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

An introduction to articles in the issue is presented on topics including how public involvement and engagement (PPIE) is increasingly required by research funders, the significance and benefit of PPIE when designing care services, and a burgeoning set of frameworks to aid PPIE efforts.

Introduction: People being investigated for cancer face a wealth of complex information. Non‐specific symptom pathways (NSS) were implemented in the United Kingdom in 2017 to address the needs of patients experiencing symptoms such as weight loss, fatigue or general practitioner 'gut feeling', who did not have streamlined pathways for cancer investigation. This study aimed to explore the health literacy skills needed by patients being investigated for cancer in NSS pathways. Methods: This study employed ethnographic methods across four hospitals in England, including interviews, patient shadowing and clinical care observations, to examine NSS pathways for cancer diagnosis. We recruited 27 patients who were shadowed and interviewed during their care. We also interviewed 27 professionals. The analysis focused on patient communication and understanding, drawing on the concepts of personal and organisational health literacy. Results: Our analysis derived six themes highlighting the considerable informational demands of the NSS pathway. Patients were required to understand complex blood tests and investigations in primary care and often did not understand why they were referred. The NSS pathway itself was difficult to understand with only a minority of patients appreciating that multiple organs were being investigated for cancer. The process of progressing through the pathway was also difficult to understand, particularly around who was making decisions and what would happen next. The results of investigations were complex, often including incidental findings. Patients whose persistent symptoms were not explained were often unsure of what to do following discharge. Conclusion: We have identified several potential missed opportunities for organisations to support patient understanding of NSS pathways which could lead to inappropriate help‐seeking post‐discharge. Patients' difficulties in comprehending previous investigations and findings could result in delays, overtesting or inadequately targeted investigations, hindering the effective use of their medical history. Third, patients' limited understanding of their investigations and results may impede their ability to engage in patient safety by reporting potential care errors. Patient or Public Contribution: Patient, public, clinical and policy representatives contributed to developing the research objectives through a series of meetings and individual conversations in preparation for the study. We have held several events in which patients and the public have had an opportunity to give feedback about our results, such as local interest groups in North London and academic conferences. A clinical contributor (J.‐A. M.) was involved in data analysis and writing the manuscript. [ABSTRACT FROM AUTHOR]

Background: Patients are increasingly being asked for feedback about their healthcare and treatment, including safety, despite little evidence to support this trend. This review identifies the strategies used to engage patients in safety during direct care, explores who is engaged and determines the mechanisms that impact effectiveness. Methods: A systematic review was performed of seven databases (CINAHL, Cochrane, Cochrane‐Central, Embase, ISI Web of Science, Medline, PsycINFO) that included research published between 2010 and 2020 focused on patient engagement interventions to increase safety during direct care and reported using PRISMA. All research designs were eligible; two reviewers applied criteria independently to determine eligibility and quality. A narrative review and realist synthesis were conducted. Results: Twenty‐six papers reporting on twenty‐seven patient engagement strategies were included and classified as consultation (9), involvement (7) and partnership (11). The definitions of 'patient engagement' varied, and we found limited details about participant characteristics or interactions between people utilizing strategies. Collaborative strategy development, a user‐friendly design, proactive messaging and agency sponsorship were identified as mechanisms to improve engagement about safety at the point of direct care. Conclusions: Agency sponsorship of collaboration between staff and patients is essential in the development and implementation of strategies to keep patients safe during direct care. Insufficient details about participant characteristics and patient–provider interactions limit recommendations for practice change. More needs to be learned about how patients are engaged in discussions about safety, particularly minority groups unable to engage with standard information. Patient or Public Contribution: Review progress was reported to the CanEngage team, including the consumer steering group, to inform project priorities (PROSPERO CRD42020196453). [ABSTRACT FROM AUTHOR]

Background: Consumer engagement in health care is recognized as a critical strategy to minimize healthcare‐associated harms, however, little research has focussed on strategies to engage young people in healthcare safety. This study explores the suitability of commonly used engagement strategies, such as brochures, interactive bedside charts or apps, for young people (14–25 years) to improve their healthcare safety, with a focus on cancer care. Methods: Four qualitative online workshops were conducted (N = 19). Two workshops included young people who had experienced cancer (n = 6) and two workshops included staff who support young people who had experienced a diagnosis of cancer (n = 12). Evidence from a systematic review was used to develop case studies of existing strategies as a topic guide for the online workshops. Data were analysed using a framework method and template analysis approach. Results: Thematic analysis against the analytic framework led to the development of four principles for engagement with young people: empowerment, transparency, participatory culture and flexibility. The transition from being 'looked after' to young people being responsible for their own care was an integrative theme which intersected all elements of the framework. Conclusion: For service providers to engage with young people about safety issues in cancer services, the strategies employed need to be tailored to consider the transitional nature of being an adolescent or young adult. A systemic approach that incorporates flexible, tailored engagement strategies, education and empowerment of young people and healthcare providers is required to engage effectively with young people about safety in healthcare. These findings may have implications beyond cancer care. Patient or Public Contribution: Workshop content was developed with and by the CanEngage team, including the Consumer Advisory Group, who reviewed content and inform wider project priorities. [ABSTRACT FROM AUTHOR]

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

Context: Collecting feedback from patients about their experiences of health care is an important activity. However, improvement based on this feedback rarely materializes. In this study, we focus on answering the question—"what is impeding the use of patient experience feedback?" Methods: We conducted a qualitative study in 2016 across three NHS hospital Trusts in the North of England. Focus groups were undertaken with ward‐based staff, and hospital managers were interviewed in‐depth (50 participants). We conducted a conceptual‐level analysis. Findings: On a macro level, we found that the intense focus on the collection of patient experience feedback has developed into its own self‐perpetuating industry with a significant allocation of resource, effort and time being expended on this task. This is often at the expense of pan‐organizational learning or improvements being made. On a micro level, ward staff struggled to interact with feedback due to its complexity with questions raised about the value, validity and timeliness of data sources. Conclusions: Macro and micro prohibiting factors come together in a perfect storm which provides a substantial impediment to improvements being made. Recommendations for policy change are put forward alongside recognition that high‐level organizational culture/systems are currently too sluggish to allow fruitful learning and action to occur from the feedback that patients give. [ABSTRACT FROM AUTHOR]

Objective: To identify barriers and facilitators to implementing a parent escalation of care process: Calling for Help (C4H). Design: Audits, semi‐structured interviews and focus groups guided by the Theoretical Domains Framework. Setting: Australian paediatric hospital where a parent escalation of care process was introduced in the previous 6 months. Participants: Four children, 13 parents, 91 nurses and doctors including Medical Emergency Team (MET) members. Main outcome measures: Parent awareness and involvement in escalating care and factors impacting implementation of C4H. Results: Two audits identified low level of parent awareness (16/88, 19% and 5/85, 6%). Parent involvement in escalation of care was documented in 11/62 (18%) events. The main facilitators included uniformly positive views that C4H was in the child's best interest, acknowledgement that parents had skills to recognize deterioration and would take action. C4H was considered to add to patient safety and being reviewed by the MET was a patient benefit. Key barriers were the low level of awareness, doubt about parent capabilities, concern about parents' information overload, anticipated overuse of resources, staff unease about possible repercussions and anticipated difficulty for parents to question staff with potential negative effects on parent‐staff relationships. Overall C4H presents a challenge to traditional hospital hierarchy and culture. Conclusions: Although there was a low level of awareness about C4H in practice, there was in‐principle support for the concept. Initial strategies had primarily targeted policy change without taking into account the need for practice and organizational behaviour changes. Using a theoretical approach to identify key factors will enable a targeted approach to implementation. [ABSTRACT FROM AUTHOR]

Abstract: Background: Globally, health‐care systems and organizations are looking to improve health system performance through the implementation of a person‐centred care (PCC) model. While numerous conceptual frameworks for PCC exist, a gap remains in practical guidance on PCC implementation. Methods: Based on a narrative review of the PCC literature, a generic conceptual framework was developed in collaboration with a patient partner, which synthesizes evidence, recommendations and best practice from existing frameworks and implementation case studies. The Donabedian model for health‐care improvement was used to classify PCC domains into the categories of “Structure,” “Process” and “Outcome” for health‐care quality improvement. Discussion: The framework emphasizes the structural domain, which relates to the health‐care system or context in which care is delivered, providing the foundation for PCC, and influencing the processes and outcomes of care. Structural domains identified include: the creation of a PCC culture across the continuum of care; co‐designing educational programs, as well as health promotion and prevention programs with patients; providing a supportive and accommodating environment; and developing and integrating structures to support health information technology and to measure and monitor PCC performance. Process domains describe the importance of cultivating communication and respectful and compassionate care; engaging patients in managing their care; and integration of care. Outcome domains identified include: access to care and Patient‐Reported Outcomes. Conclusion: This conceptual framework provides a step‐wise roadmap to guide health‐care systems and organizations in the provision PCC across various health‐care sectors. [ABSTRACT FROM AUTHOR]