillars: sustained undetectable viral load, minimal impact of treatment and clinical monitoring, optimized healthrelated quality of life, lifelong integration of healthcare, and freedom from stigma and discrimination. A series of supporting statements were also developed by the expert panel to help in the achievement of each of the LTS pillars.

Respiratory nurses make a significant contribution to the delivery of respiratory healthcare, but there is a dearth of nurse-led, practice-focused, published research.Using a modified three-round Delphi, this study sought to identify research priorities for respiratory nursing to inform a national research strategy. Study information and the survey link were sent electronically to members of UK professional respiratory organisations. Round 1 had 78 items across 16 topics, informed by a systematic literature review. Respondents suggested additional items which were content analysed to inform Round 2. Respondents rated all items and ranked the topics in all rounds. To ensure rigour, rounds had an explicit focus with pre-determined criteria for consensus (70%).In total, 363 responses were received across Rounds 1, 2 and 3 (n=183, 95 and 85, respectively). The top five research priorities were: 1) “Patient understanding of asthma control”; 2) “The clinical and cost-effectiveness of respiratory nurse interventions”; 3) “The impact of nurse-led clinics on patient care”; 4) “Inhaler technique”; and 5) two topics jointly scored: “Prevention of exacerbations” and “Symptom management”.With potential international significance, this is the first UK study to identify research priorities for respiratory nursing, providing direction for those planning or undertaking research.

Background Critical illness is a traumatic experience, often resulting in post‐intensive care syndrome, affecting people's physical, psychological, emotional, and social well‐being. The early recovery period is associated with increased risk, negatively impacting longer‐term outcomes. Aims The aims of this study were to understand the recovery and rehabilitation needs of people who survive a COVID‐19 critical illness. Design and Methods An exploratory descriptive qualitative interview study with 20 survivors of COVID‐19 critical illness from two community‐based healthcare settings in London, England. Data collection took place September 2020–April 2021, at least 1 month after hospital discharge by telephone or virtual platform. Data were subjected to inductive thematic analysis and mapped deductively to the three core concepts of self‐determination theory: autonomy, competence and relatedness. Findings Three key themes emerged: traumatic experience, human connection and navigating a complex system. Participants described how societal restrictions, fear and communication problems caused by the pandemic added to their trauma and the challenge of recovery. The importance of positive human connections, timely information and support to navigate the system was emphasized. Conclusions Whilst findings to some extent mirror those of other qualitative pre‐pandemic studies, our findings highlight how the uncertainty and instability caused by the pandemic add to the challenge of recovery affecting all core concepts of self‐determination (autonomy, competence, relatedness). Relevance to Clinical Practice Understanding survivors' perspectives of rehabilitation needs following COVID‐19 critical illness is vital to delivery of safe, high‐quality care. To optimize chances of effective recovery, survivors desire a specialist, co‐ordinated and personalized recovery pathway, which reflects humanized care. This should be considered when planning future service provisions.

Background: Patient empowerment is recognized as an important aspect of chronic disease management. There is an increasing expectation that health providers engage patients as active participants in their own self-management. This engagement is crucial to the chronic care model as patients with COPD and their families manage the majority of the care in the community. Understanding what influences empowerment will help health care professionals to better engage in collaborative care planning and decision making that meet the needs of this new generation of health consumers. Aim: The aim of the present study was to identify interventions or approaches that empower patients in the management of COPD. Methods: An integrative review was undertaken following the preferred reporting items for systematic reviews and meta-analyses approach. Papers were included if they 1) provided a definition or conceptualization of empowerment, and 2) reported interventions or approaches fostering empowerment in patients with COPD. Thematic analysis was used to develop conceptual themes on patient empowerment in COPD. These conceptual themes were validated by a panel of specialists in COPD, chronic disease management, self-management, and patient education. Results: Literature searching revealed 183 papers of which 15 studies conceptualized or defined empowerment interventions or approaches to support COPD management. These were grouped into the following five categories: pulmonary rehabilitation, social support, web-based interventions, approaches that support knowledge development, and the approach taken by the health care professional. Conclusion: Pulmonary rehabilitation, knowledge acquisition, social support, telehealth and web-based interfaces, and collaboration with health care professionals empower patients to recognize their own strengths and to manage the impact of the condition. Patients' abilities to direct their own care are additionally influenced by physical debilitation, treatment complexity, economic status, and health literacy. Health care professional-patient relationships must shift to a more collaborative approach that recognizes the patient as an expert in their own condition and facilitates patients to determine their own plan of care and life goals.