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Practitioner understanding of patients' preferences, wishes and needs is essential for personalised health care i.e., focusing on 'what matters' to people based on their individual life situation. To develop such an understanding, dementia practitioners need to use communication practices that help people share their experiences, preferences, and priorities. Following the COVID-19 pandemic, dementia support is likely to continue to be delivered both remotely and in-person. This study analysed multiple sources of qualitative data to examine the views of practitioners, people living with dementia and carers, and researchers on how an understanding of what matters to people living with dementia can be developed remotely via telephone and video call. Access to environmental stimuli, the remote use of visual tools, peoples' tendency to downplay or omit details about their troubles and carers' ability to disclose privately were interpreted, through thematic analysis, to be factors affecting how practitioners sought to develop understanding remotely. Cumulatively, findings show that while remote support created unique challenges to practitioners' ability to develop understanding for personalised care, practitioners developed adaptive strategies to overcome some of these challenges. Further research should examine how, when and for whom these adapted practices for remote personalised care work, informing the development of evidence-based guidance and training on how practitioners can remotely develop the understanding required for personalised care. [ABSTRACT FROM AUTHOR]

Background: Different dementia support roles exist but evidence is lacking on which aspects are best, for whom, and in what circumstances, and on their associated costs and benefits. Phase 1 of the Dementia PersonAlised Care Team programme (D-PACT) developed a post-diagnostic primary care)based intervention for people with dementia and their carers and assessed the feasibility of a trial. Aim: Phase 2 of the programme aims to 1) refine the programme theory on how, when, and for whom the intervention works; and 2) evaluate its value and impact. Design & setting: A realist longitudinal mixed-methods evaluation will be conducted in urban, rural, and coastal areas across South West and North West England where low-income or ethnic minority populations (for example, South Asian) are represented. Design was informed by patient, public, and professional stakeholder input and phase 1 findings. Method: High-volume qualitative and quantitative data will be collected longitudinally from people with dementia, carers, and practitioners. Analyses will comprise the following: 1) realist longitudinal case studies; 2) conversation analysis of recorded interactions; 3) statistical analyses of outcome and experience questionnaires; 4a) health economic analysis examining costs of delivery; and 4b) realist economic analysis of high-cost events and ‘near misses’. All findings will be synthesised using a joint display table, evidence appraisal tool, triangulation, and stakeholder co-analysis. Conclusion: The realist evaluation will describe how, why, and for whom the intervention does or does not lead to change over time. It will also demonstrate how a non-randomised design can be more appropriate for complex interventions with similar questions or populations. [ABSTRACT FROM AUTHOR]

Background: Epidermolysis bullosa (EB) comprises a group of rare genetic conditions that are characterized by fragility of the skin and mucous membranes and formation of blisters with minor trauma. Severe forms can be life limiting. The palliative care needs of children with severe EB are poorly described. Aim: The aim of this case series was to examine the contribution of a pediatric palliative care service to the complex health care needs of children with severe EB. Methods: We present a case series of five children with severe forms of EB who were known to the state-wide Victorian Paediatric Palliative Care Service, with a discussion of our learnings in caring for these children and their families. Results: Medical treatment decision making in EB provokes complex ethical, psychological, personal, and professional dilemmas. This case series highlights the diversity of management approaches that may be considered, each tailored to the unique context of the child and family. [ABSTRACT FROM AUTHOR]

A two-year-old girl was initially suspected of being a victim of child abuse due to the presence of large erosions and scars on her buttocks and other areas of her body. However, further examination and history-taking revealed that she had a rare skin fragility disorder called epidermolysis bullosa. The disorder causes blistering and fragility of the skin and mucous membranes. The girl was enrolled in a specialized care program and responded well to preventive treatment. This case highlights the importance of considering alternative diagnoses and obtaining a thorough history when evaluating unusual skin presentations in children. [Extracted from the article]

Background: Family caregivers often experience psychological distress during a critical care hospitalization, potentially compromising their ability to function effectively in a supportive role. A better understanding of the sources of family caregiver distress is needed to inform strategies to mitigate its development and impact. Objective: To explore sources of family caregiver psychological distress during a critical care hospitalization and how caregivers' experiences may differ by their anxiety level. Methods: Forty adult family members of patients receiving mechanical ventilation for more than 72 hours in 2 intensive care units at an academic medical center were interviewed. A qualitative directed content analysis was done. Experiences were compared by anxiety level group, defined using the Hospital Anxiety and Depression Scale: anxiety (n = 15), borderline anxiety (n = 11), and low anxiety (n=14). Results: Most family members (32%) were adult children; no major demographic differences were noted across anxiety groups. Among caregivers in the anxiety group, salient factors included early unknowns around critical illness, health care team processes, care decisions made, financial and housing concerns, family dysfunction, and new responsibilities. In general, low-anxiety family caregivers did not express their concerns using language of distress but rather expressed emotion and disappointment and often took action to process their concerns. Conclusions: Factors influencing family caregiver distress during the critical care stay were wide-ranging and varied by level of anxiety. The findings highlight several key areas and potential interventions to reduce psychological distress, especially among caregivers with anxiety. [ABSTRACT FROM AUTHOR]

Background: 'Engager' is an innovative 'through-the-gate' complex care intervention for male prison-leavers with common mental health problems. In parallel to the randomised-controlled trial of Engager (Trial registration number: ISRCTN11707331), a set of process evaluation analyses were undertaken. This paper reports on the depth multiple case study analysis part of the process evaluation, exploring how a sub-sample of prison-leavers engaged and responded to the intervention offer of one-to-one support during their re-integration into the community. Methods: To understand intervention delivery and what response it elicited in individuals, we used a realist-informed qualitative multiple 'case' studies approach. We scrutinised how intervention component delivery lead to outcomes by examining underlying causal pathways or 'mechanisms' that promoted or hindered progress towards personal outcomes. 'Cases' (n = 24) were prison-leavers from the intervention arm of the trial. We collected practitioner activity logs and conducted semi-structured interviews with prison-leavers and Engager/other service practitioners. We mapped data for each case against the intervention logic model and then used Bhaskar's (2016) 'DREIC' analytic process to categorise cases according to extent of intervention delivery, outcomes evidenced, and contributing factors behind engagement or disengagement and progress achieved. Results: There were variations in the dose and session focus of the intervention delivery, and how different participants responded. Participants sustaining long-term engagement and sustained change reached a state of 'crises but coping'. We found evidence that several components of the intervention were key to achieving this: trusting relationships, therapeutic work delivered well and over time; and an in-depth shared understanding of needs, concerns, and goals between the practitioner and participants. Those who disengaged were in one of the following states: 'Crises and chaos', 'Resigned acceptance', 'Honeymoon' or 'Wilful withdrawal'. Conclusions: We demonstrate that the 'implementability' of an intervention can be explained by examining the delivery of core intervention components in relation to the responses elicited in the participants. Core delivery mechanisms often had to be 'triggered' numerous times to produce sustained change. The improvements achieved, sustained, and valued by participants were not always reflected in the quantitative measures recorded in the RCT. The compatibility between the practitioner, participant and setting were continually at risk of being undermined by implementation failure as well as changing external circumstances and participants' own weaknesses. Trial registration number: ISRCTN11707331, Wales Research Ethics Committee, Registered 02-04-2016—Retrospectively registered https://doi.org/10.1186/ISRCTN11707331. [ABSTRACT FROM AUTHOR]

Background and purpose: Adults lacking capacity are under-represented in research; therefore, the evidence-base surrounding their support needs is inferior compared to other populations. Involving this group in research is fraught with challenges, including researcher uncertainties about how to carry out capacity judgements. Whilst ethical guidelines and principles provide overarching guidance, there is a lack of detailed guidance and evidence-based training, incorporating practical 'on the ground' strategies and advice on communication practices. Experiences and reflections on research procedures used to gauge and address capacity are under reported, resulting in a lack of shared knowledge within the field. Design: To help address this, we engaged in researcher (co)meta-reflection on the informed capacity judgement procedure for initial consent, within our current, person-centred dementia intervention feasibility study. Our objective was to identify areas to improve our approach, but to also put forward suggestions for wider change within ethical research practice. Results: Findings reveal challenges and facilitators relating to six areas: 'Conducting time sensitive research whilst remaining person-centred and building relationships'; 'Information sharing and supporting communication'; 'Applying the process flexibly'; 'The role of the carer and the consultee process'; 'Judging assent and dissent' and 'Researcher related factors'. We questioned our 'capacity to make capacity judgements' in terms of both our skills and research time constraints. Conclusions: Based on our experiences, we argue for greater open discussion between researchers, Patient and Public Involvement contributors and Research Ethics Committees at initial project planning stages. We recommend training and guidance focuses on building researcher skills in applying a standard process flexibly, emphasising naturalistic, conversational approaches to capacity judgement. A crucial consideration for funders is how this time-intensive and sensitive work should be factored into bid application templates and funding grants. Learnings from this article have potential to inform evidence-based guidance and training for researchers, consultees, funders, reviewers and ethics committees. [ABSTRACT FROM AUTHOR]

'Dementia - Personalised Care Team' (D-PACT) is a five-year NIHR funded programme, using realist methods to develop and evaluate a complex, person-centred intervention for people with dementia and their carers. During the early project stages, we engaged with multiple stakeholders, including people with dementia and their carers, to develop an initial programme theory (IPT) – into an elaborated programme theory (EPT), by helping to uncover intervention mechanisms leading to outcomes in specific contexts. Realist research methods for developing programme theories are under-reported. In addition, there is a paucity of practical guidance on how to engage underserved and vulnerable populations in complex interventions programme theory development. We attend to these gaps, providing a worked example of how we meaningfully engaged people living with dementia and carers, alongside field experts, as stakeholders in this process. Our IPT theory building included multi-stakeholder primary research exercises and meetings with PPI contributors and an Expert Reference Group. We adapted interview schedules, and used visual resources and scenario-based activities, to support stakeholders to think in a 'realist' way. Using realist and thematic analyses led to hypothesis-building of causal mechanisms. Sharing findings with stakeholders led to further refinement of the intervention design, ready for testing in a subsequent feasibility study. We found that, despite the cognitive challenges associated with dementia, innovative methods of engagement can enable this stakeholder group to understand the realist approach and provide a platform through which to share their experiences. Taking a highly flexible and unhurried approach, led to novel insights into the complexities of person-centred dementia support. We argue for more detailed methodological guidance, based on realist principles, on how to collaborate with underrepresented populations to rigorously gain insights as to what is likely to make a difference and refine initial programme theory. [ABSTRACT FROM AUTHOR]

Judgemental rationality is infrequently referenced within discussions of Realist Evaluations. Judgemental rationality refers to researchers' capacity to assess which, potential, meanings provide the most credible explanations. In evaluation work, rationale for analysis is provided, though rarely do we see how an evaluator made judgements between competing theories, and which theories were discarded and why. We provide a worked example of the application of judgemental rationality. The Engager intervention offered support to prison leavers with common mental health problems. The data for 24, purposively sampled, participants from the intervention arm of the trial were integrated. Bhaskar's DREIC, a five-step analytical procedure, was used to transfactually theorise and interrogate the inferences made within, and across, cases. The findings demonstrated that the intervention was more effective when practitioners developed an in-depth understanding of the participant. We recommend that intervention developers look for ways to enhance therapeutic competencies and judgemental rationality in practitioner teams. [ABSTRACT FROM AUTHOR]

Background Peripherally inserted central catheters (PICCs) provide reliable intravenous access for delivery of parenteral therapy. Yet, little is known about PICC care practices or how they vary across hospitals. We compared PICC-related processes across hospitals with different insertion delivery models. Methods We used a descriptive qualitative methodology and a naturalist philosophy, with site visits to conduct semistructured interviews completed between August 2018 and January 2019. Study sites included five Veterans Affairs Medical Centres, two with vascular access teams (VATs), two with PICC insertion primarily by interventional radiology (IR) and one without on-site PICC insertion capability. Interview participants were healthcare personnel (n=56), including physicians, bedside and vascular access nurses, and IR clinicians. Data collection focused on four PICC domains: use and decision-making process, insertion, in-hospital management and patient discharge education. We used rapid analysis and a summary matrix to compare practices across sites within each domain. Results Our findings highlight the benefits of dedicated VATs across all PICC-related process domains, including implementation of criteria to guide PICC placement decisions, timely PICC insertion, more robust management practices and well-defined patient discharge education. We also found areas with potential for improvement, such as clinician awareness of PICC appropriateness criteria and alternative devices, deployment of VATs and patient discharge education. Conclusion Vascular access nurses play critical roles in all aspects of PICC-related care. There is variation in PICC decision-making, care and maintenance, and patient education across hospitals. Quality and safety improvement opportunities to reduce this variation are highlighted. [ABSTRACT FROM AUTHOR]

Within the US, the patient-centred medical home has become a predominant model in the delivery of primary care. This model requires a shift from the physician-centric model to an interprofessional team-based approach. Thus, healthcare staff are being reorganized into teams, resulting in having to work and relate to one another in new ways. In 2010, the Veterans Health Administration implemented the patient aligned care team (PACT) model, its version of the patient-centred medical home. The transition to the PACT model involved restructuring primary care staff into “teamlets”, consisting of a registered nurse, licensed practical nurse, and administrative clerk for each full-time-equivalent primary care provider. This qualitative study used observation and semi-structured interviews to understand the factors that affect teamlet functioning as they implement this new model of care and how teams are interacting to address those factors. Findings suggest that role understanding includes understanding how each teamlet member’s tasks are performed in the daily operations of the clinic. In addition, willingness to perform tasks that benefit the teamlet and acceptance of delegation from all teamlet members were found to be important for teamlet functioning and cohesion. In order for healthcare teams to provide patient-centred care, it is important to provide guidance and support about what these new relationships and roles will entail. The building of team relationships is not a static process; ways of working together build over time and, therefore, should be seen as a continuous cycle of quality improvement. [ABSTRACT FROM AUTHOR]

The article presents a case study of a 66-year-old man presented with a 6-week history of progressively enlarging right parotid lump. It discusses the Fine needle aspiration confirmed a poorly differentiated neuroendocrine tumour, positive for synaptophysin and chromogranin. It notes the definitive radiotherapy using intensity-modulated radiotherapy for surgical management and subsequent treatment provided to the patient.

Background: Urine-culture diagnostic stewardship aims to decrease misdiagnosis of urinary tract infections (UTIs); however, these interventions are not widely adopted. We examined UTI diagnosis and management practices to identify barriers to and facilitators of diagnostic stewardship implementation., Methods: Using a qualitative descriptive design, we conducted semistructured interviews at 3 Veterans' Affairs medical centers. Interviews were conducted between November 2021 and May 2022 via Zoom videoconferencing using an interview guide and visual prototypes of proposed interventions. Interviewees were asked about current practices and thoughts on proposed interventions for urine-culture ordering, processing, and reporting. We used a rapid analysis matrix approach to summarize key interview findings and compare practices and perceptions across sites., Results: We interviewed 31 stakeholders and end users. All sites had an antimicrobial stewardship program but limited initiatives targeting appropriate diagnosis and management of UTIs. The majority of those interviewed identified the importance of diagnostic stewardship. Perceptions of specific interventions ranged widely by site. For urine-culture ordering, all 3 sites agreed that documentation of symptomology would improve culturing practices but did not want it to interrupt workflow. Representatives at 2 sites expressed interest in conditional urine-culture processing and 1 was opposed. All sites had similar mechanisms to report culture results but varied in perceptions of the proposed interventions. Feedback from end users was used to develop a general diagnostic stewardship implementation checklist., Conclusion: Interviewees thought diagnostic stewardship was important. Qualitative assessment involving key stakeholders in the UTI diagnostic process improved understanding of site-specific beliefs and practices to better implement interventions for urine-culture ordering, processing, and reporting.

Background: Many male prisoners have significant mental health problems, including anxiety and depression. High proportions struggle with homelessness and substance misuse., Aims: This study aims to evaluate whether the Engager intervention improves mental health outcomes following release., Method: The design is a parallel randomised superiority trial that was conducted in the North West and South West of England (ISRCTN11707331). Men serving a prison sentence of 2 years or less were individually allocated 1:1 to either the intervention (Engager plus usual care) or usual care alone. Engager included psychological and practical support in prison, on release and for 3-5 months in the community. The primary outcome was the Clinical Outcomes in Routine Evaluation Outcome Measure (CORE-OM), 6 months after release. Primary analysis compared groups based on intention-to-treat (ITT)., Results: In total, 280 men were randomised out of the 396 who were potentially eligible and agreed to participate; 105 did not meet the mental health inclusion criteria. There was no mean difference in the ITT complete case analysis between groups (92 in each arm) for change in the CORE-OM score (1.1, 95% CI -1.1 to 3.2, P = 0.325) or secondary analyses. There were no consistent clinically significant between-group differences for secondary outcomes. Full delivery was not achieved, with 77% (108/140) receiving community-based contact., Conclusions: Engager is the first trial of a collaborative care intervention adapted for prison leavers. The intervention was not shown to be effective using standard outcome measures. Further testing of different support strategies for prison with mental health problems is needed.

Despite potential to capture rich contextual information, observation remains an underutilized data collection method. This paper provides a practical guide for using observation to understand complex issues in healthcare settings. Observation is a qualitative data collection method comprised of viewing and documenting phenomena in the usual environment. Drawing on our recent work using observation to better understand personal protective equipment use among healthcare personnel, we describe when to consider collecting data via observation, how to prepare and perform observation, and how to analyze resulting data. Observation data are documented in field notes that contain detailed information about setting, participants, and activity associated with the topic of interest. Field notes can be analyzed alone or triangulated with other types of data using theoretical or conceptual frameworks or by identifying themes. Observation is a valuable data collection method for health services researchers to identify key components involved in a topic of interest, a vital step in forming relevant questions, measuring appropriate variables, and designing effective interventions. Used with other methods or alone, observation yields the detailed data needed to address context-specific factors across a wide range of healthcare research topics and settings., Competing Interests: Conflict of interests: The authors have no conflict of interest to declare., (©Copyright: the Author(s).)