Nurturing Resilient Health Ecosystems: What Can We Learn From Patient and Professional Experience?

Patients and professionals face important crises through their "normal" experiences of illness and care, which can either prepare them or make them more vulnerable to global crises. What can we learn from these experiences to nurture more resilient health ecosystems? In this commentary, we reflect on resilience in times of crisis, based on our lived experience as patient and physician. We learned that identifying "who is strong" and "who is vulnerable" can be surprising and unexpected, that patients and professionals can lean on one another at different stages of crises and that resilient health ecosystems require reciprocal, caring relationships at the individual and collective levels.

Patient, caregiver and professional views on preventable emergency admissions of older patients, a multi-method study in three Dutch hospitals.

BACKGROUND: Older adults are too often hospitalized from the emergency department (ED) without needing hospital care. Knowledge about rates and causes of these preventable emergency admissions (PEAs) is limited. This study aimed to assess the proportion of PEAs, the level of agreement on perceived preventability between physicians and patients, and to explore their underlying causes as perceived by patients, their relatives, and the admitting physician. METHODS: A multi-center multi-method study at the ED of one academic and two regional hospitals in the Netherlands was performed. All patients aged > 70 years and hospitalized from the ED were consecutively sampled during a six-week period. Quantitative data regarding patient and clinical characteristics and perceived preventability of the admission were prospectively collected from the electronical medical record and analyzed using descriptive statistics. Agreement on preventability between patient, caregivers and physicians was assessed by using the Cohen's kappa. Underlying causes of a PEA were subsequently collected by semi-structured interviews with patients and caregivers. Physician's perceived causes of a PEA were collected by telephone interviews and by open-ended questions sent by email. Thematic content analysis was used to analyze the interview transcripts and email narratives. RESULTS: Out of 773 admissions, 56 (7.2%) were deemed preventable by patients or their caregivers. Admitting physicians regarded 75 (9.7%) admissions as preventable. The level of agreement between these two groups was low with a Cohen's kappa score of 0.10 (p = 0.003). Perceived causes for PEAs related to six themes: (1) insufficient support at home, (2) suboptimal care in the community setting, (3) errors in hospital care, (4) time of presentation to ED and availability of resources, (5) delayed help seeking behavior, and (6) errors made by patients. CONCLUSIONS: Our findings contribute to the existing evidence that a substantial part (almost one out of ten) of the older adults visiting the ED is perceived as unnecessary hospital care by patients, caregivers and health care providers. Findings also provide valuable insight into the causes for PEAs from a patient perspective. Further research is needed to understand why the perspectives of those responsible for hospital admission and those being admitted vary considerably.

Compassionate care through the eyes of patients and physicians: An interview study.

BACKGROUND: Although compassion is a crucial element of physicians' professional performance and high-quality care, research shows it often remains an unmet need of patients. Understanding patients' and physicians' perspectives on compassionate care may provide insights that can be used to foster physicians' ability to respond to patients' compassion needs. Therefore, this study aims to understand how both patients and physicians experience the concept and practice of compassionate care. METHODS: We conducted semi-structured interviews with eight patients and ten resident physicians at a University Medical Center in the Netherlands. Using thematic analysis, we separately coded patient and resident transcripts to identify themes capturing their experiences of compassionate care. This study was part of a larger project to develop an educational intervention to improve compassion in residents. RESULTS: For both patients and residents, we identified four themes encompassing compassionate care: being there, empathizing, actions to relieve patients' suffering, and connection. For residents, a fifth theme was professional fulfillment (resulting from compassionate care). Although patients and residents both emphasized the importance of compassionate care, patients did not always perceive the physician-patient encounter as compassionate. According to residents, high workloads and time pressures hindered their ability to provide compassionate care. DISCUSSION AND CONCLUSION: Patients and residents have similar and varying understandings of compassionate care at the same time. Understanding these differences can aid compassion in medical practice. Based on the findings, three topics are suggested to improve compassion in residents: (1) train residents how to ask for patients' compassion needs, (2) address residents' limiting beliefs about the concept and practice of compassion, and (3) acknowledge the art and science of medicine cannot be separated.

The opinions and experiences of nursing students, nurses, and patients regarding clinical practices: A mixed-methods study.

The aim of this mixed-methods study was to examine the experiences of nursing students (NSs), nurses, and patients regarding the clinical practices of NSs and to determine NSs' stress levels regarding clinical practices. The quantitative part of the study was completed with 240 NSs, and the "Perceived Stress Scale for Nursing Students" was used. In the qualitative part, the focus group interviews were held with 24 NSs, and the individual interviews were conducted with 15 patients and 20 nurses. Descriptive and stepwise regression analyses were used to analyze quantitative data, and narrative analysis was used to analyze qualitative data. Regression analysis determined that the age, grade point average, and attitude of mentors were associated with the perceived stress levels of NSs. In the narrative analysis of the data obtained from the interviews with NSs and nurses, four categories were identified: Emotions, Facilitators, Barriers, Roles, and Competencies. Three categories (Emotions, Problems, Roles, and Competencies) were identified from patient interviews. This study showed that NSs' clinical practice experiences were affected by many factors and experienced high stress during clinical practice.

Centro de Información y Derivación de Pacientes (CIDP)

Estamos fortaleciendo el Centro de Información y Derivación de Pacientes (CIDP) para mejorar la coordinación en la atención médica durante emergencias y situaciones de plétora de los servicios.

Patients' and Caregivers' Suggestions for Improving Assisted Dying Regulation: A Qualitative Study in Australia and Canada.

INTRODUCTION: Assisted dying (AD) has been legalised in a small but growing number of jurisdictions globally, including Canada and Australia. Early research in both countries demonstrates that, in response to access barriers, patients and caregivers take action to influence their individual experience of AD, as well as AD systems more widely. This study analyses how patients and caregivers suggest other decision-makers in AD systems should address identified issues. METHODS: We conducted semistructured, qualitative interviews with patients and caregivers seeking AD in Victoria (Australia) and three Canadian provinces (British Columbia, Ontario and Nova Scotia). Data were analysed using reflexive thematic analysis and codebook template analysis. RESULTS: Sixty interviews were conducted with 67 participants (65 caregivers, 2 patients). In Victoria, this involved 28 interviews with 33 participants (32 caregivers, 1 patient) about 28 patient experiences. In Canada, this involved 32 interviews with 34 participants (33 caregivers, 1 patient) about 33 patient experiences. We generated six themes, corresponding to six overarching suggestions by patients and caregivers to address identified system issues: (1) improved content and dissemination of information about AD; (2) proactively develop policies and procedures about AD provision; (3) address institutional objection via top-down action; (4) proactively develop grief resources and peer support mechanisms; (5) amend laws to address legal barriers; and (6) engage with and act on patient and caregiver feedback about experiences. CONCLUSION: AD systems should monitor and respond to suggestions from patients and caregivers with firsthand experience of AD systems, who are uniquely placed to identify issues and suggestions for improvement. To date, Canada has responded comparatively well to address identified issues, whereas the Victorian government has signalled there are no plans to amend laws to address identified access barriers. This may result in patients and caregivers continuing to take on the burdens of acting to address identified issues. PATIENT OR PUBLIC CONTRIBUTION: Patients and caregivers are central to this research. We interviewed patients and caregivers about their experiences of AD, and the article focuses on their suggestions for addressing identified barriers within AD systems. Patient interest groups in Australia and Canada also supported our recruitment process.

Attitudes of patients and mental health professionals towards hypothetical use of serious games in psychotherapy.

Serious games are increasingly being applied within healthcare, but their integration in psychotherapeutic settings is less documented. OBJECTIVES: The present study sought to identify the attitudes of psychotherapists and patients towards the hypothetical use of serious games in psychotherapy in the South African context. METHODS: Online surveys assessed acceptance, experience, and requirements for the utilisation of serious games in therapeutic contexts. Clients utilising mental health services (n = 209) and psychotherapists delivering mental health services (n = 156) in South Africa completed the online survey. RESULTS: Knowledge about serious games is limited with only 15% of clients and 16% of therapists reporting knowledge of the existence and application of serious games. Use of serious games is even more infrequent with only 1% of therapists and 6% of clients currently using serious games as an intervention. Despite this, our findings highlight an apparent demand for their use, with 71% of therapists indicating that serious games would be a suitable adjunct treatment modality for their patients. Our results show a general openness toward the use of serious games in psychotherapy. CONCLUSION: The use of serious games as an e-mental health treatment modality is conceivable for both patients and therapists, particularly as a complementary strategy to traditional face-to-face psychotherapy.

Improving patients', carers' and primary care healthcare professionals' experiences of discharge communication from specialist palliative care to community settings: a protocol for a qualitative interview study.

BACKGROUND: Patients who have benefited from specialist intervention during periods of acute/complex palliative care needs often transition from specialist-to-primary care once such needs have been controlled. Effective communication between services is central to co-ordination of care to avoid the potential consequences of unmet needs, fragmented care, and poor patient and family experience. Discharge communications are a key component of care transitions. However, little is known about the experiences of those primarily receiving these communications, to include patients', carers' and primary care healthcare professionals. This study aims to have a better understanding of how the discharge communications from specialist palliative care services to primary care are experienced by patients, carers, and healthcare professionals, and how these communications might be improved to support effective patient-centred care. METHODS: This is a 15-month qualitative study. We will interview 30 adult patients and carers and 15 healthcare professionals (n = 45). We will seek a range of experiences of discharge communication by using a maximum variation approach to sampling, including purposively recruiting people from a range of demographic backgrounds from 4-6 specialist palliative care services (hospitals and hospices) as well as 5-7 general practices. Interview data will be analysed using a reflexive thematic approach and will involve input from the research and advisory team. Working with clinicians, commissioners, and PPI representatives we will co-produce a list of recommendations for discharge communication from specialist palliative care. DISCUSSION: Data collection may be limited by the need to be sensitive to participants' wellbeing needs. Study findings will be shared through academic publications and presentations. We will draft principles for how specialist palliative care clinicians can best communicate discharge with patients, carers, and primary care clinicians. These will be shared with clinicians, policy makers, commissioners, and PPI representatives and key stakeholders and organisations (e.g. Hospice UK) and on social media. Key outputs will be recommendations for a specialist palliative care discharge proforma. TRIAL REGISTRATION: Registered in ISRCTN Registry on 29.12.2023 ref: ISRCTN18098027.

Interdisciplinary research approach based on a mixed-methods design to explore patient altruism at the end of life: a study protocol.

INTRODUCTION: In the end of life context, patients are often seen as somewhat passive recipients of care provided by health professionals and relatives, with little opportunity to be perceived as autonomous and active agents. Since studies show a very high prevalence of altruistic dispositions in palliative care patients, we strive to investigate the concept of patient altruism in a set of six interdisciplinary studies by considering three settings: (1) in the general palliative context-by studying to what extent patient altruism is associated with essential psychological outcomes of palliative care (subproject 1a), how altruism is understood by patients (subproject 1b) and how altruism expressed by patients is experienced by palliative care nurses (subproject 1c); (2) in two concrete decision-making contexts-advance care planning (subproject 2a) and assisted suicide (subproject 2b); and (3) through verbal and non-verbal patient communication in palliative care settings (subproject 3). METHODS AND ANALYSIS: Subproject 1a: a cross-sectional study using validated and standardised questionnaires. Subprojects 1b and 1c: a constructivist grounded theory method aiming at developing a novel theory from semistructured interviews in both patients and nurses. Subproject 2a: a thematic analysis based on (1) audio-recordings of advance care planning encounters and (2) follow-up semidirective interviews with patients and their relatives. Subproject 2b: a qualitative study based on thematic analysis of interviews with patients actively pursuing assisted suicide and one of their relatives.Subproject 3: a conversation analysis based on audio and video-recorded interactions in two settings: (1) palliative inpatient unit and (2) advance care planning discussions. ETHICS AND DISSEMINATION: The study project was approved by the Ethics Committees of the Canton of Vaud, Bern and Ticino (no: 2023-00088). In addition to participation in national and international conferences, each project will be the subject of two scientific publications in peer-reviewed journals. Additional publications will be realised according to result triangulation between projects. A symposium opened to professionals, patients and the public will be organised in Switzerland at the end of the project.

Exemplar Hospital initiation trial to Enhance Treatment Engagement (EXHIT ENTRE): protocol for CTN-0098B a randomized implementation study to support hospitals in caring for patients with opioid use disorder.

BACKGROUND: Hospitalizations involving opioid use disorder (OUD) are increasing. Medications for opioid use disorder (MOUD) reduce mortality and acute care utilization. Hospitalization is a reachable moment for initiating MOUD and arranging for ongoing MOUD engagement following hospital discharge. Despite existing quality metrics for MOUD initiation and engagement, few hospitals provide hospital based opioid treatment (HBOT). This protocol describes a cluster-randomized hybrid type-2 implementation study comparing low-intensity and high-intensity implementation support strategies to help community hospitals implement HBOT. METHODS: Four state implementation hubs with expertise in initiating HBOT programs will provide implementation support to 24 community hospitals (6 hospitals/hub) interested in starting HBOT. Community hospitals will be randomized to 24-months of either a low-intensity intervention (distribution of an HBOT best-practice manual, a lecture series based on the manual, referral to publicly available resources, and on-demand technical assistance) or a high-intensity intervention (the low-intensity intervention plus funding for a hospital HBOT champion and regular practice facilitation sessions with an expert hub). The primary efficacy outcome, adapted from the National Committee on Quality Assurance, is the proportion of patients engaged in MOUD 34-days following hospital discharge. Secondary and exploratory outcomes include acute care utilization, non-fatal overdose, death, MOUD engagement at various time points, hospital length of stay, and discharges against medical advice. Primary, secondary, and exploratory outcomes will be derived from state Medicaid data. Implementation outcomes, barriers, and facilitators are assessed via longitudinal surveys, qualitative interviews, practice facilitation contact logs, and HBOT sustainability metrics. We hypothesize that the proportion of patients receiving care at hospitals randomized to the high-intensity arm will have greater MOUD engagement following hospital discharge. DISCUSSION: Initiation of MOUD during hospitalization improves MOUD engagement post hospitalization. Few studies, however, have tested different implementation strategies on HBOT uptake, outcome, and sustainability and only one to date has tested implementation of a specific type of HBOT (addiction consultation services). This cluster-randomized study comparing different intensities of HBOT implementation support will inform hospitals and policymakers in identifying effective strategies for promoting HBOT dissemination and adoption in community hospitals. TRIAL REGISTRATION: NCT04921787.

Quality improvement: treatment escalation plans in oncology.

Treatment escalation plans (TEPs) are increasingly appreciated tools in modern hospital medicine. It records and advises on the appropriate escalation of care for our patients, often when those of us who know them best are not available. It is of value in all specialties, though notably in oncology where an oncologist would be best placed at advising on the care of their patients.A baseline study in September 2021 found only 22% of patients admitted under oncology at Northampton General Hospital had TEP forms completed within 72 hours of admission. This quality improvement project aimed to significantly and sustainably improve this. Education and increasing the understanding of the medical and nursing teams about the importance of timely TEP form completion was essential. We also made TEPs a part of every multidisciplinary team discussion regarding a patient. Though, most significantly was the recognition that one of the responsibilities of the admitting registrar was to fill out a TEP form once the decision to admit had been made. Our ensuing study found an increase in our completion rate to 83% in February 2022.A fall in performance after introduction of new medical staff was swiftly remedied by re-education and encouragement to join daily board rounds. We sustained and improved the team's rate of TEP completion, within 72 hours of admission, to 80% in February 2023 and 91% in May 2023.

Mixed Methods EvAluation of the high-volume low-complexity Surgical hUb pRogrammE (MEASURE): a mixed methods study protocol.

INTRODUCTION: The waiting list for elective surgery in England recently reached over 7.8 million people and waiting time targets have been missed since 2010. The high-volume low complexity (HVLC) surgical hubs programme aims to tackle the backlog of patients awaiting elective surgery treatment in England. This study will evaluate the impact of HVLC surgical hubs on productivity, patient care and the workforce. METHODS AND ANALYSIS: This 4-year project consists of six interlinked work packages (WPs) and is informed by the Consolidated Framework for Implementation Research. WP1: Mapping current and future HVLC provision in England through document analysis, quantitative data sets (eg, Hospital Episodes Statistics) and interviews with national service leaders. WP2: Exploring the effects of HVLC hubs on key performance outcomes, primarily the volume of low-complexity patients treated, using quasi-experimental methods. WP3: Exploring the impact and implementation of HVLC hubs on patients, health professionals and the local NHS through approximately nine longitudinal, multimethod qualitative case studies. WP4: Assessing the productivity of HVLC surgical hubs using the Centre for Health Economics NHS productivity measure and Lord Carter's operational productivity measure. WP5: Conducting a mixed-methods appraisal will assess the influence of HVLC surgical hubs on the workforce using: qualitative data (WP3) and quantitative data (eg, National Health Service (NHS) England's workforce statistics and intelligence from WP2). WP6: Analysing the costs and consequences of HVLC surgical hubs will assess their achievements in relation to their resource use to establish value for money. A patient and public involvement group will contribute to the study design and materials. ETHICS AND DISSEMINATION: The study has been approved by the East Midlands-Nottingham Research Ethics Committee 23/EM/0231. Participants will provide informed consent for qualitative study components. Dissemination plans include multiple academic and non-academic outputs (eg, Peer-reviewed journals, conferences, social media) and a continuous, feedback-loop of findings to key stakeholders (eg, NHS England) to influence policy development. TRIAL REGISTRATION: Research registry: Researchregistry9364 (https://www.researchregistry.com/browse-the-registry%23home/registrationdetails/64cb6c795cbef8002a46f115/).

Integrating palliative care in patients with advanced multiple sclerosis: a scoping review.

BACKGROUND: Multiple sclerosis (MS) often presents a long and uncertain evolution. Treatment decisions in advanced MS are supported by robust evidence, but recent guidelines have suggested a shift to a palliative approach as the disease progresses. This study aims to describe what is known about the integration of palliative care (PC) in patients with severe MS (cost-effectiveness, moment of reference, and perspective of stakeholders). METHODS: A scoping review was developed, and the Scopus, Medline (PubMed), ISI Web of Knowledge, and SAGE databases were consulted, using the key terms: "multiple sclerosis" AND "palliative care". Studies on the perspectives of patients, caregivers, and health professionals regarding the integration of PC in MS were included. No restrictions were applied regarding the subtype of MS, gender, ethnicity, frequency of use of health services, and language. RESULTS: Of 158 articles identified, 19 were included in the review. Key factors were identified, such as the effectiveness of PC intervention in severe MS, the financial impact of providing PC compared to conventional care, the reduction of symptoms and caregiver burden, and the perception of unmet needs by users, health professionals, and caregivers during the PC approach. CONCLUSIONS: Patients with MS should have access to specialized PC when they reach the severe phase of the disease. Providing a multidisciplinary team to provide targeted consultations based on the patient's needs may be most appropriate. These issues have important implications for the future planning and provision of PC services.

Evaluation of pediatric trauma score and pediatric age-adjusted shock index in pediatric patients admitted to the hospital after an earthquake.

BACKGROUND: In our earthquake-prone country, it is crucial to gather data from regional hospitals following earthquakes. This information is essential for preparing for future disasters and enhancing healthcare services for those affected by earthquakes. This study aimed to evaluate the Pediatric Trauma Score (PTS) and the Shock Index, Pediatric Age-Adjusted (SIPA), in children affected by earthquakes, to provide clinicians with insights into the severity of trauma and hemodynamic stability. METHODS: The study included patients admitted to our hospital's pediatric emergency service within the three weeks following the earthquake. We evaluated their age, sex, admission vital signs, mechanical ventilation requirements, development of crush syndrome, length of hospital stay, PTS, and SIPA. RESULTS: Our study included 176 children (89 females and 87 males) with trauma. Fifty-eight (32.95%) children had crush syndrome, and 87 (49.43%) were hospitalized. The median PTS was 10 (ranging from -3 to 12), and the median SIPA was 1.00 (ranging from 0.57 to 2.10). We observed a negative correlation between the time spent under debris and PTS (r=-0.228, p=0.002) and a positive correlation with the SIPA score (r=0.268, p<0.001). The time spent under debris (p<0.001) and SIPA score (p<0.001) were significantly higher in hospitalized children. PTS was significantly lower in hospitalized children than in others. A PTS cutoff point of 7.5, and a SIPA cutoff point of 1.05, predicted hospitalization in all children. Time spent under debris and SIPA were significantly higher in children with crush syndrome than in others (p<0.001). PTS at a cutoff point of 8.5 and SIPA at a cutoff point of 1.05 predicted crush syndrome in all children. CONCLUSION: PTS and SIPA are important practical scoring systems that can be used to predict the severity of trauma, hospitalization, crush syndrome, and the clinical course in pediatric patients admitted to the hospital due to earthquake trauma.

Co-designing a Health Journey Mapping resource for culturally safe health care with and for First Nations people.

Background Many healthcare professionals and services strive to improve cultural safety of care for Australia's First Nations people. However, they work within established systems and structures that do not reliably meet diverse health care needs nor reflect culturally safe paradigms. Journey mapping approaches can improve understanding of patient/client healthcare priorities and care delivery challenges from healthcare professionals' perspectives leading to improved responses that address discriminatory practices and institutional racism. This project aimed to review accessibility and usability of the existing Managing Two Worlds Together (MTWT) patient journey mapping tools and resources, and develop new Health Journey Mapping (HJM) tools and resources. Method Four repeated cycles of collaborative participatory action research were undertaken using repeated cycles of look and listen, think and discuss, take action together. A literature search and survey were conducted to review accessibility and usability of MTWT tools and resources. First Nations patients and families, and First Nations and non-First Nations researchers, hospital and university educators and healthcare professionals (end users), reviewed and tested HJM prototypes, shaping design, format and focus. Results The MTWT tool and resources have been used across multiple health care, research and education settings. However, many users experienced initial difficulty engaging with the tool and offered suggested improvements in design and usability. End user feedback on HJM prototypes identified the need for three distinct mapping tools for three different purposes: clinical care, detailed care planning and strategic mapping, to be accompanied by comprehensive resource materials, instructional guides, videos and case study examples. These were linked to continuous quality improvement and accreditation standards to enhance uptake in healthcare settings. Conclusion The new HJM tools and resources effectively map diverse journeys and assist recognition and application of strengths-based, holistic and culturally safe approaches to health care.

"It is very hard to just accept this" - a qualitative study of palliative care teams' ethical reasoning when patients do not want information.

BACKGROUND: The aim of this study was to explore how palliative care staff reason about the autonomy challenge that arises when a patient who has first said he wants full information appears to change his mind and rejects being informed. METHODS: The study had a qualitative and exploratory design. Participants (physicians, registred nurses, social workers, physiotherapists and occupational therapists) were recruited from palliative care teams in southern Sweden. Six separate focus group interviews with a total number of 33 participants were conducted. The teams were asked to discuss a fictional case of a man who first wants, then rejects, information about his situation. The interviews were audiotaped and transcribed verbatim. Reflexive thematic analysis following Braun and Clarke was undertaken to analyse data. RESULTS: The analysis resulted in three themes: Patients have a right to reject information, Questioning whether this patient WANTS to reject information and There are other values at stake, too. Although participants endorsed a right to reject information, they were unsure whether this right was relevant in this situation, and furthermore felt that it should be balanced against counteracting factors. The effect of such balancing was that participants would aim to find a way to present relevant information to the patient, but in a probing and flexible way. CONCLUSIONS: In their work with dying patients, palliative care staff meet many autonomy challenges. When faced with a choice to withhold information as per a patient's wishes, or to provide information with the patient's best interest in mind, staff find it hard to balance competing values. Staff also find it hard to balance their own interests against a purely professional stance. The overall strategy seems to be to look for caring ways to impart the information.