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1.
Lancet ; 402 Suppl 1: S18, 2023 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-37997057

RESUMO

BACKGROUND: Trauma is an experience (physical or emotional) that is life-threatening, harmful, or out of the ordinary and has lasting effects on mental health and wellbeing. Much of the information about trauma within homeless populations focuses on events in childhood. Using coproduction principles, we aimed to synthesise qualitative evidence exploring the impact of trauma during adulthood homelessness on mental health, including substance use. METHODS: In this qualitative systematic review, we searched ASSIA, CINAHL, Cochrane, EMBASE, MEDLINE, Proquest theses and dissertations, PsychInfo, Scopus, and Web of Science for studies published from inception until Sept 6, 2022, alongside grey literature from relevant websites. Search terms were developed based on the PICO framework. No language, date, or geographical limits were applied. Any qualitative research reporting experiences of trauma and its impact on mental health during homelessness in adults was eligible. We extracted relevant data (eg, methodology, sample characteristics, homelessness, and findings). People with lived experience of homelessness were provided with bespoke training by the lead researcher. They contributed to refining the review aims, screening, coding, and theme development. Quality was assessed using the CASP Qualitative Studies Checklist. FINDINGS: We included 26 qualitative papers, including 876 adults experiencing homelessness between ages 18 and 70 years (448 [51%] women and 428 [49%] men). All papers focused on urban settings. Eight papers were from the USA, five from Canada, four from the UK and Australia, three from Brazil, and one from Ethiopia and Iran. A framework synthesis of these 26 papers identified three preliminary themes. People experiencing homelessness make sense of trauma in three ways: internalised understanding, relationality to others, and with a survival lens. Coping strategies for managing feelings of fear, anxiety, and depression included substance use, self-rationalisation, and strategies to feel safe. Finally, when people experienced repeated trauma, they became either dissociated, and accepted their situation, or resilient, wishing to change their circumstances. INTERPRETATION: Further evidence is needed in rural or coastal regions, where people experiencing homelessness may face greater isolation. Trauma rarely takes place in isolation, and often previous experiences of trauma shape how people experiencing homelessness make sense of trauma and cope with it. Support to address coping with the effects of trauma should focus on ensuring people do not become desensitised and prevent deterioration of mental health and substance use. The strength of this review is its coproduction with people with lived experience. Single person data extraction with secondary checks was a limitation. FUNDING: National Institute for Health and Care Research (NIHR) School for Primary Care Research as part of the Three NIHR Research Schools Mental Health Programme.


Assuntos
Pessoas Mal Alojadas , Transtornos Relacionados ao Uso de Substâncias , Adulto , Feminino , Humanos , Masculino , Saúde Mental , Pesquisa Qualitativa , Problemas Sociais , Transtornos Relacionados ao Uso de Substâncias/epidemiologia
2.
Artigo em Inglês | MEDLINE | ID: mdl-38842487

RESUMO

BACKGROUND: Many hospitals introduced procalcitonin (PCT) testing to help diagnose bacterial coinfection in individuals with COVID-19, and guide antibiotic decision-making during the COVID-19 pandemic in the UK. OBJECTIVES: Evaluating cost-effectiveness of using PCT to guide antibiotic decisions in individuals hospitalized with COVID-19, as part of a wider research programme. METHODS: Retrospective individual-level data on patients hospitalized with COVID-19 were collected from 11 NHS acute hospital Trusts and Health Boards from England and Wales, which varied in their use of baseline PCT testing during the first COVID-19 pandemic wave. A matched analysis (part of a wider analysis reported elsewhere) created groups of patients whose PCT was/was not tested at baseline. A model was created with combined decision tree/Markov phases, parameterized with quality-of-life/unit cost estimates from the literature, and used to estimate costs and quality-adjusted life years (QALYs). Cost-effectiveness was judged at a £20 000/QALY threshold. Uncertainty was characterized using bootstrapping. RESULTS: People who had baseline PCT testing had shorter general ward/ICU stays and spent less time on antibiotics, though with overlap between the groups' 95% CIs. Those with baseline PCT testing accrued more QALYs (8.76 versus 8.62) and lower costs (£9830 versus £10 700). The point estimate was baseline PCT testing being dominant over no baseline testing, though with uncertainty: the probability of cost-effectiveness was 0.579 with a 1 year horizon and 0.872 with a lifetime horizon. CONCLUSIONS: Using PCT to guide antibiotic therapy in individuals hospitalized with COVID-19 is more likely to be cost-effective than not, albeit with uncertainty.

3.
Age Ageing ; 53(4)2024 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-38643354

RESUMO

INTRODUCTION: In the first randomised controlled trial of a dementia training and support intervention in UK homecare agencies, we aimed to assess: acceptability of our co-designed, manualised training, delivered by non-clinical facilitators; outcome completion feasibility; and costs for a future trial. METHODS: This cluster-randomised (2:1) single-blind, feasibility trial involved English homecare agencies. Intervention arm agency staff were offered group videocall sessions: 6 over 3 months, then monthly for 3 months (NIDUS-professional). Family carers (henceforth carers) and clients with dementia (dyads) were offered six to eight complementary, individual intervention sessions (NIDUS-Family). We collected potential trial measures as secondary outcomes remotely at baseline and 6 months: HCW (homecare worker) Work-related Strain Inventory (WRSI), Sense of Competence (SoC); proxy-rated Quality of Life (QOL), Disability Assessment for Dementia scale (DAD), Neuropsychiatric Inventory (NPI) and Homecare Satisfaction (HCS). RESULTS: From December 2021 to September 2022, we met agency (4 intervention, 2 control) and HCWs (n = 62) recruitment targets and recruited 16 carers and 16/60 planned clients. We met a priori progression criteria for adherence (≥4/6 sessions: 29/44 [65.9%,95% confidence interval (CI): 50.1,79.5]), HCW or carer proxy-outcome completion (15/16 (93.8% [69.8,99.8]) and proceeding with adaptation for HCWs outcome completion (46/63 (73.0% [CI: 60.3,83.4]). Delivery of NIDUS-Professional costs was £6,423 (£137 per eligible client). WRSI scores decreased and SoC increased at follow-up, with no significant between-group differences. For intervention arm proxy-rated outcomes, carer-rated QOL increased, HCW-rated was unchanged; carer and HCW-rated NPI decreased; DAD decreased (greater disability) and HCS was unchanged. CONCLUSION: A pragmatic trial is warranted; we will consider using aggregated, agency-level client outcomes, including neuropsychiatric symptoms.


Assuntos
Demência , Qualidade de Vida , Humanos , Demência/diagnóstico , Demência/terapia , Estudos de Viabilidade , Método Simples-Cego , Cuidadores/psicologia
4.
Palliat Med ; 38(4): 447-456, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38634231

RESUMO

BACKGROUND: Delirium is a complex condition, stressful for all involved. Although highly prevalent in palliative care settings, it remains underdiagnosed and associated with poor outcomes. Guideline-adherent delirium care may improve its detection, assessment and management. AIM: To inform a future definitive study that tests whether an implementation strategy designed to improve guideline-adherent delirium care in palliative care settings improves patient outcomes (reduced proportion of in-patient days with delirium). DESIGN: With Patient Involvement members, we conducted a feasibility study to assess the acceptability of and engagement with the implementation strategy by hospice staff (intervention), and whether clinical record data collection of process (e.g. guideline-adherent delirium care) and clinical outcomes (evidence of delirium using a validated chart-based instrument;) pre- and 12-weeks post-implementation of the intervention would be possible. SETTING/PARTICIPANTS: In-patient admissions in three English hospices. RESULTS: Between June 2021 and December 2022, clinical record data were extracted from 300 consecutive admissions. Despite data collection during COVID-19, target clinical record data collection (n = 300) was achieved. Approximately two-thirds of patients had a delirium episode during in-patient stay at both timepoints. A 6% absolute reduction in proportion of delirium days in those with a delirium episode was observed. Post-implementation improvements in guideline-adherent metrics include: clinical delirium diagnosis 15%-28%; delirium risk assessment 0%-16%; screening on admission 7%-35%. CONCLUSIONS: Collection of data on delirium outcomes and guideline-adherence from clinical records is feasible. The signal of patient benefit supports formal evaluation in a large-scale study.


Assuntos
Delírio , Hospitais para Doentes Terminais , Humanos , Estudos de Viabilidade , Cuidados Paliativos , Hospitalização
5.
Health Expect ; 27(3): e14096, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38895996

RESUMO

INTRODUCTION: James Lind Alliance (JLA) Priority Setting Partnerships (PSPs) produce 'Top 10' lists of health and care research priorities through a structured, shared decision-making process with patients or service users, carers and health or care professionals who identify questions that are most important to them. To date, over 150 PSPs in different areas of health and care have published research priorities. Some PSPs share similar priorities, which could be combined, promoted and addressed through collaborative research to increase value and reduce research waste. AIM: The aim of this study was to identify overarching themes common to JLA PSP priorities across different areas of health and care. METHODS: Our analysis included 'Top 10' research priorities produced by UK-based JLA PSPs between 2016 and 2020. The priorities were coded deductively by the Health Research Classification System (HRCS) health category and research activity. We then carried out online workshops with patients, service users and carers to generate new codes not already captured by this framework. Within each code, multistakeholder inductive thematic analysis was used to identify overarching themes, defined as encompassing priorities from three or more PSPs covering two or more health categories. We used codesign methods to produce an interactive tool for end users to navigate the overarching themes. RESULTS: Five hundred and fifteen research priorities from 51 PSPs were included in our analysis. The priorities together encompassed 20 of 21 HRCS health categories, the most common being 'generic health relevance' (22%), 'mental health' (18%) and 'musculoskeletal' (14%). We identified 89 overarching themes and subthemes, which we organised into a hierarchy with seven top-level themes: quality of life, caregivers and families, causes and prevention, screening and diagnosis, treatment and management, services and systems and social influences and impacts. CONCLUSION: There are many overarching themes common to research priorities across multiple areas of health and care. To facilitate new research and research funding, we have developed an interactive tool to help researchers, funders and patients or service users to explore these priority topics. This is freely available to download online. PATIENT OR PUBLIC CONTRIBUTION: Patients or service users and carers were involved throughout the study, including deciding the aims, designing the study, analysing priorities to identify themes, interpreting and reporting the findings.


Assuntos
Prioridades em Saúde , Humanos , Reino Unido , Pesquisa sobre Serviços de Saúde , Tomada de Decisão Compartilhada , Pesquisa
6.
Sociol Health Illn ; 2024 May 08.
Artigo em Inglês | MEDLINE | ID: mdl-38720523

RESUMO

Patient and public involvement and engagement (PPIE) is an increasingly important component of research conduct to enhance processes and potential for impact, yet is rarely critically interrogated. This paper draws on Foucauldian analysis to highlight the disciplinary powers and tensions arising in PPIE. The paper draws on a nested evaluation interview study with three PPIE members and eight academics, who had been involved in an implementation science study focused on palliative care. PPIE members were involved in the whole study and are co-authors of this article. Through shared values and commitments to the study, a team culture of equality was developed. Yet while power was dispersed and taken-up by all team members, in so doing a self-governance approach within the team was developed. The pace and focus of discussions was at times more subjugating than co-production. Identities and positions were porous; the simplistic division of 'academic' and 'PPIE' did not stand up to scrutiny, with an increasing blurring of boundaries as people's experiences and insights changed over time. Continual, subtle, negotiations of roles, inputs and identities were manifest throughout the project. PPIE in research involves subtle, complex and ongoing disciplinary practices enacted by all members of the team.

7.
Age Ageing ; 50(1): 233-241, 2021 01 08.
Artigo em Inglês | MEDLINE | ID: mdl-33156901

RESUMO

BACKGROUND: Providing cancer care and treatment for ageing populations with complicating comorbidities like dementia is a growing global challenge. This study aimed to examine the hospital-based cancer care and treatment challenges and support needs of people with dementia, and identify potential ways to address these. METHODS: A two-site ethnographic study in England involving semi-structured interviews, observations and accompanying conversations, and medical record review. Participants (N = 58) were people with dementia and comorbid cancer (n = 17), informal caregivers (n = 22) and hospital staff (n = 19). Ethnographically informed thematic analysis was conducted. RESULTS: There was an accumulated complexity of living with both illnesses simultaneously. People with dementia and families could feel confused and uninformed due to difficulties understanding, retaining and using cancer information, which impacted their informed treatment decision-making. Dementia increased the complexity and burden of travelling to and navigating unfamiliar hospital environments, frequent lengthy periods of waiting in hospital, and self-managing symptoms and side-effects at home. Oncology staff were often working without the full picture, due to variable documenting of dementia in medical records, dementia training was limited, and time and resource pressures impeded the highly individualised, flexible cancer care required by people with dementia. Supportive family carers were crucial in enabling people with dementia to access, navigate and undergo cancer treatment and care. CONCLUSIONS: Dementia complicates cancer care in a range of ways accumulating across the cancer pathway. Our findings suggest there are several strategies and interventions, which we list here, with potential to improve cancer care and treatment for people with dementia and their families.


Assuntos
Demência , Neoplasias , Antropologia Cultural , Cuidadores , Demência/diagnóstico , Demência/epidemiologia , Demência/terapia , Inglaterra/epidemiologia , Hospitais , Humanos , Neoplasias/diagnóstico , Neoplasias/epidemiologia , Neoplasias/terapia
8.
Palliat Med ; 35(1): 151-160, 2021 01.
Artigo em Inglês | MEDLINE | ID: mdl-32912087

RESUMO

BACKGROUND: Public involvement is increasingly considered a prerequisite for high-quality research. However, involvement in palliative care is impeded by limited evidence on the best approaches for populations affected by life-limiting illness. AIM: To evaluate a strategy for public involvement in palliative care and rehabilitation research, to identify successful approaches and areas for improvement. DESIGN: Co-produced qualitative evaluation using focus groups and interviews. Thematic analysis undertaken by research team comprising public contributors and researchers. SETTING/PARTICIPANTS: Researchers and public members from a palliative care and rehabilitation research institute, UK. RESULTS: Seven public members and 19 researchers participated. Building and maintaining relationships, taking a flexible approach and finding the 'right' people were important for successful public involvement. Relationship building created a safe environment for discussing sensitive topics, although public members felt greater consideration of emotional support was needed. Flexibility supported involvement alongside unpredictable circumstances of chronic and life-limiting illness, and was facilitated by responsive communication, and opportunities for in-person and virtual involvement at a project- and institution-level. However, more opportunities for two-way feedback throughout projects was suggested. Finding the 'right' people was crucial given the diverse population served by palliative care, and participants suggested more care needed to be taken to identify public members with experience relevant to specific projects. CONCLUSION: Within palliative care research, it is important for involvement to focus on building and maintaining relationships, working flexibly, and identifying those with relevant experience. Taking a strategic approach and developing adequate infrastructure and networks can facilitate public involvement within this field.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Comunicação , Grupos Focais , Humanos , Pesquisa Qualitativa
9.
Health Expect ; 23(3): 659-669, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-32233053

RESUMO

BACKGROUND: Patient and public involvement and co-production are widely used, but nevertheless contested concepts in applied health research. There is much confusion about what they are, how they might be undertaken and how they relate to each other. There are distinct challenges and particular gaps in public involvement in alcohol research, especially when the study focus is on health matters other than alcohol dependence. OBJECTIVE: To explore how patient and public involvement and co-production have been interpreted and applied within a multi-disciplinary research programme in the development of a complex intervention on alcohol and medicine use in community pharmacies. DESIGN: The paper presents the authors' critical reflection on a grounded example of how public involvement concepts have been translated into practice in the intervention development phase of a publicly funded research programme, noting its impact on the programme to date. DISCUSSION: Co-production adds another layer of complexity in the development of a complex intervention. The research planning requirements for publicly funded research circumscribe the possibilities for co-production, including impacting on the possibility of stability and continuity over time.


Assuntos
Farmácias , Humanos , Projetos de Pesquisa
10.
Soc Psychiatry Psychiatr Epidemiol ; 55(1): 1-14, 2020 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-31679047

RESUMO

PURPOSE: To build an evidence-informed theoretical model describing how to support people with dementia to live well or for longer at home. METHODS: We searched electronic databases to August 2018 for papers meeting predetermined inclusion criteria in two reviews that informed our model. We scoped literature for theoretical models of how to enable people with dementia to live at home independently, with good life quality or for longer. We systematically reviewed Randomised Controlled Trials (RCTs) reporting psychosocial intervention effects on time lived with dementia at home. Two researchers independently rated risk of bias. We developed our theoretical model through discussions with experts by personal, clinical and academic experiences, informed by this evidence base. RESULTS: Our scoping review included 52 studies. We divided models identified into: values and approaches (relational and recovery models; optimising environment and activities; family carer skills and support); care strategies (family carer-focused; needs and goal-based; self-management); and service models (case management; integrated; consumer-directed). The 11 RCTs included in our systematic review, all judged at low risk of bias, described only two interventions that increased time people with dementia lived in their own homes. These collectively encompassed all these components except for consumer-directed and integrated care. We developed and revised our model, using review evidence and expert consultation to define the final model. CONCLUSIONS: Our theoretical model describes values, care strategies and service models that can be used in the design of interventions to enable people with dementia to live well and for longer at home. TRIAL REGISTRATION: PROSPERO 2018 registration number: CRD42018099693 (scoping review). PROSPERO 2018 registration number: CRD42018099200 (RCT systematic review).


Assuntos
Administração de Caso , Demência/psicologia , Vida Independente/psicologia , Cuidadores/psicologia , Demência/terapia , Assistência Domiciliar , Humanos , Modelos Teóricos , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto
11.
BMC Health Serv Res ; 20(1): 943, 2020 Oct 12.
Artigo em Inglês | MEDLINE | ID: mdl-33046094

RESUMO

BACKGROUND: Alcohol interventions are important to the developing public health role of community pharmacies. The Medicines and Alcohol Consultation (MAC) is a new intervention, co-produced with community pharmacists (CPs) and patients, which involves a CP practice development programme designed to integrate discussion of alcohol within existing NHS medicine review services. We conducted a pilot trial of the MAC and its delivery to investigate all study procedures to inform progression to a definitive trial. METHODS: This cluster pilot RCT was conducted in 10 community pharmacies in Yorkshire, UK, with a CP from each who regularly conducted Medicine Use Review (MUR) and New Medicine Service (NMS) consultations. Randomisation was conducted using a secure remote randomisation service. Intervention CPs (n = 5) were trained to deliver the MAC in MUR/NMS consultations. Control CPs (n = 5) provided these services as usual. Consecutive MUR/NMS patients were asked by CPs to participate, screened for eligibility (consumption of alcohol at least twice per week), and baseline data collected for those eligible. A two-month follow-up telephone interview was conducted. Blinding of CPs was not possible, but patients were blinded to the alcohol focus of the trial. Primary outcomes were total weekly UK units (8 g of ethanol per unit) of alcohol consumption in the week prior to follow-up, and confidence in medications management. Trial procedures were assessed by recruitment, attrition, and follow-up rates. RESULTS: 260 patients were approached by CPs to take part in the trial, 68% (n = 178) were assessed for eligibility and 30% (n = 54) of these patients were eligible. Almost all eligible patients (n = 51; 94%) consented to participate, of whom 92% (n = 47) were followed-up at 2 months; alcohol consumption was lower in the intervention arm and confidence in medication management reduced slightly for both groups. Exploration of recall issues at follow-up showed a high level of agreement between a two-item quantity/frequency measure and 7-day guided recall of alcohol consumption. CONCLUSIONS: The pilot trial demonstrates the feasibility of implementing the MAC in community pharmacy and trial recruitment and data collection procedures. However, decommissioning of MURs means that it is not possible to conduct a definitive trial of the intervention in this service. TRIAL REGISTRATION: ISRCTN57447996.


Assuntos
Consumo de Bebidas Alcoólicas/prevenção & controle , Serviços Comunitários de Farmácia/organização & administração , Revisão de Uso de Medicamentos/organização & administração , Idoso , Idoso de 80 Anos ou mais , Estudos de Viabilidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Encaminhamento e Consulta , Reino Unido
12.
Chron Respir Dis ; 16: 1479973118816448, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30789022

RESUMO

Chronic breathlessness is highly distressing for people with advanced disease and their informal carers, yet health services for this group remain highly heterogeneous. We aimed to generate evidence-based stakeholder-endorsed recommendations for practice, policy and research concerning services for people with advanced disease and chronic breathlessness. We used transparent expert consultation, comprising modified nominal group technique during a stakeholder workshop, and an online consensus survey. Stakeholders, representing multiple specialities and professions, and patient/carers were invited to participate. Thirty-seven participants attended the stakeholder workshop and generated 34 separate recommendations, rated by 74 online survey respondents. Seven recommendations had strong agreement and high levels of consensus. Stakeholders agreed services should be person-centred and flexible, should cut across multiple disciplines and providers and should prioritize breathlessness management in its own right. They advocated for wide geographical coverage and access to expert care, supported through skills-sharing among professionals. They also recommended recognition of informal carers and their role by clinicians and policymakers. Overall, stakeholders' recommendations reflect the need for improved access to person-centred, multi-professional care and support for carers to provide or access breathlessness management interventions. Future research should test the optimal models of care and educational strategies to meet these recommendations.


Assuntos
Dispneia , Prova Pericial/métodos , Acessibilidade aos Serviços de Saúde/organização & administração , Colaboração Intersetorial , Assistência Centrada no Paciente , Doença Crônica , Consenso , Técnica Delphi , Progressão da Doença , Dispneia/epidemiologia , Dispneia/etiologia , Dispneia/fisiopatologia , Dispneia/terapia , Humanos , Assistência Centrada no Paciente/métodos , Assistência Centrada no Paciente/organização & administração , Assistência Centrada no Paciente/normas , Formulação de Políticas , Encaminhamento e Consulta/organização & administração , Índice de Gravidade de Doença , Participação dos Interessados , Reino Unido
13.
Br J Gen Pract ; 74(suppl 1)2024 Jun 20.
Artigo em Inglês | MEDLINE | ID: mdl-38902092

RESUMO

BACKGROUND: Dementia is a leading cause of death globally. However, end-of-life care is often poor or non-existent. People with dementia from ethnic minorities or socioeconomically deprived communities are even less likely to receive good palliative care. Despite this, research into end-of-life care often fails to include people from these populations. AIM: To find out what research is required to improve end-of-life care for everyone with dementia and how to facilitate inclusivity. METHOD: A scoping review of the academic literature (Medline, CINAHL, EMBASE, PsycInfo and Scopus databases) published between Jan 2000 and April 2023 was conducted. Findings were shared with diverse key stakeholders through a series of workshops. Conclusions were subsequently used to provide evidence-based recommendations for inclusive end-of-life care and future research. RESULTS: Themes from the literature were evident in the personal and professional experiences of key stakeholders. Palliative care providers are often ignorant of the needs of those dying in the margins. Support services are scarce and unequal geographically. There is a lack of personalised and culturally appropriate care for those with dementia and their families. Themes from the stakeholder groups included a need for better communication between services, and more investment into dementia as a palliative condition, with avenues created to increase trust and facilitate engagement with services. CONCLUSION: Future research should focus on educational strategies, including how optimal end-of-life care differs for those with dementia compared to other life-limiting conditions, with appropriate models of inclusive, appropriately funded care needed.


Assuntos
Consenso , Demência , Cuidados Paliativos , Assistência Terminal , Humanos , Demência/terapia , Participação dos Interessados
14.
Res Involv Engagem ; 10(1): 19, 2024 Feb 08.
Artigo em Inglês | MEDLINE | ID: mdl-38331966

RESUMO

BACKGROUND: There are marked inequalities in palliative care provision. Research is needed to understand how such inequalities can be addressed, so that everyone living with advanced illness can receive the care they need, when they need it. Research into inequalities in palliative care should be guided by Patient and Public Involvement (PPI) that includes people from diverse backgrounds, who are less likely to receive specialist services. Multi-disciplinary research partnerships, bringing together primary care (the main providers of palliative care to diverse communities) and specialist palliative care, have the potential to work together in new ways to do research to address inequalities and improve palliative care in practice. This report describes a research partnership between primary care and palliative care that aimed to: (1) create opportunities for more inclusive PPI in palliative care research, (2) co-design new resources to support more equitable, diverse and inclusive PPI for palliative care, (3) propose a new framework for inclusive PPI in palliative care research. METHODS: PPI members were recruited via primary care and palliative care research networks from three diverse areas of the UK. A pragmatic, collaborative approach was taken to achieve the partnership aims. Online workshops were carried out to understand barriers to inclusive PPI in palliative care and to co-design resources. Evaluation included a "you said, we did" impact log and a short survey. The approach was informed by good practice principles from previous PPI, and existing theory relating to equity, equality, diversity, and inclusion. RESULTS: In total, 16 PPI members were recruited. Most were White British (n = 10), other ethnicities were Asian (n = 4), Black African (n = 1) and British mixed race (n = 1). The research team co-ordinated communication and activities, leading to honest conversations about barriers to inclusive PPI. Resources were co-designed, including a role description for an Equity, Equality, Diversity and Inclusion Champion, a "jargon buster", an animation and an online recipe book ( http://www.re-equipp.co.uk/ ) to inform future PPI. Learning from the partnership has been collated into a new framework to inform more inclusive PPI for future palliative care research. CONCLUSION: Collaboration and reciprocal learning across a multi-disciplinary primary care and palliative care research partnership led to the development of new approaches and resources. Research team commitment, shared vision, adequate resource, careful planning, relationship building and evaluation should underpin approaches to increase equality, diversity and inclusivity in future PPI for palliative care research.


Research is needed to understand how inequalities in palliative care can be addressed, so that everyone living with advanced illness can receive the care they need. Research into inequalities in palliative care should be guided by Patient and Public Involvement (PPI) that includes people from diverse backgrounds, who are less likely to receive specialist palliative care. Primary care services are grounded in the community they serve and can be the main providers of palliative care, but this is rarely the focus of research. Primary care and palliative care researchers can work together in new ways to do research to address inequalities and improve palliative care in practice. This paper describes the work of the RE-EQUIPP (REducing inEQUalities through Integration of Primary and Palliative Care) Care Partnership. The partnership involved researchers from primary care and palliative care working with people with lived experience of serious illness as patient or carer from three diverse areas of the United Kingdom: (1) London, (2) inner-city Sheffield and (3) Worthing in Sussex, a rural, coastal setting. The project provided opportunity to develop new ways of working and resources for more inclusive and equitable PPI for future palliative care research. Sixteen PPI members from diverse backgrounds and with a range of experience joined the partnership. Workshops were held to understand the barriers to inclusive PPI. New roles and resources were developed, including an Equity, Equality, Diversity and Inclusion Champion role, a "jargon buster", an animation, and an online recipe book to inform future PPI. Learning from the partnership was used to develop a new framework, which is presented to inform inclusive PPI for palliative care research in the future. This outlines the need for research team commitment and shared vision, adequate resource, careful planning, relationship building and evaluation.

15.
Br J Gen Pract ; 74(suppl 1)2024 Jun 20.
Artigo em Inglês | MEDLINE | ID: mdl-38902066

RESUMO

BACKGROUND: UK general practice has been described as being in crisis. A shortage and exodus of GPs is an urgent and challenging problem, attracting significant media attention, widespread public debate, and policy action. AIM: Our review aims to examine which aspects of the healthcare system affect GP workforce sustainability, how, why, and for whom. METHOD: A realist review is an interpretive, theory-driven approach to evidence synthesis, that brings together data from quantitative, qualitative, mixed methods research, and the wider grey literature (e.g., policy documentation). Using this data allows us to examine a diverse range of evidence with a clear focus on understanding factors which support (or hinder) GP workforce sustainability, how these are shaped by contexts, and the mechanisms that underpin them. We identify important individual and system-level contexts that may be amenable to change. RESULTS: We present our emerging findings in the form of a programme theory which explores human connection with patients, colleagues, and across organisations, gaining intellectual enrichment and learning systems comprising socially-situated knowledge. Relational continuity is key across these, supporting GP workforce sustainability. Challenges include standardisation, alienation and professional loneliness, inflexible organisation, and restrictive technologies. CONCLUSION: Our research generates new knowledge about the interdependencies between contexts, mechanisms, and outcomes. The findings can inform strategies and interventions intended to support, facilitate, and assist the GP workforce in delivering equitable and effective patient care. We identify critical gaps in knowledge and prioritise the expectations for scope and nature of future GP work and retention strategies.


Assuntos
Medicina Geral , Clínicos Gerais , Humanos , Clínicos Gerais/provisão & distribuição , Reino Unido , Medicina Geral/organização & administração
16.
Health Technol Assess ; 28(5): 1-266, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-38343084

RESUMO

Background: Up to 30% of children have constipation at some stage in their life. Although often short-lived, in one-third of children it progresses to chronic functional constipation, potentially with overflow incontinence. Optimal management strategies remain unclear. Objective: To determine the most effective interventions, and combinations and sequences of interventions, for childhood chronic functional constipation, and understand how they can best be implemented. Methods: Key stakeholders, comprising two parents of children with chronic functional constipation, two adults who experienced childhood chronic functional constipation and four health professional/continence experts, contributed throughout the research. We conducted pragmatic mixed-method reviews. For all reviews, included studies focused on any interventions/strategies, delivered in any setting, to improve any outcomes in children (0-18 years) with a clinical diagnosis of chronic functional constipation (excluding studies of diagnosis/assessment) included. Dual reviewers applied inclusion criteria and assessed risk of bias. One reviewer extracted data, checked by a second reviewer. Scoping review: We systematically searched electronic databases (including Medical Literature Analysis and Retrieval System Online, Excerpta Medica Database, Cumulative Index to Nursing and Allied Health Literature) (January 2011 to March 2020) and grey literature, including studies (any design) reporting any intervention/strategy. Data were coded, tabulated and mapped. Research quality was not evaluated. Systematic reviews of the evidence of effectiveness: For each different intervention, we included existing systematic reviews judged to be low risk of bias (using the Risk of Bias Assessment Tool for Systematic Reviews), updating any meta-analyses with new randomised controlled trials. Where there was no existing low risk of bias systematic reviews, we included randomised controlled trials and other primary studies. The risk of bias was judged using design-specific tools. Evidence was synthesised narratively, and a process of considered judgement was used to judge certainty in the evidence as high, moderate, low, very low or insufficient evidence. Economic synthesis: Included studies (any design, English-language) detailed intervention-related costs. Studies were categorised as cost-consequence, cost-effectiveness, cost-utility or cost-benefit, and reporting quality evaluated using the consensus health economic criteria checklist. Systematic review of implementation factors: Included studies reported data relating to implementation barriers or facilitators. Using a best-fit framework synthesis approach, factors were synthesised around the consolidated framework for implementation research domains. Results: Stakeholders prioritised outcomes, developed a model which informed evidence synthesis and identified evidence gaps. Scoping review: 651 studies, including 190 randomised controlled trials and 236 primary studies, conservatively reported 48 interventions/intervention combinations. Effectiveness systematic reviews: studies explored service delivery models (n = 15); interventions delivered by families/carers (n = 32), wider children's workforce (n = 21), continence teams (n = 31) and specialist consultant-led teams (n = 42); complementary therapies (n = 15); and psychosocial interventions (n = 4). One intervention (probiotics) had moderate-quality evidence; all others had low to very-low-quality evidence. Thirty-one studies reported evidence relating to cost or resource use; data were insufficient to support generalisable conclusions. One hundred and six studies described implementation barriers and facilitators. Conclusions: Management of childhood chronic functional constipation is complex. The available evidence remains limited, with small, poorly conducted and reported studies. Many evidence gaps were identified. Treatment recommendations within current clinical guidelines remain largely unchanged, but there is a need for research to move away from considering effectiveness of single interventions. Clinical care and future studies must consider the individual characteristics of children. Study registration: This study is registered as PROSPERO CRD42019159008. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme (NIHR award ref: 128470) and is published in full in Health Technology Assessment; Vol. 28, No. 5. See the NIHR Funding and Awards website for further award information.


Between 5% and 30% of children experience constipation at some stage. In one-third of these children, this progresses to chronic functional constipation. Chronic functional constipation affects more children with additional needs. We aimed to find and bring together published information about treatments for chronic functional constipation, to help establish best treatments and treatment combinations. We did not cover assessment or diagnosis of chronic functional constipation. This project was guided by a 'stakeholder group', including parents of children with constipation, people who experienced constipation as children, and healthcare professionals/continence experts. We carried out a 'scoping review' and a series of 'systematic reviews'. Our 'scoping review' provides an overall picture of research about treatments, with 651 studies describing 48 treatments. This helps identify important evidence gaps. 'Systematic reviews' are robust methods of bringing together and interpreting research evidence. Our stakeholder group decided to structure our systematic reviews to reflect who delivered the interventions. We brought together evidence about how well treatments worked when delivered by families/carers (32 studies), the wider children's workforce (e.g. general practitioner, health visitor) (21 studies), continence teams (31 studies) or specialist consultant-led teams (42 studies). We also considered complementary therapies (15 studies) and behavioural strategies (4 studies). Care is affected by what is done and how it is done. We brought together evidence about different models of delivering care (15 studies), barriers and facilitators to implementation of treatments (106 studies) and costs (31 studies). Quality of evidence was mainly low to very low. Despite numerous studies, there was often insufficient information to support generalisable conclusions. Our findings generally agreed with current clinical guidelines. Management of childhood chronic functional constipation should be child-centred, multifaceted and adapted according to the individual child, their needs, the situation in which they live and the health-care setting in which they are looked after. Research is needed to address our identified evidence gaps.


Assuntos
Constipação Intestinal , Pessoal de Saúde , Criança , Adulto , Humanos , Revisões Sistemáticas como Assunto , Constipação Intestinal/terapia
17.
BMJ Open ; 14(5): e075189, 2024 May 21.
Artigo em Inglês | MEDLINE | ID: mdl-38772888

RESUMO

INTRODUCTION: There are not enough general practitioners (GPs) in the UK National Health Service. This problem is worse in areas of the country where poverty and underinvestment in health and social care mean patients experience poorer health compared with wealthier regions. Encouraging more doctors to choose and continue in a GP career is a government priority. This review will examine which aspects of the healthcare system affect GP workforce sustainability, how, why and for whom. METHODS AND ANALYSIS: A realist review is a theory-driven interpretive approach to evidence synthesis, that brings together qualitative, quantitative, mixed-methods research and grey literature. We will use a realist approach to synthesise data from the available published literature to refine an evidence-based programme theory that will identify the important contextual factors and underlying mechanisms that underpin observed outcomes relating to GP workforce sustainability. Our review will follow Pawson's five iterative stages: (1) finding existing theories, (2) searching for evidence, (3) article selection, (4) data extraction and (5) synthesising evidence and drawing conclusions. We will work closely with key stakeholders and embed patient and public involvement throughout the review process to refine the focus of the review and enhance the impact and relevance of our research. ETHICS AND DISSEMINATION: This review does not require formal ethical approval as it draws on secondary data from published articles and grey literature. Findings will be disseminated through multiple channels, including publication in peer-reviewed journals, at national and international conferences, and other digital scholarly communication tools such as video summaries, X and blog posts. PROSPERO REGISTRATION NUMBER: CRD42023395583.


Assuntos
Clínicos Gerais , Humanos , Clínicos Gerais/provisão & distribuição , Reino Unido , Projetos de Pesquisa , Medicina Estatal
18.
Lancet Healthy Longev ; 5(2): e141-e151, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38310894

RESUMO

BACKGROUND: Although national guidelines recommend that everyone with dementia receives personalised post-diagnostic support, few do. Unlike previous interventions that improved personalised outcomes in people with dementia, the NIDUS-Family intervention is fully manualised and deliverable by trained and supervised, non-clinical facilitators. We aimed to investigate the effectiveness of home-based goal setting plus NIDUS-Family in supporting the attainment of personalised goals set by people with dementia and their carers. METHODS: We did a two-arm, single-masked, multi-site, randomised, clinical trial recruiting patient-carer dyads from community settings. We randomly assigned dyads to either home-based goal setting plus NIDUS-Family or goal setting and routine care (control). Randomisation was blocked and stratified by site (2:1; intervention to control), with allocations assigned via a remote web-based system. NIDUS-Family is tailored to goals set by dyads by selecting modules involving behavioural interventions, carer support, psychoeducation, communication and coping skills, enablement, and environmental adaptations. The intervention involved six to eight video-call or telephone sessions (or in person when COVID-19-related restrictions allowed) over 6 months, then telephone follow-ups every 2-3 months for 6 months. The primary outcome was carer-rated goal attainment scaling (GAS) score at 12 months. Analyses were done by intention to treat. This trial is registered with the ISRCTN registry, ISRCTN11425138. FINDINGS: Between April 30, 2020, and May 9, 2021, we assessed 1083 potential dyads for eligibility, 781 (72·1%) of whom were excluded. Of 302 eligible dyads, we randomly assigned 98 (32·4%) to the control group and 204 (67·5%) to the intervention group. The mean age of participants with dementia was 79·9 years (SD 8·2), 169 (56%) were women, and 133 (44%) were men. 247 (82%) dyads completed the primary outcome, which favoured the intervention (mean GAS score at 12 months 58·7 [SD 13·0; n=163] vs 49·0 [14·1; n=84]; adjusted difference in means 10·23 [95% CI 5·75-14·71]; p<0·001). 31 (15·2%) participants in the intervention group and 14 (14·3%) in the control group experienced serious adverse events. INTERPRETATION: To our knowledge, NIDUS-Family is the first readily scalable intervention for people with dementia and their family carers that improves attainment of personalised goals. We therefore recommend that it be implemented in health and care services. FUNDING: UK Alzheimer's Society.


Assuntos
Demência , Masculino , Humanos , Feminino , Idoso , Idoso de 80 Anos ou mais , Demência/terapia , Objetivos , Cuidadores/psicologia , Terapia Comportamental
19.
Br J Gen Pract ; 73(733): e605-e614, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-37130615

RESUMO

BACKGROUND: Antihypertensives reduce the risk of cardiovascular disease but are also associated with harms including acute kidney injury (AKI). Few data exist to guide clinical decision making regarding these risks. AIM: To develop a prediction model estimating the risk of AKI in people potentially indicated for antihypertensive treatment. DESIGN AND SETTING: Observational cohort study using routine primary care data from the Clinical Practice Research Datalink (CPRD) in England. METHOD: People aged ≥40 years, with at least one blood pressure measurement between 130 mmHg and 179 mmHg were included. Outcomes were admission to hospital or death with AKI within 1, 5, and 10 years. The model was derived with data from CPRD GOLD (n = 1 772 618), using a Fine-Gray competing risks approach, with subsequent recalibration using pseudo-values. External validation used data from CPRD Aurum (n = 3 805 322). RESULTS: The mean age of participants was 59.4 years and 52% were female. The final model consisted of 27 predictors and showed good discrimination at 1, 5, and 10 years (C-statistic for 10-year risk 0.821, 95% confidence interval [CI] = 0.818 to 0.823). There was some overprediction at the highest predicted probabilities (ratio of observed to expected event probability for 10-year risk 0.633, 95% CI = 0.621 to 0.645), affecting patients with the highest risk. Most patients (>95%) had a low 1- to 5-year risk of AKI, and at 10 years only 0.1% of the population had a high AKI and low CVD risk. CONCLUSION: This clinical prediction model enables GPs to accurately identify patients at high risk of AKI, which will aid treatment decisions. As the vast majority of patients were at low risk, such a model may provide useful reassurance that most antihypertensive treatment is safe and appropriate while flagging the few for whom this is not the case.


Assuntos
Injúria Renal Aguda , Anti-Hipertensivos , Humanos , Feminino , Pessoa de Meia-Idade , Masculino , Fatores de Risco , Medição de Risco , Anti-Hipertensivos/uso terapêutico , Modelos Estatísticos , Prognóstico , Injúria Renal Aguda/diagnóstico , Injúria Renal Aguda/epidemiologia , Atenção Primária à Saúde
20.
Health Policy ; 132: 104814, 2023 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-37075590

RESUMO

BACKGROUND: Responsibility for health and social care was devolved to Scotland in 1999 with evidence of diverging policy and organisation of care compared to England. This paper provides a comparative overview of major health and social care policies in England and Scotland published between 2011 and 2023 relating to the care of older people. METHODS: We searched United Kingdom (UK) and Scotland government websites for macro-level policy documents between 2011 and 2023 relating to the health and social care of older people (aged 65+). Data were extracted and emergent themes were summarised according to Donabedian's structure-process-outcome model. RESULTS: We reviewed 27 policies in England and 28 in Scotland. Four main policy themes emerged that were common to both countries. Two related to the structure of care: integration of care and adult social care reform. Two related to service delivery/processes of care: prevention and supported self-management and improving mental health care. Cross-cutting themes included person-centred care, addressing health inequalities, promoting use of technology, and improving outcomes. CONCLUSION: Despite differences in the structure of care, including more competition, financial incentivization, and consumer-based care in England compared to Scotland, there are similarities in policy vision around delivery/processes of care (e.g. person-centred care) and performance and patient outcomes. Lack of UK-wide health and social care datasets hinders evaluation of policies and comparison of outcomes between both countries.


Assuntos
Política de Saúde , Política Pública , Adulto , Humanos , Idoso , Reino Unido , Inglaterra , Escócia
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