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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]

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]

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]

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: 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: 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]

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]

Objectives: To identify, describe and synthesise the views and experiences of adults living with asthma regarding shared decision‐making (SDM) in the existing qualitative literature Methods: We conducted a comprehensive search of 10 databases (list databases) from inception until September 2023. Screening was performed according to inclusion criteria. Tools from the Joanna Briggs lnstitute were utilised for the purposes of data extraction and synthesis in this study. The data extraction process in this study employed the Capability, Opportunity and Motivation Model of Behaviour (COM‐B model) as a framework, and a pragmatic meta‐aggregative approach was employed to synthesise the collected results. Results: Nineteen studies were included in the metasynthesis. Three synthesised themes were identified: the capability of people living with asthma, the opportunities of people living with asthma in SDM, and the motivation of the people living with asthma in SDM. Conclusions: We have identified specific factors influencing people living with asthma engaging in SDM. The findings of this study can serve as a basis for the implementation of SDM in people living with asthma and provide insights for the development of their SDM training programs. The ConQual score for the synthesised findings was rated as low. To enhance confidence, future studies should address dependability and credibility factors. Practice Implications: This review contemplates the implementation of SDM from the perspective of people living with asthma, with the aim of providing patient‐centred services for them. The results of this review can benefit the implementation of SDM and facilitate information sharing. It offers guidance for SDM skills training among adults living with asthma, fosters a better doctor–patient relationship and facilitates consensus in treatment decisions, thereby enabling personalised and tailored medical care. Patient or Public Contribution: Three nursing graduate students participated in the data extraction and integration process, with two students having extensive clinical experience that provided valuable insights for the integration. [ABSTRACT FROM AUTHOR]

Background: There is a growing momentum around the world to foster greater opportunities for the involvement of mental health service users in their care and treatment planning. In‐principle support for this aim is widespread across mental healthcare professionals. Yet, progress in mental health services towards this objective has lagged in practice. Objectives: We conducted a systematic review of quantitative, qualitative and mixed‐method research on interventions to improve opportunities for the involvement of mental healthcare service users in treatment planning, to understand the current research evidence and the barriers to implementation. Methods: Seven databases were searched and 5137 articles were screened. Articles were included if they reported on an intervention for adult service users, were published between 2008 and October 2023 and were in English. Evidence in the 140 included articles was synthesised according to the JBI guidance on Mixed Methods Systematic Reviews. Results: Research in this field remains exploratory in nature, with a wide range of interventions investigated to date but little experimental replication. Overarching barriers to shared and supported decision‐making in mental health treatment planning were (1) Organisational (resource limitations, culture barriers, risk management priorities and structure); (2) Process (lack of knowledge, time constraints, health‐related concerns, problems completing and using plans); and (3) Relationship barriers (fear and distrust for both service users and clinicians). Conclusions: On the basis of the barriers identified, recommendations are made to enable the implementation of new policies and programs, the designing of new tools and for clinicians seeking to practice shared and supported decision‐making in the healthcare they offer. Patient or Public Contribution: This systematic review has been guided at all stages by a researcher with experience of mental health service use, who does not wish to be identified at this point in time. The findings may inform organisations, researchers and practitioners on implementing supported decision‐making, for the greater involvement of people with mental ill health in their healthcare. [ABSTRACT FROM AUTHOR]

Background: Patient and Public Involvement (PPI) in research aims to improve the quality, relevance and appropriateness of research. PPI has an established role in clinical research where there is evidence of benefit, and where policymakers and funders place continued emphasis on its inclusion. However, for preclinical research, PPI has not yet achieved the same level of integration. As more researchers, including our team, aim to include PPI in preclinical research, the development of an evidence‐based approach is important. Therefore, this scoping review aimed to identify and map studies where PPI has been used in preclinical research and develop principles that can be applied in other projects. Methods: A scoping review was conducted to search the literature in Medline (PubMed), EMBASE, CINAHL, PsycInfo and Web of Science Core Collection to identify applied examples of preclinical PPI. Two independent reviewers conducted study selection and data extraction separately. Data were extracted relating to PPI in terms of (i) rationale and aims, (ii) approach used, (iii) benefits and challenges, (iv) impact and evaluation and (v) learning opportunities for preclinical PPI. Findings were reviewed collaboratively by PPI contributors and the research team to identify principles that could be applied to other projects. Results: Nine studies were included in the final review with the majority of included studies reporting PPI to improve the relevance of their research, using approaches such as PPI advisory panels and workshops. Researchers report several benefits and challenges, although evidence of formal evaluation is limited. Conclusion: Although currently there are few examples of preclinical research studies reporting empirical PPI activity, their findings may support those aiming to use PPI in preclinical research. Through collaborative analysis of the scoping review findings, several principles were developed that may be useful for other preclinical researchers. Patient or Public Contribution: This study was conducted as part of a broader project aiming to develop an evidence base for preclinical PPI that draws on a 5‐year preclinical research programme focused on the development of advanced biomaterials for spinal cord repair as a case study. A PPI Advisory Panel comprising seriously injured rugby players, clinicians, preclinical researchers and PPI facilitators collaborated as co‐authors on the conceptualization, execution and writing of this review, including refining the findings into the set of principles reported here. [ABSTRACT FROM AUTHOR]

Objective: To synthesize the literature on the views and experiences of patients/family members and health‐care professionals (HCPs) on the disclosure of adverse events. Methods: Systematic review of qualitative studies. Searches were conducted in MEDLINE, Embase, PubMed, CINAHL and PsycINFO. Study quality was evaluated using the Critical Appraisal Skills Programme tool. Qualitative data were analysed using a meta‐ethnographic approach, comprising reciprocal syntheses of 'patient' and 'health‐care professional' studies, combined to form a lines‐of‐argument synthesis embodying both perspectives. Results: Fifteen studies were included in the final syntheses. The results highlighted that there is a difference in attitudes and expectations between patients and HCPs regarding the disclosure conversation. Patients/family members expressed a need for information, the importance of sincere regret and a promise of improvement. However, HCPs faced several barriers, which hindered appropriate disclosure practices. These included difficulty of disclosure in a blame culture, avoidance of litigation, lack of skills on how to conduct disclosure and inconsistent guidance. A lines‐of‐argument synthesis is presented that identified both the key elements of an ideal disclosure desired by patients and the facilitators for HCPs, which can increase the likelihood of this taking place. Conclusions: Although patients/family members and HCPs both advocate disclosure, several barriers prevent HCPs from conducting disclosure effectively. Both groups have different needs for disclosure. To meet patients' requirements, training on disclosure for HCPs and the development of an open, transparent culture within organizations are potential areas for intervention. [ABSTRACT FROM AUTHOR]

Background: Although narratives have been found to affect decisions about preventive behaviours, including participation in cancer screening, the underlying mechanisms of narratives remain unclear. Objective: The purpose of this study was to summarize and synthesize existing literature on narrative interventions in the context of colorectal cancer screening. Our main research question was as follows: How, when and for whom do narratives work context of decision making about colorectal cancer screening participation? Methods: We undertook a realist review to collect evidence on narratives in the context of colorectal cancer screening. A search of the literature was performed in Embase, MEDLINE/PubMed, Cinahl and PsycINFO. We included empirical evaluations (qualitative or quantitative) of narrative interventions. In total, 15 studies met the inclusion criteria. A content‐based taxonomy of patient narrative types in decision aids formed the basis for our initial programme theory. Main result: We identified four mechanisms: (a) process narratives that address perceived barriers towards screening lead to improved affective forecasting, (b) experience narratives that demonstrate the screening procedure lead to increased self‐efficacy, (c) experience narratives that depict experiences from similar others lead to more engagement and (d) outcome narratives that focus on outcomes of colorectal cancer (CRC) screening decision decrease or increase fear of colorectal cancer. The evidence was limited on which narrative type may facilitate or bias informed decision making in colorectal cancer screening. Discussion and conclusion: The findings indicate the importance of more detailed descriptions of narrative interventions in order to understand how mechanisms may facilitate or bias informed decision making in colorectal cancer screening. [ABSTRACT FROM AUTHOR]

The article presents a study which aims to utilize a systematic review and environmental scan to derive an evidence-based framework for patient and service user engagement (PSUE). The researchers detail the study design using a metanarrative systematic review and environmental scan. It implies that the proposed framework provides a standard structure and language for reporting and indexing to support an effective and optimized comparative PSUE.