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1.
BMC Health Serv Res ; 23(1): 1341, 2023 Dec 02.
Artigo em Inglês | MEDLINE | ID: mdl-38042788

RESUMO

BACKGROUND: In response to concerns about high hospital mortality rates, patient and carer complaints, a Mid Staffordshire NHS Foundation Trust public inquiry was conducted at the request of the UK government. This inquiry found serious failures in the quality of basic care provided and as a consequence, recommended that patients should have more regular visits, organised at predictable times from nursing staff. Intentional rounding, also known as nursing ward rounds, was widely adopted to meet this need. OBJECTIVE: To test, refine or refute eight programme theories to understand what works, for whom, and in what circumstances. SETTING: Six wards (older people and acute wards) in three NHS trusts in England. PARTICIPANTS: Board level and senior nursing managers (N = 17), nursing ward staff (N = 33), allied health and medical professionals (N = 26), patients (N = 34) and relatives (N = 28) participated in an individual, in-depth interview using the realist method. In addition, ward-based nurses (N = 39) were shadowed whilst they conduced intentional rounds (240 rounds in total) and the direct care of patients (188 h of patient care in total) was observed. METHODS: The mixed methods design included: Phase (1) Theory development - A realist synthesis was undertaken to identify any programme theories which were tested, refined and/or refuted, using data from phases 2 and 3; Phase (2) A survey of all English NHS acute Trusts; Phase (3) Six case studies of wards involving realist interviews, shadowing and non-participant observations, analysis of ward outcome and cost data; and Phase (4) Synthesis of findings from phases 1, 2 and 3. RESULTS: The realist synthesis identified eight programme theories of intentional rounding: 'Consistency and comprehensiveness', 'Accountability', 'Visibility of nurses', 'Anticipation', 'Allocated time to care', 'Nurse-patient relationships', 'Multi-disciplinary teamwork and communication' and 'Patient empowerment'. Key findings showed that of the original eight programme theories of intentional rounding, only two partially explained how the intervention worked ('Consistency and comprehensiveness' and 'Accountability'). Of the remaining six programme theories, the evidence for two was inconclusive ('Visibility of nurses' and 'Anticipation') and there was no evidence for four ('Allocated time to care'; 'Nurse-patient relationships'; 'Multi-disciplinary teamwork and communication'; and 'Patient empowerment'). CONCLUSIONS: This first theory-informed evaluation of intentional rounding, demonstrates that the effectiveness of intentional rounding in the English healthcare context is very weak. Furthermore, the evidence collected in this study has challenged and refuted some of the underlying assumptions about how intentional rounding works. This study has demonstrated the crucial role context plays in determining the effectiveness of an intervention and how caution is needed when implementing interventions developed for the health system of one country into another.


Assuntos
Assistência ao Paciente , Medicina Estatal , Humanos , Idoso , Inglaterra , Atenção à Saúde , Hospitais
2.
Health Expect ; 24(1): 77-86, 2021 02.
Artigo em Inglês | MEDLINE | ID: mdl-33238078

RESUMO

BACKGROUND: Physician associates (PAs) are one of many new mid-level health practitioner roles being introduced worldwide. They are a recent innovation in English hospitals. Patient confusion with novel mid-level practitioner titles and roles is well documented, alongside evidence of a positive association between patients' ability to identify practitioners and patient satisfaction. No prior research developed an intervention to introduce PAs or any other new practitioner role to hospital patients. OBJECTIVE: To develop, with patient and public involvement and engagement (PPIE), an intervention for introducing the PA role to hospital patients, and to test feasibility. METHODS: Intervention development was underpinned by an experience-based co-design approach. Workshop participants generated ideas for introducing PAs, subsequently explored in semi-structured interviews with hospital patients (n = 13). Interview findings were used by participants in a second workshop to design the intervention. Feasibility of the intervention was assessed in relation to its acceptability and efficacy using semi-structured interviews with hospital patients (n = 20) and PAs (n = 3). RESULTS: The intervention developed was a patient information leaflet. It was considered feasible to use in the hospital setting, helpful to patients in understanding the PA role and acceptable to both patients and PAs. The intervention was also appreciated by patients for providing reassurance of care and support. CONCLUSIONS: An experience-based co-design approach enabled development of an intervention tailored to patients' experiential preferences. Positive evidence of feasibility and utility is encouraging, supporting future larger-scale testing. PATIENT AND PUBLIC CONTRIBUTION: PPIE representatives were involved in the study design, intervention development and data interpretation.


Assuntos
Pacientes Internados , Médicos , Estudos de Viabilidade , Hospitais , Humanos , Avaliação de Resultados da Assistência ao Paciente
3.
Sociol Health Illn ; 43(4): 1032-1050, 2021 05.
Artigo em Inglês | MEDLINE | ID: mdl-33834517

RESUMO

Over the last three decades, sociomaterial approaches to the study of health care practices have made an important contribution to the sociology of health care. Significant attention has been paid to the role of technology and artefacts in health care and the operation of actor-networks but less space has been given to questions of ontological multiplicity in health care practices. In this paper, we draw upon our study of patient experience data in five acute hospitals in England to illustrate how treating patient experience data as 'singular-multiples' can enable useful insights into patient experience data work in health care organisations. Our data was generated during 12 months of fieldwork at five participating hospitals and included organisational documents, field notes, informal and formal interviews with frontline and managerial staff and patient representatives at the study sites. We use the examples of the Friends and Family Test (FFT) and the National Cancer Patient Experience Survey (NCPES) in England to consider the multiple nature of data as it is enacted in practice and the work data does when coordinated as an entity in the singular. We argue that, and discuss how, the sociomaterial insights we discuss here are relevant to health care quality and improvement research and practice.


Assuntos
Pesquisa sobre Serviços de Saúde , Melhoria de Qualidade , Atenção à Saúde , Humanos , Avaliação de Resultados da Assistência ao Paciente , Qualidade da Assistência à Saúde
4.
Health Expect ; 23(5): 1108-1117, 2020 10.
Artigo em Inglês | MEDLINE | ID: mdl-33045115

RESUMO

BACKGROUND: Local Healthwatch have been operating since 2013 as 'consumer champions' in health and social care in England. There is little evidence about how they operate and the daily practices through which they seek to represent citizen views and influence others. OBJECTIVE: To explore (a) the current organizational arrangements, relationships and impact of local Healthwatch in England, and (b) to what extent do these vary across local Healthwatch organizations. DESIGN: An online survey of all 150 local Healthwatch in England between December 2018 and January 2019. The survey comprised 47 questions and used a combination of closed- and open-response questions. RESULTS: We received responses from 96 local Healthwatch (68% response rate). Most local Healthwatch reported that they are 'independent' organizations that only do Healthwatch-related work (58.3%) and are funded through a contract (79.2%). Budget cuts have affected four-fifths of local Healthwatch (79.3%) since 2013. Three-quarters (74%) of local Healthwatch currently receive funding external to that provided by their local authority for their Healthwatch functions. Most Healthwatch engage with only one CCG (56.3%), one mental health trust (82.3%) and one community health trust (62.5%), though 59.4% engage with more than one hospital trust. Healthwatch respondents overwhelmingly reported impacts that were local in nature. CONCLUSIONS: Geographical and historical factors, the quality and quantity of their relationships with stakeholders, and different funding arrangements all contribute to high variability in the structure and activities of local Healthwatch and to shaping the nature of their work and impact across England.


Assuntos
Apoio Social , Medicina Estatal , Inglaterra , Humanos
5.
Nurse Res ; 20(3): 6-11, 2013 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-23346772

RESUMO

AIM: The aim of this paper is to inform and advise researchers on the practical issues associated with involving stroke patients and their carers in research. BACKGROUND: The involvement of patients and carers in research is increasingly recognised as important, yet researchers are often unclear on how to do this in practice. This is particularly evident in the field of stroke care, where there is limited information available about how to involve stroke patients and their carers in research effectively, or about the difficulties associated with this. DATA SOURCE: Experience of developing a patient and carer advisory group. REVIEW METHODS: This paper reflects on the process the authors undertook when developing a stroke patient and darer advisory group as part of a research study exploring the effect of interprofessional team working on the experiences and outcomes after stroke of patients and carers. DISCUSSION: This paper discusses the challenges and the benefits of deveong a stroke patient and carer and advisory group, and offers advice to other researchers undertaking a similar process. It aims to provide some practical suggestions that may aid researchers wishing to involve stroke patients and carers in their research. CONCLUSION: Stroke patients are likely to be older and have long-term physical disabilities or communication problems that may make their involvement in research more challenging to implement. However, with planning and consideration and the allocation of sufficient time and resources, stroke patients and their carers can be effectively involved, resulting in benefits to the research process and output, and to researchers, patients and carers. IMPLICATIONS FOR PRACTICE/RESEARCH: Pay attention to planning and the practical details of involving stroke patients and their carers in research, ensuring that meetings are arranged in an accessible venue. Use straightforward language in all forms of communication. Listen carefully to their views and perspectives and be prepared to make changes to the study and revise methods if appropriate.


Assuntos
Comitês Consultivos , Pesquisa Biomédica , Cuidadores , Acidente Vascular Cerebral/terapia , Humanos , Acidente Vascular Cerebral/enfermagem , Reino Unido
6.
J Interprof Care ; 26(5): 416-8, 2012 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-22574762

RESUMO

Ensuring that health care teams have a mix of skilled professionals to meet patient need, safely and effectively, is a priority in all health services. The United Kingdom, like a number of other countries, have been exploring the contribution physician assistants, who are well established in the United States of America, can make to health care teams including primary care. This study investigated the employment of physician assistants in English primary care and their contribution through an electronic, self report, survey. Sixteen physician assistants responded, who were working in a variety of types of general practice teams. A range of activities were reported but the greatest proportion of their time was described as seeing patients in booked surgery appointments for same day/urgent appointments. The scope of the survey was limited and questions remain as to patient and professional responses to a new professional group within English primary care.


Assuntos
Equipe de Assistência ao Paciente , Assistentes Médicos/estatística & dados numéricos , Atenção Primária à Saúde , Pesquisas sobre Atenção à Saúde , Humanos , Reino Unido
7.
Artigo em Inglês | MEDLINE | ID: mdl-35329137

RESUMO

Older people living in care homes are at high risk of poor health outcomes and mortality if they contract COVID-19 or other infectious diseases. Measures used to protect residents include social distancing and isolation, although implementation is challenging. This review aimed to assess the social distancing and isolation strategies used by care homes to prevent and control the transmission of COVID-19 and other infectious diseases. Seven electronic databases were searched: Medline, CINAHL, Embase, PsycINFO, HMIC, Social Care Online, and Web of Science Core Collection. Grey literature was searched using MedRxiv, PDQ-Evidence, NICE Evidence Search, LTCCovid19.org and TRIP. Extracted data were synthesised using narrative synthesis and tabulation. 103 papers were included (10 empirical studies, seven literature reviews, and 86 policy documents). Strategies used to prevent and control the transmission of COVID-19 and other infectious diseases included social distancing and isolation of residents and staff, zoning and cohorting of residents, restriction of resident movement/activities, restriction of visitors and restriction of staff working patterns. This review demonstrates a lack of empirical evidence and the limited nature of policy documentation around social distancing and isolation measures in care homes. Evaluative research on these interventions is needed urgently, focusing on the well-being of all residents, particularly those with hearing, vision or cognitive impairments.


Assuntos
COVID-19 , Doenças Transmissíveis , Idoso , COVID-19/epidemiologia , COVID-19/prevenção & controle , Humanos , Distanciamento Físico , Apoio Social
8.
Int J Integr Care ; 21(4): 26, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34899105

RESUMO

INTRODUCTION: Health and social care services in England are moving towards greater integration, yet little is known about how leadership of integrated care teams and systems can be supported and improved. This realist review explores what works about the leadership of integrated care teams and systems, for whom, in what circumstances and why. METHODS: A realist synthesis approach was undertaken in 2020 to explore English language literature on the leadership of integrated care teams and systems, complemented by ongoing stakeholder consultation. RESULTS: Evidence was identified for seven potentially important components of leadership in integrated care teams and systems: 'inspiring intent to work together'; 'creating the conditions'; 'balancing multiple perspectives'; 'working with power'; 'taking a wider view'; 'a commitment to learning and development' and 'clarifying complexity'. DISCUSSION: Research into the leadership of integrated care teams and systems is limited, with ideas often reverting to existing framings of leadership, where teams and organisations are less complex. Research also often focuses on the importance of who the leader is rather than what they do. CONCLUSION: This review has generated new perspectives on the leadership of integrated care teams and systems that can be built upon, developed, and tested further.

9.
BMJ Open ; 11(4): e042556, 2021 04 07.
Artigo em Inglês | MEDLINE | ID: mdl-33827833

RESUMO

OBJECTIVE: To identify, appraise and synthesise evidence of interventions designed to promote family member involvement in adult critical care units; and to develop a working typology of interventions for use by health professionals and family members. DESIGN: Mixed-method systematic review. DATA SOURCES: Bibliographic databases were searched without date restriction up to June 2019: MEDLINE, EMBASE and CINAHL; the Cochrane Central Register of Controlled Trials, Joanna Briggs and Cochrane Libraries. Back issues of leading critical care and patient experience journals were manually searched, as were the reference lists of included studies. All evaluation studies of relevant intervention activities were included; all research designs and outcome measures were eligible. Due to heterogeneity in interventions, designs and outcome measures, the synthesis followed a narrative approach. Service users met with the research team termly. RESULTS: Out of 4962 possible citations, a total of 20 studies were included. The overall evidence base was assessed as moderate to weak. Six categories of interventions were identified: environmental unit changes (n=2), web-based support (n=4), discussion-based support (n=6), multicomponent support (n=4), participation in rounds (n=3) and participation in physical care (n=1). Clinical and methodological heterogeneity across studies hindered meta-analysis, hence a narrative synthesis was pursued. Six main outcomes were identified, grouped under two categories: (i) involvement outcomes: communication (mean difference ranged from 6.39 to 8.83), decision-making (mean difference ranged from -0.8 to 5.85), satisfaction (mean difference ranged from 0.15 to 2.48); and (ii) health outcomes: family trauma (mean difference ranged from -7.12 to 0.9), family well-being (mean difference ranged from -0.7 to -4), patient outcomes (relative risk ranged from 1.27 to 4.91). The findings from the qualitative studies were thematically analysed to identify features of the interventions that participants perceived to influence effectiveness. Synthesised into five overarching categories (practicality, development, interaction, reflexivity and bridging), these can serve as principles to inform the future design and development of more refined family member involvement interventions. CONCLUSIONS: Future interventions should be developed with much closer family member input and designed by considering the key features we identified. We call for future interventions to be multilayered and allow for a greater or lesser level, and different kinds, of involvement for family members. Choice of intervention should be informed by a baseline diagnostic of family members' needs, readiness and preparedness for involvement. PROSPERO REGISTRATION: CRD42018086325.


Assuntos
Cuidados Críticos , Família , Adulto , Comunicação , Pessoal de Saúde , Humanos , Pesquisa Qualitativa
10.
BMJ Open ; 11(8): e050706, 2021 08 04.
Artigo em Inglês | MEDLINE | ID: mdl-34348955

RESUMO

INTRODUCTION: Older people living in residential and nursing care homes often have complex needs and are at high risk of poor health outcomes and mortality, especially if they contract COVID-19. Care homes use infection prevention and control measures such as social distancing and isolating residents to protect them from COVID-19. The care home sector has stated that implementing social distancing and isolation when caring for residents is a significant challenge. This paper presents the protocol of a mixed-methods study to explore and understand the real-life experiences of implementing social distancing and isolation of residents in care homes for older people from the perspective of residents, families/friends and staff working in and with care homes. The study aims to develop a toolkit of resources for health and care delivery now and for future outbreaks of infectious diseases. METHODS AND ANALYSIS: The study will be conducted in three phases. Phase 1 is a rapid review of evidence to collate knowledge on the mechanisms and measures used by care homes and long-term facilities to socially distance and isolate older people or control the spread of other infectious and contagious diseases. The review results will contribute to participant interviews in phase 2 and toolkit development in phase 3. Phase 2 will involve case studies with six care homes in England, involving the conduct of individual interviews with residents, families and friends, and staff, collection of care home policies and protocols related to social distancing and isolation for residents, and routinely collected care home data. A focus group with a purposive sample of external key informants will also be conducted. Phase 3, synthesising findings from phases 1 and 2, will inform the codesign of a toolkit of resources for residents, families/friends and care homes. ETHICS AND DISSEMINATION: The study has been approved by Coventry and Warwick Research Ethics Committee (20/WM/0318). To maximise impact, we will work closely with the Study Committees and the Patient and Public Involvement group to ensure the findings reach key stakeholders, including residents, families/friends, care homes, commissioners and organisations representing care home providers. We will disseminate the study outputs in peer-reviewed and professional journals, at professional conferences and via other knowledge transfer activities with the care home sector, and resident and carer organisations. The toolkit comprising evidence-informed guidance and resources and a mosaic film will be hosted on a project webpage. REGISTRATION DETAILS: This project is funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research Programme (Project reference NIHR132541). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care. PROSPERO REGISTRATION NUMBER: CRD42021226734.


Assuntos
COVID-19 , Idoso , Atenção à Saúde , Humanos , Casas de Saúde , Distanciamento Físico , SARS-CoV-2
11.
BMJ Open ; 10(7): e038591, 2020 07 09.
Artigo em Inglês | MEDLINE | ID: mdl-32647024

RESUMO

INTRODUCTION: As systems of health and social care in England move towards more integrated and collaborative models, leaders will need different skills than their predecessors to enable system leadership, building partnerships and working across organisations and sectors. There is little understanding of what the mechanisms for effective leadership across integrated health and social care systems might be, the contexts that influence good leadership, or the nature of the resulting outcomes. This review aims to identify, refine and test programme theories of leadership of integrated team-based services in health and social care, exploring what works, for whom and in what circumstances. METHODS AND ANALYSIS: This study uses a realist synthesis approach, following RAMESES guidelines, supported by stakeholder consultation. Stage 1 will develop initial programme theories about leadership of integrated health and social care based on a review of the scientific and grey literature and a stakeholder consultation workshop. Stage 2 will involve focused searching of empirical literature, data extraction and synthesis to refine the initial programme theories and identify relationships between identified contexts, mechanisms and outcomes. A second stakeholder event will guide the focus of the review. Stage 3 will further refine and interrogate the theories testing them against substantive theory on leadership of complex systems and through the experiences and expertise of the stakeholder group. ETHICS AND DISSEMINATION: Our study does not require ethics committee approval. This research will contribute to building an in-depth understanding of what aspects of leadership of integrated team-based services work, for whom and in what circumstances. It will identify the professional development needs of leaders and provide recommendations about optimal organisational and interorganisational structures and processes that support effective leadership in integrated health and social care systems. Findings will be disseminated through peer-reviewed journal publications, conference presentations and formal and informal reports. PROSPERO REGISTRATION NUMBER: CRD42018119291.


Assuntos
Liderança , Encaminhamento e Consulta , Inglaterra , Literatura de Revisão como Assunto , Apoio Social
12.
Int J Nurs Stud ; 107: 103580, 2020 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-32380263

RESUMO

BACKGROUND: Compassion is integral to professional nursing practice worldwide and a fundamental value in healthcare. Following serious care failures at a healthcare provider in the United Kingdom, a government commissioned report (the Francis Report) made several recommendations for strengthening compassion in nursing care and consequently 'intentional rounding' was incorporated into nursing practice in the United Kingdom. Intentional rounding is a structured process implemented primarily in the United Kingdom, North America and Australia, whereby nurses conduct 1-2 hourly checks on every patient using a standardised protocol and documentation. OBJECTIVES: To examine the role of intentional rounding in the delivery of compassionate nursing care in England from multiple perspectives. METHODS: This paper reports qualitative findings from one phase of a realist evaluation of intentional rounding which used a mixed-methods approach. Individual, semi-structured interviews were undertaken with 33 nursing staff, 17 senior nurse managers, 34 patients and 28 family carers from three geographically spread case study hospital sites in England. Interviews elicited detailed reflections on the contexts, mechanisms and outcomes of intentional rounding and how it impacted the interviewee and those around them. RESULTS: This study found little evidence that intentional rounding ensures the comfort, safety or dignity of patients or increases the delivery of compassionate care. The systematised approach of intentional rounding emphasises transactional care delivery in the utilisation of prescribed methods of recording or tick boxes rather than relational, individualised patient care. It has the potential to reduce the scope of nursing care to a minimum standard, leading to a focus on the fundamentals as well as the prevention of adverse events. Its documentation is primarily valued by nursing staff as a means of protecting themselves through written proof or 'evidence' of care delivered, rather than as a means of increasing compassionate care. CONCLUSIONS: This large-scale, theoretically-driven study of intentional rounding - the first of its kind - demonstrates that intentional rounding prioritises data collection through tick boxes or a prescriptive and structured recording of care. Thus, intentional rounding neither improves the delivery of compassionate nursing care nor addresses the policy imperative it was intended to target. This study raises questions about the role, contribution and outcomes from intentional rounding and suggests a need for a wider, international debate within the nursing profession about its future use. If an intervention to increase compassionate nursing care is required, it may be better to start afresh, rather than attempting to adapt the system currently implemented.


Assuntos
Empatia , Cuidados de Enfermagem/normas , Estudos de Casos e Controles , Inglaterra , Humanos , Entrevistas como Assunto/métodos , Cuidados de Enfermagem/métodos , Cuidados de Enfermagem/psicologia , Satisfação do Paciente , Pesquisa Qualitativa
13.
BMJ Open ; 10(9): e037557, 2020 09 01.
Artigo em Inglês | MEDLINE | ID: mdl-32873677

RESUMO

OBJECTIVES: To compare the contribution of physician associates to the processes and outcomes of emergency medicine consultations with that of foundation year two doctors-in-training. DESIGN: Mixed-methods study: retrospective chart review using 4 months' anonymised clinical record data of all patients seen by physician associates or foundation year two doctors-in-training in 2016; review of a subsample of 40 records for clinical adequacy; semi-structured interviews with staff and patients; observations of physician associates. SETTING: Three emergency departments in England. PARTICIPANTS: The records of 8816 patients attended by 6 physician associates and 40 foundation year two doctors-in-training; of these n=3197 had the primary outcome recorded (n=1129 physician associates, n=2068 doctor); 14 clinicians and managers and 6 patients or relatives for interview; 5 physician associates for observation. PRIMARY AND SECONDARY OUTCOME MEASURES: The primary outcome was unplanned re-attendance at the same emergency department within 7 days. SECONDARY OUTCOMES: consultation processes, clinical adequacy of care, and staff and patient experience. RESULTS: Re-attendances within 7 days (n=194 (6.1%)) showed no difference between physician associates and foundation year two doctors-in-training (OR 0.87, 95% CI 0.61 to 1.24, p=0.437). If seen by a physician associate, patients were more likely receive an X-ray investigation (OR 2.10, 95% CI 1.72 to 4.24), p<0.001), after adjustment for patient characteristics, triage severity of condition and statistically significant clinician intraclass correlation. Clinical reviewers found almost all patients' charts clinically adequate. Physician associates were evaluated as assessing patients in a similar way to foundation year two doctors-in-training and providing continuity in the team. Patients were positive about the care they had received from a physician associate, but had poor understanding of the role. CONCLUSIONS: Physician associates in emergency departments in England treated patients with a range of conditions safely, and at a similar level to foundation year two doctors-in-training, providing clinical operational efficiencies.


Assuntos
Medicina de Emergência , Médicos , Serviço Hospitalar de Emergência , Inglaterra , Humanos , Encaminhamento e Consulta , Estudos Retrospectivos
14.
Health Expect ; 12(2): 197-208, 2009 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-19236632

RESUMO

OBJECTIVE: This paper aims to support the critical development of user involvement in systematic reviews by explaining some of the theoretical, ethical and practical issues entailed in 'getting ready' for user involvement. BACKGROUND: Relatively few health or social care systematic reviews have actively involved service users. Evidence from other research contexts shows that user involvement can have benefits in terms of improved quality and outcomes, hence there is a need to test out different approaches in order to realize the benefits of user involvement and gain a greater understanding of any negative outcomes. DESIGN: Setting up a service-user reference group for a review of user involvement in nursing, midwifery and health visiting research involved conceptualizing user involvement, developing a representation framework, identifying and targeting service users and creating a sense of mutuality and reciprocity. SETTING AND PARTICIPANTS: Recruitment was undertaken across England by two researchers. Members from 24 national consumer organizations were selected to participate in the review. MAIN VARIABLES STUDIED: Learning was gained about finding ways of navigating consumer networks and organizations, how best to communicate our goals and intentions and how to manage selection and 'rejection' in circumstances where we had stimulated enthusiasm. RESULTS AND CONCLUSIONS: Involving service users helped us to access information, locate the findings in issues that are important to service users and to disseminate findings. User involvement is about relationships in social contexts: decisions made at the early conceptual level of research design affect service users and researchers in complex and personal ways.


Assuntos
Planejamento em Saúde , Participação do Paciente , Inglaterra , Humanos , Medicina Estatal
15.
BMJ Open ; 9(8): e030590, 2019 09 03.
Artigo em Inglês | MEDLINE | ID: mdl-31481376

RESUMO

OBJECTIVES: Older informal carers play an increasingly important role in supporting others with long-term health conditions. This study aimed to explore in depth the perspectives of older carers (70+ years) supporting others with a variety of conditions and disabilities focusing on their thoughts and experiences about when they are unable to continue caring. DESIGN: Qualitative with four focus groups. SETTING: Greater London, UK. PARTICIPANTS: 28 older carers (70+ years) recruited from the voluntary sector participated in this study. Most were women and many were spouses caring for partners with age-related conditions such as dementia, arthritis and visual impairment. Nearly a third were parents of adult children with severe physical or cognitive disabilities. FINDINGS: Thematic analysis identified two main aspects for carers when contemplating the future-when they are unable to care in the short term or long term if they die or can no longer manage. Themes included the following: the impact of age, health conditions and relationships on future planning; anxiety about future care; carers' ambivalence and challenges in broaching the subject; interventions that might help older carers talk about and plan for the future of those they care for. CONCLUSIONS: Services need to be open to talking about this difficult topic. Our findings suggest that frank discussions about when older carers cannot care and having plans in place, whether these are financial or address other practical issues, makes it easier for all concerned. However, this issue is not easily broached and its timing and ways to access this support must be carefully and individually gauged. Future research with more diverse demographic groups is needed to improve understanding of these carers' perspectives. Research is also needed to develop interventions to support older carers to talk about and plan for the future.


Assuntos
Atitude Frente a Morte , Atitude Frente a Saúde , Cuidadores/psicologia , Idoso , Feminino , Grupos Focais , Humanos , Masculino , Pesquisa Qualitativa
16.
Maturitas ; 123: 40-44, 2019 May.
Artigo em Inglês | MEDLINE | ID: mdl-31027676

RESUMO

OBJECTIVES: Older informal carers play a vital, growing role in supporting others with long-term health conditions but their support needs and experiences are poorly understood. The aim of this study was to explore the perceptions of volunteers and professionals of the experiences and support needs of older carers (aged 70+ years). METHODS: Thirty-five volunteers and professionals working with older carers in the voluntary and statutory sectors participated in a series of focus groups in outer London, United Kingdom. Groups were audio recorded, transcribed and subjected to thematic analysis. FINDINGS: Five main themes were identified. These included participants' perceptions of older carers' ambivalence about asking for support, their multiple losses, often restricted lives, social isolation and loneliness and concerns for their loved ones when they can no longer care. Overall, these themes are similar to those reported for adult carers in general but older carers' experiences were regarded as more challenging primarily because of their pride, attitudes to caring and because of their age, their own health was often declining making the physical aspects of caring and leaving their homes more difficult. Concerns about the future are thought to be particularly important for older carers of adult children with disabilities because they expect to be outlived by their children, although similar concerns were voiced by spouses of partners living with dementia. CONCLUSIONS: Professionals and volunteers need to consider these additional challenges for older carers. Support with accessing services, for example from the voluntary sector, is important as is future exploration of how to support older carers in planning for the future care for their loved ones is needed.


Assuntos
Cuidadores/psicologia , Demência/enfermagem , Comportamento de Busca de Ajuda , Pais , Apoio Social , Cônjuges , Adulto , Filhos Adultos , Idoso , Pessoal Técnico de Saúde , Pessoas com Deficiência , Constrangimento , Emoções , Feminino , Grupos Focais , Humanos , Londres , Solidão , Masculino , Pessoa de Meia-Idade , Percepção , Isolamento Social , Reino Unido , Voluntários
17.
Maturitas ; 124: 1-7, 2019 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-31097172

RESUMO

BACKGROUND AND AIMS: Unpaid family carers, or caregivers as they are also known, often play a vital role in supporting others with illness or disability living in the community. Overall numbers of carers are growing but numbers of older carers are increasing particularly rapidly as populations age worldwide. However, little research has focused on this important older group. This qualitative study therefore investigated older carers' experiences and their perceptions of their role. METHODS: Five digitally recorded focus groups with carers from Greater London were undertaken. Recordings were transcribed and analysed thematically. FINDINGS: Forty-four carers aged 70-87 years participated. Most were female and two-thirds were spouses or partners. Overall, the carers thought their experiences were similar to those of younger adult carers and included both satisfying and challenging facets. However, they thought that some of the more negative aspects of the role were more difficult for older carers. Their own declining physical and emotional health and strength were seen as making it harder to access support and maintain social contacts. Loneliness both outside and within relationships featured prominently and was perceived as especially significant for housebound carers and when caring for someone with dementia. Many of these older carers also worried about the future when they might no longer be able to be a carer due to their own ill-health or death. CONCLUSIONS: Older carers find their role challenging and future investigations should focus on identifying means of reducing their isolation and supporting them with planning for the future.


Assuntos
Cuidadores/psicologia , Idoso , Idoso de 80 Anos ou mais , Demência/enfermagem , Feminino , Grupos Focais , Nível de Saúde , Humanos , Relações Interpessoais , Solidão , Masculino , Percepção , Pesquisa Qualitativa , Cônjuges/psicologia
18.
Syst Rev ; 8(1): 185, 2019 Jul 25.
Artigo em Inglês | MEDLINE | ID: mdl-31345261

RESUMO

BACKGROUND: There has been an identified need for greater patient and family member involvement in healthcare. This is particularly relevant in an intensive care unit (ICU), as the family provides a key communicative and practical link between patient and clinician. Family members have been deemed a positive beneficial influence on ICU care and recovery processes, yet they themselves are often emotionally affected after discharge. There has been no standardised evidenced-based approach which explores research on family member involvement and the range and quality of contributions remain unclear. This project will undertake a systematic review to assess the evidence base for interventions designed to promote patient and family member involvement in adult intensive care settings and develop a comprehensive typology of interventions for use by clinicians, patients and carers. METHODS: The following databases will be searched without date restriction: MEDLINE, EMBASE and CINAHL, as well as the Cochrane Central Register of Controlled Trials, Joanna Briggs and Cochrane Libraries. Manual searches of recent back issues of leading ICU and patient experience journals will also be undertaken, as will the reference lists of included studies. Unpublished literature will be sought through grey literature databases, including GreyLit and OpenGrey. All evaluation studies that consider intervention activities to promote patient and family member involvement in adult ICUs will be included; all research designs will be eligible. We will seek to include studies that report on a mixture of relevant outcomes for patients and family members. Abstracts and papers will be independently screened by at least two members of the team to determine their inclusion. Included papers will be assessed for methodological rigour using a standard rating approach, which assesses 'quality of study' and 'quality of information'. Quality assessment will be completed by at least two members of the team. Data on interventions, evaluation methods and outcomes will be collated using a predetermined extraction table. These are likely to be heterogeneous in nature, which will mean that the review will follow a narrative approach to synthesis. DISCUSSION: The review will provide valuable and rigorous insight into the range and quality of interventions available to promote patient and family member involvement in ICU. This is the first step towards addressing the absence of a synthesis of research for this context, and will, in addition, develop a typology of available interventions that will help service users and clinicians make informed decisions about the approaches to patient and family member involvement which they might want to adopt. SYSTEMATIC REVIEW REGISTRATION: PROSPERO (CRD42018086325).


Assuntos
Cuidados Críticos/psicologia , Família/psicologia , Participação do Paciente , Relações Profissional-Família , Adulto , Comunicação , Humanos , Unidades de Terapia Intensiva , Qualidade da Assistência à Saúde , Revisões Sistemáticas como Assunto
19.
BMJ Open ; 9(1): e027012, 2019 01 30.
Artigo em Inglês | MEDLINE | ID: mdl-30700491

RESUMO

OBJECTIVES: To investigate the deployment of physician associates (PAs); the factors supporting and inhibiting their employment and their contribution and impact on patients' experience and outcomes and the organisation of services. DESIGN: Mixed methods within a case study design, using interviews, observations, work diaries and documentary analysis. SETTING: Six acute care hospitals in three regions of England in 2016-2017. PARTICIPANTS: 43 PAs, 77 other health professionals, 28 managers, 28 patients and relatives. RESULTS: A key influencing factor supporting the employment of PAs in all settings was a shortage of doctors. PAs were found to be acceptable, appropriate and safe members of the medical/surgical teams by the majority of doctors, managers and nurses. They were mainly deployed to undertake inpatient ward work in the medical/surgical team during core weekday hours. They were reported to positively contribute to: continuity within their medical/surgical team, patient experience and flow, inducting new junior doctors, supporting the medical/surgical teams' workload, which released doctors for more complex patients and their training. The lack of regulation and attendant lack of authority to prescribe was seen as a problem in many but not all specialties. The contribution of PAs to productivity and patient outcomes was not quantifiable separately from other members of the team and wider service organisation. Patients and relatives described PAs positively but most did not understand who and what a PA was, often mistaking them for doctors. CONCLUSIONS: This study offers new insights concerning the deployment and contribution of PAs in medical and surgical specialties in English hospitals. PAs provided a flexible addition to the secondary care workforce without drawing from existing professions. Their utility in the hospital setting is unlikely to be completely realised without the appropriate level of regulation and authority to prescribe medicines and order ionising radiation within their scope of practice.


Assuntos
Atitude do Pessoal de Saúde , Assistentes Médicos/organização & administração , Papel Profissional , Atenção Secundária à Saúde/organização & administração , Inglaterra , Hospitais , Humanos , Entrevistas como Assunto , Participação do Paciente , Especialização
20.
Int J Nurs Stud ; 45(2): 298-315, 2008 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-17161402

RESUMO

OBJECTIVES: In the UK policy recommends that service users (patients, carers and the public) should be involved in all publicly funded health and social care research. However, little is known about which approaches work best in different research contexts and why. The purpose of this paper is to explain some of the theoretical limitations to current understandings of service user involvement and to provide some suggestions for theory and methods development. This paper draws upon findings from a review of the research 'evidence' and current practice on service user involvement in the design and undertaking of nursing, midwifery and health visiting research. DESIGN: A multi-method review was commissioned by the NHS Service Delivery and Organisation (SDO) Research and Development Programme. The timeframe was April 2004-March 2005. The full report (Ref: SDO/69/2003) and supplementary bibliography are available from: http://www.sdo.lshtm.ac.uk. REVIEW METHODS/DATA: Initial searches of the health and social care literature and consultations with researchers were used to develop a broad definition of the topic area. A service user reference group (26 members) worked with the project team to refine the scope of the review, to set inclusion criteria and develop a framework for the analysis. Systematic searches of the literature were undertaken online and through library stacks (345 relevant documents were identified). Ongoing and recently completed studies that had involved service users were identified through online databases (34 studies) and through a national consultation exercise (17 studies). Selected studies were followed up using telephone interviews (n=11). Members of the service user reference group worked with the research team to advise on key messages for dissemination to different audiences. RESULTS: Information was gained about contextual factors, drivers, concepts, approaches and outcomes of service user involvement in nursing, midwifery and health visiting research, as well as developments in other research fields. Synthesis of this information shows that there are different purposes and domains for user involvement, either as part of researcher-led or user-led research, or as part of a partnership approach. A number of issues were identified as being important for future research. These include: linking different reasons for service user involvement with different outcomes; understanding the relationship between research data and service user involvement, and developing conceptualisations of user involvement that are capable of accommodating complex research relationships. Suggestions for the development of practice include: consideration of diversity, communication, ethical issues, working relationships, finances, education and training. CONCLUSIONS: Because research is undertaken for different reasons and in different contexts, it is not possible to say that involving service users will, or should, always be undertaken in the same way to achieve the same benefits. At a research project level uniqueness of purpose is a defining characteristic and strength of service user involvement.


Assuntos
Enfermagem em Saúde Comunitária , Tocologia , Pesquisa em Enfermagem , Enfermagem , Medicina Baseada em Evidências , Reino Unido
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