Search

Introduction The United Kingdom has achieved reductions in illicit tobacco (IT) market size and share. However, there remains a 17.7% tobacco duty gap, contributing to health inequalities. In January 2024, the UK government announced a new strategy to control IT, along with provision of new funding. Methods A representative cross-sectional survey of adults in England ran in April 2022 to evaluate attitudes and exposure to IT. Tobacco smokers were asked questions about encounters with IT, while all participants answered questions on knowledge and perspectives on IT. Results Of 262 tobacco smokers, 18.3% (95% CI 13.8% to 23.6%) had come across IT in the past year. Men had four times the odds of encountering IT recently than women. Among 1767 adults responding to questions on IT, two-thirds agreed IT harmed children, and more than half agreed IT was linked to organized crime. Younger adults, smokers, and those in lower socioeconomic groups were less likely to agree IT was harmful. Conclusions Exposure to IT, especially among younger males, remains a concern. While most of the public acknowledge its harm, this is not universal, and some population groups are less likely to do so. Implications The study highlights persistent exposure to IT in England, especially among younger males, and varying perceptions of IT harm across socioeconomic groups. Tackling IT requires collaboration between health and enforcement agencies, independent of the tobacco industry's influence. Strategies should include components that shift demand for IT and denormalize its presence in communities, particularly in lower socioeconomic areas with higher smoking prevalence. [ABSTRACT FROM AUTHOR]

Background: People with dementia have complex palliative care needs that are often unmet, including physical and psycho‐social needs. It is essential to empower people with dementia, family carers and professionals to better assess and manage care needs. We aimed to co‐design a palliative dementia care Framework delivered through a digital app to support holistic assessment and decision making for care in the community and care homes—the EMBED‐Care Framework. Methods: A systematic co‐design approach was adopted to develop the EMBED‐Care Framework across three stages: 1) Framework analysis to synthesise data from preceding evidence reviews, large routine clinical data and cohort studies of unmet palliative dementia care need; 2) Co‐design using iterative workshops with people with dementia, family carers and health and social care professionals to construct the components, design of the app and implementation requirements; and 3) User testing to refine the final Framework and app, and strengthen use for clinical practice and methods of evaluation. Results: The Framework was co‐designed for delivery through an app delivered by aTouchAway. It comprised five main components: 1) holistic assessment of palliative care needs using the Integrated Palliative care Outcome Scale‐Dementia (IPOS‐Dem); 2) alert system of IPOS‐Dem scores to highlight unmet needs; 3) IPOS‐Dem scores and alerts enable shared decision making between the practitioner, patient and/or carer to support priority setting and goals of care; 4) evidence‐informed clinical decision support tools automatically linked with identified needs to manage care; and 5) Training package for users incorporating face‐to‐face sessions, clinical champions who received additional face‐to‐face sessions, animated videos and manual covering the main intervention components and email and telephone support from the research team. Conclusions: This is a novel digital palliative dementia care intervention to link holistic assessment with clinical decision support tools that are practical and easy to use but address the complexity of palliative dementia care. The Framework is ready for feasibility testing and pilot studies for people with dementia residing at home or in a care home. Patient or Public Contribution: We were guided by our Patient and Public Involvement (PPI) group consisting of three people with mild dementia, including younger onset dementia, and seven family carers throughout the project. They supported the overall development of the Framework, including planning of workshops, interpreting findings and testing the framework in our PPI meetings. [ABSTRACT FROM AUTHOR]

Background: Many older people from minority ethnic groups experience inequalities towards the end of life, including barriers to accessing palliative care. With levels of international migration increasing, there is a need to understand these differences and consider the needs of minority ethnic groups in healthcare policies. This review aimed to map evidence on how older people from minority ethnic groups access and utilise palliative and end of life care, preferences for palliative and end of life care, experiences of palliative and end of life care, and how this varies between minority ethnic groups in different countries, and with different health conditions. Methods: Scoping review, following Joanna Briggs Institute (JBI) guidance. Searches of eight online databases (MEDLINE, Embase, Web of Science, CINAHL, PsycInfo, Assia, Scopus, and the Cochrane Library) and grey literature were undertaken in 2024. Qualitative sources that focused on older people from minority ethnic groups' and carers' access to and use of palliative and end of life care were included, as well as those focusing on healthcare professionals' experiences. Results: Twenty-three sources were included in the review, the majority of which were interview studies from the USA. Findings reflect a range of preferences, inequalities, facilitators and barriers to accessing palliative and end of life care, with themes relating to: (1) Knowledge of hospice and palliative care, (2) societal and structural issues, (3) language and health literacy, (4) migratory experiences, (5) trust in healthcare services and professionals, (6) religion and hope, and (7) cultural values. Conclusions: This review identified areas for healthcare providers to consider developing more culturally appropriate palliative and end of life care practice, including building trust and improving communication, sharing information, reducing language barriers, addressing stigma, and, if relevant, acknowledging the importance of culture and religion. Further qualitative research from an intersectional perspective, such as geographical location or socio-economic status, rather than race, ethnicity, and culture alone, is needed in more diverse geographical settings and on specific health conditions. [ABSTRACT FROM AUTHOR]

Purpose: To investigate the contributors to self-rated health in people with late-stage Parkinson's disease (PD) and cognitive impairment. Methods: A secondary analysis of baseline data from the international Care of Late-Stage Parkinsonism (CLaSP) cohort study was conducted. Participants with PD and either dementia or mild cognitive impairment or MMSE < 24/30 in the absence of major depression were included if they had completed the EQ-5D-3L assessment (n = 277). Factors associated with self-rated health (EQ-5D-3L Index and Visual Analogue Scale) were investigated through multivariable linear regression. Results: More severe PD (motor and non-motor) was associated with worse self-rated health. The EQ-5D-3L dimensions of Mobility, Self-Care and Usual Activities were almost universally affected; the latter two particularly severely. Being unable to perform usual activities or having moderate to extreme anxiety or depression were significantly associated with EQ-5D-3L Visual Analogue Scale, suggesting these are particularly valued. Worse motor impairment and function and the non-motor symptom domains of mood, perception, sexual function, and miscellaneous (e.g., pain) were associated with worse self-rated health, whereas greater burden of gastrointestinal symptoms was associated with better self-rated health in multivariate analysis. Better self-rated health was associated with recent PD nurse consultation, and higher doses of dopaminergic medication. Conclusion: Improvement of activities of daily living, mood and anxiety should be prioritised in clinical practice, with consideration of perception and sexual function in this population. Recent nurse consultations and higher antiparkinsonian doses are associated with better self-rated health, suggesting there is no room for a therapeutic nihilism in this population of people within a complex phase of PD. [ABSTRACT FROM AUTHOR]

Background In the UK, a large proportion of older adults live in rural/remote locations. More people are dying at home and require care from their families. Little is known about the experiences of family carers of older people in rural/remote areas in the last year of life. Aim To explore the experiences of current and bereaved family carers who support/ed an older person in a rural area in the UK towards the end-of-life. Design Qualitative methodology using semi-structured interviews and reflexive thematic analysis methods. Method Interviews were conducted with family carers of rural/remote-dwelling older people in the last year of life. Participants were recruited through national support services, third sector organisations and social media. Results Interviews were conducted with 20 family carers. Most were female (n  = 17) and aged 52–80 years. Family carers experienced difficulties in accessing health and social care in rural/remote areas due to workforce and skills shortages within their regions. The wider community helped with practical tasks and made carers feel less alone. Community-based services, such as day care, helped to provide respite for carers and promoted meaningful activity and social inclusion for older people. Although internet access was problematic, family carers gained support remotely via social media and telehealth services. Conclusion Family carers of older people in the last year of life in rural/remote areas value support from the wider community. Further work is required to understand how Public Health approaches to palliative care and workforce distribution can support rural/remote carers and older people. [ABSTRACT FROM AUTHOR]

Objective: As populations age globally, there is an increasing prevalence of dementia, with an estimated 153 million living with dementia by 2050. Up to 70% of people with dementia experience dementia‐related psychosis (D‐RP). Antipsychotic medications are associated with many adverse effects in older people. This review aims to evaluate the evidence of non‐pharmacological interventions in managing D‐RP. Method: The search of Medline, EMBASE, Web of Science, CINAHL, PsycINFO, and Cochrane included randomised controlled trials that evaluated non‐pharmacological interventions. Data extraction and assessment of quality were assessed independently by two researchers. Heterogenous interventions were pooled using meta‐analysis. Results: A total of 18 articles (n = 2040 participants) were included and categorised into: sensory‐, activity‐, cognitive‐ and multi‐component‐orientated. Meta‐analyses showed no significant impact in reducing hallucinations or delusions but person‐centred care, cognitive rehabilitation, music therapy, and robot pets showed promise in single studies. Conclusions and Implications: Future interventions should be developed and evaluated with a specific focus on D‐RP as this was not the aim for many of the included articles. [ABSTRACT FROM AUTHOR]

Dummett, Hanks, Künne, and Bobzien have all stated or implied that when Frege wrote 'Über Sinn und Bedeutung', Frege believed that the sense of a sentence-question was not a thought. I present the passage of 'Über Sinn und Bedeutung' which is relevant to the evaluation of that proposition. I then present and evaluate an argument which I assume to be the best argument based on that passage for that proposition. I argue that the argument is likely to be unsound. I also address the question whether Frege believed that sentence-questions could be true or false and discuss what Frege did say and what he should have said about logical-alternative questions. [ABSTRACT FROM AUTHOR]

Objectives: To explore the experiences, acceptability and utility of a decision aid for family carers of people with dementia towards the end of life. Methods: We conducted semi‐structured interviews with a sample of family carers enroled into a 6‐month feasibility study in England, sampling to gain a range of experiences and views, based on relationship to person they cared for (e.g., spouse, adult child), age, gender, and self‐reported use of the decision aid during the feasibility study. Interviews were conducted in March 2021–July 2021 and analysed using reflexive thematic analysis. We used COREQ checklist to report our methods and results. Results: Family carers found the decision aid acceptable, describing it as comprehensive, accessible with relevant information and its presentation enabled good engagement. Experiences of the decision aid covered four main themes which demonstrated the perceived acceptability and utility: 1. A source of support and reassurance; 2. Empowering conversations and confidence; 3. Including the person living with dementia; and 4. Breaking down complexity. Conclusions: An aid focussing on decisions about dementia end of life care supported family carers break down complex and emotive decisions, not only with making decisions in the moment but also in future planning. Patient or Public Contribution: Our three Patient and Public Involvement (PPI) members (all former family carers) were crucial throughout the wider study. PPI supported development of the topic guides, supported trialling the topic guide and interview procedures and finally supported the development of themes as part of the analysis. [ABSTRACT FROM AUTHOR]

Background: The number of people living with diabetes is rising worldwide and a higher prevalence of diabetes has been linked to those experiencing socioeconomic deprivation. Self‐management strategies are vital and known to reduce the risks of long‐term complications amongst people living with diabetes. Lack of knowledge about self‐care activity required to manage diabetes is a key barrier to successful self‐management. Self‐management interventions can be less effective in socioeconomically deprived populations which can increase the risk of exacerbating health inequalities. The purpose of this review is to identify and synthesise qualitative evidence on the barriers and facilitators of self‐management of diabetes amongst people who are socioeconomically disadvantaged. Methods: MEDLINE, EMBASE, AMED, PsycINFO and CINAHL Plus were searched for qualitative studies concerning self‐management of multiple long‐term conditions amongst socioeconomically disadvantaged populations. Relevant papers which focused on diabetes were identified. Data were coded and thematically synthesised using NVivo. Findings: From the search results, 79 qualitative studies were identified after full‐text screening and 26 studies were included in the final thematic analysis. Two overarching analytical themes were identified alongside a set of subthemes: (1) Socioeconomic barriers to diabetes self‐management; healthcare costs, financial costs of healthy eating, cultural influences, living in areas of deprivation, competing priorities and time constraints, health literacy, (2) facilitators of diabetes self‐management; lifestyle and having goals, support from healthcare providers, informal support. Discussion: Self‐management of diabetes is challenging for people experiencing socioeconomic deprivation due to barriers associated with living in areas of deprivation and financial barriers surrounding healthcare, medication and healthy food. Support from healthcare providers can facilitate self‐management, and it is important that people with diabetes have access to interventions that are designed to be inclusive from a cultural perspective as well as affordable. Patient or Public Contribution: A patient advisory group contributed to the research questions and interpretation of the qualitative findings by reflecting on the themes developed. [ABSTRACT FROM AUTHOR]

Background: Globally, it is estimated that one in three adults live with two or more long‐term conditions (multiple long‐term conditions, MLTCs), that require self‐management. People who experience socioeconomic deprivation face significant health inequalities due to a range of interrelated characteristics that lead to a lack of resources and opportunities. Previous research with underserved populations indicate low levels of trust towards primary care providers and potential barriers for developing patient‐healthcare professional relationships. The purpose of this paper is to explore the barriers and facilitators to self‐managing MLTCs, amongst people who experience socioeconomic deprivation. Methods: Semistructured one‐to‐one interviews with adults (n = 28) living in London and Sheffield, United Kingdom with MLTCs who are experiencing socioeconomic deprivation. Participants were recruited through general practices, community channels and social media. Data were analysed in NVivo using reflexive thematic analysis methods. Findings: Four analytical themes were developed: (1) challenges in accessing healthcare services, financial assistance, and cultural awareness; (2) empowerment and disempowerment through technology, including digital exclusion, and use of technology; (3) impact and causes of exclusion on self‐management, including social isolation, area‐based and economic exclusion, and health‐related stigma and (4) adapting self‐management strategies, including cost‐effective, and culturally/lifestyle appropriate strategies. Conclusions: Future health interventions and services need to be developed with consideration of the combined complexities of managing MLTCs while experiencing socioeconomic deprivation. Increased awareness in practitioners and commissioners of the complexities surrounding the lives of people experiencing socioeconomic deprivation, and the need for targeted strategies to promote self‐management of MLTCs are of great importance. Patient or Public Contribution: A patient advisory group contributed to all stages of the study, including providing important feedback on study documents (topic guides and recruitment materials), as well as providing critical insights surrounding the interpretation of interview data. [ABSTRACT FROM AUTHOR]

Background: Advance care planning in dementia includes supporting the person and their family to consider important goals of care. International research reports the importance of psycho-social-spiritual aspects towards end of life. Aim: To develop a multidimensional international palliative care goals model in dementia for use in practice. Design: International Delphi study integrating consensus and evidence from a meta-qualitative study. The Delphi panel rated statements about the model on a 5-point agreement scale. The criteria for consensus were pre-specified. Setting/participants: Seventeen researchers from eight countries developed an initial model, and 169 candidate panellists were invited to the international online Delphi study. Results: Panellists (107; response 63.3%) resided in 33 countries. The model comprised four main care goals: (1) Comfort ensured; (2) Control over function maintained; (3) Identity protected and personhood respected and (4) Coping with grief and loss−person and caregiver supported. The model reflects how needs and care goals change over time with the progression of dementia, concluding with bereavement support. The first version of the model achieved a consensus after which it was slightly refined based on feedback. We did not achieve a consensus on adding a goal of life prolongation, and on use of the model by people with dementia and family themselves. Conclusion: A new palliative care goals model for people with dementia and their families includes relationship aspects for use by professionals and achieved a consensus among a panel with diverse cultural background. The position of life prolongation in relation to palliative care goals needs further research. [ABSTRACT FROM AUTHOR]

Introduction: Shared decision‐making intends to align care provision with individuals' preferences. However, the involvement of people living with dementia in decision‐making about their care varies. We aimed to co‐design the EMBED‐Care Framework, to enhance shared decision‐making between people affected by dementia and practitioners. Methods: A theory and evidence driven co‐design study was conducted, using iterative workshops, informed by a theoretical model of shared decision‐making and the EMBED‐Care Framework (the intervention) for person‐centred holistic palliative dementia care. The intervention incorporates a holistic outcome measure for assessment and review, linked with clinical decision‐support tools to support shared decision‐making. We drew on the Medical Research Council (MRC) guidance for developing and evaluating complex interventions. Participants included people with dementia of any type, current or bereaved family carers and practitioners. We recruited via established dementia groups and research and clinical networks. Data were analysed using reflexive thematic analysis to explore how and when the intervention could enhance communication and shared decision‐making, and the requirements for use, presented as a logic model. Results: Five co‐design workshops were undertaken with participants comprising people affected by dementia (n = 18) and practitioners (n = 36). Three themes were generated, comprising: (1) 'knowing the person and personalisation of care', involving the person with dementia and/or family carer identifying the needs of the person using a holistic assessment. (2) 'engaging and considering the perspectives of all involved in decision‐making' required listening to the person and the family to understand their priorities, and to manage multiple preferences. (3) 'Training and support activities' to use the Framework through use of animated videos to convey information, such as to understand the outcome measure used to assess symptoms. Conclusions: The intervention developed sought to enhance shared decision‐making with individuals affected by dementia and practitioners, through increased shared knowledge of individual priorities and choices for care and treatment. The workshops generated understanding to manage disagreements in determining priorities. Practitioners require face‐to‐face training on the intervention, and on communication to manage sensitive conversations about symptoms, care and treatment with individuals and their family. The findings informed the construction of a logic model to illustrate how the intervention is intended to work. [ABSTRACT FROM AUTHOR]

Background: Cognitive impairment is common in Parkinson's disease and is associated with poorer quality of life and increased caregiver distress, but little qualitative information is available on lived experiences of people with Parkinson's who also have cognitive impairment. Objectives: The aim of this study was to explore the challenges of cognitive impairment in Parkinson's, triangulating the perspectives of people with Parkinson's, caregivers and healthcare professionals. Methods: Semistructured interviews were conducted with 11 people with Parkinson's and cognitive impairment, 10 family caregivers and 27 healthcare professionals, using purposive sampling in the United Kingdom (2019–2021). Cognitive impairment was identified by healthcare professionals and required subjective symptoms. Relevant cognitive diagnoses were recorded. Interviews were audio‐recorded, transcribed and analysed using reflexive thematic analysis. Results: An overarching concept of the compound impact of cognitive and physical decline was developed, with six themes. Four themes describe the experience of living with cognitive impairment in Parkinson's: (1) Challenges in Daily Activities, (2) Psychological Impact and (3) Evolving Communication Difficulties together contributing to (4) Social Shift, encompassing a reduction in wider social activities but intensification of close relationships with increased dependence. A fifth theme (5) Living Well describes positive influences on these experiences, encompassing intrinsic motivation, self‐management strategies and supportive relationships. Furthermore, underlying and shaping the whole experience was the sixth theme: (6) Preconceptions about Cognitive Impairment, describing fear and denial of symptoms and poor understanding of the nature of cognitive impairment in Parkinson's, with differences to other dementia pathologies. Conclusions: Cognitive impairment superimposed on the existing challenges of Parkinson's has a multifaceted impact and makes living with the condition arduous. Increased understanding of the experiences of this group and employing the identified facilitators for living well may be able to improve patient and caregiver experiences. Patient or Public Contribution: Two people with Parkinson's and cognitive impairment and three caregivers contributed to the study. Between them they contributed throughout the entirety of the project, giving input at conceptualisation as well as advice and review of interview questions, participant information leaflets, recruitment, interpretation of findings and summaries of the project. [ABSTRACT FROM AUTHOR]

Background: Acute hospital wards can be difficult places for many people living with dementia. Promoting comfort and wellbeing can be challenging in this environment. There is little evidence‐based support for professionals working on acute care wards on how to respond to distress and maximise comfort and wellbeing among patients living with dementia. Objectives: Our overall aim was to codesign an evidence‐based easy‐to‐use heuristic decision‐support framework, which was acceptable and practical but acknowledges the complex and acute nature of caring for patients with dementia in the hospital. This paper presents the development process and resulting framework. Methods: A codesign study was informed by data from (1) a literature review of the care and management of people living with dementia in acute hospitals; (2) a cohort study of comfort and discomfort in people with dementia in acute hospitals; and (3) interviews with family carers and health care professionals. We synthesised evidence from these data sources and presented to key stakeholders through codesign meetings and workshops to produce our decision‐support framework. Results: The framework consists of a series of flowcharts and operates using a three‐stage process of: (1) assess comfort/discomfort; (2) consider causes of discomfort; and (3) address patient needs to manage the discomfort. Conclusion: Working with key stakeholders, synthesising diverse quantitative and qualitative evidence to build a clinical framework is a feasible approach to help address the needs of patients living with dementia in an acute hospital setting. The result is a framework which is now ready for evaluation and implementation. Patient and Public Contribution: We worked closely with people living with dementia and family carers throughout this study, including the development of the study protocol with input on study development and design, through to inclusion in stakeholder workshops and codesign of the decision support framework. [ABSTRACT FROM AUTHOR]

Introduction: Self-management interventions consist of multiple components to support people in the management of medical, emotional, and behavioural aspects of their condition, and aim to improve quality of life, function, and other outcomes. A systematic review of self-management interventions in Parkinson's showed no conclusive evidence for effectiveness of specific self-management approaches in Parkinson's to date but identified several potentially useful components. Aim: To identify the key required components for self-management in people with Parkinson's by synthesising evidence from a body of primary qualitative evidence and systematic reviews, and to explore which of these key components should be incorporated into trials of self-management in Parkinson's. Method: A mixed-methods synthesis was conducted. We combined data from two primary qualitative studies and a systematic review of qualitative studies that focused on self-management in Parkinson's to identify key intervention components. These were then mapped onto the results of a systematic review of Randomised Controlled Trials (RCTs) using matrices. First, data were extracted from the qualitative studies with people with Parkinson's and healthcare professionals on the key self-management components in this population. Second, a matrix table was created to map the identified Parkinson's specific self-management components against potential effectiveness from published RCTs of self-management interventions. Results: Synthesis of qualitative data identified 15 potential self-management components. These 15 components included components needed to start self-managing (e.g., information, skill acquirement) and components needed to maintain self-managing (e.g., self-motoring, increasing motivation). From 18 RCTs, interventions varied in how many components were included (range 1–10). Trials reporting significant beneficial effects of their intervention included a higher number of components (4 or more self-management components) than trials without significant findings (1–3 self-management components). Conclusion: Fifteen key self-management components were identified that should be incorporated into interventions or programs of self-management in Parkinson's. No current trial has incorporated all aspects, but a higher number of these key components appears to make trials of self-management interventions more likely to be successful. [ABSTRACT FROM AUTHOR]

Background: Artificial intelligence-based large language models, like ChatGPT, have been rapidly assessed for both risks and potential in health-related assessment and learning. However, their applications in public health professional exams have not yet been studied. We evaluated the performance of ChatGPT in part of the Faculty of Public Health's Diplomat exam (DFPH). Methods: ChatGPT was provided with a bank of 119 publicly available DFPH question parts from past papers. Its performance was assessed by two active DFPH examiners. The degree of insight and level of understanding apparently displayed by ChatGPT was also assessed. Results: ChatGPT passed 3 of 4 papers, surpassing the current pass rate. It performed best on questions relating to research methods. Its answers had a high floor. Examiners identified ChatGPT answers with 73.6% accuracy and human answers with 28.6% accuracy. ChatGPT provided a mean of 3.6 unique insights per question and appeared to demonstrate a required level of learning on 71.4% of occasions. Conclusions: Large language models have rapidly increasing potential as a learning tool in public health education. However, their factual fallibility and the difficulty of distinguishing their responses from that of humans pose potential threats to teaching and learning. [ABSTRACT FROM AUTHOR]

Background: The Live Well with Parkinson's Self-Management Toolkit is designed for use in the NHS to support people with Parkinson's, their carers and health professionals in managing motor and non-motor symptoms and promoting well-being. The Toolkit was developed based on theory-based behaviour change and self-management techniques in consultation with people living with Parkinson's and health and social care practitioners. There are digital (e-Toolkit) and paper (manual) versions. Methods: Single-blind two-arm randomised controlled trial RCT of clinical effectiveness and cost-effectiveness of the Toolkit, facilitated by up to six sessions with a trained non-specialist supporter, in improving quality of life. People with Parkinson's will be assessed at baseline, 6 and 12 months. Assessors will be blind to the treatment group. The primary outcome measure is the Parkinson's Disease Questionnaire (PDQ-39, Parkinson's related quality of life) score at 12 months. Secondary outcome measures include the MDS Unified Parkinson's Disease Rating Scale (Part I, II, III, IV), EQ-5D, and a Client Service Receipt Inventory shortened, adapted for Parkinson's. Carer outcomes include the Zarit Carer Burden Inventory and Carer Quality of Life Questionnaire for Parkinsonism. A total of 338 people with Parkinson's, and their carers if appropriate, will be recruited from diverse settings across England. Those with advanced dementia, at end-of-life or with atypical Parkinsonism will be excluded. A parallel mixed methods process evaluation will explore the factors promoting or inhibiting implementation, uptake, use, effectiveness and cost-effectiveness of the Toolkit and sessions. Discussion: If successful, the Live Well with Parkinson's Toolkit could be used as a model for other complex long-term disorders, including dementia. This would bridge existing gaps in the NHS (as shown by the national Parkinson's audit data), by enabling patients and carers to access personalised information, advice and support on symptom management and 'living well' with Parkinson's. Trial registration: ISRCTN92831552. Registered on 26th Oct 2021. [ABSTRACT FROM AUTHOR]

Background Long-term conditions (LTCs) are prevalent in socio-economically deprived populations. Self-management interventions can improve health outcomes, but socio-economically deprived groups have lower participation in them, with potentially lower effectiveness. This review explored whether self-management interventions delivered to people experiencing socio-economic deprivation improve outcomes. Methods We searched databases up to November 2022 for randomized trials. We screened, extracted data and assessed the quality of these studies using Cochrane Risk of Bias 2 (RoB2). We narratively synthesized all studies and performed a meta-analysis on eligible articles. We assessed the certainty of evidence using GRADE for articles included in the meta-analysis. Results The 51 studies included in this review had mixed findings. For the diabetes meta-analysis, there was a statistically significant pooled reduction in haemoglobin A1c (−0.29%). We had moderate certainty in the evidence. Thirty-eight of the study interventions had specific tailoring for socio-economically deprived populations, including adaptions for low literacy and financial incentives. Each intervention had an average of four self-management components. Conclusions Self-management interventions for socio-economically deprived populations show promise, though more evidence is needed. Our review suggests that the number of self-management components may not be important. With the increasing emphasis on self-management, to avoid exacerbating health inequalities, interventions should include tailoring for socio-economically deprived individuals. [ABSTRACT FROM AUTHOR]

Background: Islamic beliefs are associated with decreased contraceptive use compared to other religions, and Muslim women's contraceptive needs are often unmet. Research is needed to provide an in-depth understanding of the complex set of barriers to Muslim women's contraceptive use. Therefore, we aimed to explore Muslim women's awareness and experiences with family planning in Saudi Arabia and investigate barriers to contraceptive use and access to family planning. Methods: A qualitative study using semi-structured interviews with women in a public hospital, in Riyadh, Saudi Arabia, between January and June 2019. Data was analysed using reflexive thematic analysis. Results: Twenty-eight women participated in the study. Women's contraceptive awareness was limited to two methods. Women expressed positive attitudes towards family planning and did not believe it is forbidden in Islam. Barriers to contraception use included lack of knowledge, misconceptions, fear of side effects, family and community and social norms. Many women expressed that they have the right to use contraception, even if their husbands disapprove. Our findings show that healthcare providers rarely offered contraceptive advice, even when requested. Healthcare providers often prescribe oral contraceptives without offering information on other methods available. Conclusion: Our findings suggest that education plays a fundamental role in reproductive autonomy. Men's role in family planning should be encouraged through sharing reproductive responsibility and supporting women's contraceptive choices. Efforts should be directed towards improving women's awareness of different methods of contraception. [ABSTRACT FROM AUTHOR]

Background. Cognitive impairment is common in Parkinson's disease (PD) and associated with lower quality of life. Cognitive impairment in PD manifests differently to other dementia pathologies. Provision of optimal care requires knowledge about the support needs of this population. Methods. Eleven people with PD and cognitive impairment (PwP), 10 family caregivers, and 27 healthcare professionals were purposively sampled from across the United Kingdom. Semistructured interviews were conducted in 2019–2021, audio-recorded, transcribed, and analysed using reflexive thematic analysis. Results. Cognitive impairment in PD conveyed increased complexity for clinical management and healthcare interactions, the latter driven by multifactorial communication difficulties. Techniques that helped included slow, simple, and single messages, avoiding topic switching. Information and emotional support needs were often unmet, particularly for caregivers. Diagnostic pathways were inconsistent and awareness of cognitive impairment in PD was poor, both contributing to underdiagnosis. Many felt that PwP and cognitive impairment fell through service gaps, resulting from disjointed, nonspecific, and underresourced services. Personalised care was advocated through tailoring to individual needs of PwP and caregivers facilitated by flexibility, time and continuity within services, and supporting self-management. Conclusions. This study highlights unmet need for people with this complex condition. Clinicians should adapt their approach and communication techniques for this population and provide tailored information and support to both PwP and caregivers. Services need to be more streamlined and collaborative, providing more time and flexibility. There is a need for wider awareness and deeper understanding of this condition and its differences from other types of dementia. [ABSTRACT FROM AUTHOR]

Introduction: There has been global investment of new ways of working to support workforce pressures, including investment in clinical pharmacists working in primary care by the NHS in the England. Clinical pharmacists are well suited to support older adults who have multiple long-term conditions and are on multiple medications. It is important to establish an evidence base for the role of clinical pharmacists in supporting older adults in primary care, to inform strategic and research priorities. The aim of this scoping review is to identify, map and describe existing research and policy/guidance on the role of clinical pharmacists in primary care supporting older adults, and the models of care they provide. Methods and analysis: A scoping review guided by the Joanne Briggs Institute methodology for scoping reviews, using a three-step strategy. We will search Medline, CINAHL, Scopus, EMBASE, Web of Science, PSYCHInfo, and Cochrane for English language articles, from 2015 –present day. Grey literature will be searched using Grey Matters guidelines, the Index of Grey Literature and Alternative Sources and Resources, and Google keyword searching. References of all included sources will be hand searched to identify further resources. Using the Population, Concept and Context framework for inclusion and exclusion criteria, articles will be independently screened by two reviewers. The inclusion and exclusion criteria will be refined after we become familiar with the search results, following the iterative nature of a scoping review. Data will be extracted using a data extraction tool using Microsoft Excel and presented using a narrative synthesis approach. Ethics and dissemination: Ethical approval is not required for this review. Review findings will be disseminated in academic conferences and used to inform subsequent qualitative research. Findings will be published and shared with relevant local and national organisations. [ABSTRACT FROM AUTHOR]

Clinical reasoning is a vital medical education skill, yet its nuances in undergraduate primary care settings remain debated. This systematic review explores clinical reasoning teaching and learning intricacies within primary care. We redefine clinical reasoning as dynamically assimilating and prioritising synthesised patient, significant other, or healthcare professional information for diagnoses or non-diagnoses. This focused meta-synthesis applies transformative learning theory to primary care clinical reasoning education. A comprehensive analysis of 29 selected studies encompassing various designs made insights into clinical reasoning learning dimensions visible. Primary care placements in varying duration and settings foster diverse instructional methods like bedside teaching, clinical consultations, simulated clinics, virtual case libraries, and more. This review highlights the interplay between disease-oriented and patient-centred orientations in clinical reasoning learning. Transformative learning theory provides an innovative lens, revealing stages of initiation, persistence, time and space, and competence and confidence in students' clinical reasoning evolution. Clinical teachers guide this transformation, adopting roles as fortifiers, connoisseurs, mediators, and monitors. Patient engagement spans passive to active involvement, co-constructing clinical reasoning. The review underscores theoretical underpinnings' significance in shaping clinical reasoning pedagogy, advocating broader diversity. Intentional student guidance amid primary care complexities is vital. Utilising transformative learning, interventions bridging cognitive boundaries enhance meaningful clinical reasoning learning experiences. This study contributes insights for refining pedagogy, encouraging diverse research, and fostering holistic clinical reasoning development. [ABSTRACT FROM AUTHOR]

Background: The cultural sensitivity surrounding sexuality in Islamic communities has an impact on awareness and prevention of sexually transmitted infections (STIs). This study explores Muslim women's knowledge, views, and attitudes towards STIs and people living with HIV/AIDs in Saudi Arabia. Methods: We conducted qualitative semi-structured interviews with Muslim women from Saudi Arabia. Interviews took place in a public hospital in Riyadh, Saudi Arabia in 2019. Data were transcribed, coded, and analysed using a reflexive thematic analysis. Results: Twenty-eight women were interviewed, the majority were college educated and employed. Participants lacked knowledge about STIs, and there were significant misconceptions. The majority of women expressed extremely negative attitudes towards STIs, particularly towards people living with HIV/AIDS. Participants believed that judgemental attitudes and stigmatisation of people with HIV/AIDS were justified if an infection was transmitted through extramarital sex. Men were believed to be the source of STIs, and STIs were viewed as punishment from God for extramarital sexual relations that are forbidden in Islam. Protection against STIs was believed to be achieved by strengthening religious beliefs. Conclusion: Attitudes towards people with STIs, HIV/AIDS in particular, were highly influenced by religious views towards extramarital sex, as well as lack of knowledge and misconceptions. There is an urgent need for accurate information and improved awareness of sexual health including STIs among Muslims in Saudi Arabia. Public health efforts should be directed towards reducing stigma and discrimination against people living with HIV/AIDS in Saudi Arabia and other Islamic communities. [ABSTRACT FROM AUTHOR]

Objective: The proposed scoping review aims to explore international literature on how older people from minority ethnic groups engage with and utilise palliative and end of life care, investigate the barriers and facilitators, and compare how this varies between ethnicities and health conditions. Introduction: Minority ethnic groups make up substantial parts of the populations of many countries around the world. Research has found that there are disparities in access to palliative care and end of life care among minority ethnic groups. Language barriers, cultural values, and socio-demographic factors have been cited as preventing access to quality palliative and end of life care. However, it is unclear how these barriers and inequalities differ across different minority ethnic groups in different countries, and across different health conditions within these groups. Inclusion criteria: The population will be older people of different minority ethnic groups who are receiving palliative or end of life care, family caregivers, and health and social care professionals. The sources of information will include quantitative, qualitative and mixed methods research, and sources that focus on minority ethnic groups' interactions with palliative and end of life care. Methods: A scoping review guided by the Joanna Briggs Institute Manual for Evidence Synthesis. Searches of MEDLINE, Embase, PsycInfo, CINAHL, Scopus, Web of Science, Assia, and the Cochrane Library will be conducted. Citation tracking, reference list checking and grey literature searches will be undertaken. Data will be extracted, charted and summarised descriptively. Implications: This review will highlight the health inequalities present in palliative and end of life care, the research gaps in understudied minority ethnic populations, locations where further study is required, and how barriers and facilitators differ across different ethnic groups and health conditions. The results of this review will be shared with stakeholders and will provide evidence-based recommendations for inclusive palliative and end of life care. [ABSTRACT FROM AUTHOR]

Background: Dementia leads to multiple issues including difficulty in communication and increased need for care and support. Discussions about the future often happen late or never, partly due to reluctance or fear. In a sample of people living with dementia and carers, we explored their views and perceptions of living with the condition and their future. Methods: Semi-structured interviews were conducted in 2018-19 with 11 people living with dementia and six family members in England. Interviews were audio-recorded, transcribed and analysed using reflexive thematic analysis. Results: Findings were explored critically within the theory of social death and three themes were developed: (1) loss of physical and cognitive functions, (2) loss of social identity, and (3) social connectedness. Most participants living with dementia and carers wanted to discuss the present, rather than the future, believing a healthy lifestyle would prevent the condition from worsening. Those with dementia wanted to maintain control of their lives and demonstrated this by illustrating their independence. Care homes were often associated with death and loss of social identity. Participants used a range of metaphors to describe their dementia and the impact on their relationships and social networks. Conclusion: Focusing on maintaining social identity and connectedness as part of living well with dementia may assist professionals in undertaking advance care planning discussions. [ABSTRACT FROM AUTHOR]

Introduction: Using co‐design processes, we aimed to develop an evidence‐based decision guide for family carers and hospital professionals to support decision‐making about eating and drinking for hospital patients with severe dementia. Methods: Following a systematic review, we interviewed people with mild dementia, family carers and hospital professionals in England. We then held co‐design workshops with family carers and hospital professionals. In parallel with the workshops, we used a matrix to synthesize data from all studies and to develop a decision guide prototype. The prototype was iteratively refined through further co‐design workshops and discussions among researchers and Patient and Public Involvement (PPI) representatives. We conducted user testing for final feedback and to finalize the decision guide. Results: Most participants acknowledged the limited benefits of tube feeding and would not use or want it for someone with severe dementia. However, they found decision‐making processes and communication about nutrition and hydration were emotionally demanding and poorly supported in acute hospitals. The co‐design groups developed the aims of the decision guide to support conversations and shared decision‐making processes in acute hospitals, and help people reach evidence‐based decisions. It was designed to clarify decision‐making stages, provide information and elicit the values/preferences of everyone involved. It encouraged person‐centred care, best‐interests decision‐making and multidisciplinary team working. From user testing, family carers and hospital professionals thought the decision guide could help initiate conversations and inform decisions. The final decision guide was disseminated and is being used in clinical practice in England. Conclusion: We used rigorous and transparent processes to co‐design the decision guide with everyone involved. The decision guide may facilitate conversations about nutrition and hydration and help people reach shared decisions that meet the needs and preferences of people with severe dementia. Future evaluation is required to test its real‐world impacts. Patient or Public Contribution: People with mild dementia, family carers and hospital professionals contributed to the design of the decision guide through the interviews and co‐design workshops. PPI members helped design study procedures and materials and prepare this manuscript. [ABSTRACT FROM AUTHOR]

Background: Multiple long-term conditions are rising across all groups but people experiencing socioeconomic deprivation are found to have a higher prevalence. Self-management strategies are a vital part of healthcare for people with long-term conditions and effective strategies are associated with improved health outcomes in a variety of health conditions. The management of multiple long-term conditions are, however, less effective in people experiencing socioeconomic deprivation, leaving them more at risk of health inequalities. The purpose of this review is to identify and synthesise qualitative evidence on the barriers and facilitators of self-management on long-term conditions in those experiencing socioeconomic deprivation. Methods: MEDLINE, EMBASE, AMED, PsycINFO and CINAHL Plus were searched for qualitative studies concerning self-management of multiple long-term conditions among socioeconomically disadvantaged populations. Data were coded and thematically synthesised using NVivo. Findings: From the search results, 79 relevant qualitative studies were identified after the full text screening and 11 studies were included in the final thematic synthesis. Three overarching analytical themes were identified alongside a set of sub-themes: (1) Challenges of having multiple long-term conditions; prioritisation of conditions, impact of multiple long-term conditions on mental health and wellbeing, polypharmacy, (2) Socioeconomic barriers to self-management; financial, health literacy, compounding impact of multiple long-term conditions and socioeconomic deprivation, (3) Facilitators of self-management in people experiencing socioeconomic deprivation; maintaining independence, 'meaningful' activities, support networks. Discussion: Self-management of multiple long-term conditions is challenging for people experiencing socioeconomic deprivation due to barriers around financial constraints and health literacy, which can lead to poor mental health and wellbeing. To support targeted interventions, greater awareness is needed among health professionals of the barriers/challenges of self-management among these populations. [ABSTRACT FROM AUTHOR]

Objectives: To understand the decision‐making processes regarding eating and drinking for hospital patients with severe dementia and use this data to modify a decision‐making model about care for people with severe dementia. Methods: From January to May 2021, qualitative semi‐structured interviews were conducted with 29 family carers and hospital staff in England who cared for people with severe dementia during hospital admissions. Interviews were transcribed verbatim and analysed using codebook thematic analysis. Results: We demonstrated a modified decision‐making model consisting of six stages of the decision‐making process: (i) identify a decision to be made; (ii) exchange information and recognise emotions; (iii) clarify values and preferences of all involved; (iv) consider feasibility of each choice; (v) share preferred choice and make a final decision; and (vi) deliver the decision, monitor outcomes and renegotiation. From this study, decision‐making needed to be shared among all people involved and address holistic needs and personal values of people with dementia and family carers. However, hospital staff often made assumptions about the persons' ability to eat and drink without adequate consultation with family carers. The process was impacted by ward culture, professional practice, and legal framework, which might overlook cultural and personal beliefs of the persons and families. Treatment escalation plans could help inform stepwise treatments, create realistic expectations, and guide future decisions. Conclusions: Our decision‐making model provides clear stages of decision‐making processes and can be used to guide clinical practice and policy around care decisions for eating and drinking, which is often poorly supported. Key points: Most family carers and hospital staff use best‐interest decision‐making, considering the person with dementia's life history, previous wishes and preferences, current behaviours, and overall health conditions.Without adequate discussion with family carers, some staff spoon‐feed or give intravenous fluids to the person with severe dementia because they assume the person had lost their ability to eat by themselves, diminishing their autonomy and functions.In the shared decision‐making process, it is essential to empower the person, family members, and staff. It is important to elicit the person's cultural, professional, and personal values, using a clear and consistent protocol and well‐established trust.Treatment escalation plans could ensure everyone has a shared understanding of care and treatment. [ABSTRACT FROM AUTHOR]

Background When a person with severe dementia is in hospital and has eating and drinking difficulties, communication between the multidisciplinary team and families can be challenging and lead to suboptimal care. Objective To gain in-depth understanding about the experiences, views and needs of family carers and hospital staff, regarding communication and conversations about nutrition and hydration, for hospital patients with severe dementia. Design Qualitative semi-structured interview study. Setting Acute hospital in England. Methods From January to May 2021, semi-structured interviews were conducted with 29 family carers and hospital staff. Interviews were transcribed verbatim and analysed using reflexive thematic methods. Results Four overarching themes were developed: (i) prerequisites to initiating communication about eating and drinking; (ii) communication aiming to develop agreed care plans; (iii) difficulty discussing palliative and end-of-life care; and (iv) needs of information and plans about future eating and drinking difficulties. Families tended to wait for hospital staff to initiate discussions but usually experienced frustration with delays and repeated conversations with different staff. Some staff felt unprepared to manage these conversations and found it challenging to work across the multidisciplinary team. During discharge processes, key information and care plans about eating and drinking were not regularly passed on to people involved to avoid unnecessary readmissions. Conclusions In acute hospitals, family carers and hospital staff can have disjointed communications and conversations about nutrition and hydration for persons with severe dementia. Timely reassurance, ongoing discussions and clear information sharing will support communication between those involved. [ABSTRACT FROM AUTHOR]

Background: Advance care planning in dementia does not always happen. As dementia progresses, decisions are often left for family carers to make with professionals. Aim: To test the feasibility and acceptability of the delivery and use of a decision aid for family carers of people with severe dementia or towards the end-of-life. Design: Feasibility study using a before-after design of a paper-based decision aid with family carers of people with severe dementia or towards the end-of-life. Criteria for whether to progress to full evaluation included achieving: 70% recruitment rate of target of 30 people, and retention of 70% at 6 months. Outcome measures at baseline, 3 and 6 months, included: the Decisional Conflict Scale (DCS), Kessler Psychological Distress Scale (K10), EQ5D-5L and Satisfaction with Care at the End of Life (SWC-EOLD). Participants: Twenty-eight family carers were recruited (93% of target), 26 completed baseline assessment and 20 (71%) of those were followed-up at 6 months. Results: Almost all outcomes changed indicating improvement over 6 months. The DCS and K10 scores decreased indicating less decisional conflict and less psychological distress. The decision aid was acceptable, 25% found it very helpful and 55% a little helpful at 6 months. Conclusion: We met the success criteria demonstrating this study was feasible and acceptable to carers. Future research should test the effectiveness of the decision aid in a full scale evaluation. [ABSTRACT FROM AUTHOR]

Introduction: Parkinson's prevalence is growing, and more people are being impacted by the condition than ever before. Self-management has been proposed as one way to enable people living with the condition to improve or maintain their quality of life and wellbeing whilst living at home. Aim: To explore the views and experiences of how people living with Parkinson's self-manage their condition and identify areas needed to be incorporated into self-management resources or interventions. Method: Twenty people with Parkinson's from across London and Hertfordshire, UK took part in semi-structured interviews on self-management. Interviews were transcribed and analysed using thematic analysis to identify themes. Results: Three main themes were identified: (1) Management of physical symptoms, which included engaging in physical activities, adapting their lifestyles, managing medication and using e-health resources; (2) Management of emotional impact, which involved using a range of cognitive and practical strategies, and seeking talking therapies and medication; and (3) barriers to self-management such as accessing accurate information, experiencing stigma towards their condition which impacted their self-esteem and identity, in turn impacting on their ability to self-manage. Conclusion: Holistic and person-centred self-management programmes or interventions should be developed incorporating components such as medication and emotional support, individualised planning of exercise regimes, and accessible, timely and accurate information. Furthermore, more public health knowledge on Parkinson's is needed to help reduce stigma. [ABSTRACT FROM AUTHOR]

Introduction: In Saudi Arabia, sexual and reproductive health education is not offered in any formal setting, and there is a significant lack of knowledge amongst Saudi women. This study aimed to explore barriers to Saudi women's sexual and reproductive wellbeing. Methods: The study employed qualitative methods using semi-structured interviews with women in Riyadh, Saudi Arabia in 2019. The data were analysed using thematic analysis. Results: Twenty-eight women were interviewed. Sexual and reproductive wellbeing is a complex matter affected by personal, familial, environmental, socio-cultural, religious, and institutional factors. Being unmarried is a significant barrier to accessing sexual and reproductive information and services, with ignorance signifying modesty and purity. Parental control acted as a barrier to acquiring knowledge and accessing essential healthcare services. Schools contribute to lack of awareness, with teachers omitting sexual and reproductive health-related subjects and evading answering questions. Conclusions: There are multiple factors that restrict Saudi women's access to sexual and reproductive health information and services, impacting their overall wellbeing. Research and policy efforts should be directed towards overcoming the complex barriers to Saudi women's sexual and reproductive wellbeing. Public health initiatives are needed to improve youth, parents, and teacher's knowledge, and improve public perceptions towards sexual and reproductive health education. [ABSTRACT FROM AUTHOR]

Introduction: Subnational, supralocal (or "regional") approaches to tobacco control are often central federal nation tobacco control and can be superfluous for very small nations. However, their relevance to countries with weak intermediate tiers of governance are less clear. This study explores expert and policymaker perceptions on the function, form, footprint, and funding of regional tobacco control (RTC) in England.Aims and Methods: One-to-one semistructured interviews (n = 16) and four focus groups (n = 26) exploring knowledge and perceptions of the past, present, and future of RTC in England were conducted with public health leaders, clinicians, tobacco control practitioners, civil servants, and politicians. Interviews were audio-recorded, transcribed verbatim, and analyzed thematically.Results: Participants reported several key functions for RTC, including illicit tobacco control, media campaigns, advocacy, policy development, and network facilitation for local actors. A small minority of participants reported little role for RTC. Broader perceived features of effective RTC included subject expertise, strong regional ties, systems leadership, and a distinctive program of work. Views varied on whether regional programs should be developed nationally or locally, and their optimal footprint. Participants generally agreed stable funding was a prerequisite for success, although there was lesser agreement on funding sources.Conclusions: Pooling resources at the regional level in countries with weak intermediate tiers of governance may increase reach, cost-effectiveness and impact of campaigns, policy interventions, and advocacy, whilst retaining the ability to tailor approaches to regional populations.Implications: There are likely to be greater funding and governance challenges associated with introducing or strengthening RTC in countries with weak intermediate tiers of governance. Despite this, evidence from England shows it is possible to develop RTC approaches reported as effective by key stakeholders. Possible benefits of regional approaches in this context include cost-effective delivery of illicit tobacco control, media campaigns, advocacy, research, policy development, and coordinated support for local action on tobacco. [ABSTRACT FROM AUTHOR]

Introduction: COVID‐19 has disproportionately affected people living with dementia and their carers. Its effects on health and social care systems necessitated a rapid‐response approach to care planning and decision‐making in this population, with reflexivity and responsiveness to changing individual and system needs at its core. Considering this, a decision‐aid to help families of persons with dementia was developed. Objectives: To coproduce with people living with dementia, and the people who care for them, a decision‐aid for family carers of people living with dementia, to support decisions during the COVID‐19 pandemic and beyond. Methods: Semi‐structured interviews were undertaken in 2020 with: (1) staff from two English national end‐of‐life and supportive care organizations; and (2) people living with dementia and family carers. Simultaneously, a rapid review of current evidence on making decisions with older people at the end of life was undertaken. Evidence from these inputs was combined to shape the decision‐aid through a series of workshops with key stakeholders, including our patient and public involvement group, which consisted of a person living with dementia and family carers; a group of clinical and academic experts and a group of policy and charity leads. Results: The rapid review of existing evidence highlighted the need to consider both process and outcome elements of decision‐making and their effects on people living with dementia and their families. The qualitative interviews discussed a wide range of topics, including trust, agency and confusion in making decisions in the context of COVID‐19. The decision‐aid primarily focussed on care moves, legal matters, carer wellbeing and help‐seeking. Conclusions: Combining different sources and forms of evidence was a robust and systematic process that proved efficient and valuable in creating a novel decision‐aid for family carers within the context of COVID‐19. The output from this process is an evidence‐based practical decision‐aid coproduced with people living with dementia, family carers, clinical and academic experts and leading national dementia and palliative care organizations. Patient or Public Contribution: We worked with people living with dementia and family carers and other key stakeholders throughout this study, from study development and design to inclusion in stakeholder workshops and dissemination. [ABSTRACT FROM AUTHOR]

There is no formal sexual and reproductive health (SRH) education currently offered in Saudi Arabia. Lack of knowledge and misconceptions are evident among Saudi women, which can lead to negative sexual and reproductive experiences. The aim of this study is to explore Saudi women's SRH knowledge, perceptions and experiences. Qualitative semi-structured interviews with Saudi women were conducted. Interviews took place in a public hospital in Riyadh, Saudi Arabia. Interviews were conducted in Arabic, recorded and transcribed verbatim, to allow for thematic analysis of the data. The following themes were identified: experience with menarche, deep-rooted negative views towards sex, difficulty discussing SRH topics, knowledge of sex and reproduction, generational gap, sources of SRH information and the role of the mother. A total of 28 women, both married and unmarried, aged 20–50 years were interviewed. A profound lack of SRH knowledge was observed among Saudi women which contributed greatly to negative experiences both in childhood and adulthood. Lack of knowledge about menstruation often caused emotional distress for young girls, and menarche was associated with bad memories and negative emotions. Lack of knowledge about sexual intercourse and the deep-rooted negative views towards sex were linked with physical and psychological issues for women. Women rarely received information from their parents or teachers and preferred the internet for their SRH information. There is a substantial unmet need for SRH education for women in Saudi Arabia. It is our recommendation that SRH education should be tailored to meet Saudi women's unique needs, while understanding specific socio-cultural barriers to SRH education and discussions. Research and policy efforts should be directed towards regulating and producing evidence-based health information on the internet, particularly Arabic language websites. [ABSTRACT FROM AUTHOR]

Objective: To explore the experiences and challenges of people with Parkinson's and their family members living in the community through the lens of their transitions to better understand the phases and changes in their lives. Design: Qualitative study using semi-structured interviews and analysed using codebook thematic analysis. Setting/participants: Purposive sampling was used in primary and secondary healthcare services across Southern England in 2019 to recruit 21 people with Parkinson's (aged between 45–89 years) and 17 family members (13 spouses and 4 adult children, aged between 26–79 years). Results: Participants' descriptions were classified in three main phases of transition from a place of health towards greater dependency on others: 1) 'Being told you are a person with Parkinson's' (early), 2) 'Living with Parkinson's' (mid), and 3) 'Increasing dependency' (decline). Seven sub-themes were identified to describe the transitions within these three phases: phase 1: receiving and accepting a diagnosis; navigating reactions; phase 2: changing social interactions and maintaining sense of self; information: wanting to know but not wanting to know; finding a place within the healthcare system; and 3: changes in roles and relationships; and increasingly dependent. Conclusion: This study has identified points of change and means of supporting key transitions such as diagnosis, changes in social connections, and increased use of secondary healthcare services so that comprehensive, holistic, individualised and well-timed support can be put in place to maintain well-being. [ABSTRACT FROM AUTHOR]

Eating and drinking difficulties, such as loss of appetite and swallowing problems, are common in dementia, but little is known about the experiences of ethnic minority groups who are managing these difficulties at home. The purpose of our study was to explore the meaning of food, the impact of dementia on eating and drinking, and carers' experiences of support. We undertook semi-structured interviews with 17 carers and people with dementia from ethnic minority backgrounds living in England, using thematic analysis to analyse the data. Food/drink had strong links to identity, culture and emotions. Providing culturally familiar foods, celebrating traditional festivals and supporting previous food-related roles promoted reminiscence, which encouraged the people living with dementia to eat and drink, as did social interactions, although these could lead to distress in those with more advanced dementia. Food choices were also influenced by carer strain, generational differences and the impact of health conditions. Despite a strong sense of duty to care for relatives at home, there was low awareness of community support services. The carers expressed a need for culturally tailored support for managing dementia-related eating and drinking difficulties at home. Healthcare professionals must provide contextually relevant advice to carers, being mindful of how cultural backgrounds can affect dietary choices. [ABSTRACT FROM AUTHOR]

Background: Research on the nature of a "good death" has mostly focused on dying with cancer and other life-limiting diseases, but less so on dementia. Conceptualizing common cross-cultural themes regarding a good end of life in dementia will enable developing international care models. Methods: We combined published qualitative studies about end of life with dementia, focus group and individual interviews with the researchers, and video-conferencing and continuous email discussions. The interviews were audio-recorded and transcribed verbatim. The data were analyzed thematically, and the researchers developed common themes referring to their original studies. Results: Fourteen qualitative researchers representing 14 cross-cultural studies covering qualitative data of 121 people with dementia and 292 family caregivers. The researchers and data were from eight countries UK, The Netherlands, Japan, Portugal, Germany, Canada, Brazil, and Ireland. Three focus groups, five individual interviews, and video-conferencing were conducted and feedback on multiple iterations was gained by 190 emails between May 2019 and April 2020 until consensus was achieved. Nine cross-culturally common themes emerged from the discussions and shared interpretation of the data of persons with dementia and family caregivers. Three represent basic needs: "Pain and Symptoms Controlled," "Being Provided Basic Care," and "A Place like Home." Other themes were "Having Preferences Met," "Receiving Respect as a Person," "Care for Caregivers," "Identity Being Preserved," "Being Connected," and "Satisfaction with Life and Spiritual Well-being." "Care for Caregivers" showed the greatest difference in emphasis across cultures. Good relationships were essential in all themes. Conclusions: The common cross-cultural themes comprise a framework underpinned by value placed on personhood and dignity, emphasizing that interdependency through relationships is essential to promote a good end of life with dementia. These themes and valuing the importance of relationships as central to connecting the themes could support care planning and further development of a dementia palliative care model. Trial registration: The Graduate School and Faculty of Medicine Kyoto University (R1924–1). [ABSTRACT FROM AUTHOR]

Background It is estimated 20-70% of those living with a dementia diagnosis experience dementia-related psychosis (D-RP). D-RP results in decreased quality of life, increased carer burden, increased rapid cognitive decline, increased need for primary care support, and earlier care/nursing home admission, all which come at a considerable cost to the NHS. Antipsychotic medications prescribed by primary care services are typically used as treatment but have short-term efficacy and dangerous side effects. Effective management with the use of non-pharmacological interventions could safely improve the quality of life of those living with dementia, as well as reduce burden on primary care services and GPs. Aim To evaluate the effectiveness of non-pharmacological interventions in the management of DRP. Studies that measure the effect of non-pharmacological interventions on patient or caregiver quality of life or determine the cost-effectiveness and safety of non-pharmacological interventions against antipsychotic medications will also be included. Method A global systematic literature review was conducted in Medline, Embase, PsychInfo, CINAHL, Web of Science, and CENTRAL. Included studies were analysed using meta-analysis and narrative synthesis. The protocol is registered with PROSPERO (ID: CRD42022294750). Results Data extraction of 18 included papers revealed 4 interventions to show evidence of efficacy in improving D-RP in older adults. Person-centered care, robot pets, cognitive rehabilitation, and music therapy significantly decreased psychosis in care homes and in participants living at home. These results are discussed, and implications noted. Conclusion Future RCTs should focus on specifically improving D-RP, as this was not the primary aim for many interventions. [ABSTRACT FROM AUTHOR]

Background: Toll-like receptors (TLRs) are key players in innate immunity and modulation of TLR signaling has been demonstrated to profoundly affect proliferation and growth in different types of cancer. However, the role of TLRs in human intrahepatic cholangiocarcinoma (ICC) pathogenesis remains largely unexplored. Aims: We set out to determine if TLRs play any role in ICCs which could potentially make them useful treatment targets. Methods: Tissue microarrays containing samples from 9 human ICCs and normal livers were examined immunohistochemically for TLR4, TLR7, and TLR9 expression. Proliferation of human ICC cell line HuCCT1 was measured by MTS assay following treatment with CpG-ODN (TLR9 agonist), imiquimod (TLR7 agonist), chloroquine (TLR7 and TLR9 inhibitor) and IRS-954 (TLR7 and TLR9 antagonist). The in vivo effects of CQ and IRS-954 on tumor development were also examined in a NOD-SCID mouse xenograft model of human ICC. Results: TLR4 was expressed in all normal human bile duct epithelium but absent in the majority (60%) of ICCs. TLR7 and TLR9 were expressed in 80% of human ICCs. However, TLR7 was absent in all cases of normal human bile duct epithelium and only one was TLR9 positive. HuCCT1 cell proliferation in vitro significantly increased following IMQ or CpG-ODN treatment (P < 0.03 and P < 0.002, respectively) but decreased with CQ (P < 0.02). In the mouse xenograft model there was significant reduction in size of tumors from CQ and IRS-954 treated mice compared to untreated controls. Conclusion: TLR7 and TLR9 should be further explored for their potential as actionable targets in the treatment of ICC. [ABSTRACT FROM AUTHOR]

Introduction: People from ethnic minority backgrounds living with dementia are more likely to be diagnosed later and have less access to health and social care support than their White counterparts in the United Kingdom (UK). Covid‐19 has exacerbated health inequalities and diminished trust from underserved communities in the government and health services. The wider aim of the study was to explore the impact of covid‐19 on Black and South‐Asian people living with dementia and their carers as well as exploring the experiences of dementia care. The present paper specifically explores their views on trust and mistrust using an ecological model. Method: Semi‐structured interviews were conducted with 11 family carers and four people living with dementia from South Asian or Black communities living in the community. Thematic analysis was used to analyse data. Design: An exploratory qualiative design was used. Results: Four main themes were developed exploring trust at the structural, organisational, community and individual level. At the structural level, participants discussed the inequity of Covid‐19, some lack of trust in the UK Government and confusion in its messaging, and the anxiety sometimes leading to curtailment of media usage. At the organisational level, there was some evidence of a perceived lack of person‐centred and culturally sensitive care from healthcare professionals, as well as concerns around care homes as places of safety. At the neighbourhood community level, participants discussed both a distrust as well as a strengthening of relationships and, at the individual level, factors such as knowledge of services, identity, and faith influenced their experience of the pandemic. Conclusions: People living with dementia need support at all levels and this study highlights how the pandemic impacted each level. Ways to improve trust in the Government and health professionals alongside culturally adapted health messaging should be explored. Alongside this, an examination of how cultural values and norms may influence help‐seeking responses to dementia and increase trust in services may be helpful post‐pandemic. Key points: The pandemic impacted people from ethnic minority backgrounds living with dementia and their carers at each level of the socioecological modelA lack of trust in the Government and an increase in anxiety due to the media was reportedThere was a perceived lack of person‐centred and culturally sensitive care from healthcare professionals and concerns around care homes as places of safetyParticipants relationships with their community, knowledge of services, identity, and faith influenced their experience of the pandemic [ABSTRACT FROM AUTHOR]

Background: The COVID-19 pandemic led to many consultations being conducted remotely. Cognitive impairment is recognized as a potential barrier to remote health care interactions and is common and heterogeneous in Parkinson disease. Studies have shown remote consultations in Parkinson disease to be feasible, but little is known about real-life experience, especially for those with cognitive impairment. We explored the experiences and perceptions of remote consultations for people with Parkinson disease and cognitive impairment. Objective: This study aimed to explore the experiences of remote consultations for people with Parkinson disease and cognitive impairment from the perspective of service users and professionals and investigate considerations for future service delivery. Methods: Semistructured interviews were conducted remotely with 11 people with Parkinson disease and cognitive impairment, 10 family caregivers, and 24 health care professionals (HCPs) between 2020 and 2021. Purposive sampling was used. Interviews were audio-recorded, transcribed, and analyzed using reflexive thematic analysis. Results: Overall, four themes were identified: "the nature of remote interactions," "challenges exacerbated by being remote," "expectation versus reality," and "optimizing for the future." Remote consultations were considered as "transactional" and less personal, with difficulties in building rapport, and considered to play a different role from that of in-person consultations. The loss of nonverbal communication and ability of HCPs to sense led to remote consultations being perceived as riskier by all groups. Issues arising from communication and cognitive impairment, balancing the voices of the person with Parkinson disease and the caregiver, and discussions of the future affect this population specifically. Remote consultations were reported to have been more successful than anticipated in all 3 groups. Obstacles were not always as expected; for example, age was less of a barrier than predicted. Video consultations were perceived as being preferable to telephone consultations by many participants, but not accessible to all people with Parkinson disease. With widespread expectation of ongoing remote consultations, potential improvements for these 3 groups and health care services were identified, including practice, preparation, increased awareness of issues, expectation management by HCPs, and more time and flexibility for consultations. Conclusions: Advantages and challenges of remote consultations for this population are identified. Consultations could be improved with increased support, practice, preparation, awareness of issues, and more time and flexibility within services. [ABSTRACT FROM AUTHOR]

Many patients with terminal cancer wish to die at home and general practitioners in the United Kingdom have a critical role in providing this care. However, it has been suggested general practitioners lack confidence in end‐of‐life care. It is important to explore with general practitioners their experience and perspectives including feelings of confidence delivering end‐of‐life care to people with cancer. The aim of this study was to explore general practitioners experiences of providing end‐of‐life care for people with cancer in the home setting and their perceptions of confidence in this role as well as understanding implications this has on policy design. A qualitative study design was employed using semi‐structured interviews and analysed using thematic analysis. Nineteen general practitioners from London were purposively sampled from eight general practices and a primary care university department in 2018–2019, supplemented with snowballing methods. Five main themes were constructed: (a) the subjective nature of defining palliative and end‐of‐life care; (b) importance of communication and managing expectations; (c) complexity in prescribing; (d) challenging nature of delivering end‐of‐life care; (e) the unclear role of primary care in palliative care. General practitioners viewed end‐of‐life care as challenging; specific difficulties surrounded communication and prescribing. These challenges coupled with a poorly defined role created a spread in perceived confidence. Experience and exposure were seen as enabling confidence. Specialist palliative care service expansion had important implications on deskilling of essential competencies and reducing confidence levels in general practitioners. This feeds into a complex cycle of causation, leading to further delegation of care. [ABSTRACT FROM AUTHOR]

The aim of this paper was to understand the needs of family caregivers and professionals supporting people living with dementia with eating and drinking difficulties towards the end of life and the strategies they use to overcome them. A total of 41 semi‐structured interviews with family caregivers (n = 21) and professionals (n = 20) were conducted in London and surrounding areas of England. Interviews were audio‐recorded and transcribed verbatim. Four themes were identified: caregivers accessing and seeking help, perceived priorities of care, professionals' supportiveness and educational role, and strategies. Caregivers often struggle as they are not aware of the eating and drinking difficulties associated with dementia's progression. Care can change over time with families prioritising a person's comfort towards the end of life rather than ensuring a particular level of nutrition. Mutual support is required by both professionals and caregivers to enhance the care of the person living with dementia. Cognitive difficulties are often behind initial eating and drinking challenges in dementia, whereas physical challenges take over towards the later stages. Flexibility and creativity are key to adapting to changing needs. There is a need to raise awareness of the eating and drinking challenges associated with the progression of dementia. Professionals can help caregivers embark on the transition towards focussing on comfort and enjoyment of eating and drinking near the end of life rather than nutrition. This is particularly relevant for those caring for a relative living at home. Caregivers' input is needed to tailor professionals' recommendations. [ABSTRACT FROM AUTHOR]