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Background: Primary care practices are responding to calls to incorporate patients' social risk factors, such as housing, food, and economic insecurity, into clinical care. Healthcare likely relies on the expertise and resources of community-based organizations to improve patients' social conditions, yet little is known about the referral process.Objective: To characterize referrals to community-based organizations by primary care practices.Design: Qualitative study using semi-structured interviews with healthcare administrators responsible for social care efforts in their organization.Participants: Administrators at 50 diverse US healthcare organizations with efforts to address patients' social risks.Main Measures: Approaches used in primary care to implement social needs referral to community-based organizations.Results: Interviewed administrators reported that social needs referrals were an essential element in their social care activities. Administrators described the ideal referral programs as placing limited burden on care teams, providing patients with customized referrals, and facilitating closed-loop referrals. We identified three key challenges organizations experience when trying to implement the ideal referrals program: (1) developing and maintaining resources lists; (2) aligning referrals with patient needs; and (3) measuring the efficacy of referrals. Collectively, these challenges led to organizations relying on staff to manually develop and update resource lists and, in most cases, provide patients with generic referrals. Administrators not only hoped that referral platforms may help overcome some of these barriers, but also reported implementation challenges with platforms including inconsistent buy-in and use across staff; integration with electronic health records; management and prioritization of resources; and alignment with other organizations in their market.Conclusion and Relevance: Referrals to community-based organizations were used in primary care to improve patients' social conditions, but despite strong motivations, interviewees reported challenges providing tailored and up-to-date information to patients. [ABSTRACT FROM AUTHOR]

Aim: To explore the health beliefs of clinical and academic nurses from Japan, Australia and China regarding wearing paper masks to protect themselves and others, and to identify differences in participants' health beliefs regarding masks. Background: The correct use of face masks and consensus among health professionals across the globe is essential for containing pandemics, and nurses need to act according to policy to protect themselves, educate the public and preserve resources for frontline health workers. Paper masks are worn by health professionals and the general public to avoid the transmission of respiratory infections, such as COVID‐19, but there appear to be differences in health beliefs of nurses within and between countries regarding these. Methods: This qualitative descriptive study used content analysis with a framework approach. Findings: There were major differences in nurse participants' beliefs between and within countries, including how nurses use paper masks and their understanding of their efficacy. In addition, there were cultural differences in the way that nurses use masks in their daily lives and nursing practice contexts. Conclusion: Nurses from different working environments, countries and areas of practice hold a variety of health beliefs about mask wearing at the personal and professional level. Implications for nursing policy and health policy: The COVID‐19 pandemic has sparked much discussion about the critical importance of masks for the safety of health professionals, and there has been considerable discussion and disagreement about health policies regarding mask use by the general public. Improper use of masks may have a role in creating mask shortages or transmitting infections. An evidence‐based global policy on mask use for respiratory illnesses for health professionals, including nurses, and the general public needs to be adopted and supported by a wide‐reaching education campaign. [ABSTRACT FROM AUTHOR]

Background: Low- and middle-income countries (LMICs), including South Africa, are currently experiencing multiple epidemics: HIV and the rising burden of non-communicable diseases (NCDs), leading to different patterns of multimorbidity (the occurrence of two or more chronic conditions) than experienced in high income settings. These adversely affect health outcomes, increase patients' perceived burden of treatment, and impact the workload of self-management. This paper outlines the methods used in a qualitative study exploring burden of treatment among people living with HIV/NCD multimorbidity in South Africa. Methods: We undertook a comparative qualitative study to examine the interaction between individuals' treatment burden (self-management workload) and their capacity to take on this workload, using the dual lenses of Burden of Treatment Theory (BoTT) and Cumulative Complexity Model (CuCoM) to aid conceptualisation of the data. We interviewed 30 people with multimorbidity and 16 carers in rural Eastern Cape and urban Cape Town between February-April 2021. Data was analysed through framework analysis. Findings: This paper discusses the methodological procedures considered when conducting qualitative research among people with multimorbidity in low-income settings in South Africa. We highlight the decisions made when developing the research design, recruiting participants, and selecting field-sites. We also explore data analysis processes and reflect on the positionality of the research project and researchers. Conclusion: This paper illustrates the decision-making processes conducting this qualitative research and may be helpful in informing future research aiming to qualitatively investigate treatment burden among patients in LMICs. [ABSTRACT FROM AUTHOR]

PURPOSE Consent processes are critical for clinical care and research and may benefit from incorporating digital strategies. We compared an electronic informed consent (eIC) option to paper consent across four outcomes: (1) technology burden, (2) protocol comprehension, (3) participant agency (ability to self-advocate), and (4) completion of required document fields. METHODS We assessed participant experience with eIC processes compared with traditional paper-based consenting using surveys and compared completeness of required fields, over 3 years (2019-2021). Participants who consented to a clinical trial at a large academic cancer center via paper or eIC were invited to either pre-COVID-19 pandemic survey 1 (technology burden) or intrapandemic survey 2 (comprehension and agency). Consent document completeness was assessed via electronic health records. RESULTS On survey 1, 83% of participants (n = 777) indicated eIC was easy or very easy to use; discomfort with technology overall was not correlated with discomfort using eIC. For survey 2, eIC (n = 262) and paper consenters (n = 193) had similar comprehension scores. All participants responded favorably to at least five of six agency statements; however, eIC generated a higher proportion of positive free-text comments (P < .05), with themes such as thoroughness of the discussion and consenter professionalism. eIC use yielded no completeness errors across 235 consents versus 6.4% for paper (P < .001). CONCLUSION Our findings suggest that eIC when compared with paper (1) did not increase technology burden, (2) supported comparable comprehension, (3) upheld key elements of participant agency, and (4) increased completion of mandatory consent fields. The results support a broader call for organizations to offer eIC for clinical research discussions to enhance the overall participant experience and increase the completeness of the consent process. [ABSTRACT FROM AUTHOR]

Purpose: To discuss the representation and organization of information describing persons' lived experience of health from a personal factors perspective in the light of the International Classification of Functioning, Disability and Health, using spinal cord injury as a case in point for disability. Methods: The scientific literature was reviewed, discussion rounds conducted, and qualitative secondary analyses of data carried out using an iterative inductive–deductive approach. Results: Conceptual considerations are explicated that distinguish the personal factors perspective from other components of the International Classification of Functioning, Disability and Health. A representation structure is developed that organizes health-related concepts describing the internal context of functioning. Concepts are organized as individual facts, subjective experiences, and recurrent patterns of experience and behavior specifying 7 areas and 211 concept groups. Conclusions: The article calls for further scientific debate on the perspective of personal factors in the light of the International Classification of Functioning, Disability and Health. A structure that organizes concepts in relation to a personal factors perspective can enhance the comprehensiveness, transparency and standardization of health information, and contribute to the empowerment of persons with disabilities. The present study collected data from scientific literature reviews, discussion rounds and qualitative secondary analyses in order to develop a representation and organization of information describing persons' lived experience of health from a personal factors perspective in the light of the International Classification of Functioning, Disability and Health. The following representation structure for health-related information from a personal factors perspective was developed: (i) Individuals facts (i.e., socio-demographical factors, position in the immediate social and physical context, personal history and biography), (ii) subjective experience (i.e., feelings, thoughts and beliefs, motives), and (iii) recurrent patterns of experience (i.e., feelings, thoughts and beliefs) and behavior. With this study, we aim to stimulate further scientific discussion about the personal factors component in the International Classification of Functioning, Disability and Health, including its application and subsequent validation for potential implementation into clinical practice. [ABSTRACT FROM AUTHOR]

Higher education professional recognition programs, which lead to the awarding of such accolades as teaching and learning fellowships, offer participants opportunities to reflect carefully on their practice. However, few resources exist to help participants engage in reflection after the award-receiving stage. This reflection is important in helping participants not rest on their laurels and, instead, build on the practices for which they received recognition. Through a process of collaborative reflection, a group of fellowship-recipients, from different disciplines and higher education institutions, addressed this gap as stakeholder-participant-researchers by developing a transdisciplinary approach to undertaking post-award reflective practice. From this collaboration, a novel two-stage tool was developed using an iterative design methodology. The tool presented in this paper as the result of this research can be understood as a means of supporting self-paced, continued post-award reflective practice; the tool's first stage guides users through retrospective reflection, looking back on previous achievements, while the second stage leads users through anticipatory planning, looking towards the future, to achieve fresh goals. The tool thus deepens the reflective practice of recognition program awardees and supports their ongoing professional development. This paper reports on the development of this bespoke tool, which may be enacted in varied settings. [ABSTRACT FROM AUTHOR]

This paper presents a narrative literature review on the evidence relating to the youth worker role with young people in the hospital setting, within which the research gaps and inconsistencies within the body of knowledge available are highlighted. Medline, CINAHL, PsycINFO, AMED and British Nursing Index databases were searched and screened for papers which involved the youth worker role with young people in a hospital setting. Data relating to the youth workers who worked with young people in the hospital setting were extracted by two independent reviewers. A total of 11 papers were identified dating from 1971 to 2018, from a range of countries. In order to present the available body of knowledge, this narrative synthesis of the literature is presented under three headings: descriptive work, service evaluation and empirical research. The findings suggest that the youth worker role in the hospital setting has a positive impact upon the lives of young people and this was accomplished through the interventions the youth worker employed when working with young people. Equally, challenges were highlighted relating to the youth worker undertaking their role in the hospital setting. However, changes during this time period in attitudes towards adolescent health particularly within the United Kingdom, along with the loss of funding for youth work has had an impact on the research in this area of clinical practice. The number of descriptive papers in this review, highlights the necessity for empirical evidence in both quantitative and qualitative research in order to gain a greater understanding of what the youth worker role in the hospital provides to young people and the impact of their interventions from the perspectives of young people, parents, youth workers and members of the multi-disciplinary team. [ABSTRACT FROM AUTHOR]

Acute care nurses continue to rely on personally created paper-based tools—their “paper brains”—to support work during a shift, although standardized handoff tools are recommended. This interpretive descriptive study examines the functions these paper brains serve beyond handoff in the medical oncology unit at a cancer specialty hospital. Thirteen medical oncology nurses were each shadowed for a single shift and interviewed afterward using a semistructured technique. Field notes, transcribed interviews, images of nurses’ paper brains, and analytic memos were inductively coded, and analysis revealed paper brains are symbols of patient and nurse identity. Caution is necessary when attempting to standardize nurses’ paper brains as nurses may be resistant to such changes due to their pride in constructing personal artifacts to support themselves and their patients. [ABSTRACT FROM AUTHOR]

Rationale, aims and objectives Despite extensive evidence on the value of patient decision support interventions ( DESIs), there is no consensus on optimal DESI formats. Assessing clinicians' perceptions about DESI formats can help facilitate their adoption. The aim of this study was to assess clinicians' perceptions of DESIs formats and potential use in practice. Methods Semi-structured qualitative interviews were conducted with doctors from diverse practice areas (internal medicine, OB/ GYN, surgery, medical oncology, emergency medicine) and elicited perceptions toward patient DESIs formats (digital vs. paper) and timing of administration. Questions also elicited beliefs underlying attitudes, perceived social norms and self-efficacy for using DESIs and the feasibility of doing so. Data analysis was conducted using a thematic analysis approach. Results Participants identified strengths of both more comprehensive digital and shorter paper-based tools and thought they could complement each other. Participants consistently expressed the advantages of using DESIs outside the consultation to supplement clinical discussions about cancer decisions given the amount of information to discuss during these emotion-laden conversations. Participants felt that patients with older age and lower socio-economic status were more likely to use a paper-based compared with a digital DESI. Participants also noted challenges related to reliable resources such as computers and Internet in the practice setting, which would be necessary for implementing the digital DESIs on site. Conclusions Clinicians' perceptions and opinions about value of DESIs can vary widely across doctor, patient and clinic characteristics. A one-size-fits-all approach to implementation might not be feasible, suggesting that flexible approaches to providing decision support for patients are needed to drive broader adoption. [ABSTRACT FROM AUTHOR]

Higher education institutions are uniquely placed to introduce emotional coping skills to promote resilience in pre-registration nurses in order to reduce anxiety and increase confidence before they enter clinical placement for the first time. In this qualitative study, we will explore the use of a 360-degree video in developing skills for coping. The participants will be mental health nursing students. We will develop a 360-degree video in collaboration with a mental health service user. All participants will watch the video. A sub-group will receive a supportive clinical supervision discussion within a cognitive reappraisal/solution-focused/VERA framework. We will record the experiences of the participant to explore: (1) how students felt about the use of 360-degree video, as an education tool to build skills of resilience; (2) whether the students involved felt more confident and less anxious about the situation in the video as a result of participating in the cognitive reappraisal/solution-focused/VERA supervision discussion. [ABSTRACT FROM AUTHOR]

What role do texts play in LGBTQ (lesbian, gay, bisexual, transgender, and queer) parents’ experiences of disability service systems? In interviews with 15 LGBTQ parents of disabled children in Toronto, Canada, participants selected documents to be used as a focus for discussion. Parents considered how LGBTQ identity and other intersectional identities influenced their experiences of institutional texts including adoption certificates, intake forms, and assessments. Findings suggest that documentation practices can operate as forms of systemic gatekeeping. LGBTQ identity was sometimes very significant in parents’ accounts, and sometimes less central than other aspects of their families' identities and experiences. [ABSTRACT FROM PUBLISHER]

ABSTRACT BACKGROUND The Healthy, Hunger-Free Kids Act of 2010 ( HHKA) required schools to make changes to meals provided to children. Rural school districts have limited resources, with increased obesity rates and local food insecurity. In this study we sought to understand the perceptions of rural food service directors and the barriers to implementing the changes. METHODS Food service directors from rural school districts were invited to complete a semistructured telephone interview and online survey. A total of 51 respondents completed both, 6 completed only the online survey, and 16 completed only the telephone interview. Qualitative interview data were analyzed through open thematic coding; descriptive statistics were calculated for the quantitative data. RESULTS Food service directors mostly perceived the changes as negative, challenging, and burdensome. They believed that the changes resulted from concern about childhood obesity, which they did not view as a problem for their students. Diverse challenges were reported related to cost, preparation, and student preference. CONCLUSIONS Food service directors in isolated, rural areas need support to enhance understanding of HHKA requirements, build professional networks to learn from one another, and communicate with students, families, and other stakeholders. Future efforts should focus on changing perceptions and supporting directors in order to make implementation a success. [ABSTRACT FROM AUTHOR]

In the United Kingdom, people with non-white ethnicities are more likely to report being in worse health conditions and have poorer experiences of healthcare services than white counterparts. The voices of those of Black ethnicities are often merged in literature among other non-white ethnicities. This literature review aims to analyse studies that investigate Black participant experiences of primary care in the UK. We conducted a systematic literature review searching Medline, Web of Science, EMBASE, SCOPUS, Social Policy and Practice, CINAHL plus, Psych INFO and Global Health with specific search terms for appropriate studies. No publish date limit was applied. 40 papers (39 articles and 1 thesis) were deemed eligible for inclusion in the review. A number of major themes emerged. Patient expectations of healthcare and the health seeking behaviour impacted their interactions with health systems in the UK. Both language and finances emerged as barriers through which some Black participants interacted with primary care services. (Mis)trust of clinicians and the health system was a common theme that often negatively impacted views of UK primary care services. The social context of the primary care service and instances of a cultural disconnect also impacted views of primary care services. Some papers detail patients recognising differential treatment based on ethnicity. The review included the voices of primary care professionals where descriptions of Black patients were overwhelmingly negative. Views and experiences of Black groups may be radically different to other ethnic minorities and thus, should be teased out of broader umbrella terms like Black and Asian Minority Ethnic (BAME) and Black Minority Ethnic (BME). To address ethnicity-based health inequalities, culturally sensitive interventions that engage with the impacted community including co-designed interventions should be considered while acknowledging the implications of being racialised as Black in the UK. [ABSTRACT FROM AUTHOR]

The article focuses on a study in Scotland, United Kingdom of prioritizing protection of children from secondhand smoke exposure (SHSE) in a private space where smoke-free public places are enforced. It discusses the difficulty of political acceptability in enforcing the issue and the intervention over parental autonomy to smoke in their own home. The article also reports on the findings based on the study used called Reducing Families' Exposure to Secondhand Smoke (REFRESH) project.

Copyright of European Journal of Social Work is the property of Routledge and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Copyright of European Journal of Social Work is the property of Routledge and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Background: Menstruators facing period poverty often struggle with menstrual hygiene and waste management, which can result in harmful short- and long-term health outcomes such as urinary tract infections, yeast infections, and vulvar contact dermatitis. Research indicates that 42% of menstruators in the United States have difficulty affording period products. Traditional methods of distributing period products through social services may unintentionally undermine menstruators' agency, leading to disempowerment and inefficient resource allocation. Period product pantries are a novel approach aimed at addressing period poverty, inequity, and inadequate menstrual health education in the United States. Objectives: This paper aims to examine the development, organization, and implementation of two distinct period product pantry networks in Ohio and New York. It seeks to compare the advantages and challenges of grassroots versus nonprofit-led models and to provide practical insights for future pantry operators. Design: The study examines two models of period product pantries: a grassroots effort led by three local residents in Ohio and an initiative spearheaded by a nonprofit organization in New York. The design includes a comparative analysis of both models' organization, funding methods, and operational structures. Methods: The authors gathered data on the construction, operation, and usage of two pantry networks, focusing on factors such as accessibility, community engagement, and sustainability. The study employed a combination of qualitative methods, including interviews with organizers, and a review of organizational documents to analyze the effectiveness and scalability of each model. Results: Both pantry networks increased accessibility to period products in low socioeconomic neighborhoods, which are disproportionately affected by period poverty. The grassroots model, while resource-limited, fostered strong community ties and local engagement. The nonprofit-led model benefited from dedicated staff and a more stable funding structure but faced bureaucratic challenges. Despite their differences, both models demonstrated the potential to empower menstruators by preserving their dignity and autonomy. Conclusions: Period product pantries represent an innovative and equitable approach to addressing period poverty and inequity. The analysis of the two models offers valuable insights for organizations and individuals interested in establishing similar initiatives. While each model has its unique benefits and challenges, both are effective in empowering menstruators and providing accessible menstrual hygiene products to those in need. Registration: Not applicable. Plain language summary: Fighting for menstrual equity through period product pantries Period product pantries are a new way to help people who can't afford period products and don't have enough education about menstrual health in the U.S. Many people who experience period poverty, or trouble getting products like pads and tampons, also face barriers to staying clean and managing period waste. This can cause health issues like infections. About 42% of people who get periods in the U.S. say they've had trouble paying for these products. Period product pantries are different from older methods of getting free products, like through social services, because they let people get what they need without feeling embarrassed or losing their sense of control. This paper looks at two types of period pantries: one started by three local people in Ohio and another run by a nonprofit group in New York. Both help people in neighborhoods where it's hard to afford period products. The paper talks about how these pantries were set up, how they are funded, and what worked well or didn't. The goal is to show how these pantries can be a good, fair way to help people while giving advice to others who might want to start their own pantries. [ABSTRACT FROM AUTHOR]

Conducting research studies with vulnerable populations on sensitive topics such as adolescent pregnancy can be challenging depending on methodological approaches and ethical issues that may arise before, during, and after data collection. This methodological paper was developed based on experiences and lessons learned from a critical ethnographic study conducted to determine and understand the cultural and personal meaning of unintended adolescent pregnancy in the Rwandan context and to explore the perceived consequences and management of unintended adolescent pregnancy with and for single adolescent mothers. The purpose of this methodological paper is to discuss methodological and ethical challenges encountered while conducting this research, as well as various approaches used to overcome these challenges, and to provide guidance to researchers interested in conducting research about similar or other sensitive topics. Future researchers facing similar challenges should prioritize community engagement strategies, such as building strong relationships with gatekeepers and leaders, to facilitate access to potential participants. Additionally, researchers should engage in continuous ethical reflection and adaptation throughout the study, adjusting strategies if necessary to ensure the well-being and autonomy of participants. As a result of the practical and methodological strategies provided in this reflective paper, researchers could be able to navigate practical, methodological, and ethical challenges effectively while conducting sensitive studies on topics such as adolescent pregnancy. [ABSTRACT FROM AUTHOR]

Background Temporal structuring Is determined by practices and social norms and affects the quality and timing of care. In this case study of hyperacute stroke wards which provide initial stroke investigation, treatment and care, we explored temporal structuring patterns to explain how these may affect quality of care. Methods This paper presents a thematic analysis of qualitative interviews with hyperacute stroke staff (n=76), non-participant observations (n=41, ~102 hours) and documentary analysis of the relevant service standards guidance. We used an inductive coding process to generate thematic findings around the concept of temporal structuring, with graphically illustrated examples. Results Five temporal structures influence what- happens-when: (1) clinical priorities and quality assurance metrics motivate rapid activity for the initial life-prolonging assessments and interventions; (2) static features of ward organisation such as rotas and ward rounds impact consistency of care, determining timing and quality of care for patients; (3) some services experimented with staff rotas to try to meet peaks in demand, sometimes unsuccessfully; (4) implicit social norms or heuristics about perceived necessity affected staff motivation to make changes or improvements to consistency of care, particularly around weekend work; and (5) after-effects such as bottlenecks or backlogs affect quality of care, which are hard to measure effectively to drive service improvement. Conclusions Patients need temporally consistent high quality of care. Temporal consistency stems from the design of services, including staffing, targets and patient pathway design as well as cultural attitudes to working patterns. Improvements to consistency of care will be limited without changes to structures such as rotas and ward rounds, but also social norms around weekend work for certain professional groups. [ABSTRACT FROM AUTHOR]

Aims: To explore how parents experienced their child with delirium and how parents viewed our delirium management bundle. Design: We conducted a qualitative exploratory descriptive study using semi‐structured individual or dyad interviews. Methods: Twelve semi‐structured interviews with 16 parents of 12 critically ill children diagnosed with delirium in a paediatric intensive care unit were conducted from October 2022 to January 2023 and analysed through a reflexive thematic analysis. Findings: We generated five themes: (1) knowing that something is very wrong, (2) observing manifest changes in the child, (3) experiencing fear of long‐term consequences, (4) adding insight to the bundle, and (5) family engagement. Conclusion: The parents in our study were able to observe subtle and manifest changes in their child with delirium. This caused fear of lasting impact. The parents regarded most of the interventions in the delirium management bundle as relevant but needed individualization in the application. The parents requested more information regarding delirium and a higher level of parent engagement in the care of their child during delirium. Impact: This paper contributes to understanding how parents might experience delirium in their critically ill child, how our delirium management bundle was received by the parents, and their suggestions for improvement. Our study deals with critically ill children with delirium, their parents, and staff working to prevent and manage paediatric delirium (PD) in the paediatric intensive care unit. Reporting Method: The consolidated criteria for reporting qualitative research guidelines were used to ensure the transparency of our reporting. Patient or Public Contribution: No patient or public contribution to the research design. What does this Paper Contribute to the Wider Global Community?: ‐ It increases awareness of the parent's perspective on PD in critically ill children.‐ It shows how PD might affect parents, causing negative emotions such as distress, frustration, and fear of permanent damage.‐ It shows that the parents in our study, in addition to the care bundle, requested more information on delirium and more involvement in the care of their delirious child. [ABSTRACT FROM AUTHOR]

Aim: To explore the prospective acceptability of an implementation leadership training programme prototype for nurse managers in China to implement evidence‐based practices, from the perspectives of potential programme participants and deliverers. Design: A qualitative descriptive study was conducted in Spring 2022 at three tertiary hospitals in Hunan, China. Methods: We conducted individual semi‐structured interviews with unit‐level nurse managers (n = 14), including 12 potential participants, and two potential deliverers that have been involved in developing the programme prototype. Interview questions and thematic analysis were guided by the Theoretical Framework of Acceptability. Results: After reviewing the programme content, potential participants and deliverers reported that unit nurse managers would benefit from engaging in the programme, acknowledging that the programme fit with professional nursing values for implementing research evidence. They expressed positive views about being involved in producing academic papers through the training process, and interactive multi‐modal training activities such as group work, experience‐sharing and coaching. Seven participants were not very confident about being fully engaged in the training, as they could not navigate the English research literature. Both participants and deliverers highlighted factors that would influence their participation, including time constraints, the impact of the COVID‐19 pandemic, and support from senior organizational leadership. Conclusions: The training programme prototype was perceived to be useful and acceptable. The multimodal training activities were considered a strength and managers expressed an interest in writing academic papers about their implementation processes. Support from senior hospital leaders and programme deliverers was identified as critical to the training programme's success. Impact: The study helps understand nurse managers' perceptions and concerns of participating in an implementation leadership training programme and could inform the development and refinement of similar programmes in various nursing contexts globally. [ABSTRACT FROM AUTHOR]

Aim: To obtain a deeper understanding of peoples' experiences of cancer treatments with immune checkpoint inhibitors (ICIs). Background: ICIs are transforming survival outcomes for many with certain advanced cancers. Given the possibility of unique immune‐related adverse events (irAEs), understanding treatment experiences is crucial to identify support needs and provide safe and effective person‐centred care. Design: A systematic review of qualitative research and thematic synthesis. To report this review, the Preferred Reporting Items for Systematic Analysis and Meta Analysis (PRISMA) checklist and Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) guidance have been used. Data Sources: MEDLINE, EMBASE, PsycINFO, CINAHL and Web of Science databases were searched in January 2022 for eligible studies published in English from database inception. Review Methods: Two reviewers independently screened records, identified papers for inclusion and appraised methodological quality using the Critical Appraisal Skills Programme checklist. Themes were developed using thematic synthesis. Results: Eighteen papers were included and three analytical themes developed: immune checkpoint inhibitor treatment decision‐making; the experience and impact of immune checkpoint inhibitor treatments; and appraising and responding to irAEs. Conclusion: The synthesis renders visible individuals' unmet information, psychological and practical support needs. It identifies shortcomings in immune checkpoint inhibitor treatment decision‐making processes and highlights the need for healthcare professionals to recognise and sensitively handle individuals' treatment expectations. Individuals' understandings of and responses to irAEs are also illustrated, and attention drawn to patients' concerns about healthcare professionals' checkpoint inhibitor and irAEs knowledge. Implications for Patient Care: To sensitively manage treatment expectations and uncertainties, and optimise health outcomes, there are distinct points in treatment trajectories where care and support might require adapting and enhancing. Impact: This review addresses people's experiences of immune checkpoint inhibitor treatments. The core findings reveal unmet information, psychological and practical support needs. Insights derived from this review will enhance individuals' experiences and outcomes and healthcare professionals' practice. Patient or Public Contribution: No patient or public involvement. [ABSTRACT FROM AUTHOR]

Accessible Summary: What Is Known about the Subject?: One in five mothers and birthing parents are affected by postpartum depression (PPD), yet only a small proportion of those with PPD receive treatment.Given cost and accessibility barriers to treatment, brief therapies (e.g. 1 day) could help address PPD on a large scale, though understanding participants' unique experiences with this novel treatment will help guide its refinement and use. What this Paper Adds to Existing Knowledge?: This paper describes the experiences, perspectives and satisfaction of participants who attended a 1‐day workshop for PPD.Participants appreciate being taught practical techniques and the receipt of social support from facilitators and other attendees in the group setting, while some recommended further 'booster sessions' to enhance effectiveness. What Are the Implications for Practice?: One‐day CBT‐based workshops may be an effective, low‐intensity treatment option that provides helpful skills and builds social networks for individuals with PPD.Additional post‐workshop booster sessions may enhance participant satisfaction with this new treatment by providing a reinforcement of their learning and an opportunity to re‐connect with other birthing parents. Introduction: Postpartum depression (PPD) affects up to one in five mothers and birthing parents. Understanding their perceptions of therapeutic interventions is key to their effectiveness and scalability. Aim: The aim of the study was to understand participants' experiences attending an in‐person or online 1‐day cognitive behavioural therapy (CBT)‐based workshop for PPD and compare their experiences participating in either modality. Method: This descriptive qualitative study was embedded in two separate randomized controlled trials evaluating the effectiveness of 1‐day CBT‐based workshops for PPD delivered in‐person or online. Responses were provided by 94 in‐person and 95 online participants about their experiences. Content analysis was used to code and categorize the data. Results: Participants appreciated learning skills to improve PPD symptoms and joining a community of individuals with shared experiences. Integrating practical coping techniques after the workshop was reported to be most useful, though some wanted additional post‐workshop support. Online participants identified additional barriers to workshop engagement. Discussion: Participants who attended either workshop found them to be valuable and effective. Participants valued psychoeducation, social connections and applying practical CBT techniques. Implications for Practice: One‐day CBT‐based workshops may be an accessible treatment option for individuals with PPD, providing new skills and social support, though some prefer to receive additional post‐workshop support. [ABSTRACT FROM AUTHOR]

Context: Previous research on athletic trainers' (ATs) documentation practices in the secondary school setting has focused on users of 1 electronic medical record (EMR) platform. These studies have identified that ATs use multiple platforms for documentation, including paper, even when an EMR is available. Objective: To examine the documentation practices of ATs who use various forms of patient care documentation, including paper, EMRs, or both. Design: Qualitative study. Setting: Individual telephone interviews. Patients or Other Participants: Twenty ATs participated in this study: 12 women and 8 men who averaged 38 ± 14 years of age, 15 ± 13 years of clinical experience, and 11 ± 11 years of employment at their current secondary school. Data Collection and Analysis: Semistructured telephone interviews were conducted to gain insight into ATs' documentation practices. Three researchers and 2 auditors inductively coded the transcripts using a consensual qualitative research process that consisted of 4 rounds of consensus coding and determination of data saturation. Trustworthiness was addressed with member checking, multiple-analyst triangulation, and peer review. Results: The ATs' documentation practices were largely influenced by technology, organized in 3 themes. Participants' current documentation strategies included the use of both paper and EMRs, as they found different benefits to using each platform. Oftentimes documentation practices were shaped by technological challenges, including unreliable networks, software design problems, and the lack of a streamlined approach. Lastly, participants identified future strategies for improving documentation, including the need for better EMR options and streamlining their individual documentation behaviors. Conclusions: Many ATs wanted to incorporate EMRs in their clinical practice but faced challenges when attempting to do so. In turn, clinicians often duplicated documentation or used 2 platforms. Athletic trainers should communicate with administrators to select an EMR that fits their documentation needs and seek resources, such as network access and educational opportunities, to learn how to use EMRs. [ABSTRACT FROM AUTHOR]

Aging causes the reduction in physical and physiological strength and an increase in the odds of affliction with chronic physical and mental diseases ultimately affecting the quality of life (QoL). So far, several primary studies have been conducted on the impact of religious-spiritual education and care on the QoL of the elderly. However, to the best of our knowledge, a study that compiles and represents these findings in a published paper is lacking. Therefore, the current study conducted a systematic review and meta-analysis to investigate the effect of religious-spiritual education and care on the QoL of the elderly population. To access studies related to the aim of the study, SID, MagIran, IranMedex, IranDoc, Embase, PubMed, Scopus, Web of Science, and Google Scholar databases were searched. The search was done using relevant and validated keywords with MeSH/Emtree without time limitations until December 2021. The qualitative appraisal of the papers was done using the JBI checklist. To estimate the heterogeneity of studies, I2 index was used, and to combine the data and carry out a meta-analysis, Random Effects model was used. In the primary research, 1065 studies were found. The omission of the redundant cases led to a total number of 12 papers with a sample size of 317 in the intervention group and 321 in the control to be included in the meta-analysis. After the intervention, the mean score of QoL showed a significant increase by 1.42 ± 0.31 with a Confidence Interval of 95% (P<0.001). Meta-regression results showed that the increase in the year of conducting the study, and the number of intervention sessions, that the standardized mean difference had a decreasing trend, and that with the increase in the average age of the elderly, there was a rising trend (P<0.001). Therefore, it seems that the application of religious-spiritual education and care could be part of a program to improve the QoL of the elderly. [ABSTRACT FROM AUTHOR]

The discourse of deservingness has been mobilised against certain groups in the UK society navigating UK labour markets, among them refugees and asylum seekers. These discourses, leading to the stigmatisation of the unemployed are coupled with an emphasis on the importance of individuals taking responsibility to develop their 'employability'. Little attention has been paid to scrutinise the contrast between the deservingness rhetoric and policy making with the actual conditions newcomers, and in particular refugees and asylum seekers, are confronted with when seeking employment. Our paper fills such a gap by indicating key contradictions at the heart of labour market integration in the UK. On the one hand, the emphasis on deservingness is coupled with policy discourses that construct an environment shaped by welfare and labour market chauvinism. On the other hand, the policy architecture is fundamentally flawed in a number of ways in terms of the support mechanisms necessary to ensure that newcomers can successfully integrate into the labour market. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this paper is to present the views of people living with dementia in extra care housing (ECH). This is a model of housing with care and support aiming to support older people, including those with dementia, to live independently. Previous research identifies benefits but is predominantly derived from third-party accounts, with the voices of those living with dementia in ECH significantly absent. Design/methodology/approach: This study adopted a qualitative approach conducting 100 interviews across 8 ECH schemes in England. Over half of the interviews were conducted with people living with dementia and their families with the remainder involving staff and commissioners. Findings: Findings suggest there are a range of benefits including owning your own home, having a safe, age friendly location with flexible support, social interaction and continuing to live as a couple. Challenges included availability of staff, flexible resourcing, loneliness and the advancing symptoms of dementia. Research limitations/implications: Despite efforts to create an inclusive, diverse sample, the participants were all White British. Participants involved were identified by gatekeepers, which may present some bias in the selection. Practical implications: Whilst ECH offers benefits to people living with dementia, addressing the challenges is essential for effective dementia care. Improving staff training, promoting person-centred care and fostering an inclusive community are critical for enhancing residents' well-being and quality of life. Originality/value: This paper explored the lived experiences of residents and family members, providing new insight into the advantages and disadvantages of ECH for people living with dementia. [ABSTRACT FROM AUTHOR]

Introduction: Research with young people (YP) is ethically challenging and bound in a complex maze of issues relating to power, voice and representation. Such sensitivities mean that the challenges raised in researching marginalised YP are often hard to navigate. This paper reports on research carried out with YP to explore links between mental health, school exclusion and involvement in criminal gangs. It aims to provide a practical guide to negotiating some of the methodological and ethical challenges experienced. Method: In‐depth interviews conducted with 28 YP (aged 14–24 years) who were gang involved or seen to be at risk of gang involvement. Research was conducted in youth clubs, alternative provision and youth justice settings. Results: Observations/Reflections We reflect on how navigating ethics can create barriers to involving YP as primary informants in research. We consider why it is important to overcome these hurdles and how public engagement work with recognised gatekeepers and the use of creative interview methods can facilitate meaningful encounters, where YP feel able to share valuable insights into their lives. Conclusion: Alongside a number of specific learning points, the paper reflects on theories behind research with YP, including the need for recognition of power imbalances and reflexivity. It concludes with thoughts on the practical realities of achieving meaningful participation or an 'authentic voice' with marginalised groups and the importance of this in informing policy and practice. Patient or Public Contribution: The focus of this work was to collect experiences of YP who are recognised as gang‐involved or at risk of being so, with a view to informing health and education policies. The scoping study for the project involved extensive public engagement work with YP exploring and trialling suitable methods of accessing, recruiting and ultimately interviewing this target group. This is central to the discussion within the body of the paper. [ABSTRACT FROM AUTHOR]

Aims: To explore the nature of interactions that enable older inpatients with cognitive impairments to engage with hospital staff on falls prevention. Design: Ethnographic study. Methods: Ethnographic observations on orthopaedic and older person wards in English hospitals (251.25 h) and semi‐structured qualitative interviews with 50 staff, 28 patients and three carers. Findings were analysed using a framework approach. Results: Interactions were often informal and personalised. Staff qualities that supported engagement in falls prevention included the ability to empathise and negotiate, taking patient perspectives into account. Although registered nurses had limited time for this, families/carers and other staff, including engagement workers, did so and passed information to nurses. Conclusions: Some older inpatients with cognitive impairments engaged with staff on falls prevention. Engagement enabled them to express their needs and collaborate, to an extent, on falls prevention activities. To support this, we recommend wider adoption in hospitals of engagement workers and developing the relational skills that underpin engagement in training programmes for patient‐facing staff. Implications for Profession and Patient Care: Interactions that support cognitively impaired inpatients to engage in falls prevention can involve not only nurses, but also families/carers and non‐nursing staff, with potential to reduce pressures on busy nurses and improve patient safety. Reporting Method: The paper adheres to EQUATOR guidelines, Standards for Reporting Qualitative Research. Patient or Public Contribution: Patient/public contributors were involved in study design, evaluation and data analysis. They co‐authored this manuscript. [ABSTRACT FROM AUTHOR]

Actual accounts of the experiences of Aboriginal and Torres Strait Islander peoples since colonization remain largely misunderstood and misrepresented within Australian education systems and the broader social consciousness. Culturally sensitive practice and ethnic diversity are challenging topics to teach social work students when truth-telling is absent. Social workers need to develop an understanding of intergenerational trauma experienced by Aboriginal and Torres Strait Islander peoples, critically reflect on perpetuated stereotypes, and confront internalized beliefs about peoples of diverse ethnic and cultural identities in preparation to work respectfully with Indigenous communities. A course focused on building students' knowledge and skills for culturally responsive practice is described in this paper, along with suggestions for enhancing teaching and learning. The paper argues for the importance of truth-telling about Australia's continuing racism in social work education to create cultural safety for service users. [ABSTRACT FROM AUTHOR]

As previous research has observed, medical students and physicians alike confront vast amounts of knowledge in their education and practice, such that no one clinician can know everything there is to know about biomedicine. Even before clerkships, medical students learn to cope with this impossibility by prioritizing certain information based on its perceived utility for exams and clinical practice. Many factors can shape this process, including teamwork, wherein individual medical students rely on one another to address gaps in knowledge at the level of the group. This paper will draw on qualitative data from two allopathic medical schools in the American Midwest to demonstrate that peer-to-peer learning, a widely utilized pedagogical modality in North American medical schools, is amongst the earliest places where future physicians learn how to rely on their peers in the profession as they make choices about what to know and what not to know about biomedicine: cultivating a culture of "intraprofessionalism" between students with different knowledges and values, as they prepare to enter the same profession. The paper will also consider how differences in the student populations at two field sites impact intraprofessional development. Drawing on scholarship of peer-based learning strategies and the sociology and anthropology of medical education, the authors argue that peer-to-peer learning is a key site in the professional socialization of medical students toward the effective management of medical knowledge. [ABSTRACT FROM AUTHOR]

Background: The National Health Service (NHS) and general practice are increasingly adopting digital services. These services can impact both positively and negatively upon patient experiences, and access to digital services is not equal amongst all groups. Within a wider project examining digital facilitation (the Di-Facto study) our team conducted a patient survey amongst English primary care practices aiming to investigate patient views of what supports uptake and use of web-based services. This paper reports on the analysis of the free-text responses from the patient survey. Methods: The Di-Facto patient survey was distributed to practices in eight clinical commissioning groups (CCGs) in England between 2021–2022. We examined free-text responses to two questions relating to access to primary care web-based and support for web-based services. We used qualitative reflexive thematic analysis based on a six-stage process to analyse responses. Results: Of the 3051 patients who responded to the Di-Facto survey, 2246 provided a free-text response. We present our findings in two major themes: systems and structures and their impact on use of web-based services, and 'what works for me', a description of how respondents described what worked, or did not work in terms of their interactions with web-based services. Respondents described how the technology, such as poor practice website design, confusion over multiple digital apps, data security and concerns about eConsultation offerings impacted on use of web-based services. Respondents described practice level barriers, such as a lack of or inconsistent provision, which prevented optimal use of web-based services. Respondents described personal and technical barriers that impacted on their use of digital services, and described which web-based services worked well for them. Respondents felt that web-based services were not a replacement for face-to-face interactions with a doctor. Conclusions: This analysis of free-text responses from a large patient survey highlights the system, practice, and person level barriers and facilitators to use of digital services in primary care. With an increasing push towards digital solutions in NHS primary care, practices should consider the design, rollout and communication of their web-based services to support patient access. [ABSTRACT FROM AUTHOR]

Resilience is an important attribute of incident management teams (IMTs) for managing disasters. Previous research on resilience of IMTs has focused on comparing work-as-imagined (WAI) and work-as-done (WAD) but predominantly used narrative analyses which limited comparisons between IMTs. This paper presents a novel Interaction Episode Analysis (IEA) method to identify the IMT's WAI and WAD episodes by analyzing dynamic interactions that occur between different roles that carry out information management tasks. Observations and audio--visual recordings of two high-fidelity IMT exercises were conducted to capture WAD episodes, and semi-structured interviews with experts elicited corresponding WAI episodes. Quantitative analyses using five interaction-based measures were conducted to detect differences of the WAD episodes between two IMTs. Next, qualitative analyses were focused on identifying reasons why such differences have occurred by comparing the gaps between WAI and WAD episodes. Some of the reasons for WAI-WAD gaps included the non-occurrence of critical interactions that were expected and occurrence of unexpected interactions between IMT members. This paper also identifies cases of preparatory, proactive, and reactive performance adjustment that characterizes IMT resilience. The IEA method shows promise for investigating how and why the gaps between WAI and WAD in IMTs occur. With the identification of these gaps, future research can be conducted to reconcile the gaps between WAI and WAD episodes, and thus enhance resilience of IMTs in future disasters. [ABSTRACT FROM AUTHOR]

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Acquiring information about one's child's cancer diagnosis is a complex and ever-changing process, and parents' needs change over time. As yet, we know little about what information parents require at different stages of their child's illness. This paper is part of a larger randomized control trial studying the parent-centered information given to mothers and fathers. The aim of this paper was to describe the topics addressed in person-centered meetings between nurses and parents of children with cancer and how those changed over time. Using qualitative content analysis, we analyzed nurses' written summaries of 56 meetings with 16 parents and then computed for each topic the percentage of parents who brought it up at any time during the intervention. The main categories were Child's disease and treatment (addressed by 100% of parents), Consequences of treatment (88%), Emotional management for the child (75%), Emotional management for the parent (100%), Social life of the child (63%), and Social life of the parent (100%). Different topics were addressed at different points in time, and fathers raised more concerns about the child's emotional management and the consequences of treatment than mothers. This paper suggests that parental information demands change over time and differ between fathers and mothers, implying that information should be person-centered. Registered at Clinicaltrials.gov (NCT02332226). [ABSTRACT FROM AUTHOR]

This meta-synthesis aimed to synthesise qualitative evidence on experiences of people with Multiple Sclerosis (MS) in receiving a diagnosis, to derive a conceptual understanding of adjustment to MS diagnosis. Five electronic databases were systematically searched to identify qualitative studies that explored views and experiences around MS diagnosis. Papers were quality-appraised using a standardised checklist. Data synthesis was guided by principles of meta-ethnography, a well-established interpretive method for synthesising qualitative evidence. Thirty-seven papers were selected (with 874 people with MS). Synthesis demonstrated that around the point of MS diagnosis people experienced considerable emotional upheaval (e.g., shock, denial, anger, fear) and difficulties (e.g., lengthy diagnosis process) that limited their ability to make sense of their diagnosis, leading to adjustment difficulties. However, support resources (e.g., support from clinicians) and adaptive coping strategies (e.g., acceptance) facilitated the adjustment process. Additionally, several unmet emotional and informational support needs (e.g., need for personalised information and tailored emotional support) were identified that, if addressed, could improve adjustment to diagnosis. Our synthesis highlights the need for providing person-centred support and advice at the time of diagnosis and presents a conceptual map of adjustment for designing interventions to improve adjustment following MS diagnosis. The period surrounding Multiple Sclerosis diagnosis can be stressful and psychologically demanding. Challenges and disruptions at diagnosis can threaten sense of self, resulting in negative emotions. Adaptive coping skills and support resources could contribute to better adjustment following diagnosis. Support interventions should be tailored to the needs of newly diagnosed people. [ABSTRACT FROM AUTHOR]

In this paper, we present findings from a three-year research project funded by the US Institute of Museum and Library Services that examined how advanced broadband measurement capabilities can support the infrastructure and services needed to respond to the digital demands of public library users across the US. Previous studies have identified the ongoing broadband challenges of public libraries while also highlighting the increasing digital expectations of their patrons. However, few large-scale research efforts have collected automated, longitudinal measurement data on library broadband speeds and quality of service at a local, granular level inside public libraries over time, including when buildings are closed. This research seeks to address this gap in the literature through the following research question: How can public libraries utilize broadband measurement tools to develop a better understanding of the broadband speeds and quality of service that public libraries receive? In response, quantitative measurement data were gathered from an open-source broadband measurement system that was both developed for the research and deployed at 30 public libraries across the US. Findings from our analysis of the data revealed that Ookla measurements over time can confirm when the library's internet connection matches expected service levels and when they do not. When measurements are not consistent with expected service levels, libraries can observe the differences and correlate this with additional local information about the causes. Ongoing measurements conducted by the library enable local control and monitoring of this vital service and support critique and interrogation of the differences between internet measurement platforms. In addition, we learned that speed tests are useful for examining these trends but are only a small part of assessing an internet connection and how well it can be used for specific purposes. These findings have implications for state library agencies and federal policymakers interested in having access to data on observed versus advertised speeds and quality of service of public library broadband connections nationwide. [ABSTRACT FROM AUTHOR]

Within qualitative research, much can be learned from the influence of researcher positionality on the research process. Reflecting upon ethnographic fieldwork undertaken for a doctoral study, this paper explores how researcher positionality not only shapes research motivations but also situates the researcher and the 'researched', impacting how data is created and interpreted. There is a long history of engaging with positionality in qualitative research, however, oftentimes this engagement is purely descriptive, providing a 'shopping list' of characteristics and stating if these are shared or not with participants. It is important for engagement with reflexivity to go beyond providing a 'shopping list' of positionality statements to develop deeper discussions about the fluidity of positionality across the research process. Using the previously established concept of 'kitchen table reflexivity', I reflect on how talk allows researchers to outline shifts and adaptability in positionality as research progresses. I expand this concept to argue that kitchen table reflexivity can occur in conversations during fieldwork with participants, utilising a range of in/visible tools at the researcher's disposal. For example, the spaces between fieldwork encounters, the 'waiting field', is often where observations and informal discussions with participants take place. Using fieldnotes and interview data, this paper outlines how positionality fluctuates and interweaves with the theoretical, methodological, and analytical approach taken. The paper concludes by restating the importance of meaningful engagement with positionality throughout qualitative research, in order to avoid static and hollow positionality statements. [ABSTRACT FROM AUTHOR]

Background: This paper explores the mental health and wellbeing outcomes of a massed community choir program in Australia. Methods: This study employed a mixed methods approach. Data were collected via a survey of choir participants (N = 305), four qualitative interviews and focus groups with facilitators and participants (N = 22), and two workshops with organising staff (N = 5). Questions were derived from a co-designed program logic, and data were triangulated and analysed thematically. Results: Participants reported feeling a sense of connectedness (psychological), but also experiencing connection (social) with their fellow singers. Psychological outcomes included the sensations of affect, arousal, and affirmation. Social outcomes included experiencing belonging, inclusion, and sharing. These positive psycho- social experiences promoted positive mental health and wellbeing outcomes in the large group of participating singers. Conclusions: This paper addresses gaps in our understanding about the mental health and wellbeing outcomes fostered by community choirs at scale. [ABSTRACT FROM AUTHOR]

Northern European international retirement migrants are often viewed as affluent and use migration as a route to a better quality of life. However, as these migrants transition into the 'fourth age', the onset of age-related illnesses, frailty and care needs can lead to increased levels of risk and insecurity. Through 34 qualitative interviews with older British migrants in Spain, the paper explores how these migrants access and experience care as they age. It draws on a lens of precarity that allows an understanding not only of individual care needs, but of the political, economic and social context in which they are situated, including social protections and public safety nets. The findings suggest that distant family relationships and limited access to formal social protection can both create and exacerbate precarity. These older migrants therefore develop different strategies to access care that include drawing on informal relationships and voluntary organisations within the British community in Spain. The paper contributes to understanding how international retirement migrants manage their care needs, and theoretically extends our understanding of how the intersection of old age, migration and care can create new forms of precarity. [ABSTRACT FROM AUTHOR]

Background: Shared decision-making is a key element of person-centred care and promoted as the favoured model in preference-sensitive decision-making. Limitations to implementation have been observed, and barriers and limitations, both generally and in the palliative setting, have been highlighted. More knowledge about the process of shared decision-making in palliative cancer care would assist in addressing these limitations. Aim: To identify and synthesise qualitative data on how people with cancer, informal carers and healthcare professionals experience and perceive shared decision-making in palliative cancer care. Design: A systematic review and metasynthesis of qualitative studies. We analysed data using inductive thematic analysis. Data sources: We searched five electronic databases (MEDLINE, EMBASE, PsycINFO, CINAHL and Scopus) from inception until June 2023, supplemented by backward searches. Results: We identified and included 23 studies, reported in 26 papers. Our analysis produced four analytical themes; (1) Overwhelming situation of 'no choice', (2) Processes vary depending on the timings and nature of the decisions involved, (3) Patient-physician dyad is central to decision-making, with surrounding support and (4) Level of involvement depends on interactions between individuals and systems. Conclusion: Shared decision-making in palliative cancer care is a complex process of many decisions in a challenging, multifaceted and evolving situation where equipoise and choice are limited. Implications for practice: Implementing shared decision-making in clinical practice requires (1) clarifying conceptual confusion, (2) including members of the interprofessional team in the shared decision-making process and (3) adapting the approach to the ambiguous, existential situations which arise in palliative cancer care. [ABSTRACT FROM AUTHOR]

The last three census data highlighted that UK Bangladeshi communities have the worst health outcomes. This includes a higher risk of type two diabetes and heart diseases; both are risk factors for developing vascular dementia. However, little is known about Bangladeshi community members' understandings of dementia, including cultural myths. This paper focuses on the cultural myths, superstitions, and stigma surrounding dementia in an English Bangladeshi community from the direct experiences of people living with dementia, their caregivers, and the views of dementia service providers/stakeholders. This qualitative research was undertaken with three distinct participant groups using semistructured interviews (n = 25), who were recruited from community settings. The first and second participant groups explored the experiences of people with dementia (n = 10) and their family caregivers (n = 10). The third group examined stakeholders'/service providers' views (n = 5). Interviews were recorded digitally and transcribed verbatim. Findings were reached using an interpretive approach, emphasising the sense people make in their own lives and experiences and how they frame and understand dementia. The study revealed that participants with dementia and their caregivers have "alternative" knowledge about dementia and do not necessarily understand dementia in a Westernised scientific/biomedical context. Misconceptions about dementia and belief in various myths and superstitions can lead people to go to spiritual healers or practice traditional remedies rather than to their GPs, delaying their dementia diagnosis. This paper concludes that there is a lack of awareness among the Bangladeshi participants and a need for targeted awareness about dementia to help dispel cultural myths and combat the stigma surrounding dementia within the Bangladeshi community. [ABSTRACT FROM AUTHOR]

Background: Historically, researchers have been apt at conducting research on, rather than with, the people who are the focus of their efforts. Such approaches often fail to effectively support and benefit the populations they are intended to. This study aimed to explore the preferences of people with lived experience for engagement with research either as research participants within studies, or through active involvement in mental health research. Methods: Data for this paper were collected in three separate lived experience agenda‐setting studies conducted over a 9‐year period from 2013 to 2022; two group discussions and an open‐ended online survey. Data were combined and thematic analysis undertaken. Results: Participants described the inclusion of lived experience as a critical ingredient and the highest level of knowledge and expertise in mental health research that should lead to knowledge generation and research agendas. Participants discussed the importance and value of research that enables sharing experiences and stories, expressed a need for flexibility in research methods for choice and agency, and support for greater active involvement of people with lived experience across all stages of research. Participants also spoke to the need for perspective and knowledge generated from people with lived experience to have equal power in research, making space for lived experience voices across multiple aspects of research, and greater respect and recognition of the value of lived experience. Conclusion: Lived experience in mental health research is coming of age, but dedicated, cocreated development is needed to get it right. People with lived experience increasingly understand the value their experiential knowledge brings to the mental health research effort, and describe a wide range of ways that researchers can support them to be research participants, and to get actively involved. Power‐sharing, respect and recognition of lived experience as central to effective mental health research are the keys to 'keeping it real'. Patient or Public Contribution: People with lived experience of mental health problems or distress either personally, and/or as carers, family and kinship group members, were involved in the coideation and codesign of this research. All authors identify as people with lived experience. [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]

Background: For adults with inflammatory bowel disease (IBD), they experience many challenges in dietary decision‐making. Thus, this study examined the perspective and experiences of adults with IBD in dietary decision‐making. Objective: This study aimed to explore the perception and consideration of people with IBD in their daily dietary decisions through monitoring, interpretation and action during the decision‐making process. Design: A qualitative study of individuals affected by IBD was conducted through semistructured interviews. Results: Twenty patients were recruited from four tertiary hospitals in Nanjing, China, and each participant completed a semistructured interview. The majority of participants reported on the process and experience of dietary decision‐making. Key themes were categorised into three stages: (1) assessing needs, preferences and food cues (monitor); (2) moving from experience to expertise (interpret) and (3) balancing expectations amidst limitations (act). The majority of participants reported that their decisions were shaped by assessing current disease status and food cues. Those interviewed with IBD were willing to make tradeoffs for bowel stability, but their decisions were also influenced by past dietary experiences and traditional Chinese beliefs. The lack of awareness of dietary guidelines was a significant barrier to healthy eating decisions. Positive or negative feelings accompanied dietary decisions. Conclusion: Although most people with IBD change their diet after diagnosis, the changes made are often inconsistent with existing dietary recommendations. Several factors can influence the dietary decision‐making process. This study will help assess the experiences of people with IBD in dietary decision‐making to encourage the formation of targeted dietary health and well‐being interventions. Knowledge of nutrition and diet should be provided in education and training programmes for IBD management. Patient or Public Contribution: The first three authors of this paper were the lead researchers in this study's design. These authors were mentored by patient researchers who also contributed to the manuscript, and the research process was co‐lead and directed by other patient participants and consultants. The results of this paper were directly obtained from patient participants. [ABSTRACT FROM AUTHOR]

Introduction: Associations between structural inequalities and health are well established. However, there is limited work examining this link in relation to mental health, or that centres public perspectives. This study explores people's experience and sense‐making of inequality in their daily lives, with particular consideration of impacts on mental health. Methods: We conducted a peer research study. Participants had to live in one of two London Boroughs and have an interest in inequalities and mental health. Using social media, newsletters, local organisations and our peer researchers' contacts, we recruited 30 participants who took photos representing their experience of inequality and discussed them during semi‐structured interviews. Data were analysed using reflexive thematic analysis. Results: Three themes were identified in this study: (1) inequalities are unjust, multilayered and intertwined with mental health. Accounts demonstrated a deep understanding of inequalities and their link to mental health outcomes, describing inequalities as 'suffering' and 'not good for anyone'. Financial, housing, immigration and healthcare problems exacerbated poor mental health, with racism, gender‐based violence and job loss also contributing factors for both poor mental health and experiences of inequality; (2) inequalities exclude and have far‐reaching mental health consequences, impacting personal sense of belonging and perceived societal value and (3) moving forwards—addressing long‐standing inequality and poor public mental health necessitated coping and resilience strategies that are often unacknowledged and undervalued by support systems. Conclusion: Lived experience expertise was central in this study, creating an innovative methodological approach. To improve public mental health, we must address the everyday, painful structural inequalities experienced by many as commonplace and unfair. New policies and strategies must be found that involve communities, redistributing resources and power, building on a collective knowledge base, to coproduce actions combatting inequalities and improving population mental health. Patient or Public Contribution: This study was peer‐led, designed and carried out by researchers who had experiences of poor mental health. Six authors of the paper worked as peer researchers on this study. [ABSTRACT FROM AUTHOR]

Accessible Summary: What the paper adds to existing knowledge?: Personality disorder is a serious mental health condition affecting up to 52% of psychiatric outpatients and 70% of inpatients and forensic patients. People with a diagnosis of personality disorder have higher morbidity and mortality than those without.Service users and carers reported a lack of training for staff in the management of individuals with a diagnosis of personality disorder, particularly with regard to self‐harm and suicidal behaviours.Staff burnout creates barriers to compassionate person‐centred care for individuals with a diagnosis of personality disorder as staff struggled to accommodate the nature of the presentation when under significant emotional, psychological and professional strain caused by understaffing and lack of support. What are the implications for practice?: This paper adds new knowledge by informing services of ways to improve care provision from the perspectives of both carers and service users.A more holistic and less medicalised approach to the treatment of problems associated with a diagnosis of a personality disorder should be adopted, and personality disorder training introduced for all healthcare practitioners, to improve patient outcomes. Introduction: There is limited understanding of the experience of people with complex mental health (CMH) needs, including those with a diagnosis of personality disorder (PD) and carers of those individuals. Little is known about carers of those in inpatient forensic settings, yet it has been identified that they may have additional needs when compared to general carers. Research highlights that community carer support services were perceived as inadequate and out‐of‐area placements were described as putting an added strain on ability to support loved ones. Understanding PD within a population of people with CMH needs and how a diagnosis described as PD impacts on care and treatment experience is vital to providing high‐quality care. Aim: To evaluate the care experience of service users and carers with lived experience of a diagnosis of PD and out‐of‐area placements. Method: Semi‐structured interviews were conducted with six service users and four carers to explore the experiences and perspectives of people with a diagnosis of PD. Interviews were audio recorded and thematically analysed. Results: Four interrelated themes were developed; Influence of a diagnosis of PD on Staff, Early and Appropriate Intervention, Recognition of the Individual and Training and Knowledge of people with a diagnosis of PD. Discussion: Anti‐stigma interventions for staff, research on care provision and structural changes to services including more evidence‐based therapy for individuals with a diagnosis of PD may help reduce disparate treatment and improve prognosis for recovery. Implications for Practice: This paper informs services of ways to improve care provision from the perspective of carers and service users. A more holistic and less medicalised approach to the treatment of problems associated with diagnoses of PD should be adopted, and PD training for all healthcare practitioners to improve patient outcomes. [ABSTRACT FROM AUTHOR]

Background: The HeLP-GP trial aimed to increase the capacity of practice nurses to deliver weight management to overweight and obese patients through an intervention comprising a health check, a lifestyle app and/or telephone coaching. This paper describes implementation through the lens of organisational readiness with emphasis on the role of the practice nurse. Methods: Routinely collected mixed method research data including practice surveys, field notes, and diaries and process data were mapped against the domains: motivation to implement, general capacity and intervention-specific capacity. Results: Organisational readiness varied considerably, particularly the domain of intervention-specific capacity. Practice nurse turnover negatively impacted the implementation, affecting half of the practices. We observed a general lack of practice-based support for intervention delivery, and varying levels of interest, skill and confidence in delivering the intervention. Nurses struggled to complete the research and intervention tasks in a timely way. Conducting risk assessments and referring to coaching were generally not problematic; however, we noted lower confidence levels with the lifestyle app and instructing patients to use it. Conclusions: We found a lack of general 'readiness' inherent in the nursing role, particularly related to their capacity to complete intervention tasks and practice-level support to implement the intervention. For nurses in general practice to fulfil their potential in supporting patients to reduce risk and adopt healthier life choices, our study indicates that more could be done to improve their workforce positioning and remuneration, which may, in turn, improve continuity of care, retention and individual motivation. General practice nurses play a key role in delivering prevention. This paper describes the experience of implementing a nurse-led obesity intervention in Australian general practice through the lens of organisational readiness. Our results suggest that for nurses in general practice to fulfil their potential in supporting patients to reduce risk and adopt healthier life choices, more could be done to improve their workforce positioning and remuneration, which may, in turn, improve continuity of care, retention and individual motivation. [ABSTRACT FROM AUTHOR]

Aim: This study aimed to investigate the impact of bronchial asthma‐related factors on the emotional well‐being of adolescents with bronchial asthma and their primary caregivers. Background: Bronchial asthma is a common chronic disease in childhood and adolescence that can have a psychological impact on both patients and their primary caregivers. Methods: The study used a cross‐sectional design and included 150 patient–caregiver dyads diagnosed with bronchial asthma, aged between 12 and 16 years and collected between 2018 and 2020. It assessed the emotional adjustment of both patients and caregivers and recorded variables related to the disease. Qualitative and quantitative analyses were conducted to perform statistical analyses. Results: Caregivers had higher anxiety and depression scores than patients. Good adherence to treatment was necessary for the emotional adjustment of the dyad. Controlled asthma, good adherence to treatment and a reduction in medical treatment were the primary predictors of emotional adjustment. Conclusions: The study highlights the importance of assessing anxiety and depression levels in both patients and caregivers because the presence of these symptoms can lead to the misuse of medication, inadequate inhalation techniques, the omission of medication and reduced confidence in controlling asthma symptoms. Summary statement: What is already known about this topic? Certain variables related to asthma, such as its degree of control, severity, duration of diagnosis and adherence, have been linked to adjustment to the disease by the adolescent–caregiver dyad. What this paper adds? Caregivers had higher anxiety and depression scores than patients.Good adherence to treatment was necessary for the emotional adjustment of the dyad.Controlled asthma, good adherence to treatment and a reduction in medical treatment were the primary predictors of emotional adjustment. The implications of this paper: The study evaluated the variables in combination to identify risk and healthier profiles in the dyad's emotional adjustment and identified variables related to the disease most associated with emotional adjustment to the disease in the dyad.Identifying the risk and health profiles in emotional adjustment in both the adolescent and his or her caregiver may be used to mitigate future consequences related to poor adjustment to asthma.Knowledge of these variables allows health professionals to design psychoeducational programmes to ensure better adaptation to the disease. [ABSTRACT FROM AUTHOR]