Learning to teach with patients and caregivers: a focused ethnography.

BACKGROUND: Little is known about what happens when patients and caregivers are involved in an academic setting as co-teachers and how healthcare professionals approach a new model of partnership-based teaching. This study aimed to explore the learning and behavioural patterns of a group of healthcare professionals who were learning to teach with patients and caregivers as co-teachers in a post-graduate course. METHODS: A focused ethnographic study involving 11 health professionals was conducted. Data were collected through participatory observation during the course, individual semi-structured interviews, and a follow-up focus group. Taxonomic analysis was performed. RESULTS: Three categories were identified: 'group', 'role of narration' and 'applying co-teaching with patients and caregivers '. Specifically, heterogeneity, absence of hierarchies, and balanced relationships characterised the group dynamic and promoted partnership. Narration played a key role both in learning and in healthcare professionals' relationship with patients and caregivers and promoted emotional skills and self-awareness. Project planning and lessons simulations were essential aspects of the implementation process. CONCLUSIONS: This focused ethnography helped further understanding of the context of a specific project involving patients and caregivers as co-teachers in healthcare professional education. The development of emotional skills and self-awareness are the main learning patterns of co-teaching, and interprofessionalism and balanced relationships are the basis of the behavioural patterns. These patterns facilitated the involvement of patients and caregivers in health education.

Experiential training course on spirituality for multidisciplinary palliative care teams in a hospital setting: a feasibility study.

BACKGROUND: There is widespread agreement about the importance of spiritual training programs (STPs) for healthcare professionals caring for cancer patients, and that reflecting on one's spirituality is the first step. Health professionals (HPs) working in hospitals must develop this dimension to guarantee the quality of life as well as spiritual and emotional support. In this paper, we propose a possible training format for hospital professionals and assess its implementation. METHODS: This is a phase 0-I study that follows the Medical Research Council (MRC) framework. The program was implemented for hospital palliative care specialists. The program included one theory lesson, three spiritual interactions, four pieces of reflective writing, and two individual follow-up sessions for each participant. The evaluation was performed quantitatively according to the MRC framework and qualitatively according to Moore's framework with data triangulation from interviews, reflective writings, and indicators. RESULTS: The program was implemented for palliative care physicians, nurses, psychologists, and bioethicists according to the plan, and the program components were highly appreciated by the participants. The results suggest the feasibility of a training course with some corrections, regarding both the components of the training and organizational issues. The qualitative analysis confirmed a shift in the meaning of the themes we identified. The trainees went from intrapersonal spirituality to interpersonal spirituality (engagement with the other person's spirituality, acknowledging their unique spiritual and cultural worldviews, beliefs, and practices), with colleagues, patients, and people close to them. The training had an impact on Moore's Level 3b. CONCLUSIONS: Spiritual training for hospital professionals working in palliative care is feasible. Having time dedicated to spirituality and the ongoing mentorship of spiritual care professionals were suggested as key elements. The next step is increasing awareness of spirituality from our hospital reality and creating a stable competent group (with nurses, chaplains, nuns, counselors, etc.) with the support of the management.

Role of emotions in the clinical decision-making process of the hospital nurse: A multicentre qualitative study.

While for a long-time emotional reaction and moral distress, have been primarily investigated for the possible outcomes of the nursing decision-making process rather than in terms of their role as antecedents of the final decision taken. The primary study's aim is to explore how inpatient nurses' decision-making takes place in different care settings, with a special focus on the role played by emotions during decision-making. The secondary aim is to explore the subjective experience of hospital nurses in relation to successful and unsuccessful decision-making situations. Multicentre qualitative study, consisting of three phases with different designs: participatory study, grounded theory study, and phenomenological study. Participants will be nurses and may be doctors with various levels of professional experience working in hospital, outpatient, or ward settings. Participants will be recruited through different sampling (purposive and convenience). Data will be collected through focus groups and in-depth interviews with nurses working in different hospital care settings. The researchers expect to find themes that will contribute to a better understanding of the role of emotions in decision-making. The results of this study have the potential of providing important implications to support nurses in the recognition and management of their emotions during the decision-making process.

Exploring general practitioners' decision-making in the management of women with uncomplicated urinary tract infections: a qualitative study.

BACKGROUND: To be effective, interventions aiming at increasing the appropriateness of antibiotic use in primary care should consider the perspectives of prescribing physicians. AIM: To explore the decision-making of general practitioners (GPs) when managing uncomplicated urinary tract infections (uUTIs) in women. DESIGN & SETTING: Semi-structured interviews with 22 GPs in Bavaria and Baden-Wurttemberg (southern Germany). METHOD: Verbatim transcripts analysed through inductive qualitative content analysis. RESULTS: We generated three main themes: factors facilitating the decision-making, factors complicating the decision-making, and consultation modalities. According to participants, following evidence-based recommendations makes the prescription decision smoother. GPs' and patients' prior experiences and beliefs guides decisions towards certain antibiotics, even if those experiences and beliefs contradict evidence-based recommendations. Patient expectations and demands also conditions antibiotic prescribing, favouring it. Organisational constraints like time pressure, the day of the week (eg, before weekends) and a lower cost of antibiotics for patients than alternative treatments favour the decision to prescribe antibiotics. Diagnostic and prognostic uncertainty complicates decision-making, as does scepticism towards evidence-based recommendations. Discordance within the patient-doctor relationship contributed to this complexity. Regarding consultation modalities, a more in-depth consultation, and shared decision-making were seen as helpful in this process. CONCLUSION: We identified different factors as intervening against or for a straightforward management decision when dealing with women with uUTIs. They reveal the complexity behind the GPs' decision-making. Providing GPs with easy-to-apply guidance while removing economic constraints to allocate sufficient consultation time, and supporting shared decision-making may help GPs appropriately manage uUTIs in women.

Effectiveness of patients' involvement in a medical and nursing pain education programme: a protocol for an open-label randomised controlled trial including qualitative data.

INTRODUCTION: Pain is a multidimensional experience that varies among individuals and has a significant impact on their health. A biopsychosocial approach is recommended for effective pain management; however, health professionals' education is weak on this issue. Patient involvement is a promising didactic methodology in developing a more holistic perspective, however there is a lack of reliable evidence on this topic. The aim of the present study is to evaluate the effectiveness of patient involvement in pain education in undergraduate medicine and nursing students. METHODS AND ANALYSIS: An open-label randomised controlled trial including qualitative data will be conducted. After an introductory lesson, each student will be randomly assigned to the intervention group, which includes an educational session conducted by a patient-partner along with an educator, or to the control group in which the session is exclusively conducted by an educator. Both sessions will be carried out according to the Case-Based Learning approach. Primary outcomes will be students' knowledge, attitudes, opinions and beliefs about pain management, whereas the secondary outcome will be students' satisfaction. The Pain Knowledge and Attitudes (PAK) and Chronic Pain Myth Scale (CPMS) will be administered preintervention and postintervention to measure primary outcomes. Students' satisfaction will be measured by a questionnaire at the end of the session. Two focus groups will be conducted to evaluate non-quantifiable aspects of learning. ETHICS AND DISSEMINATION: The protocol of this study was approved by the independent Area Vasta Emilia Nord ethics committee.Adherence to The Declaration of Helsinki and Good Clinical Practice will ensure that the rights, safety and well-being of the participants in the study are safeguarded, as well as data reliability. The results will be disseminated through scientific publications and used to improve the educational offer. A version of the anonymised data set will be released for public access. TRIAL REGISTRATION: Trial was not registered on ClinicalTrials.gov as the interventions being compared only concern educational programmes and the outcomes considered do not refer to any clinical dimension.

Defining a balance by compromising with fear: A grounded theory study on returning to eating after a total gastrectomy.

OBJECTIVES: Gastric cancer patients undergoing total gastrectomy face nutrition-related complications and worsening quality of life after surgery. In this context, gastrectomized cancer patients are required to cope with new conditions. Little is known about their accommodating feeding to the new life condition as a negotiated process among stakeholders in real contexts. This study aimed to investigate the shaping of this process as influenced by the perspectives of patients, health-care professionals (HPs), and caregivers (CGs). METHODS: A constructivist grounded theory study, through semi-structured interviews and interpretative coding, was designed to answer the following research question: "what is the process of returning to eating and feeding after a gastrectomy?" RESULTS: The final sample included 18 participants. "Defining a balance by compromising with fear" is the core category explaining returning to eating as a process negotiated by all actors involved, with patients trying to find a feeding balance through a multi-layer compromise: with the information received by HPs, the proprioception drastically altered by gastric resection, new dietary habits to accept, and complex and often minimized conviviality. This process involves 4 main conceptual phases: relying on the doctors' advice, perceptive realignment, rearranging food intake, and food-regulated social interaction. Those categories are also shaped by the fear of being unwell from eating and the constant fear of tumor relapse. SIGNIFICANCE OF RESULTS: Multiple actors can meet patients' and their CGs' nutritional, care, and psychosocial needs. A multidisciplinary approach involving nutritionists, psychologists, occupational therapists, social workers, and anthropologists can be key to effectively managing these patients' survivorship care. We suggest training all the professionals on the first level of nutritional counseling.

Caregivers' burden and deep brain stimulation for Parkinson disease: A systematic review of qualitative studies.

BACKGROUND AND PURPOSE: The impact of subthalamic nucleus deep brain stimulation (STN-DBS) on caregivers' burden is understudied. We perform a systematic review and meta-synthesis aggregating qualitative studies involving partners of people with Parkinson disease (PwP) to explore their experiences and unmet needs. METHODS: A systematic review for retrieving qualitative studies included six databases: MEDLINE, Embase, CINAHL, Cochrane, PsycInfo, and Scopus. Inclusion criteria were as follows: (i) studies on the experience of caregivers of PwP in the context of STN-DBS, (ii) English peer-reviewed articles, and (iii) qualitative or mixed methods studies reporting caregivers' quotations. After the appraisal of included studies, we performed meta-synthesis of qualitative findings. Descriptive themes and conceptual elements related to PwP partners' experiences and unmet needs were generated. RESULTS: A total of 1108 articles were screened, and nine articles were included. Three categories were identified: (i) dealing with Parkinson disease (PD) every day (the starting situation characterized by the impact of PD on ordinary life; the limitations to partners' socialization; partners' efforts in stepping aside for love and care activities), (ii) facing life changes with STN-DBS (the feeling of being unprepared for changes; the fear and concern due to loved ones' behavioral changes; struggling to find an explanation for those changes), and (iii) rebuilding the role of caregiver and partner after STN-DBS. CONCLUSIONS: This meta-synthesis elucidates concerns, challenges, and unmet needs of partners of PwP who underwent STN-DBS. It is important to provide them with information, education, and adequate support to face these challenges. Professionals need to involve partners in the care and decision process, because STN-DBS-related outcomes do not depend solely on the well-being of PwP but also on the well-being of individuals surrounding them.

User appraisal of a booklet for advance care planning in multiple sclerosis: a multicenter, qualitative Italian study.

OBJECTIVES: Implementation of advance care planning (ACP) in people with progressive multiple sclerosis (PwPMS) is limited. We aimed to involve users (PwPMS, significant others, and healthcare professionals involved in PwPMS care) in the evaluation and refinement of a booklet to be used during the ACP conversations. METHODS: This qualitative study consisted of cognitive interviews with PwPMS and significant others and a focus group with healthcare professionals from three Italian centers. We analyzed the interviews using the framework method and the focus group using thematic analysis. RESULTS: We interviewed 10 PwPMS (3 women; median age 54 years; median Expanded Disability Status Scale score 6.0) and three significant others (2 women; 2 spouses and one daughter). The analysis yielded three themes: booklet comprehensibility and clarity, content acceptability and emotional impact, and suggestions for improvement. Twelve healthcare professionals (7 neurologists, 3 psychologists, one nurse, and one physiotherapist) participated in the focus group, whose analysis identified two themes: booklet's content importance and clarity and challenges to ACP implementation. Based on analysis results, we revised the booklet (text, layout, and pictures) and held a second-round interviews with two PwPMS and one significant other. The interviewees agreed on the revisions but reaffirmed their difficulty in dealing with the topic and the need for a physician when using the booklet. CONCLUSIONS: Appraisal of the booklet was instrumental in improving its acceptability and understandability before using it in the ConCure-SM feasibility trial. Furthermore, our data reveal a lack of familiarity with ACP practice in the Italian context.

Hospice Patients' End-of-Life Dreams and Visions: A Systematic Review of Qualitative Studies.

When conscious, about 50% to 60% of hospice patients report a "visitation" by someone who is not there while they dream or are awake: a phenomenon known as End-of-Life Dreams and Visions (ELDVs). Since the dying process is frequently complicated by delirium, ELDVs risk being misidentified as such by professionals and caregivers. To observe these phenomena from patients' perspectives, we conducted a systematic review to aggregate and synthesize the findings from the qualitative studies about ELDVs of patients assisted in hospices to indicate future directions for research and care. MEDLINE/PubMed, Embase, CINAHL, PsycINFO, Scopus, and Web of Science databases were searched, yielding 293 documents after duplicates were removed. Six qualitative articles reporting on five unique studies conducted in hospice settings were included in the meta-synthesis. We generated three main categories: i) typologies of ELDVs reported, ii) emotional consequences, and iii) intersubjective meaning-making. The ELDVs reported were experiences that remained intimate and unsocialized and thus preventing participants from defining a shared sense in their relationships. Training healthcare professionals to recognize ELDVs and take advantage of them in the care relationship is desirable. We also encourage the patient's family members to listen and understand ELDVs when they occur actively. For caregivers to know how to interpret these phenomena may provide them with additional strategies for supporting, reassuring, and strengthening their relationships with their loved ones. The review allowed us to inform healthcare professionals and caregivers about how to help patients share their emotional and identity-related experiences and meaning-making in end-of-life.

"Somewhere Between an Actual Disease and a Disease": A Grounded Theory Study on Diagnosing Functional Neurological Disorders From a Multi-Informant Perspective.

Functional Neurological Disorders are characterized by sensory-motor or cognitive symptoms. Recent research has revealed their complex nature involving biological, psychological, and social factors. Care requires a multidisciplinary approach, which, to date, has yet to be considered. A Constructivist Grounded Theory study was conducted to understand the reasons behind this, exploring Functional Neurological Disorders diagnosis, communication, and understanding from multiple perspectives (patients and healthcare professionals). The core category was "negotiating Functional Neurological Disorders meanings and care amid a dissatisfying dichotomy," with sub-categories: i) seeking to "word" the disease, ii) exposing reductionism, and iii) a pluralist vision emerging. Diagnosing and communicating Functional Neurological Disorders is a process of negotiating meanings and care that hinges on participants' diverse ontological perspectives regarding the condition. Results highlight the difficulty in finding common ground and achieving mutual understanding among the various viewpoints, creating a challenge in establishing a unified approach to Functional Neurological Disorders care. In this context, only a few healthcare professionals emphasized the potential benefits of increased integration. A shift is required from a reductionist to an integrated biopsychosocial perspective to develop a more cohesive approach. Defining a medical paradigm through dialogue with teams and patients is essential in addressing Functional Neurological Disorders effectively. Furthermore, the required interdisciplinary approach holds the potential to mitigate the dissatisfaction arising from fragmented and compartmentalized care (the "dissatisfying dichotomy") experienced by our participants. It signifies a comprehensive strategy that could address the concerns of all involved parties and enhance the overall quality of care provided.

Patient-reported outcome measure to implement routine assessment of cancer survivors' unmet needs: An overview of reviews and COSMIN analysis.

As the number of cancer survivors (CSs) is increasing worldwide, providing services relevant to the specific, unmet needs of these individuals is crucial. There are currently various patient-reported outcome measures (PROMs) whose aim is to identify the unmet needs of CSs. Still, limited guidance supports healthcare providers in choosing the most valid and reliable PROMs for this purpose. We conducted this overview of systematic reviews (SRs) on the psychometric properties of PROMs addressing the unmet needs of adult CSs suffering from non-cutaneous cancers. We searched databases for SRs published between 2012 and January 2023. Two SRs were included, covering 14 PROMs tested on 19,151 CSs. These were assessed according to the COSMIN methodology for SRs of PROMs for the quality of their measurement properties and risk of bias, thus providing guidance in selecting PROMs that appropriately reflect the unmet needs of CSs.

Surviving cancer following total laryngectomy: a phenomenological study.

PURPOSE: Total laryngectomy followed by radiotherapy is a life-preserving treatment for patients with locally advanced laryngeal cancer. This study explored how persons who had undergone total laryngectomy perceived themselves as cancer survivors in the follow-up phase. METHODS: A descriptive phenomenological approach was adopted. We employed a purposive sampling strategy to collect data through interviews at the otorhinolaryngology outpatient clinics of two research hospitals in northern Italy. The interviews were transcribed verbatim and analysed, following the seven analytical steps of Colaizzi's descriptive analysis. RESULTS: The final sample included 19 patients. The following main themes were identified: (i) accepting a life with the "without" to survive; (ii) feeling unpleasant emotions; (iii) getting the hang of communication again; and (iv) reclaiming one's role. Together, they highlight the lived experiences of laryngectomised patients during the follow-up phase and how they perceived themselves as cancer survivors. CONCLUSION: Laryngectomised patients are a uniquely vulnerable population. This study provides insights into how surgical procedures change and affect their lives over time to improve care models, patient education, and support systems. Survivors must be adequately prepared to transition from treatment and return to the community. This preparation should begin before treatment is started. Functional education, accurate information, and psychological support must be arranged and provided before surgery. Regarding the post-treatment phase, it is essential to support voice rehabilitation and peer support, and improve the family network, to ensure these patients' reintegration into society and social recognition.

Insights into Healthcare Professionals' Perceptions and Attitudes toward Nanotechnological Device Application: What Is the Current Situation in Glioblastoma Research?

Nanotechnology application in cancer treatment is promising and is likely to quickly spread worldwide in the near future. To date, most scientific studies on nanomaterial development have focused on deepening the attitudes of end users and experts, leaving clinical practice implications unexplored. Neuro-oncology might be a promising field for the application of nanotechnologies, especially for malignant brain tumors with a low-survival rate such as glioblastoma (GBM). As to improving patients' quality of life and life expectancy, innovative treatments are worth being explored. Indeed, it is important to explore clinicians' intention to use experimental technologies in clinical practice. In the present study, we conducted an exploratory review of the literature about healthcare workers' knowledge and personal opinions toward nanomedicine. Our search (i) gives evidence for disagreement between self-reported and factual knowledge about nanomedicine and (ii) suggests the internet and television as main sources of information about current trends in nanomedicine applications, over scientific journals and formal education. Current models of risk assessment suggest time-saving cognitive and affective shortcuts, i.e., heuristics support both laypeople and experts in the decision-making process under uncertainty, whereas they might be a source of error. Whether the knowledge is poor, heuristics are more likely to occur and thus clinicians' opinions and perspectives toward new technologies might be biased.

The patient involvement in nursing education: A mixed-methods systematic review.

OBJECTIVE: To evaluate the effects patient involvement in nursing education has on students, patients and academic staff using a specific theoretical framework. DESIGN: Mixed-methods systematic review based on Joanna Briggs Institute methodology (Prospero no. CRD42022327158). DATA SOURCES: Seven databases (PubMed, Cochrane Library, Cinahl, PsychINFO, Scopus, ERIC, Embase), Google Scholar and reference lists were searched. REVIEW METHODS: Qualitative, quantitative and mixed-method studies published from 2012 to 2022 were included. Two reviewers independently assessed the studies for eligibility and quality; any disagreement was discussed with a third reviewer. Data were extracted and analysed according to the Joanna Briggs Institute converged integrated approach. RESULTS: Twenty-one qualitative, one quantitative and five mixed-methods studies met the inclusion criteria. Data were provided from three points of view: students, patients and academic staff. Student integrated findings included: (i) students' reactions towards patient involvement in education; (ii) students' views on the learning process and (iii) on ethical issue. From the patient point of view, the integrated findings addressed (i) patients' goals and effects on students' learning; (ii) how patients teach and get involved with students; (iii) how patients perceived their role; the patients' views on facilitators (iv) and barriers (v) in education; (vi) the perceived effects of being involved in education. Four integrated findings were derived from the academic staff's point of view: (i) academics' perceptions on patient vulnerability; (ii) perceived barriers to the efficacy of patient involvement in education; (iii) effects of patient involvement in nursing education; and (iv) methodological aspects of patient involvement in university curriculum. CONCLUSIONS: This systematic review provides useful information from all stakeholders' perspectives on the effects of patient involvement in nursing education. It offers a broader view of the implications for implementation and for developing theoretical frameworks and hypotheses for future research.

A qualitative study with Italian patients exploring the spiritual dimension during a chronic disease.

BACKGROUND: Spirituality is a vast dimension influenced by cultural and personal differences. Little is known about the spirituality of patients suffering from a chronic disease in Italy from palliative care hospital settings. AIM: To investigate patients' perspectives about their spirituality during their illness. METHOD: The research question was: 'How does living with chronic disease inform/shape the spiritual dimension of patients?'. To address it, we conducted a qualitative interview study with thematic analysis. RESULTS: We enrolled 21 participants among patients suffering from rheumatic, haematologic, neurodegenerative and respiratory chronic diseases. Participants generally had great difficulty answering the questions researchers posed and often could not define 'spirituality'. We found different topics grouped under four main themes: definition of spirituality, internal dialogue, expression of spirituality in everyday life and take stock. Religion is not reported as an answer to spiritual suffering, even in a country that is felt religious-driven like Italy. DISCUSSION: Patients are generally not cognizant of this dimension even living with a chronic disease; consequently, they cannot express spiritual needs because they can't recognise them. Health professionals should identify this dimension and its characteristics to recognise potential spiritual suffering.

'Now I can train myself to be with death': a phenomenological study with young doctors in care homes supported by a palliative care unit during the second wave of the pandemic in Italy.

OBJECTIVE: During the second wave of the COVID-19 pandemic, one of the organisational strategies established by the Italian National Health System was the special units for continuity of care (SUCCs). In the province of Ravenna, those units enrolled novice doctors to care for elderly patients with COVID-19 in care homes (CHs). The local palliative care (PC) unit decided to offer consultations and support to them. This study aimed to comprehend the experience of young doctors who asked for consultations when facing, during their first early years of practice, complex situations. DESIGN: We conducted a qualitative study employing a phenomenological approach and in-depth interviews. PARTICIPANTS: We involved 10 young doctors who worked in Italian SUCC during the pandemic and used a PC consultation support service. RESULTS: What describes our participants' experience is related to four main themes: (1) reducing distances, (2) perceiving medical futility and improvising, (3) being supported to learn how to be with death and (4) narrowed timing to humanise care. The pandemic was, for our participants, a moment of reflection and critique on the skills acquired during the university course. It was a strong experience of human and professional growth that helped them reshape and deepen their role and skills, incorporating the approach of PC into their professional identity. CONCLUSIONS: Integration between specialists and young doctors with an early entry into the workforce during the pandemic in CHs set out a 'shift' to a proactive and creative approach through a new awareness of professional and personal roles in doctor-patient relations. The continuity of care models should be rethought by integrating CHs and PC. Adequate PC training for young doctors (at pregraduate and postgraduate levels) can change doctors' vision and daily practice in assisting patients at the end of life.

Evaluating a clinical ethics committee (CEC) implementation process in an oncological research hospital: protocol for a process evaluation study using normalisation process theory (EvaCEC).

INTRODUCTION: A Clinical Ethics Committee (CEC) is a multi-professional service whose aim is to support healthcare professionals (HPs) and healthcare organisations to deal with the ethical issues of clinical practice.Although CEC are quite common worldwide, their successful implementation in a hospital setting presents many challenges.EVAluating a Clinical Ethics Committee implementation process (EvaCEC) will evaluate the implementation of a CEC in a comprehensive cancer centre in Northern Italy 16 months after its establishment. METHODS AND ANALYSIS: EvaCEC is a mixed-method study with a retrospective quantitative analysis and a prospective qualitative evaluation by a range of data collection tools to enable the triangulation of data sources and analysis. Quantitative data related to the amount of CEC activities will be collected using the CEC's internal databases. Data on the level of knowledge, use and perception of the CEC will be collected through a survey with closed-ended questions disseminated among all the HPs employed at the healthcare centre. Data will be analysed with descriptive statistics.The Normalisation Process Theory (NPT) will be used for the qualitative evaluation to determine whether and how the CEC can be successfully integrated into clinical practice. We will perform one-to-one semistructured interviews and a second online survey with different groups of stakeholders who had different roles in the implementation process of the CEC. Based on NPT concepts, the interviews and the survey will assess the acceptability of the CEC within the local context and needs and expectations to further develop the service. ETHICS AND DISSEMINATION: The protocol has been approved by the local ethics committee. The project is co-chaired by a PhD candidate and by a healthcare researcher with a doctorate in bioethics and expertise in research. Findings will be disseminated widely through peer-reviewed publications, conferences and workshops. TRIAL REGISTRATION NUMBER: NCT05466292.

Being a technician during COVID-19: a qualitative cross-sectional survey on the experiences of clinical neurophysiology technicians.

BACKGROUND: During the Sars-CoV-2 virus pandemic, Italy faced an unrivaled health emergency. Its impact has been significant on the hospital system and personnel. Clinical neurophysiology technicians played a central role (but less visibly so compared to other healthcare workers) in managing the COVID-19 pandemic. This research aims to explore the experiences of clinical neurophysiology technicians during the pandemic and contribute to the debate on the well-being of healthcare workers on the front line. METHODS: We implemented a cross-sectional survey across Italy. It contained questions that were open-ended for participants to develop their answers and acquire a fuller perspective. The responses were analyzed according to the framework method. RESULTS: One hundred and thirty-one responses were valid, and the following themes were generated: technicians' experiences in their relationship with patients, technicians' relationship with their workgroup and directors, and technicians' relationship with the context outside of their work. The first theme included sub-themes: fear of infection, empathy, difficulty, a sense of obligation and responsibility, anger, and sadness. The second theme contained selfishness/solidarity in the workgroup, lack of protection/collaboration from superiors, stress, and distrust. The last theme included fear, stress/tiredness, serenity, sadness, and anger. CONCLUSION: This study contributes to building a humanized perspective for personnel management, bringing attention to the technical work of healthcare professionals in an emergency and the emotional and relational dimensions. These are the starting points to define proper, contextually adequate support.

Negotiating the Beginning of Care: A Grounded Theory Study of Health Services for Amyotrophic Lateral Sclerosis.

A range of professional figures are needed to preserve the quality of life of people with amyotrophic lateral sclerosis. This study aimed to explore the beginning of the care process as negotiated by people with amyotrophic lateral sclerosis, their caregivers, and healthcare professionals. We designed the study according to the constructivist Grounded Theory method, collecting data through open-ended, semi-structured interviews, employing theoretical sampling and constant comparison, and performing conceptual coding as data analysis. By naming the core category "off-beat interfacing", we were able to show how the demands of the professionals concerned did not correspond to the ability of people with ALS and their proxies to process information, deal with requests, and be at ease in making decisions at the beginning of the shared care pathway. Three categories were generated: (i) navigating different paths, (ii) offering and experiencing a standard, non-personalized pathway, and (iii) anticipating decisions. The network of services must be organized according to guidelines, but must also contemplate a patient-family-centered approach that permits more personalized assistance.