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Introduction: To contribute to addressing diagnostic health inequalities in the United Kingdom, this review aimed to investigate determinants of diagnostic service use amongst people experiencing high deprivation in the United Kingdom. Methods: A systematic review was conducted using three databases (EBSCO, Web of Science and SCOPUS) to search studies pertaining to diagnostic service use amongst people experiencing high deprivation. Search terms related to diagnostics, barriers and facilitators to access and deprivation. Articles were included if they discussed facilitators and/or barriers to diagnostic service access, contained participants' direct perspectives and focussed on individuals experiencing high deprivation in the United Kingdom. Articles were excluded if the full text was unretrievable, only abstracts were available, the research did not focus on adults experiencing high deprivation in the United Kingdom, those not including participants' direct perspectives (e.g., quantitative studies) and papers unavailable in English. Results: Of 14,717 initial papers, 18 were included in the final review. Determinants were grouped into three themes (Beliefs and Behaviours, Emotional and Psychological Factors and Practical Factors), made up of 15 sub‐themes. These were mapped to a conceptual model, which illustrates that Beliefs and Behaviours interact with Emotional and Psychological Factors to influence Motivation to access diagnostic services. Motivation then influences and is influenced by Practical Factors, resulting in a Decision to Access or Not. This decision influences Beliefs and Behaviours and/or Emotional and Psychological Factors such that the cycle begins again. Conclusion: Decision‐making regarding diagnostic service use for people experiencing high deprivation in the United Kingdom is complex. The conceptual model illustrates this complexity, as well as the mediative, interactive and iterative nature of the process. The model should be applied in policy and practice to enable understanding of the factors influencing access to diagnostic services and to design interventions that address identified determinants. Patient or Public Contribution: Consulting lived experience experts was imperative in understanding whether and how the existing literature captures the lived experience of those experiencing high deprivation in South England. The model was presented to lived experience experts, who corroborated findings, highlighted significant factors for them and introduced issues that were not identified in the review. [ABSTRACT FROM AUTHOR]

Introduction: Patient‐reported measures that assess satisfaction and experience are increasingly utilised in healthcare sectors, including the alcohol and other drug (AOD) sector. This scoping review identifies how and to what extent people accessing AOD services have been involved in the development of satisfaction and experience measures to date. Methods: PubMed, EMBASE, CINAHL, Scopus, ProQuest, Google and Google Scholar were searched. Included papers described the development and/or implementation of a multiple‐item measure of patient‐reported experience or satisfaction specifically for people accessing AOD treatment and/or harm reduction programmes. If there was more than one paper, key papers were chosen that described each measure. The method of development, including service user involvement, was assessed against a framework generated for this review. Two reviewers were involved at each stage. Results: Thirty measures—23 satisfaction and 7 experience—were identified. Sixteen measures reported some level of involvement by people accessing AOD services in their development, although, for most measures, at a relatively low level. This involvement increased over the time span of the review becoming more frequent in later years. Only four measures were developed for use in harm reduction‐specific settings, and fewer than half reported undertaking analysis of underlying scale structure and constructs. Conclusion: Several gaps could be addressed to enhance the measurement of patient‐centred care in the AOD sector, including: developing experience measures for use in harm reduction settings and across various AOD settings in a service system; improved reporting of psychometric properties of these measures and increasing commitment to the meaningful involvement of AOD service users in measure development. Patient or Public Contribution: This scoping review is part of a broader codesign project that involves a partnership between the peak organisation for AOD services and the peer‐based AOD consumer organisation in the Australian Capital Territory, Australia. These organisations are working closely together to engage with AOD service users, service providers and policy makers in this codesign project. As such, the Executive Director of the peer‐based AOD consumer organisation is involved as a co‐author of this scoping review. [ABSTRACT FROM AUTHOR]

Introduction: We conducted a systematic review of qualitative evidence to improve understanding of the processes and outcomes of redress and reconciliation following a life‐changing event from the perspectives of individuals experiencing the event and their families. Methods: We searched six bibliographic databases for primary qualitative evidence exploring the views of individuals who have experienced a life‐changing event, and/or their family or carers, of redress or reconciliation processes. This was supplemented with targeted database searches, forward and backward citation chasing and searches of Google Scholar and relevant websites. Title and abstract and full‐text screening were undertaken independently by two reviewers. Data extraction and quality appraisal were conducted by one reviewer and checked by a second. We used a best‐fit framework synthesis approach, drawing upon procedural and restorative justice concepts. Findings: Fifty‐three studies (61 papers) were eligible for inclusion. Forty‐one studies (47 papers) were included in the synthesis, from which we identified four themes. Three themes 'Transparency', 'Person‐centered' and 'Trustworthy' represent the procedural elements required to support a fair and objective process. The fourth, 'Restorative justice' encapsulates how a fair process feels to those who have experienced a life‐changing event. This theme highlights the importance of an empathic relationship between the different parties involved in the redress‐reconciliation process and the significance of being able to engage in meaningful action. Conclusion: Our findings highlight the procedural aspects and context of redress‐reconciliation processes required to ensure that the process and outcomes are experienced as fair. These criteria may be applied to the processes used to investigate both recent and historical patient safety events. Public Contribution: One member of the public affiliated with the Exeter Policy Research Programme Evidence Review Facility helped develop the review protocol. Two people with experience of medically life‐changing events provided insight which corroborated our findings and identified important limitations of the evidence included in this review. [ABSTRACT FROM AUTHOR]

Background: Youth engagement in research, wherein youth are involved in the research beyond mere participation as human subjects, is growing and becoming more popular as an approach to research. However, systematic and deliberate theory‐building has been limited. We conducted a systematic review to identify and synthesize theories, models and frameworks that have been applied in the engagement of youth in health research, including mental health. Methods: Six academic databases (MEDLINE, PsycINFO, Embase, PubMed, Scopus, CINAHL) and the grey literature were searched for relevant studies. Citation tracking was conducted through ancestry and descendancy searches. The final search was completed on 7 February 2023. Findings were summarized in a narrative synthesis informed by principles of hermeneutic analysis and interpretation. Reporting of results is in accordance with the PRISMA (Preferred Reporting Items for Systematic reviews and Meta‐Analyses) 2020 Statement. Results: Of the 1156 records identified, 16 papers were included, from which we extracted named theories (n = 6), implicit theories (n = 5) and models and frameworks (n = 20) used for youth engagement in health research. We identified theories that were explicitly stated and surfaced theories that were more implicitly suggested. Models and frameworks were organized into four categories based on their principal features: power‐focused (n = 8), process‐focused (n = 7), impact‐focused (n = 3) and equity‐focused (n = 2). Few frameworks (n = 5) were empirically tested in health‐related research. Conclusions: The state of theoretical development in youth engagement in research is still evolving. In this systematic review, we identified theories, models and frameworks used for youth engagement in health research. Findings from this systematic review offer a range of resources to those who seek to develop and strengthen youth engagement in their own research. Patient or Public Contribution: Youth engaged as patients in the research were not involved in planning or conducting the systematic review. However, youth researchers in their early to mid‐20s led the planning, implementation and interpretation of the review. As part of subsequent work, we formed a youth advisory board to develop a youth‐led knowledge mobilization intended for an audience of youth with lived experience of being engaged as patients in research. [ABSTRACT FROM AUTHOR]

Introduction: As the world's population ages, there has been increasing attention to developing health policies to support older adults. Engaging older adults in policy‐making is one way to ensure that policy decisions align with their needs and priorities. However, ageist stereotypes often underestimate older adults' ability to participate in such initiatives. This scoping review aims to describe the characteristics and impacts of public engagement initiatives designed to help inform health policy‐making for older adults. Methods: A systematic search of peer‐reviewed and grey literature (English only) describing public engagement initiatives in health policy‐making for older adults was conducted using six electronic databases, Google and the Participedia website. No geographical, methodological or time restrictions were applied to the search. Eligibility criteria were purposefully broad to capture a wide array of relevant engagement initiatives. The outcomes of interest included participants, engagement methods and reported impacts. Results: This review included 38 papers. The majority of public engagement initiatives were funded or initiated by governments or government agencies as a formal activity to address policy issues, compared to initiatives without a clear link to a specific policy‐making process (e.g., research projects). While most initiatives engaged older adults as target participants, there was limited reporting on efforts to achieve participant diversity. Consultation‐type engagement activities were most prevalent, compared to deliberative and collaborative approaches. Impacts of public engagement were frequently reported without formal evaluations. Notably, a few articles reported negative impacts of such initiatives. Conclusion: This review describes how public engagement practices have been conducted to help inform health policy‐making for older adults and the documented impacts. The findings can assist policymakers, government staff, researchers and seniors' advocates in supporting the design and execution of public engagement initiatives in this policy sector. Patient or Public Contribution: Older adult partners from the McMaster University Collaborative for Health and Aging provided strategic advice throughout the key phases of this review, including developing a review protocol, data charting and synthesis and interpreting and presenting the review findings. This collaborative partnership was an essential aspect of this review, enhancing its relevance and meaningfulness for older adults. [ABSTRACT FROM AUTHOR]

Background: Arts‐based methodologies and methods (ABM) can elicit rich and meaningful data with seldom‐heard groups and empower participants in research. Young people with complex psychosocial needs could be better engaged in research using arts‐based approaches to overcome communication and literacy issues as well as distrust of those with power, including researchers. A critical review of the use and impact of ABM among this population is timely. The purpose of this review is to synthesize and examine the experience and use of ABM with young people with complex psychosocial needs. Methods: A systematic narrative literature review was conducted with a search of the literature from 2009 to 2021. All abstracts were reviewed independently by two authors and full papers were screened for eligibility against inclusion and exclusion criteria. Data synthesis focused on a descriptive numerical summary and a thematic analysis focused on key patterns across papers relating to the review objectives. Results and Discussion: A total of 25 papers were included. The most common issues of focus were mental health (n = 10) and homelessness (n = 11) and methods using Photovoice (n = 12) and Body Mapping (n = 5). Individual interview data (n = 20) were the most commonly analysed, followed by created works (n = 19). Less than half the studies involved young people in the interpretation of the data collected. Knowledge translation was not described in almost half the studies, with public exhibits (n = 7) and forums with service providers (n = 4) being the most common activities. Key themes across the studies were valued over traditional methods in eliciting data, ABM as an approach to engage these young people in research and the impact of the use of ABM on participants and on key stakeholders through knowledge translation. Conclusions: The growing field of ABM presents opportunities to enhance research with young people with complex psychosocial needs by promoting meaningful exploration of experiences, engaging participants in research and strengthening knowledge translation. The involvement of young people in the interpretation of data and ensuring that knowledge translation occurs are key areas for future attention. Patient or Public Contribution: The findings of this review will inform future research to improve the engagement of young people with complex psychosocial needs in research and promote power sharing between researchers and research participants. [ABSTRACT FROM AUTHOR]

Background: Patients with advanced incurable cancer face difficult decisions about palliative treatment options towards their end of life. However, they are often not provided with the appropriate information and support that is needed to make informed decisions. This review aimed to identify contexts and mechanisms associated with communication tools, patient decision‐aids and shared decision‐making (SDM) approaches that influence patient outcomes. Methods: We used a realist review method to search for published studies of patients (adults > 18) with advanced cancer who were expected to make a decision about palliative treatment and/or supportive care in consultation with healthcare practitioners. We appraised and synthesised literature describing the contexts of (when and how) decision aids and SDM approaches are used, and how these contexts interact with mechanisms (resources and reasoning) which impact patient outcomes. Stakeholders including academics, palliative healthcare professionals (HCPs) and people with lived experience of supporting people with advanced incurable cancer contributed to identifying explanatory accounts. These accounts were documented, analysed and consolidated to contribute to the development of a programme theory. Results: From the 33 included papers, we consolidated findings into 20 explanatory accounts to develop a programme theory that explains key contexts and mechanisms that influence patient and SDM. Contexts include underlying patients' and HCPs' attitudes and approaches. These need to be understood in relation to key mechanisms, including presenting information in multiple formats and providing adequate time and opportunities to prepare for and revisit decisions. Contexts influenced mechanisms which then influence the levels of patient decisional satisfaction, conflict and regret. Conclusions: Our programme theory highlights mechanisms that are important in supporting shared treatment decisions for advanced noncurative cancer. The findings are informative for developing and evaluating interventions to improve understanding and involvement in SDM for patients with advanced incurable cancer. Patient and Public Contribution: We included patient and public involvement (PPI) representatives in four stakeholder meetings. PPI helped to define the scope of the review, identify their unique experiences and perspectives, synthesise their perspectives with our review findings, make decisions about which theories we included in our programme theory and develop recommendations for policy and practice and future research. [ABSTRACT FROM AUTHOR]

Background The proliferation of 'accessible information' for people with intellectual disabilities in UK health care has accelerated in recent years, underpinned by policy guidance alongside the recent introduction of mandatory standards. However, questions have been raised as to the impact of such resources as a means of enhancing involvement in health care and addressing health inequalities. Objective To review and synthesize the evidence from different approaches used to evaluate the impact of accessible information for people with intellectual disabilities using a meta-narrative approach. Search strategy Literature searches were iterative and incorporated formal databases, grey literature and hand searches alongside more intuitive and opportunistic methods. Inclusion criteria Included English language papers published before December 2015 described the design and evaluation of written information adapted for adults with intellectual disabilities. Data extraction and synthesis We organized the papers into five groups according to similarity in authors' writing styles and presentation, epistemology and theoretical foundations, aims and methodologies, professional and organizational identities. Main results The 42 included papers in the five groupings occupied diverse positions on (i) public communication vs individualized materials, (ii) literacy as decontextualized skills vs social practices and (iii) the expertise of patients vs professionals. There was limited evidence for the impact of accessible health information, notwithstanding the potential benefits associated with their creation. Conclusions Individually tailored information is more likely to meet personalized health information needs for people with intellectual disabilities. The emergence of different social formations in the creation of accessible information has potential for advancing engagement of diverse groups. [ABSTRACT FROM AUTHOR]

Background: Scaling in health and social services (HSS) aims to increase the intended impact of proven effective interventions. Patient and public involvement (PPI) is critical for ensuring that scaling beneficiaries' interests are served. We aimed to identify PPI strategies and their characteristics in the science and practice of scaling in HSS. Methods: In this scoping review, we included any scaling initiative in HSS that used PPI strategies and reported PPI methods and outcomes. We searched electronic databases (e.g., Medline) from inception to 5 February 2024, and grey literature (e.g., Google). Paired reviewers independently selected and extracted eligible reports. A narrative synthesis was performed and we used the PRISMA for Scoping Reviews and the Guidance for Reporting Involvement of Patients and the Public (GRIPP2). Findings: We included 110 unique reports out of 24,579 records. In the past 5 years, the evidence on PPI in scaling has increased faster than in any previous period. We found 236 mutually nonexclusive PPI strategies among 120 scaling initiatives. Twenty‐four initiatives did not target a specific country; but most of those that did so (n = 96) occurred in higher‐income countries (n = 51). Community‐based primary health care was the most frequent level of care (n = 103). Mostly, patients and the public were involved throughout all scaling phases (n = 46) and throughout the continuum of collaboration (n = 45); the most frequently reported ethical lens regarding the rationale for PPI was consequentialist‐utilitarian (n = 96). Few papers reported PPI recruitment processes (n = 31) or incentives used (n = 18). PPI strategies occurred mostly in direct care (n = 88). Patient and public education was the PPI strategy most reported (n = 31), followed by population consultations (n = 30). Conclusions: PPI in scaling is increasing in HSS. Further investigation is needed to better document the PPI experience in scaling and ensure that it occurs in a meaningful and equitable way. Patient and Public Contribution: Two patients were involved in this review. They shared decisions on review questions, data collection instruments, protocol design, and findings dissemination. Review Registration: Open Science Framework on 19 August 2020 (https://osf.io/zqpx7/). [ABSTRACT FROM AUTHOR]

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

Background: Meaningful involvement of adolescents in health research is their fundamental human right and has many benefits. A lack of awareness among researchers on how to meaningfully involve adolescents in health research has been linked to adolescent under involvement in health research. To address this barrier, studies have reported the need for more guidance. To inform the development of better guidelines on adolescent involvement, there is a need to first consolidate the currently available guidance on adolescent involvement in health research and to identify the gaps in these guidelines. This review aims to systematically identify all the currently available guidelines on adolescent involvement in health research and evaluate their scope, content, context, and quality. Methods: This rapid review was pre‐registered with PROSPERO #CRD42021293586. It included documents that incorporated tangible recommendations on the involvement of adolescents in health research. We searched six databases for peer‐reviewed literature: MEDLINE, CINAHL, Embase, Scopus, Web of Science, and ERIC. We conducted a grey literature search in Google Scholar, Google, websites of 472 relevant organisations and sought expert input. The quality of the guidelines was assessed using the Appraisal of Guidelines for REsearch & Evaluation (AGREE‐II) Instrument. Data was analysed using descriptive analyses and narrative synthesis. Results: We found that the current guidelines on adolescent involvement in health research are often narrow in scope, targeting specific users and populations while focusing on limited research areas. The guidelines individually fail to provide comprehensive coverage of recommendations across all topics related to adolescent research involvement, that are collectively addressed across all included guidelines. Furthermore, these guidelines tend to be context‐specific and are generally of low quality, often due to inadequate stakeholder involvement and a lack of rigorous development methods. Conclusion: This review provides a consolidated list of guidelines on adolescent involvement in health research along with their quality scores as a resource for researchers to select the guidelines suitable for their research topic, context, and scope for adolescent involvement. There is a need to develop a set of guidelines on adolescent involvement in research, which are comprehensive in scope, cover all key aspects of adolescent involvement in health research, can be adapted for different contexts, and which are based on rigorous and systematic methods. Patient and Public Involvement: Adolescent co‐researchers D. B. and C. W. were involved at different stages of the review process. D. B. screened 25% of the peer‐reviewed articles at the title and abstract screening stage and 10% at full‐text screening stage. C. W. extracted data from 10% of the included guidelines. Both co‐researchers reviewed and shared their feedback on the article and are co‐authors on this paper. They will also be invited to contribute to further dissemination of the findings from this review. [ABSTRACT FROM AUTHOR]

Objective: This article addresses the persistent challenge of Delayed Hospital Discharge (DHD) and aims to provide a comprehensive overview, synthesis, and actionable, sustainable plan based on the synthesis of the systematic review articles spanning the past 24 years. Our research aims to comprehensively examine DHD, identifying its primary causes and emphasizing the significance of effective communication and management in healthcare settings. Methods: We conducted the Preferred Reporting Items for Systematic Reviews and Meta‐Analyses extension for Scoping Reviews (PRISMA‐ScR) method for synthesizing findings from 23 review papers published over the last two decades, encompassing over 700 studies. In addition, we employed a practical and comprehensive framework to tackle DHD. Rooted in Linderman's model, our approach focused on continuous process improvement (CPI), which highlights senior management commitment, technical/administrative support, and social/transitional care. Our proposed CPI method comprised several stages: planning, implementation, data analysis, and adaptation, all contributing to continuous improvement in healthcare delivery. This method provided valuable insights and recommendations for addressing DHD challenges. Findings: Our DHD analysis revealed crucial insights across multiple dimensions. Firstly, examining causes and interventions uncovered issues such as limited discharge destinations, signaling unsustainable solutions, and inefficient care coordination. The second aspect explored the patient and caregiver experience, emphasizing challenges linked to staff uncertainty and negative physical environments, with notable attention to the underexplored area of caregiver experience. The third theme explored organizational and individual factors, including cognitive impairment and socioeconomic influences. The findings emphasized the importance of incorporating patients' data, recognizing its complexity and current avoidance. Finally, the role of transitional and social care and financial strategies was scrutinized, emphasizing the need for multicomponent, context‐specific interventions to address DHD effectively. Conclusion: This study addresses gaps in the literature, challenges prevailing solutions, and offers practical pathways for reducing DHD, contributing significantly to healthcare quality and patient outcomes. The synthesis introduces the vital CPI stage, enhancing Linderman's work and providing a pragmatic framework to eradicate delayed discharge. Future efforts will address practitioner consultations to enhance perspectives and further enrich the study. Patient or Public Contribution: Our scoping review synthesizes and analyzes existing systematic review articles and emphasizes offering practical, actionable solutions. While our approach does not directly engage patients, it strategically focuses on extracting insights from the literature to create a CPI framework. This unique aspect is intentionally designed to yield tangible benefits for patients, service users, caregivers, and the public. Our actionable recommendations aim to improve hospital discharge processes for better healthcare outcomes and experiences. This detailed analysis goes beyond theoretical considerations and provides a practical guide to improve healthcare practices and policies. [ABSTRACT FROM AUTHOR]

Background: People with motor neuron disease (pwMND) are routinely offered gastrostomy feeding tube placement and (non‐invasive and invasive) ventilation to manage the functional decline associated with the disease. This study aimed to synthesise the findings from the qualitative literature to understand how individual, clinical team and organisational factors influence pwMND decisions about these interventions. Methods: The study design was guided by the enhancing transparency in reporting the synthesis of qualitative research (ENTREC) statement. The search of five bibliography databases and an extensive supplementary search strategy identified 27 papers that included qualitative accounts of pwMND, caregivers and healthcare professionals' (HCPs) experiences of making decisions about gastrostomy and ventilation. The findings from each study were included in a thematic synthesis. Findings: Making decisions about interventions is an emotional rather than simply a functional issue for pwMND. The interventions can signal an end to normality, and increasing dependence, where pwMND consider the balance between quality of life and extending survival. Interactions with multiple HCPs and caregivers can influence the process of decision‐making and the decisions made. These interactions contribute to the autonomy pwMND are able to exert during decision‐making. HCPs can both promote and threaten pwMND perceived agency over decisions through how they approach discussions about these interventions. Though there is uncertainty over the timing of interventions, pwMND who agree to interventions report reaching a tipping point where they accept the need for change. Conclusion: Discussion of gastrostomy and ventilation options generate an emotional response in pwMND. Decisions are the consequence of interactions with multiple external agents, including HCPs treading a complex ethical path when trying to improve health outcomes while respecting pwMND right to autonomy. Future decision support interventions that address the emotional response and seek to support autonomy have the potential to enable pwMND to make informed and timely decisions about gastrostomy placement and ventilation. Patient or Public Contribution: The lead author collaborated with several patient and participant involvement (PPI) groups with regards to the conceptualisation and design of this project. Decisions that have been influenced by discussions with multiple PPI panels include widening the scope of decisions about ventilation in addition to gastrostomy placement and the perceptions of all stakeholders involved (i.e., pwMND, caregivers and HCPs). [ABSTRACT FROM AUTHOR]

Background: Patient and public involvement (PPI) has become increasingly important in the development, delivery and improvement of healthcare. PPI is used in healthcare innovation; yet, how it is used has been under‐reported. The aim of this scoping review is to identify and map the current available empirical evidence on the role of PPI during different stages of healthcare innovation. Methods: The scoping review was conducted in accordance with PRISMAScR and included any study published in a peer‐reviewed journal between 2004 and 2021 that reported on PPI in healthcare innovation within any healthcare setting or context in any country. The following databases were searched: Medline, EMBASE, CINAHL, PsycInfo, HMIC and Google Scholar. We included any study type, including quantitative, qualitative and mixed‐method studies. We excluded theoretical frameworks, conceptual, scientific or grey literature as well as discussion and opinion papers. Results: Of the 87 included studies, 81 (93%) focused on or were conducted by authors in developed countries. A wide range of conditions were considered, with more studies focusing on mental health (n = 18, 21%) and cancer care (n = 8, 9%). The vast majority of the studies focused on process and service innovations (n = 62, 71%). Seven studies focused on technological and clinical innovations (8%), while 12 looked at both technological and service innovations (14%). Only five studies examined systems innovation (5%) and one study looked across all types of innovations (1%). PPI is more common in the earlier stages of innovation, particularly problem identification and invention, in comparison to adoption and diffusion. Conclusion: Healthcare innovation tends to be a lengthy process. Yet, our study highlights that PPI is more common across earlier stages of innovation and focuses mostly on service innovation. Stronger PPI in later stages could support the adoption and diffusion of innovation. Patient or Public Contribution: One of the coauthors of the paper (S. S.) is a service user with extensive experience in PPI research. S. S. supported the analysis and writing up of the paper. [ABSTRACT FROM AUTHOR]

Background: To improve harm prevention, patient engagement in safety at the direct care level is advocated. For patient safety to most effectively include patients, it is critical to reflect on existing evidence, to better position future research with implications for education and practice. Methods: As part of a multi‐phase study, which included a qualitative descriptive study (Duhn & Medves, 2018), a scoping review about patient engagement in safety was conducted. The objective was to review papers about patients' attitudes and behaviours concerning their involvement in ensuring their safe care. The databases searched included MEDLINE, CINAHL and EMBASE (year ending 2019). Results: This review included 35 papers about "Patient Attitudes" and 125 papers about "Patient Behaviours"—indicative of growing global interest in this field. Several patterns emerged from the review, including that most investigators have focused on a particular dimension of harm prevention, such as asking about provider handwashing, and there is less known about patients' opinions about their role in safety generally and how to actualize it in a way that is right for them. While patients may indicate favourable attitudes toward safety involvement generally, intention to act or actual behaviours may be quite different. Conclusion: This review, given its multi‐focus across the continuum of care, is the first of its kind based on existing literature. It provides an important international "mapping" of the initiatives that are underway to engage patients in different elements of safety and their viewpoints, and identifies the gaps that remain. [ABSTRACT FROM AUTHOR]

Background: Suicide is a major public health risk requiring targeted suicide prevention interventions. The principles of co‐production are compatible with tailoring suicide prevention interventions to meet an individual's needs. Aims: This review aimed to evaluate the role and effectiveness of co‐produced community‐based suicide prevention interventions among adults. Methods: Four electronic databases (PsycInfo, CINAHL, MEDLINE and web of science) were systematically searched. A narrative synthesis was conducted. Results: From 590 papers identified through searches, 14 fulfilled the inclusion criteria. Most included studies elicited the views and perspectives of stakeholders in a process of co‐design/co‐creation of community‐based suicide prevention interventions. Conclusion: Stakeholder involvement in the creation of community‐based suicide prevention interventions may improve engagement and give voice to those experiencing suicidal crisis. However, there is limited evaluation extending beyond the design of these interventions. Further research is needed to evaluate the long‐term outcomes of co‐produced community‐based suicide prevention interventions. Patient and Public Involvement: This paper is a systematic review and did not directly involve patients and/or the public. However, the findings incorporate the views and perspectives of stakeholders as reported within the studies included in this review, and the findings may inform the future involvement of stakeholders in the design, development and delivery of community‐based suicide prevention interventions for adults. [ABSTRACT FROM AUTHOR]

Background Chronic pain is a major economic and social health problem. Up to 79% of chronic pain patients are unsatisfied with their pain management. Meeting patients' expectations is likely to produce greater satisfaction with care. The challenge is to explore patients' genuine expectations and needs. However, the term expectation encompasses several concepts and may concern different aspects of health-care provision. Objective This review aimed to systematically collect information on types and subject of patients' expectations for chronic pain management. Search strategy We searched for quantitative and qualitative studies. Because of the multidimensional character of the term 'expectations,' the search included subject headings and free text words related to the concept of expectations. Data extraction and synthesis A framework for understanding patients' expectations was used to map types of expectations within structure, process or outcome of health care. Main results Twenty-three research papers met the inclusion criteria: 18 quantitative and five qualitative. This review found that assessment of patients' expectations for treatment is mostly limited to outcome expectations (all 18 quantitative papers and four qualitative papers). Patients generally have high expectations regarding pain reduction after treatment, but expectations were higher when expressed as an ideal expectation (81-93% relief) than as a predicted expectation (44-64%). Discussion and conclusions For health-care providers, for pain management and for pain research purposes, the awareness that patients express different types of expectations is important. For shared decision making in clinical practice, it is important that predicted expectations of the patient are known to the treating physician and discussed. Structure and process expectations are under-represented in our findings. However, exploring and meeting patients' expectations regarding structure, process and outcome aspects of pain management may increase patient satisfaction. [ABSTRACT FROM AUTHOR]

Introduction: People living with dementia experience communication difficulties. Personal information documents, or healthcare passports, enable communication of information essential for the care of a person with dementia. Despite the potential for providing person‐centred care, personal information documents are not ubiquitously used. The Capability Opportunity Motivation—Behaviour (COM‐B) model can be used to understand factors determining individuals' behaviours. Objectives: This study aimed to identify the barriers to and facilitators of the use of healthcare passports for people living with dementia through a systematic review methodology. Methods: A systematic search of six electronic databases was undertaken. Grey literature was searched using three databases. All study types reporting barriers to or facilitators of the use of personal information documents in the care of adults living with dementia in high‐income countries were included. Study quality was assessed using the NICE Quality Appraisal Checklist. Thematic synthesis was used to develop descriptive themes, which were subsequently mapped to the COM‐B framework. Results: Nineteen papers were included. Themes included training, awareness, embedding the process in norms and appreciating the value of the personal information documents. A broad range of barriers and facilitators was identified within each COM‐B domain. Conclusion: This framework provides a starting point for evidence‐informed initiatives to improve the use of personal information documents in the care of people with dementia. Patient and Public Contribution: This is a review of studies and did not involve patients or the public. Review results will guide evaluation of a local personal information document, which will be designed with input from the Dementia Champions Network (includes carers and other stakeholders). [ABSTRACT FROM AUTHOR]

Objective To conduct a systematic appraisal of the published literature reviews related to the impact of cancer on everyday life. This theme was identified as the top priority area for research by participants in the Macmillan Listening Study, which was the first UK-wide public consultation exercise to identify patients' priorities for cancer research. Search strategy The top priority area was divided into ten sub-themes, and a modified systematic review was undertaken for each sub-theme using electronic searches. Inclusion criteria Literature review papers were included if they were written in English, involved patients diagnosed ≥18 years, any cancer types and published between 2000 and 2006. Data extraction and synthesis Two thousand and two hundred and fifty-two potentially eligible papers were identified. Abstracts were read by the first author and selected for inclusion in the review. Twenty percentages of the papers were also read independently by other authors. Sixty-two review papers were finally selected. Main results The systematic appraisal revealed that some sub-themes of the patient-identified priority area (e.g., how to support family members of cancer patients) were under-researched, while other sub-themes (e.g., anxiety and depression experienced by cancer patients) had been explored to some extent. Certain areas of research interest to patients were found to have been explored; however, their significance was limited by the quality of the research. Conclusion The systematic appraisal highlights important areas for future research and the need for more effective dissemination of study findings to wider audiences, including service users. This study also indicates the need for further research to enhance the generalizability and/or significance of findings. [ABSTRACT FROM AUTHOR]

Background: There have been recent important advances in conceptualizing and operationalizing involvement in health research and health ‐ care service development. However, problems persist in the field that impact on the scope for meaningful involvement to become a routine – normalized – way of working in primary care. In this review, we focus on current practice to critically interrogate factors known to be relevant for normalization – definition, enrolment, enactment and appraisal. Method: Ours was a multidisciplinary, interagency team, with community representation. We searched EBSCO host for papers from 2007 to 2011 and engaged in an iterative, reflexive approach to sampling, appraising and analysing the literature following the principles of a critical interpretive synthesis approach and using Normalization Process Theory. Findings: Twenty ‐ six papers were chosen from 289 papers, as a purposeful sample of work that is reported as service user involvement in the field. Few papers provided a clear working definition of service user involvement. The dominant identified rationale for enrolling service users in primary care projects was linked with policy imperatives for co ‐ governance and emancipatory ideals. The majority of methodologies employed were standard health services research methods that do not qualify as research with service users. This indicates a lack of congruence between the stated aims and methods. Most studies only reported positive outcomes, raising questions about the balance or completeness of the published appraisals. Conclusion: To improve normalization of meaningful involvement in primary care, it is necessary to encourage explicit reporting of definitions, methodological innovation to enhance co ‐ governance and dissemination of research processes and findings. [ABSTRACT FROM AUTHOR]

Abstract: Background: Long‐term conditions (LTCs) in children require a high level of self‐management. Written action plans (WAPs) have been advocated to guide decision‐making and support self‐management but there is uncertainty about how WAPs “work” and what aspects are important for successful implementation. Objective: To review and synthesize existing qualitative evidence about the design and use of WAPs across childhood LTCs. Method: We undertook a systematic search of the literature (Medline, EMBASE, CiNAHL, PsycInfo, Web of science) from inception to May 2015; critically appraised included studies; and synthesized the findings, drawing on normalisation process theory. Results: 3473 titles were screened and 53 papers read in full. Nine studies (four key, two minor and three of poor quality) contributed to our analysis, predominantly work on asthma from the USA and in specialist settings. WAPs may help to alleviate user worry and boost confidence. Confidence to act was closely linked to feelings of responsibility and authority. The value and use of WAPs are determined by multiple factors, and varies between different user groups. Logistical challenges include sharing a WAP between different stakeholders and keeping it up to date. Colour coding and pictures may enhance the appeal and usability of WAPS. Conclusion: WAPs are complex interventions but our understanding of their use and value in children with LTCs is limited. WAPs need to meet the needs of users who have different requirements/levels of understanding and confidence according to their different roles. Future research into WAPs needs to be both disease and context‐specific. [ABSTRACT FROM AUTHOR]

Background Patient and public involvement ( PPI) is increasingly recognized as bringing a range of benefits to clinical and health services research. Recent systematic reviews have identified and synthesized many benefits (eg higher recruitment rates) and some costs (eg extra time need). Much of the literature focuses on PPI in long-term conditions rather than more acute health care in which the majority of microbiological research is undertaken. Objectives The aim was to identify the extent, quality and impact of PPI in antimicrobial drug development research. Objectives were to identify any relevant reporting of PPI in antimicrobial research; appraise the quality of reporting on PPI using recognized PPI reporting and critical appraisal tools; and extract and synthesize data on the impact of PPI. Search strategy A systematic review was undertaken with a search strategy based on four word groups ( PPI, patients, antimicrobial drug development and outcomes). Eight online databases were searched. Inclusion criteria English language publication, publication between 1996 and 2016 and studies describing PPI in antimicrobial drug development research. Main results No studies were found through online searching that met the search strategy and inclusion criteria. One relevant protocol paper with a brief mention of PPI was identified through expert recommendation. Commentary papers recommending PPI were identified through website searching and expert opinion. Discussion and conclusions Despite strong policy guidance encouraging PPI at the international and national levels, and anecdotal accounts of PPI taking place, evidence for the extent, quality and impact of PPI in antimicrobial drug development research has not yet appeared in the peer-reviewed literature. [ABSTRACT FROM AUTHOR]

Background: As people age, they are more likely to develop multiple long‐term conditions that require complicated medicine regimens. Safely self‐managing multiple medicines at home is challenging and how older people can be better supported to do so has not been fully explored. Aim: This study aimed to identify interventions to improve medicine self‐management for older people living at home and the aspects of medicine self‐management that they address. Design: A rapid review was undertaken of publications up to April 2022. Eight databases were searched. Inclusion criteria were as follows: interventions aimed at people 65 years of age or older and their informal carers, living at home. Interventions needed to include at least one component of medicine self‐management. Study protocols, conference papers, literature reviews and articles not in the English language were not included. The results from the review were reported through narrative synthesis, underpinned by the Resilient Healthcare theory. Results: Database searches returned 14,353 results. One hundred and sixty‐seven articles were individually appraised (full‐text screening) and 33 were included in the review. The majority of interventions identified were educational. In most cases, they aimed to improve older people's adherence and increase their knowledge of medicines. Only very few interventions addressed potential issues with medicine supply. Only a minority of interventions specifically targeted older people with either polypharmacy, multimorbidities or frailty. Conclusion: To date, the emphasis in supporting older people to manage their medicines has been on the ability to adhere to medicine regimens. Most interventions identify and target deficiencies within the patient, rather than preparing patients for problems inherent in the medicine management system. Medicine self‐management requires a much wider range of skills than taking medicines as prescribed. Interventions supporting older people to anticipate and respond to problems with their medicines may reduce the risk of harm associated with polypharmacy and may contribute to increased resilience in the system. Patient or Public Contribution: A patient with lived experience of medicine self‐management in older age contributed towards shaping the research question as well as the inclusion and exclusion criteria for this review. She is also the coauthor of this article. A patient advisory group oversaw the study. [ABSTRACT FROM AUTHOR]

Background: Patient‐reported outcome measures (PROMs) are questionnaires that collect health outcomes directly from the people who experience them. This review critically synthesizes information on generic and selected condition‐specific PROMs to describe trends and contemporary issues regarding their development, validation and application. Methods: We reviewed academic and grey literature on validated PROMs by searching databases, prominent websites, Google Scholar and Google Search. The identification of condition‐specific PROMs was limited to common conditions and those with a high burden of disease (eg cancers, cardiovascular disorders). Trends and contemporary issues in the development, validation and application of PROMs were critically evaluated. Results: The search yielded 315 generic and condition‐specific PROMs. The largest numbers of measures were identified for generic PROMs, musculoskeletal conditions and cancers. The earliest published PROMs were in mental health‐related conditions. The number of PROMs grew substantially between 1980s and 2000s but slowed more recently. The number of publications discussing PROMs continues to increase. Issues identified include the use of computer‐adaptive testing and increasing concerns about the appropriateness of using PROMs developed and validated for specific purposes (eg research) for other reasons (eg clinical decision making). Conclusions: The term PROM is a relatively new designation for a range of measures that have existed since at least the 1960s. Although literature on PROMs continues to expand, challenges remain in selecting reliable and valid tools that are fit‐for‐purpose from the many existing instruments. Patient or public contribution: Consumers were not directly involved in this review; however, its outcome will be used in programmes that engage and partner with consumers. [ABSTRACT FROM AUTHOR]

Introduction: As patient and public involvement (PPI) in research has become increasingly common, research‐based recommendations on its principles and impacts have been established. The specifics of conducting PPI are likely to differ when involving different groups. Family/informal carers for those with health conditions or disabilities have a lot to contribute to research, but instances of their involvement have yet to be reviewed. Objective: To systematically review and synthesize studies where family/informal carers have been involved in the research process, to develop an understanding of the benefits, barriers and facilitating factors. Methods: A search of five electronic databases was conducted using a combination of terms relating to carers, involvement and research. A grey literature search, expert consultation and hand‐searching were also used. Following screening, data extraction and quality assessment, a narrative synthesis incorporating thematic analysis was conducted. Findings: A total of 55 studies met the inclusion criteria, with diverse design and participatory approaches. Four themes were identified, relating to the outcomes, challenges, and practicalities of involving carers: (re) building relationships with carers; carers as equals not afterthoughts; carers have unique experiences; carers create change. Full involvement throughout the research was not always possible, due to barriers from the research world and responsibilities of the caring role. The literature demonstrated ways for carers to contribute in ways that suited them, maximizing their impact, while attending to relationships and power imbalances. Conclusion: By summarizing the reported instances of carer involvement in research, this review brings together different examples of how successful research partnerships can be built with carers, despite various challenges. Carers are a heterogeneous group, and participatory approaches should be tailored to specific situations. Wider understanding of the challenges of conducting empowering research with carers, and the resources required to address these, are needed. Patient and Public Involvement: The initial findings and themes were presented to a group of carers who had been involved in research and whose reflections informed the final synthesis. [ABSTRACT FROM AUTHOR]

Abstract: Background: Insulin pump therapy (IPT) is a technological advancement that has been developed to help people manage Type 1 diabetes (T1D). However, ways of managing diabetes requiring the implementation of health technologies bring new complexities and a need to understand the factors which enable people with T1D to incorporate a novel device. This new comprehension could provide an exemplar for people with long‐term conditions to incorporate new technologies more generally. Objective: To determine what influences the incorporation, adaptation and use of IPT into the everyday lives of people living with diabetes. Design: Critical interpretive synthesis (CIS) using systematic searches undertaken in 7 electronic databases of literature, published 2008 onwards. Results: A total of 4998 titles were identified, 274 abstracts reviewed, 39 full articles retrieved and 22 papers selected for analysis. Three themes emerged which were of relevance to the introduction and use of IPT; Tensions between expectations and experiences in adoption and early adaptation; Negotiation of responsibility and accessing support; Reflexivity, active experimentation and feedback. Conclusions: This CIS builds on earlier reviews on lived experiences of IPT. Novel insights are offered through examination of the experiences of pump users from children through to adults, their families and health‐care professionals. Expectations of what the device can do to improve self‐management impacts on the early stages of adoption as the reality of the technology requires substantial thought and action. Areas for intervention to improve IPT incorporation include establishing who is responsible for management tasks of the device and enabling navigation to further means of support and resources. [ABSTRACT FROM AUTHOR]

Aim: This study aimed to synthesize qualitative evidence on experiences of patients with atrial fibrillation (AF) during the course of diagnosis and treatment. We addressed three main questions: (a) What were the experiences of patients with AF during the course of diagnosis and treatment? (b) How did they respond to and cope with the disease? (c) What were the requirements during disease management? Design: In this study, qualitative evidence synthesis was performed using the Thomas and Harden method. Data Sources: Electronic databases, including PubMed, the Cochrane Library, Embase, Web of Science, Cumulative Index to Nursing and Allied Health Literature, the China Biomedical Database, the WanFang Database, Chinese National Knowledge Infrastructure and VIP, were searched. The databases were searched from inception to August 2021. Review Methods: Two researchers independently selected studies using qualitative assessment and review instruments for quality evaluation and thematic synthesis for the data analysis. Results: A total of 2627 studies were identified in the initial search and 15 studies were included. Five analytical themes were generated: 'Diagnosing AF'; 'The impact of AF on the patients'; 'Self‐reorientation in the therapeutic process'; 'Living with AF and QoL'; and 'External support to facilitate coping strategies.' Conclusions: Our findings point out unique experiences of patients across the trajectory of AF related to delayed diagnosis, feelings of nonsupport, disappointment of repeated treatment failure and multiple distress associated with unpredictable symptoms. Future research and clinical practice are expected to improve the quality of medical diagnosis and treatment, optimize administrative strategy and provide diverse health support for patients with AF. Impact: Understanding the experiences and needs of patients with AF in the entire disease process will inform future clinical practice in AF integrated management, which would be helpful in improving the professionalism and confidence of healthcare providers. In addition, our findings have implications for improving the effectiveness of AF diagnostic and treatment services. Patient or Public Contribution: This paper presents a review of previous studies and did not involve patients or the public. [ABSTRACT FROM AUTHOR]

Background: Previous research suggests that it would be useful to view health literacy as a set of 'distributed competencies', which can be found dispersed through the individual's social network, rather than an exclusively individual attribute. However, to date there is no focused exploration of how distributed health literacy has been defined, conceptualized or assessed in the peer‐reviewed literature. Aims: This systematic review aimed to explore: (1) definitions and conceptual models of distributed health literacy that are available from the peer‐reviewed literature; and (2) how distributed health literacy has been measured in empirical research. Methods: We searched MEDLINE, Embase, CINAHL, PsycInfo, Scopus, ERIC and Web of Science using truncated versions of the keywords 'literacy' and 'distributed' (within five words' distance). We collated the definitions and conceptual models of distributed health literacy, and report on how health literacy has been measured in empirical research studies. Findings related to distributed health literacy from included manuscripts were synthesized using thematic synthesis. Results: Of the 642 studies screened, 10 were included in this systematic review. The majority were empirical manuscripts reporting on qualitative research in one of five countries, with two reviews, one conceptual analysis and one quantitative study. Edwards' definition of distributed health literacy, which emphasizes the health literacy abilities, skills and practices of others that contribute to an individual's level of health literacy was widely applied in a variety of clinical and geographical settings. However, we did not identify any quantitative instruments which directly measured distributed health literacy. There was significant variability in questions used to explore the concept qualitatively, and discrepancies across studies in regard to (a) what constitutes distributed health literacy and what does not (e.g., general social support), and (b) the relationship between distributed health literacy and other constructs (e.g., public health literacy). Conclusion: Although there is a widely applied definition of distributed health literacy, our review revealed that the research space would benefit from the development of the concept, both theoretically for example via conceptual distinctions between distributed health literacy and other types of social support, and empirically for example through the development of a quantitative measurement instrument. Patient or Public Contribution: This paper is a systematic review and did not involve patients or the public. [ABSTRACT FROM AUTHOR]

Background: Multiple sclerosis (MS) is a chronic serious condition of uncertain course and outcome. There is relatively little literature on the experiences of people who live with a person with MS. They inhabit a locus of care that spans caring for (a relational act) and caring about (a moral stance, addressing fairness, compassion and justice) the person with MS. Methods: Using the theoretical lens of personhood, we undertook a scoping review and meta‐synthesis of the qualitative literature on the experiences of people who live with a person with MS, focusing on the nature of, and constraints upon, caring. Results: Of 330 articles, 49 were included in the review. We identified five themes. One of these—seeking information and support—reflects the political economy of care. Two are concerned with the moral domain of care: caring as labour and living with uncertainty. The final two themes—changing identities and adapting to life with a person with MS—point to the negotiation and reconstitution of personhood for both the person with MS and the people they live with. Conclusion: People with MS are embedded in relational social networks of partners, family and friends, which are fundamental in the support of their personhood; the people who live with them are 'co‐constituents of the patient's identity' assisting them to make sense of their world and self in times of disruption due to illness. Support services and health care professionals caring for people with MS are currently very much patient‐centred; young people in particular report that their roles are elided in the health system's interaction with a parent with MS. There is a need to look beyond the person with MS and recognize the relational network of people who surround them and broaden their focus to encompass this network. Patient and Public Involvement: Our research team includes four members with MS and two members with lived experience of living or working with people with MS. A third person (not a team member) who lives with a partner with MS provided feedback on the paper. [ABSTRACT FROM AUTHOR]

Background Health policies internationally advocate 'support for self-management', but it is not clear how the promise of the concept can be fulfilled. Objective To synthesize research into professional practitioners' perspectives, practices and experiences to help inform a reconceptualization of support for self-management. Design Critical interpretive synthesis using systematic searches of literature published 2000-2014. Findings We summarized key insights from 164 relevant papers in an annotated bibliography. The literature illustrates striking variations in approaches to support for self-management and interpretations of associated concepts. We focused particularly on the somewhat neglected question of the purpose of support. We suggest that this can illuminate and explain important differences between narrower and broader approaches. Narrower approaches support people to manage their condition(s) well in terms of disease control. This purpose can underpin more hierarchical practitioner-patient communication and more limited views of patient empowerment. It is often associated with experiences of failure and frustration. Broader approaches support people to manage well with their condition(s). They can keep work on disease control in perspective as attention focuses on what matters to people and how they can be supported to shape their own lives. Broader approaches are currently less evident in practice. Discussion and conclusion Broader approaches seem necessary to fulfil the promise of support for self-management, especially for patient empowerment. A commitment to enable people to live well with long-term conditions could provide a coherent basis for the forms and outcomes of support that policies aspire to. The implications of such a commitment need further attention. [ABSTRACT FROM AUTHOR]

Objective: To report on the findings of a systematic review which examined the experiences and views of older people aged 65 years and over on health professionals’ recognition of sexuality and sexual health and whether these aspects of the person are incorporated into care. Review methods: The review followed the methods laid out by the Joanna Briggs Institute. Eleven electronic databases were searched using the terms sexual*, aged, ageing/aging, attitudes and care in any health‐care setting. Only quantitative and qualitative research and opinion papers written in English and offering unique commentary published between January 2004 and January 2015 were eligible. Results: A total of 999 papers were initially identified and of these, 148 were assessed by two reviewers. Eighteen studies – seven quantitative, eight qualitative and three opinion papers – met the inclusion criteria and were appraised. The importance of sexuality to well‐being, language used, expressing sexuality, discomfort discussing sexuality, inadequate sexuality health education and treatment and deficient communication with health‐care professionals were all identified as significant issues in a range of settings. Fourteen categories and five syntheses summarize the 43 findings. Conclusions: Sexuality remains important for many older people; however, embarrassment, dissatisfaction with treatment, negative attitudes and seeming disinterest by health professionals can all inhibit discussions. Professionals and health‐care services need to adopt strategies and demonstrate characteristics which create environments that are more supportive of sexuality. Issues related to sexuality and sexual health should be able to be discussed without anxiety or discomfort so that older people receive optimal care and treatment. [ABSTRACT FROM AUTHOR]

Background: Mental illnesses are the leading causes of global disease burden. The impact is heightened in low‐ and middle‐income countries (LMICs) due to embryonic care systems and extant barriers to healthcare access. Understanding children and adolescents' conceptualisations of mental health wellbeing in these settings is important to optimize health prevention and promotion initiatives. Objective: To systematically review and synthesize children and adolescents' conceptualisations and views of mental health and wellbeing in LMICs. Design: Ten databases were systematically searched from inception to July 2020 and findings from included studies were synthesized. Results: Twenty papers met eligibility criteria comprising qualitative, quantitative and mixed methods studies. Children and adolescents identified aspects of mental health and wellbeing, including positive affect and outlook and having sufficient personal resources to face daily challenges. Identified factors recognized the importance of activating both kin and lay networks in supporting and maintaining wellbeing. Conceptualisations of mental health and wellbeing were varied and influenced by culture, developmental stage and gender. Discussion and Conclusions: Irrespective of environmental and sociocultural influences on concepts of wellbeing and mental health, children and adolescents in LMICs can conceptualise these constructs and identify how they pursue positive mental health and wellbeing important for developing age and culture‐appropriate community mental health strategies. Our review highlights the need to extend inquiry to wider developmental stages and both across and within specific populations in LMICs. Patient and Public Involvement: Initial results were presented at stakeholder workshops, which included children, adolescents, parents and health professionals held in Indonesia in January 2019 to allow the opportunity for feedback. [ABSTRACT FROM AUTHOR]

Background: People experiencing homelessness have an increased risk of hepatitis C virus (HCV) infection, with rates higher than the general population. However, their access to HCV diagnosis is limited and treatment uptake is low. Objectives: To identify and describe the barriers and facilitators for HCV screening and treatment for adults with lived experience of homelessness in highly developed countries. Methods: Bibliographic databases (Embase, MEDLINE, CINAHL and SocINDEX) and grey literature (Google, EThOS, the Health Foundation, Social Care Online, the World Health Organisation, Shelter, Crisis and Pathway) were searched. Two reviewers independently screened and appraised all studies. The Critical Appraisal Skills Programme tool and the Joanna Briggs Institute checklist were used. The analysis involved a three‐stage process: coding, theme generation and theme mapping under Penchansky and Thomas's modified access model. Results: Twelve papers/reports were included in the review. Several interacting factors influence access of people with lived experience of homelessness to HCV testing and treatment. Some mirror those identified for the general population. The precarious conditions associated with the lived experience of homelessness along with the rigidity of hospital settings and lack of awareness emerged as dominant barriers. Flexibility, outreach, effective communication, tailoring and integration of services were found to be important facilitators. Evidence from Black, Asian and minority ethnic groups is limited. Conclusions: People experiencing homelessness face multiple barriers in accessing and completing HCV treatment, relating to both their lived experience and characteristics of health systems. Although some barriers are readily amenable to change, others are more difficult to modify. The facilitators identified could inform future targeted measures to improve HCV diagnosis and treatment for people experiencing homelessness. Research is warranted into successful models to promote screening, diagnosis and treatment. Patient or Public Contribution: Our team includes a peer advocate, a hepatology nurse and a community volunteer, all with significant experience in promoting and engaging in HCV care and outreach for people experiencing homelessness. They contributed to the protocol, interpretation and reporting of the review findings. [ABSTRACT FROM AUTHOR]

Background: Research funding bodies have significantly increased emphasis on the need for public involvement in research with the requirement to evidence effective methods and approaches to achieving this. Specific definitions and approaches within published research remain tokenistic and vague. Objective: The concept analysis explores and clarifies the nature and meaning of public involvement in health and social sciences research and identifies operational definitions which can be used to guide, develop and evaluate public involvement in research activity. Search strategy: A literature search was conducted using online databases. Systematic literature reviews and broader studies on the impact of PPI were included as was grey literature such as guidance from INVOLVE and research funding bodies. Limits were set to papers published in the last 10 years and in the English language. A concept analysis framework adapted from Rodgers (Concept Development in Nursing: Foundations, Techniques and Applications. London, UK: Saunders; 2000) and Walker and Avant (Strategies for Theory construction in Nursing. Boston, MA: Pearson Prentice Hall; 2005) was applied. Main results: Five operational definitions were developed from the concept analysis: undefined involvement; targeted consultation; embedded consultation; co‐production; and user‐led research. Typical examples of each approach were identified from the literature. Defining attributes included having clear and agreed meaning and purpose for any involvement; reciprocal relationships; and value and recognition of the expertise of all those involved. Conclusions: The authors argue the need for researchers to more explicitly incorporate and evaluate details of approaches used. Impact of public involvement on a research study should be identified when reporting on findings to prevent tokenistic practices where involvement is viewed as secondary to the core research process. [ABSTRACT FROM AUTHOR]

Introduction: Service user involvement is increasingly considered essential in mental health service development and delivery. However, the impact of this involvement on services is not well documented. We aimed to understand how user involvement shapes service commissioning, development and delivery, and if/how this leads to improved service‐level outcomes. Methods: A systematic review of electronic databases (MEDLINE, PsycINFO, CINAHL and EMBASE databases) was undertaken in June and November 2022 for studies that incorporated patient involvement in service development, and reported service‐level outcomes. Included studies were synthesised into a logic model based on inputs (method of involvement), activities (changes to service) and outputs (indicators of improvement). PRISMA (Preferred Reporting Items for Systematic Reviews and Meta‐Analysis) guidelines were followed when conducting this review. Results: From 10,901 records identified, nine studies were included, of which six were judged to have used co‐production or co‐design approaches. Included studies described service user involvement ranging from consultation to co‐production. We identified a range of outputs associated with service user involvement in service planning and delivery, and reported these in the form of a logic model. These service‐level outputs included improved treatment accessibility, increased referrals and greater service user satisfaction. Longer‐term outcomes were rarely reported and hence it was difficult to establish whether outputs are sustained. Conclusion: More extensive forms of involvement, namely, co‐design and co‐production, were associated with more positive and substantial outputs in regard to service effectiveness than more limited involvement methods. However, lived experience contributions highlighted service perception outputs may be valued more highly by service users than professionals and therefore should be considered equally important when evaluating service user involvement. Although evidence of longer term outcomes was scarce, meaningful involvement of service users in service planning and delivery appeared to improve the quality of mental health services. Patient or Public Contribution: Members of a lived experience advisory panel contributed to the review findings, which were co‐authored by a peer researcher. Review findings were also presented to stakeholders including service users and mental health professionals. [ABSTRACT FROM AUTHOR]

Background: Health‐care providers increasingly have to discuss uncertainty with patients. Awareness of uncertainty can affect patients variably, depending on how it is communicated. To date, no overview existed for health‐care professionals on how to discuss uncertainty. Objective: To generate an overview of available recommendations on how to communicate uncertainty with patients during clinical encounters. Search strategy: A scoping review was conducted. Four databases were searched following the PRISMA‐ScR statement. Independent screening by two researchers was performed of titles and abstracts, and subsequently full texts. Inclusion criteria: Any (non‐)empirical papers were included describing recommendations for any health‐care provider on how to orally communicate uncertainty to patients. Data extraction: Data on provided recommendations and their characteristics (eg, target group and strength of evidence base) were extracted. Recommendations were narratively synthesized into a comprehensible overview for clinical practice. Results: Forty‐seven publications were included. Recommendations were based on empirical findings in 23 publications. After narrative synthesis, 13 recommendations emerged pertaining to three overarching goals: (a) preparing for the discussion of uncertainty, (b) informing patients about uncertainty and (c) helping patients deal with uncertainty. Discussion and conclusions: A variety of recommendations on how to orally communicate uncertainty are available, but most lack an evidence base. More substantial research is needed to assess the effects of the suggested communicative approaches. Until then, health‐care providers may use our overview of communication strategies as a toolbox to optimize communication about uncertainty with patients. Patient or public contribution: Results were presented to stakeholders (physicians) to check and improve their practical applicability. [ABSTRACT FROM AUTHOR]

Background: Evaluations of health interventions for Indigenous peoples rarely report outcomes that reflect participant and community perspectives of their experiences. Inclusion of such data may provide a fuller picture of the impact of health programmes and improve the usefulness of evaluation assessments. Aim: To describe stakeholder perspectives and experiences of the implementation and impact of Indigenous health programmes. Methods: We conducted a systematic review of qualitative studies evaluating complex health interventions designed for Indigenous communities in high‐income countries. We searched 6 electronic databases (through to January 2020): MEDLINE, PreMEDLINE, Embase, PsycINFO, EconLit and CINAHL and hand‐searched reference lists of relevant articles. Results: From 28 studies involving 677 stakeholders (mostly clinical staff and participants), six main themes were identified: enabling engagement, regaining control of health, improving social health and belonging, preserving community and culture, cultivating hope for a better life, and threats to long‐term programme viability. Conclusion: The prominence of social, emotional and spiritual well‐being as important aspects of the health journey for participants in this review highlights the need to reframe evaluations of health programmes implemented in Indigenous communities away from assessments that focus on commonly used biomedical measures. Evaluators, in consultation with the community, should consistently assess the capacity of health professionals to meet community needs and expectations throughout the life of the programme. Evaluations that include qualitative data on participant and community‐level outcomes can improve decision‐makers' understanding of the impact that health programmes have on communities. Patient or public contribution: This paper is a review of evaluation studies and did not involve patients or the public. [ABSTRACT FROM AUTHOR]

Current orthodoxy suggests that patients need to be provided with full information about their care and that treatment options should be discussed with patients and family members. This imperative is especially challenging when there is a lack of consensus about treatment effectiveness and equivocacy over different types of interventions. In the case of prostate cancer, evidence is contested as to the efficacy of different treatments. Thus, involving patients and their family members in treatment choices is complex and little is known about how patients and their partners process these decisions when there is uncertainty about different outcomes. This paper has reviewed the literature on the way couples approach such decision making in relation to treatment for prostate cancer. A meta-ethnographic synthesis of published qualitative papers that focused on the influences on patients', and their partners' treatment decision making for prostate cancer, was conducted in order to identify and understand barriers and facilitators which impact on this process. Our synthesis indicates that the couples' relationship 'dynamic' provides a contextual background against which treatment decisions are negotiated and made. We propose that the findings from this synthesis can enhance the potential for shared decision making for patients, and their partners, when facing a treatment decision for prostate cancer. By understanding the couples' relationship dynamic pre-diagnosis, clinicians may be able to tailor the communication and information provision to both patients and their partners, providing a personalized approach to treatment decision making. [ABSTRACT FROM AUTHOR]

Background: Patient and public engagement in paediatric health‐care decision making is under‐researched, and there is a lack of systematically reviewed literature in this area. Objective: To examine the extent, range and nature of published research investigating the engagement of children/youth, families and the public in paediatric service improvement, to summarize key aspects of the research identified and to identify gaps to help inform future research needs. Methods: Literature was sought in MEDLINE, EMBASE, PsycINFO and CINAHL. Eligible articles presented research focused on patient, family and public engagement strategies in the paediatric health‐care setting. Two reviewers extracted and charted data and analysed findings using a descriptive numerical summary analysis and a thematic analysis. Results: From 4331 articles, 21 were eligible. Most were from the United States. The majority of studies were undertaken in hospital settings and used quantitative methods. Various patient and public engagement strategies/interventions were examined, including shared decision‐making tools, questionnaires, youth councils/family advisory groups, patient portals and online networks. Most of the studies examined child/youth/parent satisfaction, with fewer investigating treatment outcomes or service improvement. The majority of studies investigated an engagement strategy at the 'individual treatment' level of engagement. Regarding the continuum of engagement, most of the studies were at either the 'consultation' or 'involvement' stage. Conclusion: Future research needs to focus on the investigation of engagement strategies delivered in primary care, and the use of more qualitative and mixed methods approaches is recommended. There is a gap in the area of engagement strategies directed towards 'service design and resources' and 'macro/policy' levels. [ABSTRACT FROM AUTHOR]

Background: Showing how engagement adds value for all stakeholders can be an effective motivator for broader implementation of patient engagement. However, it is unclear what methods can best be used to evaluate patient engagement. This paper is focused on ways to evaluate patient engagement at three decision‐making points in the medicines research and development process: research priority setting, clinical trial design and early dialogues with regulators and health technology assessment bodies. Objective: Our aim was to review the literature on monitoring and evaluation of patient engagement, with a focus on indicators and methods. Search strategy and inclusion criteria: We undertook a scoping literature review using a systematic search, including academic and grey literature with a focus on evaluation approaches or outcomes associated with patient engagement. No date limits were applied other than a cut‐off of publications after July 2018. Data extraction and synthesis: Data were extracted from 91 publications, coded and thematically analysed. Main results: A total of 18 benefits and 5 costs of patient engagement were identified, mapped with 28 possible indicators for their evaluation. Several quantitative and qualitative methods were found for the evaluation of benefits and costs of patient engagement. Discussion and conclusions: Currently available indicators and methods are of some use in measuring impact but are not sufficient to understand the pathway to impact, nor whether interaction between researchers and patients leads to change. We suggest that the impacts of patient engagement can best be determined not by applying single indicators, but a coherent set of measures. [ABSTRACT FROM AUTHOR]

Introduction: This realist literature review, regarding active patient involvement in healthcare quality improvement (QI), seeks to identify possible mechanisms that contribute to success or failure. Furthermore, the paper outlines key considerations for organizing and supporting patient involvement in healthcare QI efforts. Methods: Two literature searches were performed. Altogether, 1204 articles from a healthcare context were screened, focusing on improvement efforts that involve patients, healthcare professionals and/or managers and leaders. Among these, 107 articles fulfilled the chosen study selection criteria and were further analysed. Eighteen articles underwent a full realist review. In the realist synthesis, context‐mechanism‐outcome configurations were articulated as middle‐range theories and organized thematically to generate a program theory on how active patient involvement in QI efforts might work. Results: The articles exhibited a diversity of patient involvement approaches at different levels of healthcare organizations. To be successful, organizations' support of QI efforts that actively involved patients tailored the QI efforts to their context to achieve the desired outcomes, and involved the relevant microsystem members. Furthermore, it promoted interaction and partnership within the microsystem, and supported the behavioural change that follows. Conclusion: This realist synthesis generates a program theory for active patient involvement in QI efforts; active patient involvement can be a tool (resource), if tailored for interaction and partnership (reasoning), that leads to behaviour change (outcome) within healthcare QI efforts. The theory explains essential resource and reasoning mechanisms, and outcomes that together form guidance for healthcare organizations when managing active patient involvement in QI efforts. [ABSTRACT FROM AUTHOR]

Background and Objective: Acquired brain injury (ABI) can result in considerable life changes. Having choice and control over daily life is valued by people following ABI. This meta‐synthesis will analyse and integrate international research exploring perspectives of choice and control in daily life following ABI. Methods: Databases were searched from 1980 to 13 January 2022 for eligible qualitative studies. After duplicates were removed, 22,768 studies were screened by title and abstract, and 241 studies received full‐text assessment with 56 studies included after pearling. Study characteristics and findings were extracted that related to personal perspectives on choice and control by people with an ABI (including author interpretation and quotes). Data from each study were coded and then segments of coded data across the studies were compared to create multiple broad categories. Findings: Findings were then reduced from categories into 3 overarching themes with 12 subthemes. These themes were: (1) feeling like a second‐class citizen; (2) reordering life and (3) choosing a path. Participants with an ABI tussled between their feelings of loss following brain injury and their thinking about how they start to regain control and become agents of their own choices. The themes describe their sense of self, their changed self and their empowered self in relation to 'choice and control'. Conclusions: Re‐engaging with choice and control after ABI is dynamic and can be challenging. Health professionals and supporters need to facilitate a gradual and negotiated return to agency for people following ABI. A sensitive and person‐centred approach is needed that considers the readiness of the person with ABI to reclaim choice and control at each stage of their recovery. Clear service or process indicators that are built on lived experience research are needed to facilitate changes in service delivery that are collaborative and inclusive. Patient or Public Contribution: This review included the voices of 765 people living with ABI and was conducted by a diverse team of allied health professionals with practice knowledge and research experience with people following ABI. Twenty‐nine of the 56 included studies had participants contributing to their design or analysis. [ABSTRACT FROM AUTHOR]

Background: Patient ‐ centred care has been advocated as a key component of high ‐ quality patient care, yet its meanings and related actions have been difficult to ascertain. Objective: To map the use of different terms related to the process of giving patients a starring role in their own care and clarify the possible boundaries between terms that are often mixed. Methods: A literature search was conducted using different electronic databases. All records containing the search terms ‘patient engagement’, ‘patient activation’, ‘patient empowerment’, ‘patient involvement’, ‘patient adherence’, ‘patient compliance’ and ‘patient participation’ were collected. Identified literature was then analysed using the Statistical Package for Social Science (SPSS). The number of yearly publications, most productive countries, cross ‐ concepts articles and various scientific fields dealing with the multidisciplinary concepts were identified. Results: Overall, 58 987 papers were analysed. Correspondence analysis revealed three temporal trends. The first period (2002–2004) focused on compliance and adherence, the second period (2006–2009) focused on the relationship between participation and involvement, and the third one (2010–2013) emphasized empowerment. Patient activation and patient engagement followed the temporal development trend connected to the ‘immediate future’. Discussion and conclusions: The bibliometric trend suggests that the role of patient in the health ‐ care system is changing. In the last years, the patient was viewed as a passive receptor of medical prescription. To date, the need to consider patients as active partners of health ‐ care planning and delivery is growing. In particular, the term patient engagement appears promising, not only for its increasing growth of interest in the scholarly debate, but also because it offers a broader and better systemic conceptualization of the patients’ role in the fruition of health care. To build a shared vocabulary of terms and concepts related to the active role of patients in the health ‐ care process may be envisaged as the first operative step towards a concrete innovation of health ‐ care organizations and systems. [ABSTRACT FROM AUTHOR]

Objective: To synthesise the views of patients on patient‐held records (PHR) and to determine from a patient's perspective the effectiveness and any benefits or drawbacks to the PHR. Design: Systematic review and thematic synthesis of qualitative studies, which investigate the perspective of patients on the effectiveness of the PHR. Data sources: Medline, CINAHL, PsychINFO, PubMed, Cochrane. Review methods: Systematic review of literature relevant to the research question and thematic synthesis involving line by line coding of the quotations from participants and the interpretations of the findings offered by authors. Results: Ten papers that reported the experiences of 455 patients were included in the thematic synthesis. Five studies focused on cancer care, two on mental health, one on antenatal care, one on chronic disease and one on learning disability. The completeness of reporting was variable. Three main themes were identified: (i) practical benefits of the PHR (having a record of one's condition, an aide memoire, useful information source and tool for sharing information across the health system); (ii) psychological benefits of the PHR (empowered to ask questions, a place to record thoughts and feelings and feeling in control); and (iii) drawbacks to the PHR (PHR imposes unwanted responsibility and ineffectiveness). Conclusions: The effectiveness of the PHR is largely dependent upon uptake across the health system from patients and health‐care providers alike. Robust qualitative studies are needed, which offer more complete reporting and examine what patients want and need from a PHR. [ABSTRACT FROM AUTHOR]

Background: Quality improvement (QI) programs based on person‐centred outcome measures (PCOMs) play an important role in promoting optimal palliative care. However, routine use of PCOMs has been slow and difficult to implement, including within QI programs. Objective: This study aimed to identify implementation strategies that support the implementation of PCOMs as routine practice in hospital‐based palliative care, as well as the implementation theories, models and frameworks (TMFs) guiding the design of these implementation strategies. Methods: A scoping review was conducted in accordance with the Joanna Briggs Institute (JBI) Scoping Review framework. Four databases (Medline, CINAHL, Scopus and PubMed) were systematically searched for literature published between 1 January 1990 and 8 March 2024. Results: One hundred and fifteen unique implementation strategies, identified from 11 included studies, were mapped onto the 73 Expert Recommendations for Implementing Change (ERIC) discrete implementation strategies, covering 52% of the ERIC strategies. The most commonly used categories were train and educate stakeholders, and support clinicians, followed by develop stakeholder interrelationships and use evaluation and iterative strategies. Three key themes emerged: what to do; how to do it; and who to do it with. Only four studies employed TMFs to guide the design of the implementation strategies in this review. Conclusions: To promote the implementation of PCOM‐based QI programs, strategies should be developed based on identified/potential barriers and facilitators by using rigorous TMFs. The components of the implementation strategies must be reported transparently and consistently to enable replication and measurement in future research and practice. Patient and Public Contribution: This scoping review does not directly involve patients or the general public in its design or execution. However, it is part of an implementation study aimed at integrating the Palliative Care Outcome Collaboration (PCOC) model into routine clinical practice at a cancer hospital in China. Before the formal implementation, palliative care professionals from this hospital highlighted the need for a comprehensive analysis of existing evidence to support the effective adoption of the PCOC model in their specific clinical setting. [ABSTRACT FROM AUTHOR]

Abstract: Objective: To synthesize experiences of the patient complaints process for patients and health‐care professionals to identify facilitators and barriers in the successful implementation of patient complaints processes. This will assist the development of cultural change programmes, enabling complaints managers to incorporate stakeholder perspectives into future care. Design: Systematic literature search and meta‐ethnography, comprising reciprocal syntheses of “patient” and “professional” qualitative studies, combined to form a “line‐of‐argument” embodying both perspectives. Data sources: MEDLINE, CINAHL and PsycINFO (database inception to April 2015) were searched to identify international literature in primary and secondary health‐care settings, involving qualitative data collection and analysis. Further studies were identified from hand‐searching relevant journals, contacting authors, article reference lists and Google Scholar. Results: A total of 13 papers, reporting 9 studies from the United Kingdom, Sweden, Australia and New Zealand, were included in the synthesis. Facilitators and barriers to the successful implementation of patient complaints processes were identified across the perspectives of both patients and health‐care professionals. Patients sought to individualize the complaints process by targeting specific professionals who engaged in practices that undermined the identity of patients. In contrast, professionals obscured their own individualism through maintaining a collective identity and withholding personal judgement in relation to patient complaints. Conclusions: Complainants recognized health‐care professionals as bearers of individual accountability for unsatisfactory care, in opposition to the stance of collective responsibility endorsed by professionals. Implementation of patient complaints processes must reconcile the need for individualized resolution, whilst striving to improve the future provision of health care through a collaborative approach between patients and professionals. [ABSTRACT FROM AUTHOR]

Abstract: Background: The United Kingdom has been at the forefront of enhancing pharmacist roles and community pharmacy services, particularly over the past decade. However, patient and public awareness of community pharmacy services has been limited. Objective: To identify and synthesize the research literature pertaining to patient and public perspectives on: existing community pharmacy services, extended pharmacist roles and strategies to raise awareness of community pharmacy services. Search strategy: Systematic search of 8 electronic databases; hand searching of relevant journals, reference lists and conference proceedings. Inclusion criteria: UK studies investigating patient or public views on community pharmacy services or pharmacist roles from 2005 to 2016. Data extraction and synthesis: Data were extracted into a grid and subjected to narrative synthesis following thematic analysis. Main results: From the 3260 unique papers identified, 30 studies were included. Manual searching identified 4 additional studies. Designs using questionnaires (n = 14, 41%), semi‐structured interviews (n = 8, 24%) and focus groups (n = 6, 18%) made up the greatest proportion of studies. Most of the studies (n = 28, 82%) were published from 2010 onwards and covered perceptions of specific community pharmacy services (n = 31). Using a critical appraisal checklist, the overall quality of studies was deemed acceptable. Findings were grouped into 2 main themes “public cognizance” and “attitudes towards services” each with 4 subthemes. Discussion and conclusions: Patients and the public appeared to view services as beneficial. Successful integration of extended pharmacy services requires pharmacists’ clinical skills to be recognized by patients and physicians. Future research should explore different approaches to increase awareness. [ABSTRACT FROM AUTHOR]

Background The impact of delayed discharge on patients, health-care staff and hospital costs has been incompletely characterized. Aim To systematically review experiences of delay from the perspectives of patients, health professionals and hospitals, and its impact on patients' outcomes and costs. Methods Four of the main biomedical databases were searched for the period 2000-2016 (February). Quantitative, qualitative and health economic studies conducted in OECD countries were included. Results Thirty-seven papers reporting data on 35 studies were identified: 10 quantitative, 8 qualitative and 19 exploring costs. Seven of ten quantitative studies were at moderate/low methodological quality; 6 qualitative studies were deemed reliable; and the 19 studies on costs were of moderate quality. Delayed discharge was associated with mortality, infections, depression, reductions in patients' mobility and their daily activities. The qualitative studies highlighted the pressure to reduce discharge delays on staff stress and interprofessional relationships, with implications for patient care and well-being. Extra bed-days could account for up to 30.7% of total costs and cause cancellations of elective operations, treatment delay and repercussions for subsequent services, especially for elderly patients. Conclusions The poor quality of the majority of the research means that implications for practice should be cautiously made. However, the results suggest that the adverse effects of delayed discharge are both direct (through increased opportunities for patients to acquire avoidable ill health) and indirect, secondary to the pressures placed on staff. These findings provide impetus to take a more holistic perspective to addressing delayed discharge. [ABSTRACT FROM AUTHOR]

Background Members of the public are increasingly being invited to become members of a variety of different panels and boards. Objective This study aimed to systematically search the literature to identify studies relating to support or training provided to members of the public who are asked to be members of an interview panel. Search strategy A systematic search for published and unpublished studies was carried out from June to September 2015. The search methods included electronic database searching, reference list screening, citation searching and scrutinizing online sources. Inclusion criteria We included studies of any design including published and unpublished documents which outlined preparation or guidance relating to public participants who were members of interview panels or representatives on other types of panels or committees. Data synthesis Results were synthesised via narrative methods. Main results Thirty-six documents were included in the review. Scrutiny of this literature highlighted ten areas which require consideration when including members of the public on interview panels: financial resources; clarity of role; role in the interview process; role in evaluation; training; orientation/induction; information needs; terminology; support; and other public representative needs such as timing, accessibility and support with information technology. Discussion and conclusions The results of the review emphasize a range of elements that need to be fully considered when planning the involvement of public participants on interview panels. It highlights potential issues relating to the degree of involvement of public representatives in evaluating/grading decisions and the need for preparation and on-going support. [ABSTRACT FROM AUTHOR]

Background: A growing body of research is addressing the process and science of engaging people with lived experience (PWLE) of mental health challenges and other psychiatric conditions, and family members, in research activities. Objective: This scoping review of reviews synthesizes literature reviews on the engagement of PWLE and family members in research across the field of psychiatry. Method: Systematic searches were conducted in seven bibliographic databases. Records were independently screened first at the title and abstract level, then at the full‐text level. Included were any literature synthesis studies published in English, French, or Spanish in any given year, focusing on the engagement of PWLE and/or family members in research within psychiatry. Twenty records were included. Data were extracted in a spreadsheet and codebook thematic analysis was used across the body of articles to synthesize the findings. Results: Aspects of PWLE engagement have been synthesized in 20 review articles reviewing 376 articles across psychiatry as a whole and several subpopulations, including youth mental health, dementia, neurodevelopmental disorders, people who use drugs, and forensic mental health. Information specific to family engagement is lacking. Barriers, facilitators, and positive impacts of PWLE engagement have been widely reported across domains of research, with a considerable degree of consensus across subpopulations. Some negative impacts and reporting challenges have also been identified. Discussion: This scoping review of reviews provides an overarching understanding of the current state of the science of PWLE and family engagement across psychiatry research. The findings can inform future research practices enriched with a genuine and effective engagement with PWLE and families. Patient or Public Contribution: The authorship team includes members with intersecting lived experience and academic identities. Additional lived experience engagement was not conducted as part of this review. [ABSTRACT FROM AUTHOR]