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Introduction: Neonatal care is complex, involving multiple people and technologies within a community of care. When preterm babies are cared for far from home and/or transferred between units, the whole community of care (and particularly parent participation) is disrupted. Although previous studies have captured subjective experiences of parents, there has been little research exploring the material practices undertaken by parents as a consequence of place‐of‐care decisions, or the social organisation of those practices. Methods: As part of a wider study exploring optimal place‐of‐care, semistructured interviews were conducted between July 2018 and October 2019 with 48 parents (36 families) with one or more preterm babies (born at 27–31 weeks gestation) cared for in a neonatal unit in the last 12 months. Findings: We highlight parents' labour‐intensive and stressful work to: (1) parent in the neonatal care community (an oversight role that goes beyond contemporary notions of 'involvement'); (2) create continuity amid place‐of‐care disruptions; and (3) adapt to the managerial logics of neonatal care settings. Our analysis focuses on the work generated by managerial systems that organise place‐of‐care decision‐making and other efficiency‐focused practices. Parents are absorbed into negotiating institutional systems and diverted from routine parenting activities. Conclusion: Those involved in the organisation and management of neonatal care should take account of how managerial systems impact parents' workload, ability to participate in their baby's community of care and, ultimately, on the wellbeing and development of babies and their families. Patient or Public Contribution: The OPTI‐PREM study embedded parents' experiences of neonatal care into the research, through a discrete workstream that employed qualitative methodology to capture parents' experiences—as reported in this paper. The OPTI‐PREM project was also supported by a Bliss volunteer parent panel, which was involved in designing and overseeing the research. Bliss 'champion[s] the right for every baby born premature or sick to receive the best care by supporting families, campaigning for change and supporting professionals and enabling life‐changing research' (https://www.bliss.org.uk/about-us/about-bliss). A representative of Bliss is a co‐author of this manuscript, and a parent representative (named in the Acknowledgements) provided feedback during its preparation. [ABSTRACT FROM AUTHOR]

Background: The role of patient participation and representation during crises, such as the COVID‐19 pandemic, has been under‐researched. Existing studies paint a pessimistic picture of patient representation during the pandemic. However, there are indications that patient representatives have adapted to the new situation and can contribute to the resilience of healthcare systems. This paper aims to further explore the potential contribution of patient representatives for healthcare system resilience during the COVID‐19 pandemic. Methods: The study used a qualitative approach. We conducted a thematic analysis on the following data: interviews with client council members (n = 32) and representatives from patient organizations (n = 6) and focus groups (n = 2) to investigate patient representation on both the national policy level and organizational level in the Netherlands. Results: We identified the crisis discourse, the dependent position, the diversity of patient perspectives and the layered decision‐making structure as themes that help to understand what made patient representation in pandemic times a struggle for national and local patient representatives. The analysis of the subjects these representatives put forward during decision‐making shows that their input can play an important role in broadening discussions, challenging decisions, and suggesting alternatives during a crisis. We identified several strategies (e.g., collaborating with other actors, proactively putting subjects on the policy agenda, finding new ways of contacting their 'constituency') used by the patient representatives studied to exert influence despite the difficulties encountered. Conclusions: The struggle for patient representation during pandemic decision‐making is a missed opportunity for resilient healthcare systems as these representatives can play a role in opening up discussions and putting different perspectives to the fore. Moreover, the adaptive strategies used by representatives to influence decision‐making offer lessons for future representation activities. However, adaptations to the crisis decision‐making structure are also needed to enable patient representatives to play their role. Patient Contribution: We conducted interviews with patient representatives and discussed our preliminary findings with patient representatives during the focus groups. Zorgbelang, a patient organization supporting client councils and enabling and organizing patient participation for organizations and municipalities, was partner in this research and contributed to the interview guide, conducting interviews and focus groups. Additionally, the analysis made by the first author was discussed and refined multiple times with the partners of Zorgbelang and one of them co‐authored this paper. [ABSTRACT FROM AUTHOR]

Aim: To capture and retain healthcare staff in postgraduate courses relevant to individual career aspirations, service requirements and continuous practice development (CPD) within an English UK university. Design: Two virtual career clinics for postgraduate practitioners to engage in CPD offers within the university. An online post‐enrolment online survey to explore their experiences of engagement with the university. Methods: Mixed: qualitative and quantitative methods. Engaging 10 participants attended the career clinics, and 42 participants with an online survey. Results: The career clinics were well received by participants who mapped CPD requirements and individual career aspirations. The surveys exposed challenges with marketing and enrolment; however, these were mitigated with support. Four recommendations are presented within this paper applicable to the international postgraduate education of all health practitioners. [ABSTRACT FROM AUTHOR]

Background: The implementation science literature acknowledges a need for engagement of key stakeholders when designing, delivering and evaluating implementation work. To date, the literature reports minimal or focused stakeholder engagement, where stakeholders are engaged in either barrier identification and/or barrier prioritisation. This paper begins to answer calls from the literature for the development of tools and guidance to support comprehensive stakeholder engagement in implementation research and practice. The paper describes the systematic development of the Implementation‐STakeholder Engagement Model (I‐STEM) in the context of an international, large‐scale empirical implementation study (ImpleMentAll) aimed at evaluating the effectiveness of a tailored implementation toolkit. The I‐STEM is a sensitising tool that defines key considerations and activities for undertaking stakeholder engagement activities across an implementation process. Methods: In‐depth, semistructured interviews and observations were conducted with implementers who were tailoring implementation strategies to integrate and embed internet‐based cognitive behavioural therapy (iCBT) services in 12 routine mental health care organisations in nine countries in Europe and Australia. The analytical process was informed by principles of first‐ and third‐generation Grounded Theory, including constant comparative method. Results: We conducted 55 interviews and observed 19 implementation‐related activities (e.g., team meetings and technical support calls). The final outcome of our analysis is expressed in an initial version of the I‐STEM, consisting of five interrelated concepts: engagement objectives, stakeholder mapping, engagement approaches, engagement qualities and engagement outcomes. Engagement objectives are goals that implementers plan to achieve by working with stakeholders in the implementation process. Stakeholder mapping involves identifying a range of organisations, groups or people who may be instrumental in achieving the engagement objectives. Engagement approaches define the type of work that is undertaken with stakeholders to achieve the engagement objectives. Engagement qualities define the logistics of the engagement approach. Lastly, every engagement activity may result in a range of engagement outcomes. Conclusion: The I‐STEM represents potential avenues for substantial stakeholder engagement activity across key phases of an implementation process. It provides a conceptual model for the planning, delivery, evaluation and reporting of stakeholder engagement activities. The I‐STEM is nonprescriptive and highlights the importance of a flexible, iterative approach to stakeholder engagement. It is developmental and will require application and validation across a range of implementation activities. Patient or Public Contribution: Patient contribution to ImpleMentAll trial was facilitated by GAMIAN‐Europe at all stages—from grant development to dissemination. GAMIAN‐Europe brings together a wide variety of patient representation organisations (local, regional and national) from almost all European countries. GAMIAN‐Europe was involved in pilot testing the ItFits‐toolkit and provided their views on the various aspects, including stakeholder engagement. Patients were also represented in the external advisory board providing support and advice on the design, conduct and interpretation of the wider project, including the development of the ItFits‐toolkit. Trial registration: ClinicalTrials.gov NCT03652883. Retrospectively registered on 29 August 2018. [ABSTRACT FROM AUTHOR]

Background: People with an acquired brain injury (ABI) find it challenging to use social media due to changes in their cognition and communication skills. Using social media can provide opportunities for positive connection, but there is a lack of interventions specifically designed to support safe and successful social media use after ABI. Aims: To investigate the outcomes of completing a social media skills intervention and identify barriers and facilitators for future implementation. Methods & Procedures: The study used a mixed‐methods, pre‐post‐intervention design. A total of 17 adults with an ABI were recruited. Participants completed an intervention that included a short self‐guided course about social media skills (social‐ABI‐lity course), and then participated in a private, moderated Facebook group over a 12‐week period (social‐ABI‐lity Facebook group). Data were collected over this period through observation of group activity and weekly surveys. They were also collected on social media use and quality of life at pre‐intervention, post‐intervention and after 3 months. Participants provided feedback on the experience of participating in the programme via a post‐intervention interview. Outcomes & Results: At post‐intervention, there were significant improvements in confidence in using Facebook (p = 0.002) and enjoyment of using Facebook to connect with others (p = 0.013). There was no significant change in reported quality of life, although participants described the multiple benefits of connection they perceived from involvement in the group. Observational data and feedback interviews were informative about the feasibility and acceptability of the intervention. Conclusions & Implications: This pilot study provided preliminary evidence that an intervention comprising a short, self‐guided training course and a private, moderated Facebook group improved outcomes for people with ABI. Key recommendations for future implementation include embedding active peer moderators within groups and taking an individualized approach to delivery of the intervention. WHAT THIS PAPER ADDS: What is already known on the subject: Research has documented the challenges that people with ABI experience in using social media, and the difficulty for rehabilitation clinicians in providing appropriate support in this field. What this paper adds to existing knowledge: This pilot study reports the outcomes of people with ABI completing a short, self‐guided social media skills course and participating in a private, moderated Facebook group. After the intervention, participants reported significantly increased confidence and enjoyment in using Facebook, described the benefits of connection found in the groups, and suggested potential improvements for future implementation. What are the potential or actual clinical implications of this work?: With the growing use of social media for connection and participation, there is a professional obligation to address social media communication skills in cognitive–communication rehabilitation for people with ABI. The findings of this study will inform interventions and future research to assist people with ABI to build their social media skills for communication, social support and a sense of connection. [ABSTRACT FROM AUTHOR]

Introduction: Telepractice service delivery of allied health interventions to people with disability can potentially reduce access barriers and improve service equity. However, questions remain regarding telepractice functionality for people with disability. This study addressed questions related to how allied health clinicians and managers perceive telepractice as functioning in the provision of therapy services to people with disability. Methods: Thirteen interviews of allied health clinicians and managers from across Australia were conducted between 21 November and 22 February via MS teams. Qualitative methodology and critical realist theoretical paradigm underpin the study. Data analysis was completed using a reflective thematic analysis method and five themes were generated and described utilising an analytic metaphor. Results: The study themes were described in relation to a shopping for shoes analytic metaphor and the five themes included (1) a shoe for every foot, (2) planned purchases, (3) shoe on the other foot, (4) you need both shoes and (5) help choosing their shoes. In summary, the function of telepractice fits differently for each individual, similar to pairs of shoes. Conclusions: Telepractice has its own strengths and weaknesses and isn't a direct substitute for in‐person sessions, much like left and right shoes are similar but not the same. The results support participant perceptions that telepractice functions best as an adjunct to in‐person sessions through a flexible hybrid delivery model in the provision of therapy services to people with a disability. A strategy for improving perceived usefulness may involve positioning telepractice as unique with strengths and weaknesses, not replacing in‐person care. Patient or Public Contribution: The paper forms part of a larger codesign process which included customer and carer participants throughout the design and planning of the project, inclusion of a peer researcher, and the selection of the analytic metaphor including in the findings of this article production. [ABSTRACT FROM AUTHOR]

Aim: The aim of the study was to explore and understand the organizational culture of a workplace in terms of support and well‐being for staff experiencing perimenopausal and menopausal symptoms at work. Design: It is widely acknowledged that perimenopause and menopause symptoms are experienced by a large percentage of the female workforce. There is a lack of research into how nurses are supported through menopause (Cronin et al. Issues in Mental Health Nursing, 42, 2021, 541–548). The perimenopause and menopause transition can be a challenging time where many may require symptom management and support (RCN, The Menopause and Work: Guidance for RCN Representatives, 2020). This paper presents a case study research (CSR) approach to examine one healthcare organization. Methods: CSR design was used: A survey distributed to all staff employed, a review of the available documentation on menopause and interviews with managers from different levels of the organization. The COREQ consolidated criteria was used for reporting the qualitative research reported this study. Results: The case study generated both quantitative and qualitative data using surveys, interviews and documentation. Data from the organization (n = 6905) showed a majority female workforce of 81.9% with 40.6% aged between 41 and 55 years old, meaning a third of the organization working through perimenopause and menopause. Survey responses (n = 167) collected biographical and psychometric data on the prevalence of perimenopausal and menopausal symptoms. Seven managers were interviewed highlighting two themes: Access to support and culture of menopause and 13 documents from the organization on menopause were analysed for content. The study design permitted an iterative approach to data collection and providing an in‐depth understanding of the needs and support for those experiencing perimenopause and menopause. The findings help healthcare organizations to understand their workforce and take in to account the larger numbers of female employees particularly nurses with the need to provide person‐centred support mechanisms and an organizational approach for all employees. [ABSTRACT FROM AUTHOR]

Background: Online knowledge translation (KT) approaches are becoming increasingly prevalent within healthcare due to their accessibility and facilitation of international support networks. Online platforms enable timely and far‐reaching dissemination of current evidence and best‐practice recommendations. Although there is potential to improve the uptake of rehabilitation guidelines, it is essential to consider the acceptability of online approaches to healthcare professionals to ensure their successful integration within everyday clinical settings. Aims: To establish the prospective acceptability of a theoretically informed online intervention for speech pathologists, Aphasia Nexus: Connecting Evidence to Practice, that aims to facilitate the implementation of aphasia best practice. Methods & Procedures: A mixed‐methods multinational electronic survey based on the Theoretical Framework of Acceptability (TFA) completed by aphasia researchers and clinicians. Outcomes & Results: A total of 43 participants completed the survey with 91% (n = 39) indicating that they would use Aphasia Nexus. Understanding the intervention and how it works (intervention coherence as per the TFA) was the key factor influencing the likelihood of integration within everyday clinical practice. Participants identified potential areas where the intervention could influence service change and also recommended further design and content changes to improve the intervention. Conclusions & Implications: Aphasia Nexus is an acceptable platform for further feasibility testing in the form of a pilot trial within an Australian‐based health service. The study progresses the theory of TFA as it was a valuable framework facilitating the identification of prominent factors influencing acceptability. The study also informs further intervention refinements in preparation for the next stage of research. WHAT THIS PAPER ADDS: What is already known on the subject: Online strategies have the potential to enhance KT and promote the uptake of rehabilitation guidelines. An online intervention, however, can only be effective if implemented well. For this reason, it is essential to establish the acceptability of online interventions to the intended recipients and therefore increase the likelihood of successful implementation. What this paper adds to existing knowledge: This study used a theoretically based framework to establish the acceptability of an online implementation intervention, Aphasia Nexus, to multinational aphasia clinicians and researchers. It demonstrated the value in identifying the prominent factors influencing acceptability to inform further intervention refinements and warrant continuing research. What are the potential or actual clinical implications of this work?: Speech pathologists should use online platforms to drive the implementation of best practice on an international scale. It is important for clinicians to have an in‐depth understanding of online interventions and how they work to enhance their successful uptake into routine clinical practice. Aphasia Nexus is an acceptable online platform for implementing best practice in aphasia. [ABSTRACT FROM AUTHOR]

Background: Acquired laryngotracheal stenosis (LTS) is a rare condition that causes breathlessness and dyspnoea. Patients have reconstructive airway surgery to improve their breathing difficulties, but both LTS and the surgery can cause voice difficulties. The existing evidence base for management of voice difficulties for adults with LTS focuses on symptoms. There is limited information to provide clinical guidance for speech and language therapists (SLTs) and a limited understanding of the impact of voice changes on adults with LTS. Aim: To investigate the lived experience of adults with laryngotracheal stenosis (LTS), who have had reconstructive surgery; here focussing on voice concerns with the aim of guiding clinical care for SLTs. Methods and Procedures: A phenomenological, qualitative study design was used. Focus groups and semi‐structured interviews were completed with adults living with LTS who had had reconstructive surgery. Audio recordings were transcribed and inductive thematic analysis was used by the research team to identify themes and sub‐themes. Outcomes and Results: A total of 24 participants (five focus groups and two interviews) took part in the study before thematic saturation was identified in analysis. Three main themes were identified specific to the experience of living with LTS: the Medical, Physical and Emotional journey. All participants referenced voice difficulties as they related to each of these overall themes. Sub‐themes directly related to voice included experience of surgery, information provision, staff expertise/complacency, symptoms, symptom management, identity, support networks, impact on life and living with a chronic condition. Conclusions and Implications: In this qualitative study participants have described the integral part voice difficulties play in their lived experience of LTS and reconstructive surgery. This is considered in the context of their clinical care and the need for individualised management and information provision throughout the course of their condition. The broader research literature relating to voice difficulties is explored with links made to people with LTS and recommendations made for future research into people living with LTS and dysphonia. What this paper adds: What is already known on this subject: Adults with laryngotracheal stenosis (LTS) experience voice changes as a result of their condition, and the surgeries necessary as a treatment. These changes can lead to altered pitch, vocal fatigue, loss of pitch range and loss of volume control. Although there are known psychosocial implications both to living with a chronic condition and voice difficulties there has been no research exploring this in adults with LTS, and there is minimal clinical guidance for speech and language therapists (SLTs) working with these patients. What this paper adds to existing knowledge: This research is the first study to explore the lived experience of adults with LTS who undergo reconstructive surgery, focusing on their voice concerns. This study demonstrates the multifactorial impacts of voice changes on all aspects of the lives of adults with LTS and the need for individualised information provision and clinical care to help support them. What are the potential or actual clinical implications of this work?: Adults with LTS want expert SLTs to facilitate their care and support them throughout their LTS journey alongside other support networks. They want to be carefully prepared for reconstructive surgery and given clear information about symptoms and management of their voice difficulties. This has led to the reorganisation of the care pathway at our centre, and the introduction of a patient‐led pretreatment session. [ABSTRACT FROM AUTHOR]

Background: There has been a significant uptake in the use of telepractice during the coronavirus SARS‐CoV‐2 (COVID‐19) pandemic. This study explored the experiences of speech and language therapists (SLTs), assistants (SLTAs) and parents with telepractice during the COVID‐19 pandemic. Aims: (1) To identify factors that influenced success of telepractice; and (2) to describe clinicians' and parents' preferences for the future mode of service delivery for preschoolers with communication disorders. Methods & Procedures: The study was conducted in partnership with one publicly funded programme in Ontario, Canada, that offered services to preschoolers with speech, language and communication needs at no cost. SLTs (N = 13), assistants (N = 3) and parents (N = 13) shared their experiences and perspectives during semi‐structured videoconference interviews. Outcomes & Results: Factors that influenced the success of telepractice were reported in three categories: the setting (i.e., where and how telepractice was being delivered); the nature of telepractice (i.e., the services that were provided via telepractice); and the individuals (i.e., who was involved in telepractice). These factors were reported to interact with each other. As the needs for each child and family are unique, parents and clinicians reported a preference for a hybrid and flexible service delivery model in the future. Conclusions & Implications: The themes identified in this study can be used by clinicians and managers to consider factors that influence the success of telepractice for children and families. WHAT THIS PAPER ADDS: What is already known on the subject?: Studies conducted before the COVID‐19 pandemic showed that telepractice was an effective and acceptable service approach. However, some clinicians and parents reported wanting to resume in‐person visits. The provision of telepractice services to families with children with communication disorders increased significantly during COVID‐19. What this paper adds to existing knowledge?: Parents and clinicians shared factors that influenced the success of telepractice during semi‐structured interviews. Factors were identified in three categories: the setting (i.e., where and how telepractice was being delivered); the nature of telepractice (i.e., the services that were provided via telepractice); and the individuals (i.e., who were involved in telepractice). As each child's and family's needs are unique, parents and clinicians reported a preference for a hybrid and flexible service delivery model in the future. What are the potential or actual clinical implications of this work?: SLTs and SLT managers can use the factors identified to discuss with parents and decide whether telepractice may be well suited to the needs of each child and family. [ABSTRACT FROM AUTHOR]

Many Australians are requiring mental health care, including families, leading to long wait times in order to access support. Walk‐in therapy reduces barriers to mental health support services by providing support at the time that families seek help. This paper presents a proof‐of‐concept study investigating the acceptability and short‐term effectiveness of an online walk‐in family therapy service, Walk‐in Together (WIT). Part 1 of the paper describes the experiences of 44 family members from 22 families who presented to a public family therapy clinic for a virtual walk‐in family therapy session. The session was conducted by a team of three experienced family therapists. Family members' experiences were sought pre‐session, post‐session, and at 6 weeks follow‐up via survey and interview. Part 2 of the paper explores therapist perceptions (n = 7) of the WIT approach, through thematic analysis of semi‐structured interview data. Post‐session feedback showed 85% of family members found WIT to be helpful and 50% were optimistic about their future as a family after their WIT session. Six weeks post‐session it was revealed that WIT supported planning for families in equipping them to move forward with 88% of family members reporting that they knew what to do after the session. All therapists uniformly experienced the model as offering a timely and beneficial service, suitable for diverse presentations and constellations of families. These preliminary results suggest the significant utility of this WIT intervention as a well‐received and helpful service for families, who valued the easy access and rapid therapeutic response afforded by the online, walk‐in delivery model. This proof‐of‐concept paper suggests the potential for further development and growth of WIT, as well as other mental health support services using a walk‐in, telehealth model to meet the rising demand for therapeutic support for families in distress. [ABSTRACT FROM AUTHOR]

Background: Inflammatory bowel diseases (IBDs) are chronic gastrointestinal diseases that negatively affect the enjoyment of food and engagement in social and cultural gatherings. Such experiences may promote psychosocial challenges, an aspect of IBD often overlooked and under‐supported in clinical settings and research. Objectives: This study explored the psychosocial experiences that young adults with IBD have with food via a qualitative patient‐led research process. Methods: Trained patient researchers conducted this study by engaging peers via semi‐structured interviews and focus groups in a three‐step co‐design process. Participants (n = 9) identified the research topic (SET), explored the topic and identified emerging themes (COLLECT), refined themes and made recommendations for healthcare system change (REFLECT). Results: Themes that emerged included: 'Experimenting with Food', 'Evolution Over Time', 'Diet Changes are Emotional' and 'Role of Stigma'. Participants identified the significance and frustrations of repeated testing and experimenting with food compatibility, and noted nuances in food relationships as they gain knowledge and experience over time. They emphasized the importance of maintaining a sense of hope throughout and wished to impart this to newly diagnosed patients. Conclusion: Participants experience numerous psychosocial challenges as they strive to manage their diet, noting gaps in support available from IBD practitioners. Participants made practical recommendations for healthcare system change to improve patient outcomes, highlighting the importance of sharing stories and collaboratively including patients in the development of new services and protocols. Authors recommend further research in this area to build a body of knowledge and support that helps IBD patients maintain hope while navigating challenges with food. Patient or Public Contribution: The first four authors on this paper were the lead researchers in this study's design and analysis and identify as patients; they conducted the research with this identity at the forefront following a peer‐to‐peer research model. These authors were mentored by patient researchers who also contributed to the manuscript, and the research process itself was co‐lead and directed by other patient participants and consultants. Results and recommendations coming from this paper came directly from patient participants. [ABSTRACT FROM AUTHOR]

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

Introduction: The COVID‐19 pandemic has had an impact on all aspects of the health system. Little is known about how the activities and experiences of patient, family and caregiver partners, as a large group across a variety of settings within the health system, changed due to the substantial health system shifts catalysed by the pandemic. This paper reports on the results of a survey that included questions about this topic. Methods: Canadian patient, family and caregiver partners were invited to participate in an online anonymous survey in the Fall of 2020. A virtual snowballing approach to recruitment was used. Survey invitations were shared on social media and emailed to health system and governmental organizations with the request that they share the survey with patient partners. This paper focuses on responses to two questions related to patient partner experiences during the COVID‐19 pandemic. Results: The COVID‐19 questions were completed by 533 respondents. Over three quarters of respondents (77.9%, n = 415) indicated their patient engagement activities had been impacted by COVID‐19. The majority (62.5%, n = 230) experienced at least a temporary or partial reduction in their patient engagement activities. Some respondents did see increases in their patient engagement activities (11.4%, n = 42). Many respondents provided insights into their experience with virtual platforms for engagement (n = 194), most expressed negative or mixed experiences with this shift. Conclusions: This study provides a snapshot of Canadian patient, family and caregiver partners' perspectives on the impact of COVID‐19 on their engagement activities. Understanding how engagement unfolded during a crisis is critical for our future planning if patient engagement is to be fully integrated into the health system. Identifying how patient partners were engaged and not engaged during this time period, as well as the benefits and challenges of virtual engagement opportunities, offers instructive lessons for sustaining patient engagement, including the supports needed to engage with a more diverse set of patient, family and caregiver partners. Patient Contribution: Patient partners were important members of the Canadian Patient Partner Study research team. They were engaged from the outset, participating in all stages of the research project. Additional patient partners were engaged to develop and pilot test the survey, and all survey respondents were patient, family or caregiver partners. The manuscript is coauthored by two patient partners. [ABSTRACT FROM AUTHOR]

Background: Measuring, assessing and managing outcomes in school practice environments is difficult due to the complex nature of school communities as well as the recent shift in service‐delivery models towards tiered approaches. In tiered approaches, multiple levels of service are offered to better match students' needs. Each level of service may require different outcomes and management techniques. Research to date on outcomes has focused on measuring outcomes in medical settings, leaving a substantive gap in the literature regarding practice in schools. Aims: The first aim was to explore how school‐based speech–language therapists approached outcomes management as their clinical programmes transitioned to tiered service‐delivery models The second aim was to describe the successes and challenges in outcomes management reported by clinicians in this context. Methods & Procedures: A secondary deductive‐inductive content analysis was performed using qualitative interviews with 24 clinical managers and senior therapists from schools across Ontario, Canada. Using a framework of outcomes measurement, assessment and management in schools based on previous research studies, data were grouped into broad categories deductively, and then the content of each category was further explored using inductive coding. Iterative peer debriefing and reflexive journaling were key strategies to increase the trustworthiness of the results. Findings & Results: Participants reported measuring and qualitatively assessing seven key outcomes for school‐based practice. These included: (1) student progress and achievement, (2) student participation and inclusion in the school community, (3) stakeholder perspectives, (4) 'buy‐in', (5) expanded capacities, (6) responsiveness to needs and (7) accountability to systems. Participants reported more challenges than successes in outcomes management during this transition to tiered services. Challenges were attributed to idiosyncratic organizational barriers, the transition to tiered models and the philosophy of working within the educational system. Conclusions & Implications: School‐based speech–language therapists measure, assess and manage multiple outcomes relevant to school‐based practice in tiered service‐delivery models. Many challenges remain. Solutions to support meaningful, systematic and proactive outcomes management in schools should address the broader set of outcomes relevant to tiered service‐delivery models and the unique practice context of the educational system, while remaining responsive to idiosyncratic organizational factors. Sustained clinical–research collaboration and knowledge exchange is recommended. What This Paper Adds: What is already known on the subject: Systematic, proactive collection and interpretation of outcomes has long been encouraged within speech–language therapy. However, implementing outcomes management in clinical practice remains a substantial challenge. Additionally, research on outcomes to date has focused on medical practice environments, to the exclusion of school‐based practice. What are the potential or actual clinical implications of this work?: Outcomes management is valued in school practice environments; however, the current repertoire of techniques for outcomes management are a poor match for school‐based practice. Clinicians in schools would benefit from the development of contextually relevant, meaningful and feasible outcomes management tools. [ABSTRACT FROM AUTHOR]

Context: Transitions of patient care responsibility occur frequently between physicians. Resultant discontinuities make it difficult for physicians to observe clinical outcomes. Little is known about what physicians do to overcome the practical challenges to learning these discontinuities create. This study explored physicians’ activities in practice as they sought follow‐up information about patients. Methods: Using a constructivist grounded theory approach, semi‐structured interviews with 18 internal medicine hospitalist and resident physicians at a single tertiary care academic medical center explored participants’ strategies when deliberately conducting follow‐up after they transitioned responsibility for patients to other physicians. Following open coding, the authors used activity theory (AT) to explore interactions among the social, cultural and material influences related to follow‐up. Results: The authors identified three themes related to follow‐up: (i) keeping lists to track patients, (ii) learning to create tracking systems and (iii) conducting follow‐up. Analysis of participants' follow‐up processes as an activity system highlighted key tensions in the system and participants’ work adaptations. Tension within functionality of electronic health records for keeping lists (tools) to find information about patients’ outcomes (object) resulted in using paper lists as workarounds. Tension between paper lists (tools) and protecting patients’ health information (rules) led to rule‐breaking or abandoning activities of locating information. Finding time to conduct desired follow‐up produced tension between this and other activity systems. Conclusion: In clinical environments characterised by discontinuity, lists of patients served as tools for guiding patient care follow‐up. The authors offer four recommendations to address the tensions identified through AT: (i) optimise electronic health record tracking systems to eliminate the need for paper lists; (ii) support physicians’ skill development in developing and maintaining tracking systems for follow‐up; (iii) dedicate time in physicians’ work schedules for conducting follow‐up; and (iv) engage physicians and patients in determining guidelines for longitudinal tracking that optimise physicians’ learning and respect patients’ privacy. [ABSTRACT FROM AUTHOR]

Objective: To explore how four small towns in rural New South Wales known as the 4Ts are addressing challenges accessing quality care and sustainable health services through a collaborative approach to workforce planning using the collaborative care framework. Design: Descriptive case study approach. Setting: The collaborative care project was developed as a result of ongoing partnerships between 2 rural Local Health Districts, 2 Primary Health Networks and a non‐governmental health workforce organisation. The collaboration works with 5 subregions each comprising 2 or more rural communities. This paper focuses on the 4Ts subregion. Participants: Stakeholders of the collaborative design including organisations and the community. Intervention: A place‐based approach to co‐designing health services with community in one sub‐region of Western New South Wales. Main outcome measures: A synthesis of field observations and experiences of community and jurisdictional partners in implementation of the 4Ts subregional model. Mapping of implementation processes against the collaborative care framework. Results: The collaborative care framework is a useful planning and community engagement tool to build health workforce literacy and to impact on system change at the local level. We identify key elements of effectiveness in establishing the 4Ts model, including the need for coordinated health system planning, better integrating existing resources to deliver services, community engagement, building health workforce literacy and town‐based planning. Conclusion: This study adds to the body of knowledge about how to successfully develop a collaborative primary health care workforce model in practice. The findings demonstrate that the implementation of a collaborative primary health care workforce model using the collaborative care framework can improve service access and quality, which in turn might facilitate workforce sustainability. [ABSTRACT FROM AUTHOR]

Objective: To investigate the experience of nurses involved in decision‐making to transfer residents from a residential aged care facility (RACF) to their local hospital emergency department. This paper reports on the findings of the second phase of a two‐phase study. Methods: Qualitative semi‐structured interviews with 19 aged care nurses were conducted. Interviews were audio‐taped and transcribed verbatim, and a thematic analysis was carried out. Results: The analysis revealed five major themes that influenced decision‐making in relation to the transfer of a resident from the residential aged care facility to the emergency department: conflict with key stakeholders; knowledge and experience; policy and process; stakeholder perception; and recognition and support. Conclusions: Robust outreach programs, support from other health‐care professionals, and improving interdisciplinary understanding and communication between aged care nurses, paramedics and the emergency department would be advantageous to ensure effective care delivery and decision‐making. [ABSTRACT FROM AUTHOR]

Background: Implementation science (IS) should contribute to maintaining high standards of care across healthcare systems and enhancing care practices. However, despite the evident need for greater and more rapid uptake and integration of evidence in practice, IS design and methodology fall short of the needs of effective translation. Aim: In this paper we examine what it is about IS that makes it so appealing for effective uptake of interventions in routine practice, and yet so difficult to achieve. We propose a number of ways that implementation scientists could build mutual relationships with healthcare practitioners and other stakeholders including public members to ensure greater shared care practices, and highlight the value of IS training, collaborative educational events, and co‐designed research. Discussion: More consideration should be given to IS applications in healthcare contexts. Implementation scientists can make a valuable contribution by mobilizing theory and improving practice. However, goals for an evidence‐based system may be more appropriately achieved through greater outreach and collaboration, with methods that are flexible to support rapid implementation in complex adaptive systems. Collective learning and mutual trust can be cultivated by embedding researchers into healthcare services while offering greater opportunities for practitioners to learn about, and engage in, implementation research. Conclusion: To bridge the worlds of healthcare practice and IS, researchers could be more consistent in the relationships they build with professionals and the public, communicating through a shared language and co‐joining practical approaches to effective implementation. This will build capacity for improved collaboration and foster respectful, interdisciplinary relationships. [ABSTRACT FROM AUTHOR]

Background: Prioritized research agendas are viewed internationally as an important method for ensuring that health research meets actual areas of clinical need. There is growing evidence for speech–language therapy‐prioritized research agendas, particularly in disorder‐specific areas. However, there are few general research priority agendas to guide speech–language therapy research. Aims: To collaboratively develop a prioritized research agenda for an Australian public health context with clinical speech–language therapists (SLTs), academic SLTs and consumers of speech–language therapy services. Methods & Procedures: An initial stimulus list of potential research areas for prioritization was collected from SLTs via an online survey. Two categories (service delivery and expanded scope of practice) were selected from this list for prioritization due to their relevance across multiple health services. The Nominal Group Technique (NGT) was used to develop a prioritized research agenda for each of the two categories. One NGT session was conducted with each of the three participant groups (clinical SLTs, academic SLTs, consumers) for each category (total NGT sessions = six). The prioritization data for each group within each category were summed to give a single, ranked prioritized research agenda for each category. Outcomes & Results: Two prioritized research agendas were developed. Within each agenda, SLTs and consumers prioritized a need for more research in areas related to specific practice areas (e.g., Alternative and Augmentative Communication, Communication Partner Training), as well as broader professional issues (e.g., telehealth, working with culturally and linguistically diverse families). Conclusions & Implications: The current findings support the need for funding proposals and targeted projects that address these identified areas of need. What this paper adds: What is already known on this subject: Evidence‐based practice is a critical component of SLT practice. There is often a disconnect between the research evidence generated and areas of clinical need, and in some areas a lack of evidence. Prioritized research agendas can help drive research in areas of clinical need. What this paper adds to existing knowledge: A collaborative, prioritized SLT research agenda was developed using the NGT according to the views of clinical SLTs, academic SLTs and consumers of speech–language therapy services in a conglomerate of public health services. SLTs and consumers identified a need for further research in specific areas of SLT practice as well as broader emerging professional issues What are the potential or actual clinical implications of this work?: Targeted research projects funded on a large scale are required to address these identified areas of need. Other health services around the world could replicate this prioritization process to drive research in areas of clinical need [ABSTRACT FROM AUTHOR]

Introduction: Deaths in care homes and "at home" are anticipated to account for a third of UK deaths by 2040. Currently, palliative and end of life care are not part of statutory training in care homes. Reflective practice is a tool that can facilitate practice‐based learning and support. Following a feasibly study to test "online" supportive conversations and reflection sessions (OSCaRS) to support care home staff in relation to death/dying during the first months of the COVID pandemic, a one‐year practice development follow‐up project was undertaken with the aim to create a team of NHS/specialist palliative care (SPC)‐based facilitators to lead and support OSCaRS provision in up to 50 care homes in one region in Scotland—the focus of this paper. Methods: Forty care home managers attended an on‐line session explaining the project, with a similar session held for 19 NHS/SPC‐based nurses external to care homes. Those interested in facilitating OSCaRS then attended three education sessions. Data collected: records of all activities; reflective notes on OSCaRS organised/delivered; a summary of each OSCaRS reflection/learning points; final interviews with NHS/SPC trainee facilitators. Results: A total of 19 NHS/SPC facilitators delivered one or more OSCaRS in 22 participating care homes. However, as of January 2022 only six trained facilitators remained active. Out of the 158 OSCaRS arranged, 96 took place with a total of 262 staff attending. There were three important aspects that emerged: the role, remit, and resources of NHS/SPC supporting OSCaRS; requirements within care homes for establishing OSCaRS; and, the practice‐based learning topics discussed at each OSCaRS. Conclusion: Attempts to establish a team of NHS/SPC facilitators to lead OSCaRS highlights that end of life care education in care homes does not clearly fall within the contractual remit of either group or risks being missed due to more pressing priorities. [ABSTRACT FROM AUTHOR]

Background: The Veterans Health Administration (VHA) is building a Whole Health system of care that aspires to empower and equip each Veteran to pursue a personally meaningful vision of health and well‐being. As part of this effort, VHA has developed Taking Charge of My Life and Health (TCMLH), a peer‐led, group‐based programme that seeks to support Veterans in setting and pursuing health and well‐being goals. Prior research showed TCMLH groups to positively impact Veteran outcomes; yet, little is known about Veterans' own experiences and perspectives. Methods: We completed semi‐structured telephone interviews with 15 Veterans across 8 sites who had participated in TCMLH groups offered by the VHA in the virtual format between Summer 2020 and Fall 2021. Inductive thematic analysis was applied to interview transcripts to generate themes. Findings: We identified five themes regarding Veterans' experiences with TCMLH: (1) navigating the virtual format; (2) internalizing the value of health engagement; (3) making healthy lifestyle changes; (4) forging social connections; and (5) taking on a more active role in healthcare. Conclusion: Veterans perceived virtual TCMLH groups as meaningful and beneficial, yet also highlighted several challenges. Their perspectives speak to the need to supplement time‐limited programmes like TCMLH with ongoing, community‐based support. Virtual group‐based well‐being programmes are a promising innovation. Other healthcare systems may draw on VHA's experience while tailoring format and content to the needs of their patient populations. Patient or Public Contribution: Veterans were involved as evaluation participants. A Veteran consultant, who is a coauthor on this paper, was engaged through the conceptualization of the evaluation, development of data collection materials (interview guide) and writing. [ABSTRACT FROM AUTHOR]

The COVID‐19 pandemic presented numerous challenges to acute malnutrition screening and treatment. To enable continued case identification and service delivery while minimising transmission risks, many organisations and governments implemented adaptations to community‐based management of acute malnutrition (CMAM) programmes for children under 5. These included: Family mid‐upper arm circumference (MUAC); modified admission and discharge criteria; modified dosage of therapeutic foods; and reduced frequency of follow‐up visits. This paper presents qualitative findings from a larger mixed methods study to document practitioners' operational experiences and lessons learned from these adaptations. Findings reflect insights from 37 interviews representing 15 organisations in 17 countries, conducted between July 2020 and January 2021. Overall, interviewees indicated that adaptations were mostly well‐accepted by staff, caregivers and communities. Family MUAC filled screening gaps linked to COVID‐19 disruptions; however, challenges included long‐term accuracy of caregiver measurements; implementing an intervention that could increase demand for inconsistent services; and limited guidance to monitor programme quality and impact. Modified admission and discharge criteria and modified dosage streamlined logistics and implementation with positive impacts on staff workload and caregiver understanding of the programme. Reduced frequency of visits enabled social distancing by minimising crowding at facilities and lessened caregivers' need to travel. Concerns remained about how adaptations impacted children's identification for and progress through treatment and programme outcomes. Most respondents anticipated reverting to standard protocols once transmission risks were mitigated. Further evidence, including multi‐year programmatic data analysis and rigorous research, is needed in diverse contexts to understand adaptations' impacts, including how to ensure equity and mitigate unintended consequences. Key messages: COVID‐19 CMAM programme adaptations enabled service continuity despite pandemic‐related challenges. Further evidence is needed on long‐term impacts.Family MUAC was well‐accepted and addressed screening gaps from COVID‐19 disruptions. Challenges included sustaining caregiver measurement accuracy; handling inaccurate self‐referrals to encourage health‐seeking behaviours; and limited programme design and monitoring guidance and tools.Modified admission criteria and therapeutic food dosage reduced contact between staff and children and streamlined logistics and implementation. Concerns remained about effects on programme admissions and outcomes.Reduced frequency of follow‐up visits successfully reduced facility crowding and need for caregiver travel. However, infrequent monitoring of childrenmay miss deterioration. [ABSTRACT FROM AUTHOR]

Introduction: Women experiencing intimate partner violence (IPV) do not tend to go very frequently to formal support services. The objective of this study is to identify barriers related to the accessibility, acceptability, equity, appropriateness and effectiveness of IPV services from the perspective of the professionals working in the IPV public services. Methods: A qualitative study was carried out in the Madrid region based on 13 semi‐structured interviews of young women who had survived IPV as well as 17 interviews with professionals. A thematic content analysis was performed, guided by the dimensions proposed by the World Health Organization (WHO) for friendly services for young people. Results: From the perspective of the young women and professionals, barriers were identified for all the dimensions of the WHO's friendly services for young people: accessibility: lack of information and support from the social setting, scarce dissemination of the services, economic cost, non‐adapted schedules, inadequate locations or lack of services in settings close to young people; acceptability: lack of protocols to guarantee confidentiality, lack of speed in the provision of services or their referral, unwelcoming environments or unsympathetic professional malpractice; equity: discriminatory professional attitudes towards groups with different social status and lack of protocols to ensure the care of these groups; appropriateness: unmet needs and lack of multidisciplinary teams; and effectiveness: shortage of time, resources, competent professionals, protocols and coordination. Conclusions: Strategies are needed to make the necessary changes to promote friendly services for the care of young people exposed to IPV. Additionally, it must be emphasized that resources are needed to raise awareness and disseminate IPV services, as well as to train professionals in this area. Patient or Public Contribution: This paper is based on professionals' perspectives of public IPV‐related services of different areas such as Psychology, Social Work, Nursing, Psychiatry, Social Education and young women exposed to IPV. They either work in the public administration at the local, regional or state level or in NGOs in Spain. [ABSTRACT FROM AUTHOR]

Objectives: SlowMo therapy is a pioneering blended digital therapy for paranoia, augmenting face‐to‐face therapy with an interactive 'webapp' and a mobile app. A recent large‐scale trial demonstrated small–moderate effects on paranoia alongside improvements in self‐esteem, worry, well‐being and quality of life. This paper provides a comprehensive account of therapy personalisation within this targeted approach. Design: Case examples illustrate therapy delivery and descriptive data are presented on personalised thought content. Method: Thought content was extracted from the webapp (n = 140 participants) and coded using newly devised categories: Worries: (1) Persecutory, (2) Negative social evaluation, (3) Negative self‐concept, (4) Loss/life stresses, (5) Sensory‐perceptual experiences and (6) Health anxieties. Safer thoughts: (1) Safer alternative (specific alternatives to worries), (2) Second‐wave (generalised) coping, (3) Positive self‐concept, (4) Positive activities and (5) Third‐wave (mindfulness‐based) coping. Data on therapy fidelity are also presented. Results: Worries: 'Persecutory' (92.9% of people) and 'Negative social evaluation' (74.3%) were most common. 'General worries/ life stresses' (31.4%) and 'Negative self‐concept' (22.1%) were present in a significant minority; 'Health anxieties' (10%) and 'Sensory‐perceptual' (10%) were less common. Safer thoughts: 'Second‐wave (general) coping' (85%), 'Safer alternatives' (76.4%), 'Positive self‐concept' (65.7%) and 'Positive activities' (64.3%) were common with 'Third‐wave' (mindfulness) coping observed for 30%. Fidelity: Only three therapy withdrawals were therapy related. Session adherence was excellent (mean = 15.2/16; SD = 0.9). Behavioural work was conducted with 71% of people (119/168). Conclusion: SlowMo therapy delivers a targeted yet personalised approach. Potential mechanisms of action extend beyond reasoning. Implications for cognitive models of paranoia and causal interventionist approaches are discussed. [ABSTRACT FROM AUTHOR]

Background: Mobilization is a key component in the recovery of those admitted to critical care. However, previous research has demonstrated challenges in the implementation of mobilization within critical care, including staff knowledge, attitudes, and behaviours. Aim: The aim of the current study was to explore the perceived barriers and limitations to mobilization from the perspective of nursing staff, and to compare these with physiotherapists. Study Design: Single‐site service evaluation utilizing the patient mobilizations attitudes and beliefs survey for ICU and locally developed barriers to rehabilitation questionnaire. Results: About 135 participants (126 nurses and 9 physiotherapists) were invited to anonymously complete the questionnaires (either paper or electronic), with a response rate of 73.0% (n = 92) for nursing staff and 100% for physiotherapists. Nursing staff reported significantly higher perceived barriers to rehabilitation on both questionnaires when compared with physiotherapy staff, which was not associated with years of experience within critical care. Behavioural barriers were most frequent in both professions which included items such as time availability and presence of perceived contra‐indications to mobilization. Conclusion: Nursing staff reported greater perceived barriers to rehabilitation when compared with physiotherapists. Further quality improvement projects are now required to reduce these barriers and assist the implementation of mobilization as part of the rehabilitation process. Relevance to Clinical Practice: Rehabilitation is an essential element of practice within critical care. Understanding the system, local and personal barriers will allow for improvement projects to enhance the delivery of care and improve clinical outcomes. [ABSTRACT FROM AUTHOR]

Healthcare organisations are hierarchical; almost all are organised around the ranking of individuals by authority or status, whether this be based on profession, expertise, gender or ethnicity. Hierarchy is important for several reasons; it shapes the delivery of care, what is prioritised and who receives care. It also has an impact on healthcare workers and how they work and communicate together in organisations. The purpose of this scoping review is to explore the qualitative evidence related to hierarchy in healthcare organisations defined broadly, to address gaps in macro‐level healthcare organisational research, specifically focusing on the (1) impact of hierarchy for healthcare workers and (2) how hierarchy is negotiated, sustained and challenged in healthcare organisations. After a search and screening, 32 papers were included in this review. The findings of this review detail the wide‐reaching impacts that hierarchy has on healthcare delivery and health workers. The majority of studies spoke to hierarchy's impact on speaking up, that is, how it shaped communication between staff with differential status: not only what was said, but how it had an impact on what was acceptable to say, by whom and at what time. Hierarchy was also noted to have substantial personal costs, impacting on the well‐being of those in less powerful positions. These findings also provide insight into the complex ways in which hierarchy was negotiated, challenged and reproduced. Studies not only detailed the way in which hierarchy was navigated day to day but also spoke to the reasons as to why hierarchy is often entrenched and difficult to shift. A number of studies spoke to the impact that hierarchy had in sustaining gender and ethnic inequalities, maintaining historically discriminatory practices. Importantly, hierarchy should not be reduced to differences between or within the professions in localised contexts but should be considered at a broad organisational level. [ABSTRACT FROM AUTHOR]

Modern health‐care systems have customarily approached hepatitis C in ways that resemble the public health approach to HIV/AIDS known as 'HIV exceptionalism'. HIV exceptionalism describes the unusual emphasis on privacy, confidentiality and consent in approaches to HIV and was partly developed to address HIV/AIDS‐related stigma. In the case of hepatitis C, exceptionalist approaches have included diagnosis and treatment by specialist physicians and other 'boutique' public health strategies. The recent availability of highly effective, direct‐acting antivirals alongside goals to eliminate hepatitis C have heralded dramatic changes to hepatitis C health care, including calls for its 'normalisation'. The corollary to exceptionalism, normalisation aims to bring hepatitis C into routine, mainstream health care. This article draws on interviews with stakeholders (n = 30) who work with hepatitis C‐affected communities in policy, community, legal and advocacy settings in Australia, alongside Fraser et al.'s (2017, International Journal of Drug Policy, 44, 192–201) theorisation of stigma, and Rosenbrock et al.'s (1999, The AIDS policy cycle in Western Europe: from exceptionalism to normalisation. WZB Discussion Paper, No. P 99‐202) critique of normalisation to consider the perceived effects of hepatitis C normalisation. Stakeholders described normalisation as a stigma‐reducing process. However, they also expressed concerns about the ongoing stigma and discrimination that is not ameliorated by normalisation. We suggest that in centring normalisation, changes in health care may exaggerate the power of technological solutions to transform the meanings of hepatitis C. [ABSTRACT FROM AUTHOR]

The 2003 Health Economics paper by Dolan, Olsen, Menzel and Richardson on 'An inquiry into the different perspectives that can be used when eliciting preferences in health' presents a conceptual framework of six perspectives along two dimensions: preferences (personal, social, and socially inclusive personal) and context (ex ante and ex post). The objective of our paper is to re-think this framework. We ask four questions concerning: the patient, or the user of the treatment; the payer of the treatment; the assessor of the value of treatment; and the timing of the illness and the nature of its risk. These questions refine the preference and context dimensions, and lead to the identification of perspectives not classified by the original framework. We propose an extended framework with five preferences (personal, non-use, proxy, social, and socially inclusive personal) and five contexts (one of which is ex post and four ex ante): since two of these cells are empty, this results in 23 possible perspectives. Online Supplementary Information presents 11 of these more formally to clearly distinguish between them and uses monetary and non-monetary (time trade-off) valuation tasks as examples. Copyright © 2017 John Wiley & Sons, Ltd. [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]

Background: To facilitate change for person‐centred care, there is a need to invest in measures to assess if and how healthcare systems are delivering care based on the principles of person‐centred care. This paper describes the first phase in developing an item bank to measure patients' experiences of person‐centred care. Aim: The aim was to translate, culturally adapt and evaluate candidate items to measure person‐centred care from the patient's perspective. Methods: The Centre for person‐centred care at Gothenburg university and the UK Person‐centred and coordinated care model informed our conceptual framework. The initial pool of item candidates originated from a previous systematic review where 855 items were identified. In this study, a mixed method design was used involving persons with experience as patients, caregivers, healthcare professionals and researchers in person‐centred care or questionnaire design (n = 84). The item analysis included two validation rounds using web questionnaires, a focus group and cognitive interviews. Results: From the initial pool, 155 items covering core domains and subdomains of person‐centred and coordinated care were selected for translation and qualitative item analysis. After translation, 44 items were excluded (duplicates). After the first validation round, 21 items were rephrased and 35 were excluded (due to low ratings, lack of comprehensibility, were duplicates or too specifically phrased). To reflect the ethical basis of person‐centred care, rewordings were also made to encompass the patient as an active partner in care and where communication and information goes two‐ways and care is co‐created. After the second round, 11 items were rephrased and 25 items were excluded (for being redundant/repetitive). Six new items were added (covering access to care, patient capabilities, mental well‐being and identifying goals). Conclusion: We have developed a first set of 57 items to proceed towards developing an item bank to measure the patient experiences of person‐centred care. [ABSTRACT FROM AUTHOR]

Background & Objective: Epidermolysis bullosa (EB) is the term used for a group of genetic skin fragility disorders. For those living with EB, pain represents a constant challenge, with blistering and tasks such as changing dressings, adding to the distress. This paper focuses on describing and exploring the health‐care needs of children, adults and families who are affected by EB. The specific aim of the paper is to identify the needs of the EB population with a view towards informing the development of a community liaison service to support adults living with EB and the parents/carers of children living with EB. Setting and Participants: Interviews with six adults and the parents of eight children with EB were conducted. The data were analysed thematically. All participants were resident on the island of Ireland and are therefore reflecting on services in this geographic region. Results: Participants' needs were grouped into five themes: support managing physical health‐care issues; access to community/home‐based services; EB‐specific information and psychosocial support; effective interaction with health‐care professionals; and advice regarding benefits and entitlements. Discussion and Conclusions: This article represents the health‐care needs and preferences of a broad spectrum of those with EB, highlighting the need for a comprehensive service regardless of the severity of the condition. [ABSTRACT FROM AUTHOR]

The diagnosis of borderline personality disorder (BPD) has been found to carry stigma and poor hope of recovery. More recently, it has been regarded as a treatable condition through psychotherapy. Despite this, patients often experience lengthy hospitalizations, limited access to treatment, and poor outcomes. This paper describes the experiences of psychiatric nurses working with people diagnosed with BPD in acute mental health in‐patient settings in Ireland. Seven nurses were interviewed, and the transcripts were analysed using a reflective and inductive approach. Overall, the nurses did not feel confident that their interventions were effective or valued by the wider service or patients. The nurses articulated their invidious professional circumstances, whereby they were required to act in ways, which ran counter to their vision of therapeutic or recovery‐focused work. These views and perceptions that in‐patient care is often ineffectual are widely echoed in the literature. We contend that the effect of this circumstance for these nurses approaches moral distress. The nurses were aware of more effective methods of care and treatment for BPD but perceived that they were unable to influence the culture of in‐patient care. [ABSTRACT FROM AUTHOR]

Australia is undergoing major aged care reforms, changing from the previous service provider‐driven approach to consumer‐directed care principles. In residential aged care, this has resulted in a significant reduction in government funding in order to support reform initiatives in home and community‐based care. There has been limited research on the impact of structural aspects of the reforms such as the effect of changes in funding focus. Using a qualitative descriptive research methodology, this study explores the impact of the reforms on staff at various levels of operational responsibility in residential aged care. Issues identified by participants centered on the capacity to deliver care in three areas, the impact of funding reduction, challenges in meeting increasingly complex needs of residents and their families, and new requirements for care roles within current limitations. This paper provides an insight into how and why operational issues have informed the findings of the current Australian Royal Commission into Aged Care Quality and Safety. It identifies areas of support for the aged care workforce that are crucial in fulfilling consumer‐focused care delivery. [ABSTRACT FROM AUTHOR]

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Purpose: Prescriptive and predictive analytics and artificial intelligence (AI) provide tools to analyze data with objectivity. In this paper, we provide an overview of how these techniques can improve nursing care, and we detail a quantitative model to afford managerial insights about care management in a Hospital in Colombia. Our main purpose is to provide tools to improve key performance indicators for the care management of inpatients which includes the nurse workload. Methods: The optimal nurse‐to‐patient assignment problem is addressed using analytics, lean health care, and AI. Also, we propose a new mathematical model to optimize the nurse‐to‐patient assignment decisions considering several variables about the patient state such as the Barthel index, their risks, the complexity of the care, and the mental state. Findings: Our results show that there are several processes inherent to compassionate nursing care that can be improved using technology. By using data analytics, we can also provide insights about the high variability of the care requirements and, by using models, find nurse‐to‐patient assignments that are nearly perfectly balanced. Conclusions: We illustrated this improvement with a pilot test that makes the equitable distribution of nursing workload the functionality of this strategy. The findings can be useful in highly complex hospitals in Latin America. Clinical Relevance: The proposed model presents an opportunity to make near perfectly balanced nurse‐to‐patient assignments according to the number of patients and their health conditions using technology. [ABSTRACT FROM AUTHOR]

Background: As the prevalence of paediatric dysphagia increases, the need for long‐term non‐oral feeding has also increased. Despite these developments, little is known about caregiver experiences of transitioning a child onto long‐term non‐oral feeds, and the factors which influence the process of decision‐making and the provision of consent to do so. This paper aims to explore these factors. Methods: Semi‐structured interviews were conducted with nine participants recruited from the multidisciplinary out‐patient non‐oral feeding clinic at a hospital. Interviews explored caregiver experiences of decision‐making and the process of providing consent when transitioning their child to non‐oral feeds, as well as the support structures available to the caregivers. Interviews were audio recorded and transcribed, then analyzed using thematic analysis (Braun & Clarke, 2013) and content analysis (Neuendorf, 2016). Results: Challenges to care and quality of life, access to information and culturally relevant counselling, and the involvement of family members and significant others emerged as prominent themes. Findings suggest that quality of life was the most common motivating factor for transitioning a child to non‐oral feeding methods. Several participants suggested that support and information sharing via digital platforms were both useful and effective. Implications: The findings highlight caregivers' needs for improved access to information and social support. The findings hold implications for training of healthcare providers working in similar contexts and for models of service delivery which ensure that family‐centred intervention can be delivered in culturally and contextually relevant ways. With widespread access to smartphones, counselling should include digital messaging as a way of providing support and information sharing. Future research should focus on the complexities of counselling and the process of informed consent in settings impacted by diverse cultural, contextual and linguistic barriers, as well as the potential value of mobile health (mhealth) in ensuring improved health outcomes. [ABSTRACT FROM AUTHOR]

This paper investigates the consequences that patients face when their regular general practitioner (GP) closes down her practice, typically due to retirement. We estimate the causal impact of closures on patients' utilization patterns, healthcare expenditures, hospitalizations, mortality, and health plan choices. Employing a difference-in-difference framework, we find that patients who experience a discontinuity of care persistently adjust their ambulatory utilization pattern by shifting visits away from GPs (-12%) toward specialists (+11%) and hospital outpatient facilities (+6%). In contrast, we find no evidence on adverse health effects as measured by hospitalizations and mortality. The impact on utilization is heterogeneous along several dimensions. In particular, we find geographic disparities between regions with high and low availability of primary care. We also observe that patients with chronic conditions substitute more strongly toward other providers. Our results have potential implications for health policy in at least two dimensions: first, practice closures lead to more fragmented care which may entail inefficiencies, and second, closures deteriorate access to primary care in regions with low physician density. [ABSTRACT FROM AUTHOR]

Objectives: The study uses a qualitative empirical method to define Health Research for Development. This project explores the perspectives of stakeholders in an international health research partnership operating in Ghana and Tanzania.Methods: We conducted 52 key informant interviews with major stakeholders in an international multicenter partnership between GlaxoSmithKline (GSK, Vaccine Developer) and the global health nonprofit organisation PATH and its Malaria Vaccine Initiative program (PATH/MVI, Funder-Development Partner), (RTS, S) (NCT00866619). The respondents included teams from four clinical research centres (two centres in Ghana and two in Tanzania) and various collaborating partners. This paper analyses responses to the question: What is Health Research for Development?Results: Based on the stakeholders' experience the respondents offered many ways of defining Health Research for Development. The responses fell into four broad themes: i) Equitable Partnerships; ii) System Sustainability; iii) Addressing Local Health Targets, and iv) Regional Commitment to Benefit Sharing.Conclusion: Through defining Health Research for Development six key learning points were generated from the four result themes: 1) Ensure there is local research leadership working with the collaborative partnership, and local healthcare system, to align the project agenda and activities with local research and health priorities; 2) Know the country-specific context - map the social, health, legislative and political setting; 3) Define an explicit development component and plan of action in a research project; 4) Address the barriers and opportunities to sustain system capacity. 5) Support decentralised health system decision-making to facilitate the translation pathway; 6) Govern, monitor and evaluate the development components of health research partnerships. Overall, equity and unity between partners are required to deliver health research for development. [ABSTRACT FROM AUTHOR]

In this paper, we explore how the development of historical research methodologies during the last centuries can contribute to more diverse and interdisciplinary research in future caring science, especially towards a care focus that is more person‐centred. The adding of a historical approach by professional historians to the theory of person‐centredness and person‐centred care can develop knowledge that enables a more holistic understanding of the patient and the development of the patient perspective from the past until today. Thus, the aim was to show how developments within historical methodology can help us to understand elements of care in the past to further develop caring science in future. Historical research methodologies have advocated a "history from below" perspective, and this has enabled the evolution of systematic approaches to historical research that can be explored and critically analysed. Linked with this, the development of a more social and cultural oriented understanding of historical research has enabled historians to explore and add knowledge from a broader societal perspective. By focusing on the life of ordinary people and taking social and cultural aspects into account when trying to reconstruct the past, we can get a deeper understanding of health, care and medical development. However, an interdisciplinary research focus on person‐centredness and person‐centred care that includes professional historians can be challenging. In this paper, we argue that a historical perspective is necessary to meet the challenges we face in future delivery of health care to all people, in all parts of society in an ever more global world. [ABSTRACT FROM AUTHOR]

Children and young people living in residential care are vulnerable to sexual abuse, and there is scant evidence about what sexuality education could help address this vulnerability. This paper explores the impact of the Power to Kids: Respecting Sexual Safety programme, which involved capacity-building workers to have 'brave conversations' with children and young people in residential care. The aim of the study was to capture the perceptions of workers about changes in their skill and confidence levels in relation to having brave conversations with children and young people and the impact of those conversations on children and young people. A mixed-methods study was undertaken, involving multiple sets of interviews with 27 workers associated with four residential houses. The qualitative and quantitative data analysis showed that workers perceived the impact of the capacity building and brave conversations as strengthening protective factors available to children and young people vulnerable to sexual abuse. The research revealed the 'LINC model' as a viable approach to capacity-building workers to educate children and young people in residential care about sexual health and safety. Workers perceived the enhancement of the following protective factors: stronger safe relationships, greater comfort disclosing abuse and improved knowledge of normal versus harmful sexual behaviour. [ABSTRACT FROM AUTHOR]

Background: To guide the development of high‐quality care for people with multiple chronic conditions, partners of the European Joint Action CHRODIS developed the Integrated Multimorbidity Care Model. To assess its suitability for improving care for people with multimorbidity in the Netherlands, the model was piloted in a primary care setting with both patients and care providers. Aim: This paper reports on the patient perspective, and aims to explore the priorities, underlying values and preferences for care of people with multimorbidity. Participants and methods: Twenty persons with multimorbidity (selected from general practice registries) participated in a focus group or telephone interview. Subsequently, a questionnaire was completed by 863 persons with multimorbidity registered with 14 general practices. Qualitative data were thematically analysed and quantitative data by means of descriptive statistics. Results: Frequently prioritized elements of care were the use of shared electronic health records, regular comprehensive assessments, self‐management support and shared decision making, and care coordination. Preferences for how these elements should be specifically addressed differed according to individual values (eg weighing safety against privacy) and needs (eg ways of coping with multimorbidity). Conclusion: The JA‐CHRODIS Integrated Multimorbidity Care Model reflects the priorities and preferences for care of people with multimorbidity in the Netherlands, which supports its relevance to guide the development of person‐centred integrated care for people with multiple chronic conditions in the Netherlands. Patient contribution: European patient experts contributed to the development and applicability assessment of the JA‐CHRODIS Integrated Multimorbidity Care Model; Dutch patients participated in focus groups, interviews and a survey. [ABSTRACT FROM AUTHOR]

Aim: To determine if walking ability and presence of intellectual disability and epilepsy change from childhood to 50 years of age in individuals with cerebral palsy (CP), and if such changes are related to age, sex, or CP subtype.Method: This was a population-based follow-up study of 142 adults born from 1959 to 1978 (82 males, 60 females; mean age 48y 4mo, range 37-58y; 44% unilateral, 35% bilateral, 17% dyskinetic, and 4% ataxic CP) listed in the CP register of western Sweden. We compared childhood data with a follow-up assessment in 2016.Results: At follow-up, walking ability had changed significantly (p<0.001). The proportion of participants walking without aids had decreased from 71% to 62%, and wheelchair ambulation increased from 18% to 25%. Walking ability was related to subtype (p=0.001), but not to age, sex, pain, fatigue, or body mass index. The proportion classified as having intellectual disability had increased from 16% to 22% (p=0.039) and the proportion with epilepsy from 9% to 18% (p=0.015). Of those with childhood epilepsy, 46% were seizure-free without medication.Interpretation: Walking ability and the presence of intellectual disability and epilepsy had changed significantly since childhood. Life-long access to specialized health care is warranted for re-evaluation of impairments, treatment, and assistance. What this paper adds Changes in impairments in individuals with cerebral palsy (CP) over time are related to CP subtype. After 50 years, walking ability in CP may have deteriorated or improved. Intellectual disability in CP may not always be detected in early childhood assessments. Epilepsy in CP may develop after childhood or may be outgrown. [ABSTRACT FROM AUTHOR]

Background: Patient and Public involvement (PPI) has rapidly evolved into a key component in shaping the delivery of health services. However, little is known about what it is like to participate in involvement procedures that include representatives of multiple groups and in the context of developing new interventions for Child and Adolescent Mental Health Services (CAMHS). Objective: This study explored participants' experiences of PPI, following attending a 'consensus conference', during which their views were sought in relation to the development of a proposed staff‐based intervention and key questions about its design and implementation. Design: Qualitative, semi‐structured interview study. Setting and Participants: Six participants, including service users and various frontline clinical staff team members, who had experience of CAMHS were present at the consensus conference and then asked about their experiences of being involved via semi‐structured interviews. The data were analysed using Interpretative Phenomenological Analysis (IPA). Young people, carers and frontline staff have been involved in the design and implementation throughout the broader programme of work of which this study forms part, although these groups were not directly involved in the design and implementation of this paper. Results: Three key narratives were present: (a) Previous Experiences Driving Expectations, (b) 'We are all in the same boat' and (c) The Realization of Multiple Identities. The results suggest that PPI involvement is a complex process that may be driven by positive/negative expectations, but that individuals value learning about others and recognizing different perspectives while reaching shared goals in improving services. Discussion and Conclusion: This study demonstrates the complexity of experience that service users and clinical staff face when engaging in involvement activities in CAMHS. The findings demonstrate the value in engaging multiple stakeholder groups while also highlighting the importance of proper consideration of the procedures involved and facilitators of engagement. [ABSTRACT FROM AUTHOR]

Context Few qualitative findings have been published that explore and identify the challenges experienced by independent abortion providers during the COVID‐19 pandemic in the United States (US). In this paper, we explore these themes while expanding the concept of "abortion exceptionalism" beyond its original legal meaning to address the impact of abortion stigma. Methods: Twenty abortion providers from independent abortion clinics throughout the US South and Midwest participated in semi‐structured interviews in June and July 2020. Interviews explored the challenges of providing abortion care in the wake of the COVID‐19 pandemic and sought to identify how clinics strategized and amended their clinical practices to continue providing abortion care during this time. Results: All providers we spoke to noted significant challenges to providing abortion care in the early days of COVID‐19. In addition to experiencing the same concerns as other health care institutions, abortion clinics also faced additional, unique burdens that can only be attributed to the politics of abortion exceptionalism. Examples of this abortion exceptionalism include abrupt orders to close clinics, the need to rely on traveling physicians, legislature‐imposed limits on telemedicine, heightened activities of protesters, and non‐evidence‐based regulation of medication abortion. Conclusion: Despite major challenges and differential treatment, independent abortion clinics in the US persevered to continue to provide abortion care throughout the COVID‐19 pandemic. [ABSTRACT FROM AUTHOR]

In the medical practice in China, giving and taking "red envelopes" (monetary gifts) is a common phenomenon although few openly admit it. This paper, based on our empirical study including data collected from interviews and questionnaires with medical professionals and patients, attempts to explore why "red envelopes" have become a serious problem in the physician-patient relationship and how the situation can be improved. Previous studies show that scholars tend to correlate the spread of "red envelopes" in health care sector to the commercialization trend, the general erosion of traditional values, and the lowering of the moral level in the medical field. However, in this paper, the authors argue that medical professionals' choice of taking "red envelopes" is actually more a way to compensate for their problematic self-image and marred dignity in real practice. Medical professionals in China as a whole are in an embarrassing situation where the work pressure and income, and the sense of pride that used to be part of their profession are not comparable to each other. Under this circumstance, we believe that the effective way to deal with the "red envelopes" issue does not lie solely in introducing more stringent regulations or granting medical professionals higher payments, but rather in protecting and enhancing the professional dignity of all those working in healthcare. And on top of that, there must also be effort to cultivate a more favorable moral environment. [ABSTRACT FROM AUTHOR]

Objectives To prioritize research topics relevant to the care of the growing population of older adults with multiple chronic conditions ( MCCs). Design Survey of experts in MCC practice, research, and policy. Topics were derived from white papers, funding announcements, or funded research projects relating to older adults with MCCs. Setting Survey conducted through the Health Care Systems Research Network ( HCSRN) and Claude D. Pepper Older Americans Independence Centers ( OAICs) Advancing Geriatrics Infrastructure and Network Growth Initiative, a joint endeavor of the HCSRN and OAICs. Participants Individuals affiliated with the HCSRN or OAICs and national MCC experts, including individuals affiliated with funding agencies having MCC-related grant portfolios. Measurements A 'top box' methodology was used, counting the number of respondents selecting the top response on a 5-point Likert scale and dividing by the total number of responses to calculate a top box percentage for each of 37 topics. Results The highest-ranked research topics relevant to the health and healthcare of older adults with MCCs were health-related quality of life in older adults with MCCs; development of assessment tools (to assess, e.g., symptom burden, quality of life, function); interactions between medications, disease processes, and health outcomes; disability; implementation of novel (and scalable) models of care; association between clusters of chronic conditions and clinical, financial, and social outcomes; role of caregivers; symptom burden; shared decision-making to enhance care planning; and tools to improve clinical decision-making. Conclusion Study findings serve to inform the development of a comprehensive research agenda to address the challenges relating to the care of this 'high-need, high-cost' population and the healthcare delivery systems responsible for serving it. [ABSTRACT FROM AUTHOR]

This paper uses meta-regression analysis to test how aspects of discrete choice experiment (DCE) study design influence survey response rates. DCEs are a survey-based method used to elicit preferences for health and health care and are prone to survey errors of coverage, sampling, non-response and measurement. However, research on DCE response rates is lacking. Our analysis is motivated by a social exchange theory of survey response. We find that DCE response rates are related to the survey's cognitive burden and the relevance to the surveyed population. Copyright © 2016 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Background: Trans‐identifying individuals experience unique barriers and challenges in negotiating health‐care systems due to the cisnormative attitudes and practices which obstruct the receipt of trans‐inclusive care. To date, there has been little exploration of older trans consumers' experiences of contemporary health‐care services when seeking to transition medically in later life. Objectives: Qualitative findings are presented from a study of trans ageing and trans‐related health and social care needs in Wales, UK (2016‐18). The objectives are to (1) examine supportive and obstructive points of interaction with health‐care professionals, and (2) identify key learning messages for improving trans‐related health care from the perspectives of trans‐identifying adults in later life. Design: Trans‐identifying participants self‐selected to take part in two interviews—a life‐history interview and a semi‐structured interview. Interview data were analysed thematically using the framework method approach. Setting and participants: This paper focuses on the accounts of 19 participants (50‐74 years of age) who identified as trans and were seeking to transition medically in mid‐ to later life. Results: Findings indicate how older trans patients are positioned as reluctant educators for GPs in primary care settings and illustrate the transphobic practices and cisnormative assumptions encountered across health‐care interactions and systems that impede their journey of transitioning in later life. Discussion and conclusions: Messages from this study speak to the importance of improving professionals' knowledge of gender identity diversity across the life course and making changes at a systemic level in redressing cisnormative assumptions and systems that reinforce inequities on the basis of gender identity. [ABSTRACT FROM AUTHOR]

Background: Opioids are one of the most prescribed treatments for chronic pain (CP). However, their long‐term use (>3 months) has been surrounded by controversy, due to loss of beneficial effects. Objective: To explore the experiences of people with chronic non‐malignant low back pain in Spain undergoing long‐term treatment with opioids. Design: Qualitative study. Setting and participants: We conducted 15 semi‐structured interviews at the Pain Clinic with persons taking opioid treatment. Methods: The interviews were analysed by qualitative content analysis as described by Graneheim and Lundman, and developed categories and themes discussed in light of a biomedicalization framework. Main results: We developed one overarching theme—Living with opioids: dependence and autonomy while seeking relief—and three categories: The long pathway to opioids due to the invisibility of pain; Opioids: from blind date to a long‐term relationship; and What opioids cannot fix. Discussion: The long and difficult road to find effective treatments was a fundamental part of coping with pain, involving long‐term relationships with the health system. This study reflects the benefits, and drawbacks of opioids, along with struggles to maintain autonomy and make decisions while undergoing long‐term treatment with opioids. The paper also highlights the consequences of pain in the economy, family and social life of patients. Conclusions: Patients' experiences should be considered to a greater extent by health‐care professionals when giving information about opioids and setting treatment goals. Greater consideration of the social determinants of health that affect CP experiences might lead to more effective solutions to CP. [ABSTRACT FROM AUTHOR]