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INTRODUCTION: Care Opinion is an online feedback platform supporting patients to author stories about their care. It is not known whether authors would be willing to be involved in improving care through research. The aims of this study were to explore the views and preferences of Care Opinion authors about joining an online research community and to pilot new research community functionality. METHODS: Five hundred and nine Care Opinion authors were invited to take part in an online survey in June 2019. Survey items included questions about participants' willingness to take part in research and their preferences for supporting processes. Data were analysed descriptively. Authors were invited to consent to join a research community and were asked to participate in three pilot studies. RESULTS: One hundred and sixty-three people consented to take part in the survey (32%). Participants indicated they would like to know the time commitment to the project (146, 90%), details about the organization carrying out the research (124, 76%) and safeguarding information (124, 76%). Over half indicated that they did not know how to get involved in healthcare research (87, 53%). Subsequently, 667 authors were invited to join the research community, 183 (27%) accepted, and three studies were matched to their expressed preferences for project attributes or organization type. CONCLUSION: Many people who leave online feedback about their experiences of healthcare are also willing to join a research community via that platform. They have strong preferences for supporting University and NHS research. Eligibility and acceptance rates to join pilot research studies varied. Further work is needed to grow the research community, increase its diversity, and create relevant and varied opportunities to support research. PATIENT OR PUBLIC CONTRIBUTION: Four members of the Safety In Numbers patient and public involvement and engagement (PPIE) group advised about survey development.
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Investigación sobre Servicios de Salud , Participación del Paciente , Humanos , Retroalimentación , Encuestas y Cuestionarios , Instituciones de SaludRESUMEN
INTRODUCTION: Healthcare system resilience is a conceptual approach that seeks to explore how health services adapt and respond to variability in demand and resources. As has been witnessed since the beginning of the COVID-19 pandemic, healthcare services have undergone many reconfigurations. One understudied aspect of how the 'system' is able to adapt and respond is the contribution of key stakeholders-patients and families, and in the context of the pandemic, the general public as a whole. This study aimed to understand what people were doing during the first wave of the pandemic to protect the safety of their health, and the health of others from COVID-19, and the resilience of the healthcare system. METHODS: Social media (Twitter) was used as a method of recruitment due to its ability for social reach. Twenty-one participants took part in 57 semistructured interviews over three time points from June to September 2020. The included an initial interview and invitation to two follow-up interviews after 3 and 6 weeks. Interviews were conducted virtually using Zoom-an encrypted secure video conferencing software. A reflexive thematic analysis approach to analysis was used. RESULTS: Three themes, each with its own subthemes were identified in the analysis: (1) A 'new safety normal'; (2) Existing vulnerabilities and heightened safety and (3) Are we all in this together? CONCLUSION: This study found that the public had a role in supporting the resilience of healthcare services and systems during the first wave of the pandemic by adapting their behaviour to protect themselves and others, and to avoid overwhelming the National Health Service. People who had existing vulnerabilities were more likely to experience safety gaps in their care, and be required to step in to support their safety, despite it being more difficult for them to do so. It may be that the most vulnerable were previously required to do this extra work to support the safety of their care and that the pandemic has just illuminated this issue. Future research should explore existing vulnerabilities and inequalities, and the heightened safety consequences created by the pandemic. PATIENT AND PUBLIC CONTRIBUTION: The National Institute for Health Research (NIHR) Yorkshire and Humber Patient Safety Translational Research Centre (NIHR Yorkshire and Humber PSTRC), Patient and Public Involvement and Engagement Research Fellow and NIHR Yorkshire and Humber PSTRC Patient Involvement in Patient Safety theme lay leader are involved in the preparation of a lay version of the findings within this manuscript.
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COVID-19 , Pandemias , Humanos , Medicina Estatal , Instituciones de Salud , Participación del PacienteRESUMEN
INTRODUCTION: Complex intervention development has been described as the 'Cinderella' black box in health services research. Greater transparency in the intervention development process is urgently needed to help reduce research waste. METHODS: We applied a new consensus-based framework for complex intervention development to our programme of research, in which we developed an intervention to improve the safety and experience of care transitions for older people. Through this process, we aimed to reflect on the framework's utility for intervention development and identify any important gaps within it to support its continued development. FINDINGS: The framework was a useful tool for transparent reporting of the process of complex intervention development. We identified potential 'action' gaps in the framework including 'consolidation of evidence' and 'development of principles' that could bracket and steer decision-making in the process. CONCLUSIONS: We consider that the level of transparency demonstrated in this report, aided through use of the framework, is essential in the quest for reducing research waste. PATIENT OR PUBLIC CONTRIBUTION: We have involved our dedicated patient and public involvement group in all work packages of this programme of research. Specifically, they attended and contributed to co-design workshops and contributed to finalizing the intervention for the pilot evaluation. Staff also participated by attending co-design workshops, helping us to prioritize content ideas for the intervention and supporting the development of intervention components outside of the workshops.
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Investigación sobre Servicios de Salud , Transferencia de Pacientes , Humanos , AncianoRESUMEN
Healthcare staff are encouraged to use feedback from their patients to inform service and quality improvement. Receiving patient feedback via online channels is a relatively new phenomenon that has rarely been conceptualised. Further, the implications of a wide, varied and unknown(able) audience being able to view and interact with online patient feedback are yet to be understood. We applied a theoretical lens of dramaturgy to a large ethnographic dataset, collected across three NHS Trusts during 2019/2020. We found that organisations demonstrated varying levels of 'preparedness to perform' online, from invisibility through to engaging in public conversation with patients within a wider mission for transparency. Restrictive 'cast lists' of staff able to respond to patients was the hallmark of one organisation, whereas another devolved responding responsibility amongst a wide array of multidisciplinary staff. The visibility of patient-staff interactions had the potential to be culturally disruptive, dichotomously invoking either apprehensions of reputational threat or providing windows of opportunity. We surmise that a transparent and conversational feedback response frontstage aligns with the ability to better prioritise backstage improvement. Legitimising the autonomous frontstage activity of diverse staff groups may help shift organisational culture, and gradually ripple outwards a shared responsibility for transparent improvement.
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Atención a la Salud , Hospitales , Humanos , Retroalimentación , Mejoramiento de la Calidad , Cultura Organizacional , Medicina EstatalRESUMEN
BACKGROUND: Failures in care for people with learning disabilities have been repeatedly highlighted and remain an international issue, exemplified by a disparity in premature death due to poor quality and unsafe care. This needs urgent attention. Therefore, the aim of the study was to understand the care experiences of people with learning disabilities, and explore the potential patient safety issues they, their carers and families raised. METHODS: Two data sources exploring the lived experience of care for people with learning disabilities were synthesised using an integrative approach, and explored using reflexive thematic analysis. This comprised two focus groups with a total of 13 people with learning disabilities and supportive staff, and 377 narratives posted publicly via the feedback platform Care Opinion. RESULTS: The qualitative exploration highlighted three key themes. Firstly, health and social care systems operated with varying levels of rigidity. This contributed to an inability to effectively cater to; complex and individualised care needs, written and verbal communication needs and needs for adequate time and space. Secondly, there were various gaps and traps within systems for this population. This highlighted the importance of care continuity, interoperability and attending to the variation in support provision from professionals. Finally, essential 'dependency work' was reliant upon social capital and fulfilled by paid and unpaid caring roles to divergent extents, however, advocacy provided an additional supportive safety net. CONCLUSIONS: A series of safety inequities have been identified for people with learning disabilities, alongside potential protective buffers. These include; access to social support and advocacy, a malleable system able to accommodate for individualised care and communication needs, adequate staffing levels, sufficient learning disabilities expertise within and between care settings, and the interoperability of safety initiatives. In order to attend to the safety inequities for this population, these factors need to be considered at a policy and organisational level, spanning across health and social care systems. Findings have wide ranging implications for those with learning disabilities, their carers and families and health and social care providers, with the potential for international learning more widely.
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Cuidadores , Discapacidades para el Aprendizaje , Comunicación , Grupos Focales , Humanos , Discapacidades para el Aprendizaje/terapia , Investigación Cualitativa , Apoyo SocialRESUMEN
BACKGROUND: Healthcare is not without risk. Despite two decades of policy focus and improvement efforts, the global incidence of harm remains stubbornly persistent, with estimates suggesting that 10% of hospital patients are affected by adverse events. METHODS: We explore how current investigative responses can compound the harm for all those affected-patients, families, health professionals and organizations-by neglecting to appreciate and respond to the human impacts. We suggest that the risk of compounded harm may be reduced when investigations respond to the need for healing alongside system learning, with the former having been consistently neglected. DISCUSSION: We argue that incident responses must be conceived within a relational as well as a regulatory framework, and that this-a restorative approach-has the potential to radically shift the focus, conduct and outcomes of investigative processes. CONCLUSION: The identification of the preconditions and mechanisms that enable the success of restorative approaches in global health systems and legal contexts is required if their demonstrated potential is to be realized on a larger scale. The policy must be co-created by all those who will be affected by reforms and be guided by restorative principles. PATIENT OR PUBLIC CONTRIBUTION: This viewpoint represents an international collaboration between a clinician academic, safety scientist and harmed patient and family members. The paper incorporates key findings and definitions from New Zealand's restorative response to surgical mesh harm, which was co-designed with patient advocates, academics and clinicians.
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Familia , Médicos , Personal de Salud , Humanos , Pacientes Internos , Seguridad del PacienteRESUMEN
BACKGROUND: The Partners at Care Transitions (PACTs) intervention was developed to support older people's involvement in hospital to improve outcomes at home. A booklet, question card, record sheet, induction leaflet, and patient-friendly discharge letter support patients to be more involved in their health and wellbeing, medications, activities of daily living and post-discharge care. We aimed to assess intervention acceptability, identify implementation tools, and further develop the intervention. METHODS: This was a qualitative formative evaluation involving three wards from one hospital. We recruited 25 patients aged 75 years and older. Ward staff supported intervention delivery. Data were collected in wards and patients' homes, through semi-structured interviews, observation, and documentary analysis. Data were analysed inductively and iteratively with findings sorted according to the research aims. RESULTS: Patients and staff felt there was a need for, and understood the purpose of, the PACT intervention. Most patients read the booklet but other components were variably used. Implementation challenges included time, awareness, and balancing intervention benefits against risks. Changes to the intervention and implementation included clarifying the booklet's messages, simplifying the discharge letter to reduce staff burden, and using prompts and handouts to promote awareness. CONCLUSION: The PACT intervention offers a promising new way to improve care transitions for older people by supporting patient involvement in their care. After further development of the intervention and implementation package, it will undergo further testing. PATIENT OR PUBLIC CONTRIBUTION: This study regularly consulted a panel representing the local patient community, who supported the development of this intervention and its implementation.
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Alta del Paciente , Transferencia de Pacientes , Humanos , Anciano , Cuidados Posteriores , Actividades Cotidianas , Transición del Hospital al Hogar , HospitalesRESUMEN
BACKGROUND: A worldwide pandemic of a new and unknown virus is characterised by scientific uncertainty. However, despite this uncertainty, health authorities must still communicate complex health risk information to the public. The mental models approach to risk communication describes how people perceive and make decisions about complex risks, with the aim of identifying decision-relevant information that can be incorporated into risk communication interventions. This study explored how people use mental models to make sense of scientific information and apply it to their lives and behaviour in the context of COVID-19. METHODS: This qualitative study enrolled 15 male and female participants of different ages, with different levels of education and occupational backgrounds and from different geographical regions of Norway. The participants were interviewed individually, and the interview data were subjected to thematic analysis. The interview data were compared to a expert model of COVID-19 health risk communication based on online information from the Norwegian Institute of Public Health. Materials in the interview data not represented by expert model codes were coded inductively. The participants' perceptions of and behaviours related to health risk information were analysed across three themes: virus transmission, risk mitigation and consequences of COVID-19. RESULTS: The results indicate that people placed different meanings on the medical and scientific words used by experts to explain the pandemic (e.g., virus transmission and the reproduction number). While some people wanted to understand why certain behaviour and activities were considered high risk, others preferred simple, clear messages explaining what to do and how to protect themselves. Similarly, information about health consequences produced panic in some interviewees and awareness in others. CONCLUSION: There is no one-size-fits-all approach to public health risk communication. Empowering people with decision-relevant information necessitates targeted and balanced risk communication.
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COVID-19 , Pandemias , COVID-19/epidemiología , Comunicación , Femenino , Humanos , Masculino , Modelos Psicológicos , Investigación CualitativaRESUMEN
BACKGROUND: Video-reflexive ethnography (VRE) has been argued to be an alternative approach to collaborative learning in healthcare teams, more able to capture the complexities of the healthcare environment than simulation. This study aims to explore the feasibility and acceptability of employing VRE as an improvement tool in acute maternity services. METHOD: Focused ethnography and semi-structured interviews (n = 17) explored the feasibility of employing VRE from the perspective of the researcher-facilitator, and that of the healthcare staff participants. Reflexive thematic analysis was used to generate key themes. RESULTS: We identified four themes related to feasibility of employing VRE as an improvement approach: laying the groundwork; challenges of capturing in-situ video footage; effective facilitation of reflexive feedback; and, power to change. Of note was the central role of the facilitator in building and maintaining staff trust in the process, particularly in being able to guide collaborative, non-punitive discussion during reflexive feedback sessions. Interestingly, when considering implementation of change, structural hierarchies were evident with more senior staff better able to develop and effect ideas. Two themes related to acceptability of VRE among healthcare staff were identified: staff response to the role of VRE in improvement; and the power of a different perspective. Staff were overwhelmingly positive about their experience of VRE, particularly appreciating the time, space and autonomy it afforded them to navigate and articulate ideas for change and improvement. CONCLUSION: VRE is both feasible and acceptable as an improvement tool with acute, multi-disciplinary maternity staff teams. It is an important healthcare improvement tool that could prompt the development and maintenance of team resilience factors in the face of increasing stress and burn-out of healthcare staff in maternity services.
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Antropología Cultural , Grupo de Atención al Paciente , Femenino , Humanos , Embarazo , Estudios de Factibilidad , Atención a la Salud , RetroalimentaciónRESUMEN
BACKGROUND: Patients have expressed a growing interest in having easy access to their personal health information, and internationally there has been increasing policy focus on patient and care records being more accessible. Limited research from the UK has qualitatively explored this topic from the primary care staff perspective. This study aimed to understand what primary care staff think about patients accessing electronic health records, highlighting errors in electronic health records, and providing feedback via online patient portals. METHODS: A focus group study involving 19 clinical and non-clinical primary care staff. Primary care practices were purposively sampled based on practice size and the percentage of patients using online services. Data were analysed inductively using reflexive thematic analysis. RESULTS: Three themes were generated: (1) Information - what, why and when? (2) Changing behaviours and protecting relationships, and (3) Secure access and safeguarding. The emotional considerations and consequences for staff and patients featured prominently in the data as an overarching theme. CONCLUSIONS: Primary care staff described being invested and supportive of patients accessing their electronic health records, and acknowledged the numerous potential benefits for safety. Uncertainty around the parameters of access, the information available and what this might look like in the future, processes for patients highlighting errors in records, relational issues, security and safeguarding and equitable access, were key areas warranting examination in future research.
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Registros de Salud Personal , Portales del Paciente , Registros Electrónicos de Salud , Grupos Focales , Humanos , Atención Primaria de SaludRESUMEN
Medical education has an important role in developing attitudes, behaviors and cultures that support safe care. Increasingly, however, research has argued for a more interprofessional approach to be taken. This scoping review examines the design and impact of interprofessional education interventions involving medical students that focus on patient safety. We systematically searched PubMed, EMBASE, PsycINFO and CINAHL between January 2000 and November 2019. Studies were eligible if they included medical students and at least one other profession, interactive learning, a strong emphasis on patient safety in the learning objectives, and an empirical method of evaluation. Forty-three studies met these criteria and the diverse range of approaches to intervention design and method of evaluation are detailed in this review. We found that interprofessional patient safety education interventions are generally well received by students with knowledge and skill gain documented; several also reported changes in student behaviour. However, the lack of empirically driven study designs, combined with the lack of rigour when reporting, makes it difficult to draw clear comparisons. Future research should address this, and in particular, report how and why the intervention has been designed to be delivered interprofessionally.
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Educación Médica , Estudiantes de Medicina , Humanos , Educación Interprofesional , Relaciones Interprofesionales , Seguridad del PacienteRESUMEN
BACKGROUND: Responses from the H1N1 swine flu pandemic and the recent COVID-19 coronavirus pandemic provide an opportunity for insight into the role of health authorities' ways of communicating health risk information to the public. We aimed to synthesise the existing evidence regarding different modes of communication used by health authorities in health risk communication with the public during a pandemic. METHODS: We conducted a rapid scoping review. MEDLINE and EMBASE were searched for publications in English from January 2009 through October 2020, covering both the full H1N1 pandemic and the response phase during the COVID-19 pandemic. The search resulted in 1440 records, of which 48 studies met our eligibility criteria. RESULTS: The present review identified studies across a broad interdisciplinary field of health risk communication. The majority focused on the H1N1 pandemic and the COVID-19 pandemic. A content analysis of the studies identified three categories for modes of communication: i) communication channels, ii) source credibility and iii) how the message is communicated. The identified studies on social media focused mainly on content and engagement, while studies on the effect of the use of social media and self-protective behaviour were lacking. Studies on the modes of communication that take the diversity of receivers in the field into account are lacking. A limited number of studies of health authorities' use of graphic and audio-visual means were identified, yet these did not consider/evaluate creative communication choices. CONCLUSION: Experimental studies that investigate the effect of health authorities' videos and messages on social media platforms and self-protective behaviour are needed. More studies are needed across the fields of health risk communication and media studies, including visual communication, web design, video and digital marketing, at a time when online digital communication is central to reaching the public.
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COVID-19 , Comunicación en Salud , Subtipo H1N1 del Virus de la Influenza A , Medios de Comunicación Sociales , Animales , Comunicación , Humanos , Pandemias/prevención & control , Salud Pública , SARS-CoV-2 , PorcinosRESUMEN
BACKGROUND: Resilient and responsive healthcare systems is on the agenda as ever before. COVID-19, specialization of services, resource demands, and technology development are all examples of aspects leading to adaptations among stakeholders at different system levels whilst also attempting to maintain high service quality and safety. This commentary sets the scene for a journal collection on Resilient and responsive health systems in a changing world. The commentary aims to outline main challenges and opportunities in resilient healthcare theory and practice globally, as a backdrop for contributions to the collection. MAIN TEXT: Some of the main challenges in this field relate to a myriad of definitions and approaches to resilience in healthcare, and a lack of studies having multilevel perspectives. Also, the role of patients, families, and the public in resilient and responsive healthcare systems is under researched. By flipping the coin, this illustrates opportunities for research and practice and raise key issues that future resilience research should pay attention to. The potential of combining theoretical lenses from different resilience traditions, involvement of multiple stakeholders in co-creating research and practice improvement, and modelling and visualizing resilient performance are all opportunities to learn more about how healthcare succeeds under stress and normal operations. CONCLUSION: A wide understanding of resilience and responsiveness is needed to support planning and preparation for future disasters and for handling the routine small-scale adaptation. This collection welcomes systematic reviews, quantitative, qualitative, and mixed-methods research on the topic of resilience and responsiveness in all areas of the health system.
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COVID-19 , Atención a la Salud , Instituciones de Salud , Servicios de Salud , Humanos , SARS-CoV-2RESUMEN
BACKGROUND: Transitions of care are often risky, particularly for older people, and shorter hospital stays mean that patients can go home with ongoing care needs. Most previous research has focused on fundamental system flaws, however, care generally goes right far more often than it goes wrong. We explored staff perceptions of how high performing general practice and hospital specialty teams deliver safe transitional care to older people as they transition from hospital to home. METHODS: We conducted a qualitative study in six general practices and four hospital specialties that demonstrated exceptionally low or reducing readmission rates over time. Data were also collected across four community teams that worked into or with these high-performing teams. In total, 157 multidisciplinary staff participated in semi-structured focus groups or interviews and 9 meetings relating to discharge were observed. A pen portrait approach was used to explore how teams across a variety of different contexts support successful transitions and overcome challenges faced in their daily roles. RESULTS: Across healthcare contexts, staff perceived three key themes to facilitate safe transitions of care: knowing the patient, knowing each other, and bridging gaps in the system. Transitions appeared to be safest when all three themes were in place. However, staff faced various challenges in doing these three things particularly when crossing boundaries between settings. Due to pressures and constraints, staff generally felt they were only able to attempt to overcome these challenges when delivering care to patients with particularly complex transitional care needs. CONCLUSIONS: It is hypothesised that exceptionally safe transitions of care may be delivered to patients who have particularly complex health and/or social care needs. In these situations, staff attempt to know the patient, they exploit existing relationships across care settings, and act to bridge gaps in the system. Systematically reinforcing such enablers may improve the delivery of safe transitional care to a wider range of patients. TRIAL REGISTRATION: The study was registered on the UK Clinical Research Network Study Portfolio (references 35272 and 36174 ).
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Personal de Hospital/psicología , Cuidado de Transición/normas , Anciano , Atención a la Salud , Hospitales , Humanos , Alta del Paciente , Investigación Cualitativa , Reino UnidoRESUMEN
BACKGROUND: In the regulation of healthcare, the subject of patient and family involvement figures increasingly prominently on the agenda. However, the literature on involving patients and families in regulation is still in its infancy. A systematic analysis of how patient and family involvement in regulation is accomplished across different health systems is lacking. We provide such an overview by mapping and classifying methods of patient and family involvement in regulatory practice in four countries; Norway, England, the Netherlands, and Australia. We thus provide a knowledge base that enables discussions about possible types of involvement, and advantages and difficulties of involvement encountered in practice. METHODS: The research design was a multiple case study of patient and family involvement in regulation in four countries. The authors collected 1) academic literature if available and 2) documents of regulators that describe user involvement. Based on the data collected, the authors from each country completed a pre-agreed template to describe the involvement methods. The following information was extracted and included where available: 1) Method of involvement, 2) Type of regulatory activity, 3) Purpose of involvement, 4) Who is involved and 5) Lessons learnt. RESULTS: Our mapping of involvement strategies showed a range of methods being used in regulation, which we classified into four categories: individual proactive, individual reactive, collective proactive, and collective reactive methods. Reported advantages included: increased quality of regulation, increased legitimacy, perceived justice for those affected, and empowerment. Difficulties were also reported concerning: how to incorporate the input of users in decisions, the fact that not all users want to be involved, time and costs required, organizational procedures standing in the way of involvement, and dealing with emotions. CONCLUSIONS: Our mapping of user involvement strategies establishes a broad variety of ways to involve patients and families. The four categories can serve as inspiration to regulators in healthcare. The paper shows that stimulating involvement in regulation is a challenging and complex task. The fact that regulators are experimenting with different methods can be viewed positively in this regard.
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Atención a la Salud/legislación & jurisprudencia , Familia/psicología , Participación del Paciente/métodos , Australia , Inglaterra , Humanos , Países Bajos , NoruegaRESUMEN
BACKGROUND: The PRASE (Patient Reporting and Action for a Safe Environment) intervention provides a way to systematically collect patient feedback to support service improvement. To provide a sustainable mechanism for the PRASE intervention, a 2-year improvement project explored the potential for hospital volunteers to facilitate the collection of PRASE feedback. OBJECTIVE: To explore the implementation of the PRASE intervention delivered in collaboration with hospital volunteers from the perspectives of key stakeholders. DESIGN: A qualitative case study design was utilized across three acute NHS trusts in the United Kingdom between March 2016 and October 2016. Ward level data (staff interviews; action planning meeting recordings; implementation fidelity information) were analysed taking a pen portrait approach. We also carried out focus groups with hospital volunteers and interviews with voluntary services/patient experience staff, which were analysed thematically. RESULTS: Whilst most ward staff reported feeling engaged with the intervention, there were discordant views on its use and usefulness. The hospital volunteers were positive about their involvement, and on some wards, worked with staff to produce actions to improve services. The voluntary services/patient experience staff participants emphasised the need for PRASE to sit within an organisations' wider governance structure. CONCLUSION: From the perspective of key stakeholders, hospital volunteers facilitating the collection of PRASE feedback is a feasible means of implementing the PRASE intervention. However, the variability around ward staff being able to use the feedback to make changes to services demonstrates that it is this latter part of the PRASE intervention cycle that is more problematic.
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Voluntarios de Hospital , Hospitales , Seguridad del Paciente , Investigación Cualitativa , Administración de la Seguridad , Grupos Focales , Humanos , Medicina Estatal , Reino UnidoRESUMEN
BACKGROUND: Current models of patient-enacted involvement do not capture the nuanced dynamic and interactional nature of involvement in care. This is important for the development of flexible interventions that can support patients to 'reach-in' to complex health-care systems. OBJECTIVE: To develop a dynamic and interactional model of patient-enacted involvement in care. SEARCH STRATEGY: Electronic search strategy run in five databases and adapted to run in an Internet search engine supplemented with searching of reference lists and forward citations. INCLUSION CRITERIA: Qualitative empirical published reports of older people's experiences of care transitions from hospital to home. DATA EXTRACTION AND SYNTHESIS: Reported findings meeting our definition of involvement in care initially coded into an existing framework. Progression from deductive to inductive coding leads to the development of a new framework and thereafter a model representing changing states of involvement. MAIN RESULTS: Patients and caregivers occupy and move through multiple states of involvement in response to perceived interactions with health-care professionals as they attempt to resolve health- and well-being-related goals. 'Non-involvement', 'information-acting', 'challenging and chasing' and 'autonomous-acting' were the main states of involvement. Feeling uninvolved as a consequence of perceived exclusion leads patients to act autonomously, creating the potential to cause harm. DISCUSSION AND CONCLUSION: The model suggests that involvement is highly challenging for older people during care transitions. Going forward, interventions which seek to support patient involvement should attempt to address the dynamic states of involvement and their mediating factors.
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Continuidad de la Atención al Paciente , Servicios de Atención de Salud a Domicilio , Alta del Paciente , Participación del Paciente , Anciano , Humanos , Modelos TeóricosRESUMEN
BACKGROUND: Previous research into improving patient safety has emphasised the importance of responding to and learning from concerns raised by service users and carers. Expertise gained by the experiences of service users and their carers has also been seen as a potential resource to improve patient safety. We know little about the ease of raising concerns within mental health services, and the potential benefits of involving service users and carers in safety interventions. This study aimed to explore service user and carer perceptions of raising safety concerns, and service user, carer and health professional views on the potential for service user and carer involvement in safety interventions. METHODS: UK service users, carers and health professionals ( n= 185) were recruited via social media to a cross-sectional survey focussed on raising concerns about safety issues and views on potential service user and carer participation in safety interventions. Data were analysed using descriptive statistics, and free text responses were coded into categories. RESULTS: The sample of 185 participants included 90 health professionals, 77 service users and 18 carers. Seventy seven percent of service users and carers reported finding it very difficult or difficult to raise concerns. Their most frequently cited barriers to raising concerns were: services did not listen; concerns about repercussions; and the process of raising concerns, especially while experiencing mental ill health. There was universal support from health professionals for service user and carer involvement in safety interventions and over half the service users and carers supported involvement, primarily due to their expertise from experience. CONCLUSIONS: Mental health service users and carers experience difficulties in raising safety concerns meaning that potentially useful information is being missed. All the health professionals and the majority of service users and carers saw potential for service users and carer involvement in interventions to improve safety, to ensure their experiences are taken into consideration. The results provide guidance for future research about the most effective ways of ensuring that concerns about safety can be both raised and responded to, and how service user and carer involvement in improving safety in mental health care can be further developed.