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Background: This study presents findings on the impact of providing patients with their implantable device data on patients' satisfaction, engagement, healthcare utilization, and provider's perceptions of this practice. Remote monitoring of implantable cardioverter defibrillators (ICDs) improves patient care through timely delivery of ICD data to the clinic. However, patients usually do not receive their ICD data. Providers are concerned that messaging patients with their device data could increase clinical workload. Methods: To evaluate the impact of sharing ICD data summary through the patient portal, 128 patients were randomized into two groups. Group A and B received their data through the patient portal and postal mail, respectively. Data were collected through surveys and medical record reviews. Forty‐eight providers also completed a survey. Results: At the end of the study, at least two‐thirds of patients were satisfied with the amount of information received through the electronic or paper ICD data summary. Additionally, providing patients with their device data did not increase ICD‐specific clinical workload (e.g., calls or messages to provider). While providers did not foresee the provision of ICD data to patients as decreasing or improving clinical workload, they did see potential value in it for patients. Conclusions: Providing patients with their ICD data (through paper or electronic means) might have the potential to improve patient satisfaction and enhance shared‐decision making without adversely impacting clinical workload. [ABSTRACT FROM AUTHOR]

A systematic review of the published work on consumer involvement in the education of health professionals was undertaken using the PRISMA guidelines. Searches of the CINAHL, MEDLINE, and PsychINFO electronic databases returned 487 records, and 20 met the inclusion criteria. Further papers were obtained through scanning the reference lists of those articles included from the initial published work search ( n = 9) and contacting researchers in the field ( n = 1). Thirty papers (representing 28 studies) were included in this review. Findings from three studies indicate that consumer involvement in the education of mental health professionals is limited and variable across professions. Evaluations of consumer involvement in 16 courses suggest that students gain insight into consumers' perspectives of: (i) what life is like for people with mental illness; (ii) mental illness itself; (iii) the experiences of admission to, and treatment within, mental health services; and (iv) how these services could be improved. Some students and educators, however, raised numerous concerns about consumer involvement in education (e.g. whether consumers were pursuing their own agendas, whether consumers' views were representative). Evaluations of consumer involvement in education are limited in that their main focus is on the perceptions of students. The findings of this review suggest that public policy expectations regarding consumer involvement in mental health services appear to be slowly affecting the education of mental health professionals. Future research needs to focus on determining the effect of consumer involvement in education on the behaviours and attitudes of students in healthcare environments. [ABSTRACT FROM AUTHOR]

The article comments on a study which focused on the deconstruction of patient-oriented paradigm in health sciences. It points out the lack of evidence for the pervasiveness of patient-oriented research and the failure of the study authors to show that patient-health research will foreclose on more radical forms of participatory research and engagement, as well as to provide examples of actual harms done by actual-patient-oriented health research.

Aim: This scoping literature review aimed to answer the question: What are the shared decision‐making experiences of adult children in regard to their parent/s' health care in residential aged care facilities? Background: Shared decision‐making has been an important patient‐centred approach to nursing care since the 1990s, yet it is becoming increasingly evident that it is still not the reality in aged care facilities fifty years on. Currently, it is not well understood how adult children participate in shared decision‐making and the types of decisions they are required to make. Design: A review of original research papers using Kable, Pich and Maslin‐Prothero 12‐step systematic approach to documenting a search strategy. Method: The researcher screened 597 articles from four databases, published in the English language, during the period 1985–2019. The researcher used the Mixed Methods Appraisal Tool version 2011 to determine the methodological quality of the included studies. The Joanna Briggs Institute QARI data tool was used to appraise the seven selected articles and thematically analyse findings, respectively. Results: Four themes were highlighted: communication; staffing; being involved; and staff–family relationships. Despite these themes being apparent, families have limited opportunities to participate in shared health decision‐making in regard to their parents' care. Conclusion: The findings from this literature show how shared decision‐making is affected by the RACF environment. There is a need to find out and understand what is important from a family member's point of view to optimise shared decision‐making and nursing care of the family member in residential aged care settings. Relevance to clinical practice: The limited findings specific to the SDM experiences of adult children of parents in RACFs in this review could help staff and RACFs to develop strategies and staff training to encourage and facilitate the implementation of shared health decision‐making with staff and families on older people's care. [ABSTRACT FROM AUTHOR]

Background: There is limited evidence of genuine equal partnership where power is shared with young people with mental health difficulties throughout all research stages, particularly in data collection and analysis. Objective: To describe how our qualitative study, exploring young peoples' perceptions on the feasibility of using technology to detect mental health deterioration, was co‐produced using principles of co‐production, whilst reflecting on impact, challenges and recommendations. Methods: Young people with experience of mental health difficulties were appointed and then worked with researchers throughout all research stages. The study was evaluated against the five principles of co‐production. Reflections from researchers and young people were collected throughout. Results: Seven young people formed an initial Young People's Advisory Group (YPAG); three became co‐researchers. Reflection was key throughout the process. Sharing power became easier and more evident as trust, confidence and mutual respect grew over time, particularly after a safe space was established. The safe space was crucial for open discussions, and our WhatsApp group enabled continual communication, support and shared decision‐making. The resulting co‐produced topic guide, coding framework, thematic map, papers and presentations demonstrated significant impact. Conclusions: To our knowledge, this is the first qualitative mental health study to be co‐produced using the principles of co‐production. Our rigorous assessment can be utilized as an informative document to help others to produce meaningful co‐produced future research. Although co‐production takes time, it makes significant impact to the research, researchers and co‐researchers. Flexible funding for spontaneous suggestions from co‐researchers and more time for interview training is recommended. [ABSTRACT FROM AUTHOR]

The article presents the discussion on research community increasingly partners with consumers and community in the design and conduct of research. Topics include Recent studies have explored the perceptions of Editor-in-Chiefs regarding the acceptability for consumer co-researchers to be authors on papers; and authorship were developed by the scientific community to ensure appropriate attribution for the work.

Purpose: Differences in Indigenous worldviews, practices and values highlight the need for Indigenous‐specific health quality indicators, such as patient‐reported outcome measures (PROMs) and patient‐reported experience measures (PREMs). The purpose of this paper is to present our methodology, as part of a larger study that sought to develop a framework for creating Indigenous‐specific PROMs and PREMs. Methods: The research design was informed by Indigenous research methodology and a community‐based participatory approach. It had three core components: (1) a literature exploration of existing Indigenous‐specific PROMs and PREMs; (2) interviews with researchers with expertise in PROMs and PREMs developed for Indigenous populations and community leaders interested in using these Indigenous‐informed evaluation tools; and (3) conversations with Indigenous community members about their experiences with health surveys. Interviews were audio‐recorded and transcribed verbatim; transcripts were analyzed qualitatively using an inductive and deductive approach. Themes and sub‐themes were identified to build a framework that honours Indigenous knowledges and ways of knowing. Results were validated with select research participants and the Project Advisory Committee. Results: Findings demonstrate how relationship building is the necessary starting point for engagement when developing survey instruments with Indigenous peoples. Engagement requires respectful collaboration through all stages of the project from determining what questions are asked to how the information will be collected, interpreted, and managed. A relational stance requires responsibility to Indigenous communities and peoples that goes beyond research carried out using a western scientific lens. It means ensuring that the project is beneficial to the community and framing questions based on Indigenous knowledge, worldviews, and community involvement. Conclusions: This study employed a collaborative, participatory qualitative approach to develop a framework for creating PROMs and PREMs with Indigenous peoples. The methods described offer concrete examples of strategies that can be employed to support relationship‐building and collaboration when developing Indigenous‐specific survey instruments. [ABSTRACT FROM AUTHOR]

While the right of children to be involved in decisions that concern them has been widely recognised, they are currently barely involved in guideline development in healthcare. This paper aims to explore what a future guideline development system in which children are meaningfully involved might look like and to reflect on the transition required to achieve this. We used a systems innovation perspective, exploring child participation within its systemic context and complexity. To this end, we conducted 24 interviews with various actors, about their ideas on and experiences with child participation in guideline development in the Dutch system (between August 2018 and September 2020), complemented with a scoping review. The current system is characterised by a high‐speed, rigid process that relies heavily on scientific evidence. Children are usually not included or taken seriously. The contours of a system in which children are meaningfully involved would differ markedly: children would be considered capable and taken seriously, and the guideline development process would be flexible, with time for interaction with children and discussion about the implications of their perspectives. We encountered few examples of child participation in guideline development worldwide, and believe our results are indicative of the situation in other Western countries. We propose the following actions: (1) Development of a discussion arena to create a joint vision on the aim of guideline development and subsequently the role of child participation therein. (2) Set up of transition experiments unbound by the current constellation, conducted by front‐runners who are open to children's perspectives. These are essential to clarify pathways towards a future in which the voices of children are meaningfully integrated. It remains to be seen, however, whether there are sufficient actors who feel the necessary urgency for change. [ABSTRACT FROM AUTHOR]

Background: The Communicative Participation Item Bank (CPIB) is a patient‐reported outcome measure (PROM) designed to measure the extent of interference, or difficulty, experienced by adults with communication disorders participating in their day‐to‐day communication activities. To date, there is limited evidence regarding sensitivity of the CPIB for capturing change with intervention in people with Parkinson's disease (PwPD). Aims: The purpose of this study was to examine the following measurement properties of the CPIB in PwPD who received community‐based, standard care, speech‐language therapy focusing on motor speech concerns: Change over time between treatment and observation groups, comparison to patient‐defined ideal and satisfactory targets, comparison of static short form to computerised adaptive testing (CAT), comparison of self to proxy‐rated scores, and comparison to other common PROMs. Methods and Procedures: Forty‐six PwPD (20 treatment/26 observation) completed data collection upon enrolment (pre‐treatment) and 6 months later. In addition to the CPIB, PROMs included the Voice Handicap Index 10‐item short form (VHI‐10), PROMIS Global Health‐Related Quality of Life, Levels of Speech Usage, self‐rated speech severity, and Patient Health Questionnaire‐9 (PHQ‐9). Participants also engaged in qualitative interviews. Forty‐four family members completed proxy CPIB ratings. Outcomes and Results: There were no significant differences between treatment and observation groups on the CPIB pre‐treatment, but there were significant differences post‐treatment. The differences appeared to be largely due to significant gains in the treatment group. No participants reached their ideal CPIB target, and few reached their satisfactory target. Static CPIB short form and CAT scores were not significantly different, with an average of five CAT items administered per participant. Overall group similarities between patient and proxy scores may have obscured wide variability across individual patient‐proxy pairs. Associations between CPIB and VHI‐10, health‐related quality of life, self‐reported speech severity, and depression ranged from weak to moderate. Conclusions and Implications: The CPIB appears to be sensitive to capturing change with intervention, and similar results are obtained with the static short form and CAT formats. One clinical caution is that even with gains observed in the treatment group, no participants obtained their ideal communicative participation goals, and few obtained a satisfactory level of communicative participation. Thus, while current interventions are beneficial, they may not meet the full range of clients' communication needs. While responding to the CPIB through a proxy rater may be feasible, caution is warranted due to concerns about maintaining the autonomy of PwPD. What this paper adds: What is already known on this subject: The communication disorders associated with Parkinson's disease (PD) can have a negative impact on quality of life and life participation as measured by patient (or person)‐reported outcome measures (PROMs). The Communicative Participation Item Bank (CPIB) is one PROM available to use with adults with communication disorders. However, little is known about whether the CPIB captures changes in communicative participation as a result of standard care treatment for people with Parkinson's disease (PwPD). Use of computerised adaptive testing (CAT), proxy report and comparison to targeted participation outcomes have not been explored. What this study adds to existing knowledge: As a result of this study, we know that the CPIB captured differences between treatment and observation groups after community‐based, standard care speech therapy intervention focusing on motor speech production in PwPD. Static short form and CAT scores did not differ significantly, so the CAT option provides better efficiency requiring, on average, five items to administer compared to the 10‐item short form. Proxy and PwPD scores did not differ as a group, but wide variability was noted. What are the potential or actual clinical implications of this work?: The CPIB may be a clinically sensitive instrument for capturing changes in communicative participation after treatment. No participants met their ideal CPIB target, and few reached their satisfactory target, suggesting that while current interventions contribute to gains in communicative participation, there are still unmet needs that may call for support and interventions addressing the more complex array of factors affecting communicative participation outcomes for PwPD. [ABSTRACT FROM AUTHOR]

Background: Young people moving from adolescent secure hospitals to adult care present with multiple and complex needs which often remain unmet during transition periods. This paper delineates the process of developing and co‐producing the moving forward intervention (MFi), which aims to address the psychosocial needs of transitioning youth who have limited access to well‐researched and tailored service provisions. Method: An extensive search of the relevant literature was conducted to generate themes and guide the co‐production phase. Fourteen Advisory Group Meetings were held virtually during COVID‐19 to design the MFi module content with 17 keyworkers, 2 parents and 13 young people aged 17–18 years across six adolescent secure hospitals in England. Thematic analysis was used to reflect on the field notes discussed in the Advisory Groups. Results: Co‐produced themes from the literature and the Advisory Groups informed the development of the proposed intervention. Three overarching themes pertinent to expectations in adult services, improving communication gaps between services and facilitating the letting go period emerged from the co‐production phase. It was suggested the MFi is co‐delivered by a peer with lived experience to build trust and create hopefulness among young people. The importance of promoting graded transitions through standardised procedures was highlighted. Conclusions: The current findings promote evidence‐based initiatives and build robust practice frameworks that inform treatment and policy guidelines. The young people, parents and keyworkers found the MFi supportive and valued the co‐production experience. As such, co‐production has been a vital tool in promoting patient engagement and empowerment, and reducing service inequalities, especially in adolescent secure hospitals. [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]

Family and extended kinship systems which nurture healthy, happy children are central to Aboriginal and Torres Strait Islander cultures. Since colonisation, Aboriginal and Torres Strait Islander communities have been impacted by intergenerational cycles of trauma, stemming from colonial violence, genocidal policies and discrimination, including the forced removal of children from their families. Becoming a parent offers a unique life‐course opportunity for trauma recovery and preventing intergenerational trauma. However, identifying or 'recognising' complex trauma carries significant risk of harm for Aboriginal and Torres Strait Islander parents due to reactive prenatal child protection involvement potentially compounding experiences of trauma, and limited benefits due to lack of culturally appropriate support. The Aboriginal‐led participatory Healing the Past by Nurturing the Future project aims to co‐design safe, accessible and feasible perinatal awareness, recognition, assessment and support strategies for Aboriginal and Torres Strait Islander parents experiencing complex trauma. This paper presents views of 38 workshop participants to determine prerequisites for ensuring benefits outweigh risks of assessment to safely recognise parents experiencing complex trauma, consistent with screening criteria. Six essential elements were identified from thematic analysis: high‐quality holistic care; cultural, social and emotional safety; empowerment, choice and control; flexible person‐centred approaches; trusting relationships; and sensitive, skilled communication. Key Practitioner Messages: The impacts of colonisation and rates of Aboriginal and Torres Strait children in out‐of‐home care mean that there can be a myriad of issues facing Aboriginal and Torres Strait Islander parents with regard to perinatal child protection involvement.The benefits must outweigh the risks of identifying parents experiencing complex trauma.Assessment must be offered within foundations of supportive relationships and holistic care in culturally‐safe, empowering settings, where choices are respected and skilled communication approaches are used. [ABSTRACT FROM AUTHOR]

Background: Psycho‐oncology is a clinical specialty in which the humanistic aspects of cancer diagnoses and treatment are addressed to reduce the psychological burden for patients and their caregivers to optimize patient participation, cancer outcomes and quality‐of‐life, which is especially critical in cultures where cancer is perceived as invariably fatal. Psycho‐oncology programs face multiple barriers in low‐ and middle‐income countries, including limited resource allocation and lack of training, both of which have been impediments to psycho‐oncology programs becoming recognized as core competencies in cancer management and part of a standard medical curriculum. Purpose: This paper discusses the role of the Global Breast Cancer Initiative (GBCI) in helping to overcome inequities in breast cancer care and improve clinical outcomes from a psycho‐oncology perspective as a model for improved cancer care in limited resource settings. Findings: GBCI applies a comprehensive framework encompassing all phases of cancer care (defined through three pillars spanning the continuum of cancer management) and includes addressing the physical, psychological, and social needs of women throughout the life‐course. Efforts to promote policies that increase access to early detection and treatment programs and improve health literacy among the public are important strategies to mitigate the most common emotional and physical challenges reported by people with cancer accessing care. Conclusions: Future efforts will focus on the integration of culturally appropriate guidance to promote early cancer detection and treatment completion through training programs for clinicians to establish core competencies in psycho‐oncology. Emerging advocacy efforts in the oncology arena may help guide the integration of psycho‐oncology services into routine care in countries where these services are not already integrated into the standard curriculum. [ABSTRACT FROM AUTHOR]

Background: In the management of epidemics, like COVID‐19, trade‐offs have to be made between reducing mortality and morbidity and minimizing socioeconomic and political consequences. Traditionally, epidemic management (EM) has been guided and executed attentively by experts and policymakers. It can, however, still be controversial in the public sphere. In the last decades, public engagement (PE) has been successfully applied in various aspects of healthcare. This leads to the question if PE could be implemented in EM decision‐making. Methods: From June to October 2020, seven deliberative discussion focus groups were executed with 35 Dutch citizens between 19 and 84 years old. Their views on PE in COVID‐19 management were explored. The deliberative approach allows for the education of participants on the topic before the discussion. The benefits, barriers, timing and possible forms of PE in EM were discussed. Results: Almost all participants supported PE in EM, as they thought that integrating their experiences and ideas would benefit the quality of EM, and increase awareness and acceptance of measures. A fitting mode for PE was consultation, as it was deemed important to provide the public with possibilities to share ideas and feedback; however, final authority remained with experts. The publics could particularly provide input about communication campaigns and control measures. PE could be executed after the first acute phase of the epidemic and during evaluations. Conclusions: This paper describes the construction of an empirically informed framework about the values and conditions for PE in EM from the perspective of the public. Participants expressed support to engage certain population groups and considered it valuable for the quality and effectiveness of EM; however, they expressed doubts about the feasibility of PE and the capabilities of citizens. In future studies, these results should be confirmed by a broader audience. Patient or Public Contribution: No patients or members of the public were involved in the construction and execution of this study. This study was very exploratory, to gain a first insight into the views of the public in the Netherlands, and will be used to develop engagement practices accordingly. At this stage, the involvement of the public was not yet appropriate. [ABSTRACT FROM AUTHOR]

Background: As part of a multifaceted approach to patient and public involvement and engagement (PPIE), alongside traditional methods, a closed Facebook group was established to facilitate PPIE feedback on various aspects of a project that used video‐recording to examine risk communication in NHS Health Checks between June 2017 and July 2019. Objective: To explore the process and impact of conducting PPIE through a closed Facebook group and to identify the associated benefits and challenges. Methods: Supported by reflections and information from project meetings used to document how this engagement informed the project, we describe the creation and maintenance of the Facebook Group and how feedback from the group members was obtained. Facebook data were used to investigate levels and types of engagement in the closed Facebook group. We reflect on the challenges of using this method of engaging the public in health research. Results: A total of 289 people joined the 'Risk Communication of Cardiovascular disease in NHS Health Checks' PPIE closed Facebook group. They provided feedback, which was used to inform aspects of the study, including participant‐facing documents, recruitment, camera position and how the methodology being used (video‐recorded Health Checks and follow‐up interviews) would be received by the public. Discussion: Using a closed Facebook group to facilitate PPIE offered a flexible approach for both researchers and participants, enabled a more inclusive method to PPIE (compared with traditional methods) and allowed rapid feedback. Challenges included maintaining the group, which was more labour intensive than anticipated and managing members' expectations. Suggestions for best practice include clear communication about the purpose of the group, assigning a group co‐ordinator to be the main point of contact for the group, and a research team who can dedicate the time necessary to maintain the group. Conclusion: The use of a closed Facebook group can facilitate effective PPIE. Its flexibility can be beneficial for researchers, patients and public who wish to engage in the research process. Dedicated time for sustained group engagement is important. Patient or Public Contribution: Patient representatives were engaged with the development of the research described in this paper and a patient representative reviewed the manuscript. [ABSTRACT FROM AUTHOR]

Background: The concept of service user involvement is an evolving concept in the mental health‐care literature. Objective: This study sought to explore and analyse the concept of service user involvement as used in within the field of mental health care. Methodological approach: An evolutionary concept analysis was conducted using a literature‐based sample extracted from an electronic database search. One hundred and thirty‐four papers met the inclusion criteria and were analysed to discover key attributes, antecedents and consequences of service user involvement and to produce a definition of the concept. Findings: Five key attributes of service user involvement within the context of mental health care were identified: a person‐centred approach, informed decision making, advocacy, obtaining service user views and feedback and working in partnership. Discussion and conclusions: Clarity of the attributes and definition of the concept of service user involvement aims to promote understanding of the concept among key stakeholders including mental health professionals, service users and community and voluntary organizations. The findings of the research have utility in the areas of theory and policy development, research on service user involvement in mental health care and service user involvement in mental health practice. Directions for further research regarding the concept are identified. [ABSTRACT FROM AUTHOR]

Context: Migration is one of the most politically pressing issues of the 21st century but migrant health remains an under‐researched area. The International Collaboration for Participatory Health Research (ICPHR) working group on migration developed this position statement to address opportunities and challenges in relation to migrant health. It aims to contribute to a shift from a deficit model that sees migrants as passively affected by policies to their reconceptualization as citizens who are engaged in the co‐creation of solutions. Methods: This paper examines the opportunities and challenges posed by the use of PHR with migrants. It draws on a broad literature to provide examples of successful PHR with migrants and highlights critical issues for consideration. Findings: Successful initiatives illustrate the value of engaging migrants in the definition of the research agenda, the design and implementation of health interventions, the identification of health‐protective factors and the operationalization and validation of indicators to monitor progress. Within increasingly super diverse contexts, fragmented community landscapes that are not necessarily constructed along ethnicity traits, inadequate structures of representation, local tensions and operational barriers can hamper meaningful PHR with migrants. Conclusion: For each research context, it is essential to gauge the 'optimal' level and type of participation that is more likely to leverage migrants' empowerment. The development of Monitoring and Evaluation tools and methodological strategies to manage inter‐stakeholder discrepancies and knowledge translation gaps are steps in this direction. Patient or public contribution: This paper draws from contributions of migrant populations and other stakeholders to policymaking. [ABSTRACT FROM AUTHOR]

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Abstract: Pro re nata (PRN) medication is widely used and studied in psychiatric care, but our knowledge about patient participation in its administration is fragmented. The aim of this integrative review was to describe and synthesize previous knowledge of patient participation in PRN in psychiatric inpatient settings. We conducted both electronic and manual searches, using the CINAHL, Scopus, PsycINFO, and PubMed databases, and eight scientific journals. Searches were limited to the English language, to the years 2006–2016, and to selected papers using inclusion, exclusion, and quality criteria. We identified 16 relevant papers, and these showed that patient participation included patient‐related starting points, including the patients’ willingness to participate and their knowledge of the medication. The patients’ participation in PRN practices was demonstrated by the opportunity to request PRN and to refuse any PRN that was offered. Patient participation was shown to be linked to certain situations where PRN was recommended. The role that the professionals played in patient participation included interacting with patients, providing counselling and alternatives for PRN. Our results also revealed that coercion was used administering PRN. The existing literature exposed challenges that need to be addressed if patient participation in the use of PRN medication is to be effectively achieved in psychiatric inpatient settings. Equal partnerships between patients, nurses, and physicians are an essential part of this process, and further research into PRN medication is urgently needed, particularly studies that focus on patients’ experiences. [ABSTRACT FROM AUTHOR]

Health systems around the world face the issue of financial and workforce sustainability. Mobile health technologies - those devices which connect health professionals, patients, payers and the many other contributors who make up the health system offer some solutions - not just as 'add ons' but as enablers of real system change. This paper presents a vision for what the health system of the future could be like and emphasises the opportunities for real patient participation in clinical decision-making if the professions can engage the technologies and patients/community in a meaningful way. Predicting the future is never easy but many of the technologies are here now - but how we will use them to make the system more patient friendly, more productive and sustainable is still for discussion. This paper should start that conversation. [ABSTRACT FROM AUTHOR]

Background: Medicines are often suboptimally managed for heart failure patients across the transition from hospital to home, potentially leading to poor patient outcomes. The Improving the Safety and Continuity Of Medicines management at Transitions of care programme included: understanding the problems faced by patients and healthcare professionals; developing and co‐designing the Medicines at Transitions of care Intervention (MaTI); a cluster randomized controlled trial testing the effectiveness of a complex behavioural MaTI aimed at improving medicines management at the interface between hospitals discharge and community care for patients with heart failure; and a process evaluation. The MaTI included a patient‐held My Medicines Toolkit; enhanced communication between the hospital and the patient's community pharmacist and increased engagement of the community pharmacist postdischarge. This paper reports on the patients' experiences of the MaTI and its implementation from the process evaluation. Design: Twenty one‐to‐one semi‐structured patient interviews from six intervention sites were conducted between November 2018 and January 2020. Data were analysed using the Framework method, involving patients as co‐analysts. Interview data were triangulated with routine trial data, the Consolidated Framework for Implementation Research and a logic model. Results: Within the hospital setting patients engaged with the toolkit according to whether staff raised awareness of the My Medicines Toolkit's importance and the time and place of its introduction. Patients' engagement with community pharmacy depended on their awareness of the community pharmacist's role, support sources and perceptions of involvement in medicines management. The toolkit's impact on patients' medicines management at home included reassurance during gaps in care, increased knowledge of medicines, enhanced ability to monitor health and seek support and supporting sharing medicines management between formal and informal care networks. Conclusion: Many patients perceived that the MaTI offered them support in their medicines management when transitioning from hospital into the community. Importantly, it can be incorporated into and built upon patients' lived experiences of heart failure. Key to its successful implementation is the quality of engagement of healthcare professionals in introducing the intervention. Patient or Public Contribution: Patients were involved in the study design, as qualitative data co‐analysts and as co‐authors. [ABSTRACT FROM AUTHOR]

Introduction: Paediatric patients with disorders that involve brain functioning are particularly vulnerable with respect to including them in shared decision‐making. Current tools are mostly paper or digital patient information. We lay the groundwork for improving engagement with a concept that we coined 'the Self‐Portrait'. The main goals were to identify (1) obstacles and (2) design parameters that enable patient participation. Methods: A research‐through‐design approach was utilized in nine patients with brain‐related disorders (4–12 years), 15 parents and 15 medical professionals, involving contextual research (interviews and observations) within the paediatric hospital and patients' homes and codesign. Sensitizing materials and early instances of design solutions were deployed as catalysts for communication. Five rounds of enriched interviews and design reviews were thematically analysed to answer the research questions. Results: Obstacles to child involvement were related to children's level of understanding, the time and energy necessary for information processing and lack of perceived relevance of the information. Patients' engagement is supported by design features that extend the time frame of interaction beyond the consultation, transfer information interactively and give control and influence during the consultation. Conclusion: Obstacles were detected that complicate child engagement, which differ between stakeholders. Promising design features were identified that have the potential to play an important role in enabling active child involvement. These findings show that applying principles of human‐centred design research and codesign can bring together patients, parents and medical professionals around a tool that provides a shared language and focus, which are prerequisites to increase child engagement. Patient or Public Contribution: Patients, parents and clinicians contributed as design informants during contextual research and design reviews. Clinicians provided feedback on the initial outcomes of thematic analysis. Two researchers assisted in consensus sessions during the thematic analysis. [ABSTRACT FROM AUTHOR]

Children's participation in the decision‐making and design of urban public spaces is crucial for achieving inclusive cities. International covenants have recognized the importance of participation as a right. Having adhered to these agreements, Turkey is obliged to enable children's participation in all public matters that concern them, including shaping urban spaces. This paper analyses national and local legislation in Turkey and Istanbul to distil how children's right to participate is legislated and institutionalised. It shows that lack of integrated child‐responsive legislation, accounting for children's individuality, and lack of collaboration between national and local governments are the root of the problem. [ABSTRACT FROM AUTHOR]

Background: Communicating about medications across transitions of care is important in older patients who frequently move between health care settings. While there is increasing interest in understanding patient communication across transitions of care, little is known about older patients' involvement in formal and informal modes of communication regarding managing medications. Objective: The aim of this paper was to explore how older patients participated in managing their medications across transitions of care through formal and informal modes of communication. Methods: The study was conducted across two metropolitan hospitals: an acute hospital and a geriatric rehabilitation hospital in metropolitan Melbourne, Australia. A focused ethnographic design was used involving semi‐structured interviews (n = 50), observations (203 h) and individual interviews or focus groups (n = 25). Following thematic analysis, data were analysed using Fairclough's Critical Discourse Analysis. Results: Data analysis revealed two major discursive practices, which comprised of an interplay between formal and informal communication and environmental influences on formal and informal communication. Self‐created patient notes were used by older patients to initiate informal discussion with health professionals about medication decisions, which challenged traditional unequal power relations between health professionals and patients. Formal prompts on electronic medication administration records facilitated the continuous information discourse about patients' medications across transitions of care and encouraged health professionals to seek out older patients' preferences through informal bedside interactions. Environmental influences on communication comprised health professionals' physical movements across private and public spaces in the ward, their distance from older patients at the bedside and utilization of the computer systems during patient encounters. Conclusion: Older patients' self‐created medication notes enabled them to take on a more active role in formal and informal medication communication across transitions of care. Older patients and family members did not have continuous access to information about medication changes during their hospital stay and systems often failed to address older patients' key concerns about their medications, which hindered their active involvement in formal and informal communication. Patient or Public Contribution: Older adults, family members and health professionals volunteered to be interviewed and observed. [ABSTRACT FROM AUTHOR]

Background: The scope of this priority‐setting process is communication and collaboration in transitional care for patients with acute stroke. Actively involving persons with stroke and their family caregivers is important both in transitional care and when setting priorities for research. Established priority‐setting methods are time‐consuming and require extensive resources. They are therefore not feasible in small‐scale research. This article describes a pragmatic priority‐setting process to identify a prioritized top 10 list of research needs regarding transitional care for patients with acute stroke. Methods: A pragmatic priority‐setting approach inspired by the James Lind Alliance was developed. It involves establishing a user group, identifying the research needs through an online survey, analysing and checking the research needs against systematic reviews, culminating in an online prioritization of the top 10 list. Results: The process was completed in 7 months. A total of 122 patients, family caregivers, health personnel and caseworkers submitted 484 research needs, and 19 users prioritized the top 10 list. The list includes the categories 'patients and caregivers' needs and health literacy', 'health personnel's common understanding', 'information flow between health personnel and patients and caregivers', 'available interventions and follow‐up of patients and caregivers', 'interaction and collaboration between health personnel and caseworkers across hospital and primary healthcare' and 'disabilities after stroke'. Conclusion: This paper outlines a pragmatic approach to identifying and prioritizing users' research needs that was completed in 7 months. The top 10 list resulting from this priority setting process can guide future research relating to communication and collaboration during the transition from hospital to the community for patients with stroke. Patient and Public Contribution: Members of three stroke organizations participated in the advisory group. They gave feedback on the scope and the process, distributed the surveys and prioritized the top 10 list. Persons with stroke and their caregivers submitted research needs in the survey. [ABSTRACT FROM AUTHOR]

Introduction: No one can argue on the importance of health in one's life. However, the value of health in the context of other priorities for individuals is not always as clear. Further, patients' experience with the healthcare system is rarely contrasted with the service providers' expectations. The aim of this paper is to examine and compare patients' and providers' own definitions of health and their perceptions of the healthcare delivery experience from the lens of residents and providers in West Baltimore, Maryland. Methods: This was a qualitative study with semi‐structured focus groups (15 sessions) and individual in‐depth interviews (21 interviews) with 94 participants. Two independent coders thematically analysed the transcripts. Results: Patients identified five areas where health systems can help them stay healthy or become healthier: affordability and costs of care; accessibility; clinician/patient communication; addressing social determinants; and stigma and trust. Providers acknowledged that the healthcare experience is not always perfect. While the medical team focuses on conversations that enhance medical care, patients are expecting providers to touch on subjects beyond medical care. Conclusions: Patients and providers need to consider that although they have a common value towards health, there is still a gap in what users expect and what providers can offer. To further align those expectations, there is a need for increasing involvement of patient in care administration and improving dialogue between the parties about these differences. Patient or Public Contribution: A Stakeholder Advisory Board (SAB)—comprised of a patient, two community leaders, a physician and two healthcare administrators—was instrumental in codeveloping the study material (e.g., interview guides), engaging patients in the research process, identifying participants and codeveloping dissemination material. Two SAB members—Gail Graham, a patient consultant/professor, and Marcia Cort, a physician—are coauthors. [ABSTRACT FROM AUTHOR]

Biomarker research is associated with high hopes for atopic dermatitis and psoriasis research. Although various effective treatments have been developed, many challenges remain concerning diagnostics and the development of targeted treatments, but also regarding a number of ethical and social issues. In this paper, building on a systematic literature review and review of reason, we examine the ethical and social debate on biomarker research for atopic dermatitis and psoriasis. We discuss topics such as risks and benefits of stratification of patient groups, ethical aspects of big data and advanced analytics for biomarker use in atopic dermatitis and psoriasis. Our systematic literature review of reason, based on established methodological standards, includes argument‐based ethics publications and scientific literature with implicitly ethically relevant aspects. The first search of biomarker research in dermatology and adjacent fields (e.g., oncology) resulted in a large amount of literature concerning general normative aspects of biomarker research, but suggested a lack of explicit argument‐based ethical literature in atopic dermatitis and psoriasis research. We, therefore, conducted a second systematic search, focusing specifically on atopic dermatitis and psoriasis biomarker research. The 43 relevant articles identified through both systematic searches were clustered into three topic groups: (i) ethical aspects of stratification and precision medicine, (ii) digital ethics and (iii) research ethics with a focus on complexity and validation. We found that compared to other fields, such as cancer research, the ethical aspects of atopic dermatitis and psoriasis are rarely explained and addressed in detail. In particular, more work is required on scientific standards, digital ethics and responsible clinical application of biomarkers for atopic dermatitis and psoriasis, patient participation and ethical implications of biomarker use for children or young people with atopic dermatitis and psoriasis. We close with suggestions on how to address the ethical and social dimension of atopic dermatitis and psoriasis research and practice more directly in future. [ABSTRACT FROM AUTHOR]

Children and young people can be valuable partners in research, giving their unique perspectives on what and how research should be done. However, disabled children are less commonly involved in research than their non-disabled peers. This review investigated how disabled children have been involved as research partners; specifically how they have been recruited, the practicalities and challenges of involvement and how these have been overcome, and impacts of involvement for research, and disabled children and young people. The INVOLVE definition of involvement and the Equality and Human Rights Commission definition of disability were used. Relevant bibliographic databases were searched. Websites were searched for grey literature. Included studies had involved disabled children and young people aged 5-25 years in any study design. Reviews, guidelines, reports and other documents from the grey literature were eligible for inclusion. Twenty-two papers were included: seven reviews, eight original research papers, three reports, three guidelines and one webpage. Nine examples of involvement were identified. Recommendations included developing effective communication techniques, using flexible methods that can be adapted to needs and preferences, and ensuring that sufficient support and funding is available for researchers undertaking involvement. Positive impacts of involvement for disabled children included increased confidence, self-esteem and independence. Positive impacts for research were identified. Involving disabled children in research can present challenges; many of these can be overcome with sufficient time, planning and resources. More needs to be done to find ways to involve those with non-verbal communication. Generally, few details were reported about disabled children and young people's involvement in studies, and the quality of evidence was low. Although a range of positive impacts were identified, the majority of these were authors' opinions rather than data. There remains scope for methodological research to inform appropriate approaches to public and patient involvement in childhood disability research. [ABSTRACT FROM AUTHOR]

Accessible summary People with learning disabilities are involved in doing research more and more., A lot of papers have been written about this., These papers sometimes do not say whether people with learning disabilities decided what should be researched., This paper talks about how a group of people with learning disabilities and professionals worked together to decide what research they should do in their area., Summary While recent years have seen an increase in the number of participatory and inclusive research studies being undertaken where people with learning disabilities are active members of the research team, little has been published about how teams decide what to research. This paper aims to fill this gap by discussing how in one area of Wales a participatory workshop was held to try and identify priority areas for research. By sharing our experiences, we hope that other people will be encouraged to try similar approaches. First, however, this activity is set in the context of wider debates concerning participatory research. [ABSTRACT FROM AUTHOR]

Background: A total of 68% of pre‐school children with cleft palate have speech problems requiring speech therapy. There is a lack of access to regular targeted therapy. Parent training leads to positive outcomes in early communication skills in cleft palate and non‐cleft speech disorders. Connected health has been used to address inadequate access to therapy, providing intervention to those who would not otherwise receive therapy. Aims: To evaluate the speech, activity and participation outcomes of Parent Led, Therapist Supervised, Articulation Therapy (PLAT) compared with routine speech therapy intervention in parent–child dyads. Methods & Procedures: A total of 44 children, aged 2.9–7.5 years, were included in a two‐centre, two‐phase randomized controlled trial. Informed consent and assent were obtained. Participants and speech and language therapists (SLTs) were unblinded to the groups. Parents, in the parent‐trained group (n = 23), attended 2 days' training, received a detailed speech therapy programme, and undertook intervention over 12 weeks supported by the cleft specialist SLT using FaceTime and one face‐to‐face session. In the control arm (n = 21), parent–child dyads received six therapy sessions over 12 weeks with a research SLT, comparable with usual care. Speech recordings were undertaken pre‐ and post‐intervention. Percent consonant correct (PCC) was analysed by external SLTs blinded to the time and group. Activity and participation were measured using the Intelligibility in Context Scale (ICS) and Focus on Outcomes for Children Under Six (FOCUS) questionnaire. Outcomes & Results: There was no evidence of an interaction between Time and Group or an overall statistical difference between groups for PCC scores. There was a statistically significant difference over time for both groups (words: p < 0.002; confidence interval (CI) = 9.38–16.27; d = 0.57; sentences: p < 0.002; CI = 16.04–25.97; d = 0.23). Effect sizes were medium for words and small for sentences. For intelligibility and participation, there was no evidence of an interaction between Time and Group or an overall statistical difference between groups. A statistically significant difference over time was found for intelligibility (F = 29.97, d.f. = 1, 42, p < 0.001, 95 % CI = 1.45–3.15 d = 0.46) and for participation (F = 14.19, d.f. = 1, 41, p < 0.001 95% CI = 7.63–25.03; d = 0.36) with FOCUS results indicating clinically meaningful (parent‐led group) and significant (control group) change in participation. Conclusions & Implications: PLAT can be as effective as routine care in changing speech, activity and participation outcomes for children with cleft palate, when supported by a specialist cleft SLT using connected health. What this paper addsWhat is already known on this subjectOver 50% of children with cleft palate require speech therapy. However, there is a lack of timely, accessible speech therapy services in the UK and Ireland. Previous studies have shown that parents can deliver therapy effectively, and that connected health can support the delivery of speech therapy. This study aims to provide evidence that parent‐led therapy with the supervision of a specialist cleft therapist using FaceTime is effective.What this paper adds to existing knowledgeThis randomized controlled trial indicates that parents can be trained to deliver therapy for children with cleft palate speech disorders, under the supervision of an SLT. This approach results in improved speech, activity and participation outcomes similar to routine care.What are the potential or actual clinical implications of this work?This study indicates that both parent‐led articulation therapy and routine care showed meaningful gains in speech, activity and participation, and that parent‐led articulation therapy when supported by a cleft SLT using connected health could be an additional service delivery model for children with cleft palate speech disorders. [ABSTRACT FROM AUTHOR]

Background: Parent–child interaction therapies are commonly used by speech and language therapists (SLTs) when providing services to young children with language learning difficulties. However, the way parents react to the demands of such interventions is clearly important, especially for those from socially disadvantaged backgrounds. Parents play a central role in the therapy process so to ensure parent engagement, and to maximize intervention effectiveness, parents' views must be considered. Aims: To explore the expectations and experiences of parents from socially disadvantaged backgrounds who had taken part in a parent–child interaction programme aimed at promoting language development in 2–3 year olds with language difficulties. Methods & Procedures: The sample included parents who had a child aged 2–3 years and had attended a parent–child interaction programme to promote their child's language development. Parents were eligible to take part if they were living in the 30% most deprived areas in a city in the North of England that constituted the study site. Ten parents participated in a qualitative semi‐structured face‐to‐face interview in the home. Framework analysis was used to analyse the interview transcripts. Outcomes & Results: Parents' expectations before taking part in parent–child interaction interventions contribute to how they may engage throughout the intervention process. Barriers include parents' uncertainty about the nature of the intervention and differing attitudes regarding intervention approaches and strategies. Facilitators during the intervention process include gaining support from other parents, reassurance from the SLT regarding their child's language development, and their own ability to support their child's language learning, as well as increased confidence in how they support their child's development. Conclusions & Implications: Parents respond very differently to parent–child interaction intervention for children with language difficulties, depending on their expectations and attitudes towards intervention. Thus, it is critical that these different perspectives are understood by practitioners before intervention commences to ensure successful engagement. What this paper addsWhat is already known on this subjectParent–child interaction interventions are widely used to promote child language development. Parents play a central role in the therapy process of such interventions, so to maximize effectiveness, parents must be appropriately 'engaged' in that intervention. This involves attending, fully participating and having appropriate attitudinal and/or emotional involvement. The reciprocal nature of engagement means that parents are more likely to become engaged in intervention over time when they are supported by their SLT.What this paper adds to existing knowledgeParental expectations about the intervention process vary considerably and often need to be negotiated before the start of intervention. Reassurance and supporting positive attitudes to co‐working with their SLT may be particularly important for families living with social disadvantage. Supporting parent engagement in parent–child interaction programmes can contribute to the parents' capability to continue implementing language‐promoting strategies outside the intervention context and beyond the end of therapy.What are the potential or actual clinical implications of this work?Parents have different expectations regarding programme involvement. Therefore, having a two‐way, open dialogue between parents and SLTs from the beginning is clearly important, not only as a way of sharing information but also to build on parents' understanding of what the intervention will involve and trust that the SLT will be able to deliver the intervention in collaboration with the parent. SLTs can enhance parent engagement by supporting parents to feel confident and providing reassurance in terms of their child's development and how they can support their child's language learning. [ABSTRACT FROM AUTHOR]

Background: Achieving activity participation goals is a key factor in quality of life (QOL) for people with aphasia (PWA), but expressing participation goals can be difficult for many of them. Proxy reports by caregivers may not accurately reflect the interests and participation goals of PWA, and discrepancies in these goals between PWA and their caregivers may affect QOL, based on the assumption that caregivers' awareness of their loved ones' unique participation goals may be important to increasing PWA activity participation. Aims: To examine everyday activities valued by PWA using the Life Interests and Values (LIV) Cards; to measure congruence between PWA and their caregivers on life participation goals; and to measure how congruence of PWA–caregiver participation goals related to QOL. Methods & Procedures: A convenience sample of 25 PWA completed the LIV Card assessment and the Stroke Aphasia Quality of Life Scale—39 to assess participation goals and QOL. Participation goals were also evaluated with respect to age, time post‐onset and aphasia severity. A total of 12 caregivers were administered the LIV Cards to calculate agreement between PWA–proxy activity reports and the relationship between agreement and QOL. Outcomes & Results: PWA endorsed wanting to participate more in a wide range of activities, with common interests in walking/running, going to the beach and eating out, among others. PWA–caregiver activity agreement was fair to moderate with point‐to‐point agreement averaging 70%. However, no relationship between degree of congruence in PWA–proxy pairs and QOL was found. Conclusions & Implications: PWA have a variety of activity participation goals that can be integrated into intervention plans. Dependence on proxy respondents should be reduced as much as possible to support self‐determination for PWA. What this paper addsWhat is already known on the subjectAchieving activity participation goals is a key factor in QOL for PWA, but communicating about participation goals can be difficult for many of them. Because proxy reports by caregivers may not accurately reflect the interests and participation goals of PWA, this study examined how both PWA and their caregivers responded to an aphasia‐friendly assessment for determining participation goals, and then compared level of agreement about these goals to QOL. Because activity participation is known to be an important factor in QOL, the reason for investigating how agreement relates to QOL is that caregivers' awareness of their loved ones' unique participation goals likely facilitates increased participation by PWA in their ongoing desired activities. The relationship between PWA–caregiver agreement regarding participation goals and QOL in PWA had not yet been investigated before this study.What this paper adds to existing knowledgeThis study adds additional as well as confirmatory information to the existing literature about life participation goals of community‐dwelling individuals with chronic aphasia. Top activities endorsed by a group of 25 PWA are reported within four activity domains (home and community activities, creative and relaxing activities, physical activities, and social activities). Results indicated that agreement between PWA and their caregiver proxies on PWA's most desired activities was < 50%. However, the level of agreement between caregivers and proxies on participation goals was not significantly related to QOL in this sample.What are the potential or actual clinical implications of this work?PWA have a variety of participation goals that can be integrated into intervention plans to be carried out with clinicians, caregivers and family members. The use of proxy respondents when determining participation goals should be reduced as much as possible to support self‐determination for PWA. Use of the LIV Cards, a picture‐based sorting‐task assessment, reduces the need for proxy responders and guesswork about the specific participation goals of PWA. [ABSTRACT FROM AUTHOR]

As involvement of consumers/survivors in planning, delivery, and evaluation of services has increased, expectations of authentic and effective engagement, versus tokenism, have also risen. Different factors contribute to, or detract from, authentic engagement. Writing from mental health consumer/survivor and nursing positioning, respectively, we aim to redress the common problem of including only a narrow range of views and voices. This paper introduces a conceptual model that supports leaders in research, clinical, service, and policy roles to understand the necessity of engaging with a broader spectrum of consumer/survivor views and voices. The model draws on published consumer/survivor materials, making explicit diverse experiences of treatment and care and identifying the subsequent rich consumer/survivor advocacy agendas. We propose that strong co‐production is made possible by recognizing and welcoming consumer/survivor activist, facilitator, transformer, and humanizer contributions. The conceptual model forms the basis for a proposed qualitative validation project. [ABSTRACT FROM AUTHOR]

Aim: This paper examines the possibility of including families, particularly mothers, within the health workforce using the human resource for health planning model to improve newborn outcomes. Background: In many low‐ and middle‐income countries, there is a critical shortage of healthcare providers which impacts care for the neonatal population. A maternal and newborn health need that is prevalent in such countries is the care available between pregnancy and the postnatal period, where significant maternal and newborn deaths occur. Sources of evidence: Using the population health need of the neonatal population in Tanzania, this paper explores the opportunity to include mothers as an additional human resource for health within the Needs‐Based Health Human Resources and Health Systems Planning model. Discussion: In relation to educating and engaging family caregivers, the possible extension of the health workforce to include mothers as a response to meeting the healthcare needs of the neonatal population has yet to be explored. Through mothers and healthcare providers working together to address the population health need of essential newborn care, it offers a way forward for planning the resources needed in a health system. If utilized, mothers offer the opportunity to supplement the demand for human resources for health in the provision of newborn care, without replacing healthcare providers. Conclusion: Mothers as potential members of the health workforce furthers the health system as a whole whereby population health needs are addressed and newborn mortality declines. Implications for health policy: To solve the critical gap based on the supply of and demand for providers including doctors, nurses and midwives, a broader look at innovative solutions is essential. Implications for nursing practice: Mothers offer the opportunity to supplement the available human resources for health in the provision of newborn care, thus helping to close existing gaps. [ABSTRACT FROM AUTHOR]

The Common Assessment Framework provides a model of early intervention, which is familiar in local authorities throughout England, and asserts a participatory framework of child and family engagement. This paper is based on a qualitative study of parents and children who were subject to a multi‐agency process of early intervention in children's social care in a local authority in the Midlands of England. I advance the concept of assemblage to consider the basis of an active service user participation as rather more a struggle to achieve than something that has been granted by practitioner agencies. Interview extracts are used to show the enrolment and assembly of participation as a process of service users developing their active human agency in a multi‐agency setting. The article explores the assembling of skills in administration and management of meetings and plans, accessing knowledge and expertise through service user networks, and challenging professional expertise and institutional space while developing personal qualities of confidence and voice as a means of marshalling an effective participation in a multi‐agency setting. [ABSTRACT FROM AUTHOR]

In this paper, we address the relationship between ethics committees and children involved in qualitative educational research in Chile. In light of a central and recurring challenge (protection versus participation) and its implications, we reflect on informed consent as an instrument that embodies the power of ethics committees within the research process. We inform this reflection with extracts of visual ethnographic fieldwork carried out in 2017 in a marginalised school in Santiago, Chile, with children aged from 8 to 13. We draw on the principles of the Belmont Report (respect, beneficence, justice) to contrast procedural with situated ethics. [ABSTRACT FROM AUTHOR]

Background: People with learning disabilities are often left behind and ostracised in life, education, employment and in research. This article describes the importance and value that people with learning disabilities can bring when participating in co‐production and lived experience research. The article reports on the inequalities and barriers that people living with learning disabilities have in accessing health and social care services and hospitals and makes recommendations for improving services and people's experiences of services. The intertwining of subject (inequalities and barriers of access) and process (lived experience research and co‐production) leads to more comprehensive knowledge and understanding of learning disabilities. Methods: Co‐production events were held with people with learning disabilities, facilitated by the co‐author (Tom Kerridge). Tom and a service user researcher (Ben Gray) with Asperger's syndrome and schizophrenia thematised transcripts and made recommendations, in Ben's case with the insight of lived experience of learning disabilities and mental health problems. Findings: A series of recommendations are made based on the insight of a lived experience perspective. For example: to have a grass roots learning disabilities champion, lived experience peer mentors and supporters, training via a film made by people with learning disabilities, the involvement of Learning Disabilities Research Ambassadors to conduct phase two of the research as well as other recommendations. Conclusions: Lived experience research and co‐production are at the heart and centre of contemporary research in health and social care. Participation can change feelings of exclusion and stigma into feelings of being valued, accepted and being able to make a difference. Accessible summary: People with learning disabilities and mental health problems (like Ben), can feel left behind, like they do not fit in, do not belong and that their chances in life are limited.People can feel that they do not matter, have no voice or say, and that they are forgotten. People with learning disabilities, in Ben's own personal experience, can feel not listened to, looked down on and can face bullying.This paper is about the value that people living with learning disabilities can bring to research and help make health and social care services better. [ABSTRACT FROM AUTHOR]

The global cancer statistics are stark, accounting for nearly 10 million deaths in 2020, around one in six of all deaths globally. The World Health Organization estimates that 70% of these cancer deaths occur in low‐ and middle‐income countries and cancer will continue to rise as a proportion of deaths in these settings. We may usefully characterize cancer as a "social mess," a set of interrelated problems and other messes including poverty and social determinants of health. One part of cancer's "messiness" is the governance deficit around cancer burden and regional inequities This policy paper assesses the field of global oncology governance and the interplay of legal instruments, soft law, national developments, donor activities, as well as partnerships, networks, and coalitions. Cancer governance is central to tackling cancer inequalities. Continuing to probe the complexities of cancer governance requires attention to market mechanisms, international agreements, soft power, political willpower, partnerships, collaborations and networks, and patient participation. Governance is inseparable from "paradigmatic" framings and cancer must be seen as a human rights issue. Key points: Cancer is a "social mess," a set of interrelated problems and other messes including poverty and social determinants of health. Cancer governance is central to tackling cancer inequalities: legal instruments, soft law, donor activities, networks, and coalitions. Governance is inseparable from "paradigmatic" framings and cancer must be framed as a human rights issue. [ABSTRACT FROM AUTHOR]

Based on the theory of change, we gather, organize, and synthesize the evidence on the impact of three language of instruction (LOI) choices (teaching in mother tongue [MT] with later transition, teaching in a non‐MT language, or teaching in two or more languages at one time) on literacy and biliteracy outcomes. We focus on quantitative and qualitative studies of LOI interventions in low‐ and middle‐income countries (LMICs) and consider languages that are commonly spoken in the developing world. As such, we include studies that examine transfers from local languages to English, but not those evaluating transfers from local languages to languages that are less spoken in LMICs (e.g., Swedish). [ABSTRACT FROM AUTHOR]

Although attachment seems to be 'in fashion' when it comes to discussing mental health issues, there are few evidence‐based therapy models treating attachment issues related to psychopathology. In this paper, we will briefly introduce Attachment‐Based Family Therapy (ABFT) as an evidence‐based intervention for depressed and suicidal adolescents, and its first‐time large‐scale application and implementation in a young adult inpatient care unit. We present our clinical data showing that 98% of the young adults who were proposed ABFT engage into this therapy. In our discussion we briefly describe accommodations to the young adult (YA) age and the inpatient setting and discuss hypotheses about which characteristics of young adulthood, the ABFT core interventions and the residential setting play a role in this high engagement. We discuss how adopting a shared clinical attachment‐based framework as a team might broaden the impact. [ABSTRACT FROM AUTHOR]

The purpose of this paper is to report on the use of the soft systems methodology (SSM) to enhance the role of the higher education institution (HEI) stakeholder's action networks in achieving the sustainable development goals (SDGs). We review the literature on sustainable development in HEIs, in particular the role of stakeholder networks for the implementation of SDGs in HEI. We outline some of the features of SSM as an approach to help make sense of this complexity. CATWOE analysis, a conceptual SSM tool, is applied to a stakeholder's network hosted by a Brazilian university with the purpose of achieving the SDGs as part of the community projects (HEI external engagement). Findings of the systemic application suggest that the use of some elements of SSM helps clarify and make sense of the role of the stakeholders and assists in formalising action networks to achieve SDGs. [ABSTRACT FROM AUTHOR]

Context Competency‐based assessment of learners may benefit from a more holistic, inclusive, approach for determining readiness for unsupervised practice. However, despite movements towards greater patient partnership in health care generally, inclusion of patients in postgraduate medical learners' assessment is largely absent. Methods: We conducted a scoping review to map the nature, extent and range of literature examining the inclusion (or exclusion) of patients within the assessment of postgraduate medical learners. Guided by Arskey and O'Malley's framework and informed by Levac et al. and Thomas et al., we searched two databases (MEDLINE® and Embase®) from inception until February 2021 using subheadings related to assessment, patients and postgraduate learners. Data analysis examined characteristics regarding the nature and factor influencing patient involvement in assessment. Results: We identified 41 papers spanning four decades. Some literature suggests patients are willing to be engaged in assessment, however choose not to engage when, for example, language barriers may exist. When stratified by specialty or clinical setting, the influence of factors such as gender, race, ethnicity or medical condition seems to remain consistent. Patients may participate in assessment as a stand‐alone group or part of a multi‐source feedback process. Patients generally provided high ratings but commented on the observed professional behaviours and communication skills in comparison with physicians who focused on medical expertise. Conclusion: Factors that influence patient involvement in assessment are multifactorial including patients' willingness themselves, language and reading‐comprehension challenges and available resources for training programmes to facilitate the integration of patient assessments. These barriers however are not insurmountable. While understudied, research examining patient involvement in assessment is increasing; however, our review suggests that the extent which the unique insights will be taken up in postgraduate medical education may be dependent on assessment systems readiness and, in particular, physician readiness to partner with patients in this way. With this scoping review, Khalife et al. demonstrate that patients' involvement in the assessment of residents offers unique insights on competence that may not be captured by other assessment methods. [ABSTRACT FROM AUTHOR]

This paper adds to the limited evidence base around documentary representation of the wishes, feelings and views of children and young people involved in the child protection system. It presents the findings of a critical discourse analysis of 114 documents relating to 28 children and young people in the North of England who were the subject of a child protection conference (CPC) due to having experienced significant harm or the high likelihood of significant harm occurring. Three dominant and interlayering discourses were identified: a discourse of childhood, a discourse of participation and a discourse of professional social work practice. While some children and young people came to life in the reports and were afforded a unique identity, others were invisible and their views were marginalized. The findings support a dominant discourse of the unseen and unheard child, with participation normally mediated by power relationships between adults and children, and which marginalizes the experiences of children through a structurally constructed lens of risk and vulnerability. The findings signify the need to establish assessment practices and case reporting systems in which children are heard themselves as well as reported on by others. [ABSTRACT FROM AUTHOR]

Background: Shared decision-making (SDM) is considered the "final stage" that completes the implementation of evidence-based medicine. Yet, it is also considered the most neglected stage. SDM shifts the epistemological authority of medical knowledge to one that deliberately includes patients' values and preferences. Although this redefines the work of the clinical encounter, it remains unclear what a shared decision is and how it is practiced., Aim: The aim of this paper is to describe how healthcare professionals manoeuvre the nuances of decision-making that shape SDM. We identify barriers to SDM and collect strategies to help healthcare professionals think beyond existing solution pathways and overcome barriers to SDM., Methods: Semi-structured interviews were conducted with 68 healthcare professionals from psychiatry, internal medicine, intensive care medicine, obstetrics and orthopaedics and 15 patients., Results: This study found that healthcare professionals conceptualize SDM in different ways, which indicates a lack of consensus about its meaning. We identified five barriers that limit manoeuvring space for SDM and contest the feasibility of a uniform, normative SDM model. Three identified barriers: (a) "not all patients want new role," (b) "not all patients can adopt new role," and (c) "attitude," were linked to strategies focused on the knowledge, skills and attitudes of individual healthcare professionals. However, systemic barriers: (d) "prioritization of medical issues" and (e) "lack of time" render such individual-focused strategies insufficient., Conclusion: There is a need for a more nuanced understanding of SDM as a "graded" framework that allows for flexibility in decision-making styles to accommodate patient's unique preferences and needs and to expand the manoeuvring space for decision-making. The strategies in this study show how our understanding of SDM as a process of multi-dyadic interactions that spatially exceed the consulting room offers new avenues to make SDM workable in contemporary medicine., (© 2020 The Authors. Journal of Evaluation in Clinical Practice published by John Wiley & Sons Ltd.)

Accessible summary This paper is about three people with learning disabilities. They work as co-researchers., They have written this paper with support., Support is important to them. It has helped them to do the research. They each have a personal assistant. Other people working on the project also help them., They have had training and practised what they needed to do before asking other people questions., They have learnt a lot of new skills and have made a lot of decisions about the project., They enjoy their work and hope that other people will learn from their stories., They hope that other people with learning disabilities will want to do research., Summary People with learning disabilities are increasingly taking on the role of researcher within participatory research projects. This paper talks about what it means to be a researcher using the words, views and experiences of three people with learning disabilities who are currently working as co-researchers. It talks about what they have found helpful, and what they have found challenging. It compares their experiences to those of other people and highlights the importance of support. Overall they report that it has been a positive experience which has helped them to learn a great deal and they provide advice that they hope will help others thinking about taking on such a role. [ABSTRACT FROM AUTHOR]

Drawing on previous empirical research, we provide an exemplary narrative to illustrate how patients have experienced hospital care organized according to evidence-based fast-track programmes. The aim of this paper was to analyse and discuss if and how it is possible to include patients' individual perspectives in an evidence-based practice as seen from the point of view of nursing theory. The paper highlights two conflicting courses of development. One is a course of standardization founded on evidence-based recommendations, which specify a set of rules that the patient must follow rigorously. The other is a course of democratization based on patients' involvement in care. Referring to the analysis of the narrative, we argue that, in the current implementation of evidence-based practice, the proposed involvement of patients resembles empty rhetoric. We argue that the principles and values from evidence-based medicine are being lost in the transformation into the current evidence-based hospital culture which potentially leads to a McDonaldization of nursing practice reflected as 'one best way'. We argue for reviving ethics of care perspectives in today's evidence practice as the fundamental values of nursing may potentially bridge conflicts between evidence-based practice and the ideals of patient participation thus preventing a practice of 'McNursing'. [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]

Introduction: Engaging with patients about their lived experience of health and illness and their experience within the healthcare system can help inform the provision of care, health policies and health research. In the context of health research, however, operationalizing the levels of patient engagement is not straightforward. We suggest that a key challenge to the routine inclusion of patients as partners in health research is a lack of tangible guidance regarding how this can be accomplished. Methods: In this article, we provide guidance on how to codesign and operationalize a concrete patient engagement plan for any health research project. Results: We illustrate a seven‐step approach using the example of a national clinical trial in Canada and provide a patient engagement planning template for use in any health research project. Conclusion: Such concrete guidance should improve the design and reporting of patient engagement in health research. Patient or Public Contribution: The De‐Implementing Wisely Research group is informed by a national 9‐member patient partner council (PPC). The research team includes three lead patient partners who are coinvestigators on the grant that funds the program of research. Members of the council advise on all aspects of the study design and implementation. The ideas presented in this paper were informed by regular communication and planning with the PPC; specific contributions of lead patient partner authors are outlined as follows: Brian Johnston, Susan Goold and Vanessa Francis are patient partners with a wide breadth of experience in the healthcare system and health research projects. The guidance in this article draws on their lived and professional expertise. All patient partner authors contributed to the planning of the manuscript, participated in meetings to develop content and provided critical manuscript edits and comments on drafts. [ABSTRACT FROM AUTHOR]

Background: Community engagement is seen as key to citizen‐centred and sustainable healthcare systems as involving citizens in the designing, implementation and improvement of services and policies is thought to tailor these more closely to communities' own needs and experiences. Organizations have struggled to reach out to and involve disadvantaged citizens. This paper examines how if, why, and when low‐income citizens wish to be involved. Methods: For this qualitative realist case‐study, 19 interviews (one dyad) were held with (20) low‐income citizens in two Dutch municipalities. Additionally, the results were discussed with a reference panel consisting of professionals and citizens to enrich the results and to ensure the results had face validity. Results: The results showed four different ways in which low‐income citizens wished to be involved: (a) in a practical/volunteer way; (b) as a buddy; (c) as a lay expert; (d) not involved at all. The factors affecting citizens' interest and capacity to participate include citizens' own experiences of the services they access and their personal situations, e.g. their mental or physical health, extent of financial crisis, family situation, home environment. None of the interviewees was currently involved, but all had ideas for improving health(care) services and policies. Citizens' experiences of the services they accessed acted as a motivator for some to be involved as they wanted to ensure others would not have the same struggles, while for others their own needs and an apathetic system remained too high a barrier. To enable involvement, citizens need continued support for their own health(care) and financial situation, better communication and accessibility from services, practical support (e.g., training and bus passes) and recognition for their input (e.g., monetary compensation). Conclusion: The study shows that citizens' experiences of the services they accessed influenced if and how they wanted to be involved with health and care services. Despite the fact that all participants had shared solid ideas for improving services and policies, they were hindered by a bureaucratic, impersonal and inaccessible system. Organizations seem to underestimate the required investments to reach out to low‐income citizens and the support required to ensure their involvement. Patient and Public Involvement (PPI) in Study: Citizens as well as PPI organizations were members of the reference panel who helped formulate the research questions and recruitment strategy. The local reference panel also helped to interpret and refine the initial findings. [ABSTRACT FROM AUTHOR]

Patient participation in healthcare activities is key to producing successful patient‐centered care. However, little is known about both nurses' and patients' perspectives regarding patient participation in East Asia. This paper compared and contrasted perspectives of patient participation in healthcare activities between nurses and patients, using a qualitative study with a purposive sample of 39 nurses and 15 patients. A semi‐structured interview was applied to focus groups for nurses, and to face‐to‐face interviews for patients. Content analysis was utilized to analyze the data, and common themes and subthemes were identified showing three similarities (authoritative culture, participation behaviors, and obstacles to participation), and two differences (sources of acquiring patient‐related health information, and responsible party). Nurses and patients did not entirely view participation in healthcare activities congruently. Relevant clinical practices are also suggested, including respecting patients' autonomy, nurses' using layman's language for explanations, patients' understanding the meaning behind their participation behaviors, recognizing obstacles faced in enhancing patient participation with adjusted nursing workload, actively providing needed health information, and leading patients to realize that they will be responsible for their health behaviors after discharge. [ABSTRACT FROM AUTHOR]