Patient and relative experiences of the ReSPECT process in the community: an interview-based study.

BACKGROUND: The Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) was launched in the UK in 2016. ReSPECT is designed to facilitate meaningful discussions between healthcare professionals, patients, and their relatives about preferences for treatment in future emergencies; however, no study has investigated patients' and relatives' experiences of ReSPECT in the community. OBJECTIVES: To explore how patients and relatives in community settings experience the ReSPECT process and engage with the completed form. METHODS: Patients who had a ReSPECT form were identified through general practice surgeries in three areas in England; either patients or their relatives (where patients lacked capacity) were recruited. Semi-structured interviews were conducted, focusing on the participants' understandings and experiences of the ReSPECT process and form. Data were analysed using inductive thematic analysis. RESULTS: Thirteen interviews took place (six with patients, four with relatives, three with patient and relative pairs). Four themes were developed: (1) ReSPECT records a patient's wishes, but is entangled in wider relationships; (2) healthcare professionals' framings of ReSPECT influence patients' and relatives' experiences; (3) patients and relatives perceive ReSPECT as a do-not-resuscitate or end-of-life form; (4) patients' and relatives' relationships with the ReSPECT form as a material object vary widely. Patients valued the opportunity to express their wishes and conceptualised ReSPECT as a process of caring for themselves and for their family members' emotional wellbeing. Participants who described their ReSPECT experiences positively said healthcare professionals clearly explained the ReSPECT process and form, allocated sufficient time for an open discussion of patients' preferences, and provided empathetic explanations of treatment recommendations. In cases where participants said healthcare professionals did not provide clear explanations or did not engage them in a conversation, experiences ranged from confusion about the form and how it would be used to lingering feelings of worry, upset, or being burdened with responsibility. CONCLUSIONS: When ReSPECT conversations involved an open discussion of patients' preferences, clear information about the ReSPECT process, and empathetic explanations of treatment recommendations, working with a healthcare professional to co-develop a record of treatment preferences and recommendations could be an empowering experience, providing patients and relatives with peace of mind.

Responding Effectively to Disruptive Patient Behaviors: Beyond Behavior Contracts.

This Viewpoint discusses the use of behavior contracts with patients in response to increasing workplace violence in health care, and highlights the importance of building the evidence base for approaches to dealing with violent behaviors that are effective and just.

Distender o tempo e alinhavar o cuidado: o bordado inventado e a tecnologia da palavra / Stretching time and basting care: the invented embroidery and the word technology / Estirar el tiempo y hilvanar el cuidado: elbordado inventado y la tecnología de palabra

O projeto de pesquisa-intervenção As narrativas ficcionais e o cuidado à dor crônica atuou no Setor de Dor e Cuidados Paliativos de um hospital público, oferecendo-se como coadjuvante do cuidado em saúde. O Ateliê Jardim de Histórias foi um de seus dispositivos e propôs o bordado inventado como linhas de sustentação para um fazer compartilhado. No contexto latinoamericano, o bordar remete à transmissão transgeracional e a práticas políticas e processos de luta e luto no laço social. Este artigo propõe recuperar a história do bordado para além da perspectiva colonial e, a partir disso, a-bordar essa experiência da pesquisa-intervenção no hospital e suas possibilidades. Entende-se que o bordado inventado ressalta a dimensão de improviso e de criatividade dessa prática enquanto um suporte afetivo para a tessitura de narrativas, a partir da disposição de estar com o outro em torno de um fazer sem prescrições. (AU)

The research-intervention project Fictional narratives and chronic pain careacted in the Sector of Pain and Palliative Care of a public hospital, offering an adjunct to health care. The Garden of Stories Atelierwas one of its devices, which proposed the invented embroidery as threads of support for a shared work. In Latin America, embroidery refers to transgenerational transmission, and to political practices and processes of struggle and mourning in the social bond. This article aims to retrieve the history of embroidery beyond the colonial perspective and, from there, to approach this experience of research-intervention in the hospital and its possibilities. The invented embroidery is thought to emphasize the dimension of improvisation and creativity of this practice, as an affective support for the weaving of narratives, from the willingness to be together around an activity without prescriptions. (AU)

El proyecto de investigación-intervención Narrativas ficcionales y el cuidado al dolor crónicofuncionó en el Sector de Dolor y Cuidados Paliativos de un hospital público, ofreciéndose como complemento al cuidado en salud. El Taller Jardín de Historiasfue uno de sus dispositivos y propuso el bordado inventado como líneas de apoyo para una acción compartida. En latinoamerica, el bordado remite a la transmisión transgeneracional y a prácticas políticas y procesos de lucha y luto en el lazo social. Este artículo se propone recuperar la historia del bordado más allá de la perspectiva colonial y, desde allí, abordar esta experiencia de investigación-intervención en el hospital y sus posibilidades. Se entiende que el bordado inventado enfatiza la dimensión deimprovisación y creatividad de esta práctica como soporte afectivo para el tejido de narrativas, desde la voluntad de estar con el otro en torno a un hacer sin recetas. (AU)

Supporting primary care through symptom checking artificial intelligence: a study of patient and physician attitudes in Italian general practice.

BACKGROUND: Rapid advancements in artificial intelligence (AI) have led to the adoption of AI-driven symptom checkers in primary care. This study aimed to evaluate both patients' and physicians' attitudes towards these tools in Italian general practice settings, focusing on their perceived utility, user satisfaction, and potential challenges. METHODS: This feasibility study involved ten general practitioners (GPs) and patients visiting GP offices. The patients used a chatbot-based symptom checker before their medical visit and conducted anamnestic screening for COVID-19 and a medical history algorithm concerning the current medical problem. The entered data were forwarded to the GP as medical history aid. After the medical visit, both physicians and patients evaluated their respective symptoms. Additionally, physicians performed a final overall evaluation of the symptom checker after the conclusion of the practice phase. RESULTS: Most patients did not use symptom checkers. Overall, 49% of patients and 27% of physicians reported being rather or very satisfied with the symptom checker. The most frequent patient-reported reasons for satisfaction were ease of use, precise and comprehensive questions, perceived time-saving potential, and encouragement of self-reflection. Every other patient would consider at-home use of the symptom checker for the first appraisal of health problems to save time, reduce unnecessary visits, and/or as an aid for the physician. Patients' attitudes towards the symptom checker were not significantly associated with age, sex, or level of education. Most patients (75%) and physicians (84%) indicated that the symptom checker had no effect on the duration of the medical visit. Only a few participants found the use of the symptom checker to be disruptive to the medical visit or its quality. CONCLUSIONS: The findings suggest a positive reception of the symptom checker, albeit with differing focus between patients and physicians. With the potential to be integrated further into primary care, these tools require meticulous clinical guidance to maximize their benefits. TRIAL REGISTRATION: The study was not registered, as it did not include direct medical intervention on human participants.

Current treatment options for cluster headache: limitations and the unmet need for better and specific treatments-a consensus article.

AIM: Treatment for cluster headache is currently based on a trial-and-error approach. The available preventive treatment is unspecific and based on few and small studies not adhering to modern standards. Therefore, the authors collaborated to discuss acute and preventive treatment in cluster headache, addressing the unmet need of safe and tolerable preventive medication from the perspectives of people with cluster headache and society, headache specialist and cardiologist. FINDINGS: The impact of cluster headache on personal life is substantial. Mean annual direct and indirect costs of cluster headache are more than 11,000 Euros per patient. For acute treatment, the main problems are treatment response, availability, costs and, for triptans, contraindications and the maximum use allowed. Intermediate treatment with steroids and greater occipital nerve blocks are effective but cannot be used continuously. Preventive treatment is sparsely studied and overall limited by relatively low efficacy and side effects. Neurostimulation is a relevant option for treatment-refractory chronic patients. From a cardiologist's perspective use of verapamil and triptans may be worrisome and regular follow-up is essential when using verapamil and lithium. CONCLUSION: We find that there is a great and unmet need to pursue novel and targeted preventive modalities to suppress the horrific pain attacks for people with cluster headache.

Preoperative anxiety and need for support - A qualitative analysis in 1000 patients.

OBJECTIVES: Preoperative anxiety is prevalent, emotionally distressing for many patients, and can have harmful effects on postoperative outcomes. Despite its high prevalence, there has been little research on preoperative anxiety using qualitative methods. This study's main goal was to qualitatively examine factors that may contribute to preoperative anxiety in a large sample. METHODS: In a survey, a total of 1000 patients awaiting surgery were asked open questions i) about reasons which they associate with their preoperative anxiety and ii) which coping strategies they would prefer in addition to premedication. RESULTS: The qualitative analysis indicated five overarching domains, 16 themes, and 54 subthemes of preoperative anxiety. Intra- or postoperative complications was the most common theme regarding preoperative anxiety (n = 516). Personal conversation was the most frequently desired supportive measure in addition to premedication. CONCLUSIONS: This study indicated a considerable heterogeneity of reasons associated with preoperative anxiety based on an unbiased assessment in a large sample. The study further suggests that a personal conversation is a clinically important coping strategy in addition to premedication. PRACTICE IMPLICATIONS: Providers should assess patients' preoperative anxiety and the resulting need for support individually to offer supportive measures adapted to the patients' needs.

Barriers and facilitators to integrating depression care in tuberculosis services in South Asia: a multi-country qualitative study.

BACKGROUND: Depression is common among people with tuberculosis (TB). The condition is typically unrecognised or untreated despite available and effective treatments in most low- and middle-income countries. TB services in these countries are relatively well established, offering a potential opportunity to deliver integrated depression screening and care. However, there is limited evidence on how such integration could be achieved. This study aimed to understand the barriers and facilitators to integrate depression care in TB services. METHODS: We conducted nine workshops with 76 study participants, including people with TB, their carers, and health service providers in Bangladesh, India, and Pakistan, seeking views on integrating depression care into TB clinics. We used a deductive thematic approach to analyse the translated transcripts of audio recordings, contemporaneous notes made during workshops for Bangladesh and India and workshop reports for Pakistan. Using the SURE (Supporting the Use of Research Evidence) thematic framework, we extracted and categorised barriers and facilitators into various domains. RESULTS: Reported barriers to integrating depression care in TB services included lack of knowledge about depression amongst patients and the staff, financial burden, and associated stigma for people with TB and their carers. Government buy-in and understanding of how to identify and screen for depression screening were potential facilitators reported. Additionally, breaking through mental health stigma and providing the additional resources required to deliver this service (human resources and consultation time) were essential for integrating depression and TB care. CONCLUSIONS: Depression is a common condition found among people with TB, requiring early identification among people with TB. Integrating depression care into Tb services by health workers requires the availability of political support and the provision of resources.

Experiences of patients with chronic diseases during the COVID-19 pandemic in the North West province, South Africa.

BACKGROUND: Patients with chronic diseases (PWCDs) were severely affected by the coronavirus disease 2019 (COVID-19) pandemic, as they were prevented from making the necessary visits to health facilities for medical review and to collect their medication. The emergence of the health crisis and inadequate access to quality care affected chronic care management. The perspectives of PWCDs are not known, and therefore the research on which this paper is based sought to investigate the lived experiences of these patients during the COVID-19 pandemic. METHODS: A qualitative phenomenological design was used to obtain the lived experiences of PWCDs identified for participation in the study by means of purposive sampling. Patients' experiences were obtained during individual structured interviews, and a checklist was used to gather patient characteristics from their files. RESULTS: Three themes emerged from the study findings, namely poor healthcare services, the socio-economic impact of the COVID-19 pandemic, and the psychological impact of the COVID-19 pandemic. The COVID-19 pandemic had devastating effects on PWCDs, in that they experienced barriers to accessing quality chronic care services and suffered psychological and financial difficulties that affected their health, life, needs and expectations. CONCLUSION: Policymakers should consider PWCDs when responding to a public health concern in the future.Contribution: The study findings may have an impact on future policies regulating the management of chronic diseases during epidemics, in order to improve patient health outcomes and satisfaction with healthcare services and the chronic care model based on the experiences of PWCDs.

Integrating one-to-one peer support into psycho-oncological care in Germany: multi-perspective, mixed-methods evaluation of the isPO onco-guide service.

PURPOSE: One-to-one peer supporters called isPO onco-guides (isPO OGs) are an integral part of the new German psycho-oncological form of care 'integrated, cross-sectoral Psycho-Oncology' (isPO), additionally to professional care. The isPO OGs are cancer survivors with experiential knowledge, offering information on local support services and answering questions 'all around cancer' to newly diagnosed cancer patients. We aimed to evaluate the isPO OG service from three perspectives: patients, isPO OGs, and professional service providers. METHODS: A mixed-methods approach was pursued. We conducted interviews and focus groups with the three person groups, and applied qualitative content analysis on the reported resources, processes and outcomes regarding the isPO OG service. Relations with patients' utilisation and isPO OGs' work satisfaction were identified with regression and correlation analyses of questionnaire and isPO care data. We compared isPO care networks (CN) with X2-tests or ANOVA. Qualitative and quantitative results were integrated during interpretation phase. RESULTS: Qualitatively, the three person groups agreed on the benefits of the isPO OG service. The implementation's maturity differed between the CN concerning established processes and resource availability. Attitudes of professional service providers appeared to be crucial for patients' utilisation of the isPO OG service. Quantitative results emphasised the differences between the CN. CONCLUSION: Beyond differences in the CN, the isPO OG service has two psychosocial benefits: providing relevant, reliable, and understandable information; and offering the encouraging example that surviving and living with cancer is possible. TRIAL REGISTRATION: The study was registered in the German Clinical Trials Register (No. DRKS00015326) on 30.10.2018.

COPD-Related Anxiety: A Systematic Review of Patient Perspectives.

Background: Anxiety in patients with chronic obstructive pulmonary disease (COPD) is prevalent but often unidentified and therefore not adequately managed. Clinicians find it difficult to detect anxiety symptoms and to differentiate subclinical anxiety from anxiety disorders, because of the considerable overlap between symptoms of COPD and anxiety. Purpose: We synthesized existing qualitative research on patients' experiences of COPD-related anxiety with the purpose of gaining a richer understanding and proposing a model of the construct. Methods: Searches for qualitative studies of patients' experiences of COPD-related anxiety were conducted independently by two authors in the databases of PubMed (MEDLINE), CINAHL (EBSCO), and PsycInfo (APA). English-language studies including patients diagnosed with COPD were reviewed, and data were analyzed using thematic analysis. Results: A total of 41 studies were included in the review. Four themes related to COPD-related anxiety were identified: initial events; internal maintaining factors; external maintaining factors; and behavioral maintaining factors. Based on the identified four themes, a conceptual model of COPD-related anxiety from the patient perspective was developed. Conclusion: A conceptual model of COPD-related anxiety from the patient perspective is now available, with the potential to inform future attempts at improving identification and management of COPD-related anxiety. Future research should focus on the development of a COPD-specific anxiety questionnaire containing domains that are relevant from the patient perspective.

Patient and clinician perspectives of a remote monitoring program for COVID-19 and lessons for future programs.

COVID Watch is a remote patient monitoring program implemented during the pandemic to support home dwelling patients with COVID-19. The program conferred a large survival advantage. We conducted semi-structured interviews of 85 patients and clinicians using COVID Watch to understand how to design such programs even better. Patients and clinicians found COVID Watch to be comforting and beneficial, but both groups desired more clarity about the purpose and timing of enrollment and alternatives to text-messages to adapt to patients' preferences as these may have limited engagement and enrollment among marginalized patient populations. Because inclusiveness and equity are important elements of programmatic success, future programs will need flexible and multi-channel human-to-human communication pathways for complex clinical interactions or for patients who do not desire tech-first approaches.

Patients' acceptance of explanatory models for persistent somatic symptoms: A qualitative analysis within the HERMES study.

OBJECTIVE: The aim of this qualitative study was to provide an in-depth analysis of participants' experiences with video-animated explanatory models developed within the three-arm randomized controlled HERMES study ('Helpful explanatory models for somatic symptoms') and suggestions for further intervention improvement. METHODS: Semi-structured qualitative interviews were conducted with psychosomatic outpatients with persistent somatic symptoms (PSS) after they were randomized to view one of three psychoeducational videos on a tablet computer: a) an explanatory model without personalization or b) an explanatory model with personalization in the two experimental groups or c) PSS guidelines without an explanatory model in the control group. Qualitative interviews were audiotaped, transcribed and analyzed applying thematic analysis. RESULTS: Seventy-five patients with PSS were allocated to the study arms, mean duration of interviews was 8.19 min (SD = 3.19, range 4.02-19.49 min). Although all participants gave positive feedback regardless of their allocated study arm, those in the explanatory model without and with personalization groups were especially likely to rate the psychoeducational interventions as helpful. Results highlighted previous illness course, symptom perceptions and patient characteristics as key factors related to patients' response to the video interventions and optimal personalization of the explanatory model. CONCLUSION: The present study not only demonstrated the acceptance of all three psychoeducational interventions developed within the HERMES study, but also provided valuable insights into potential key factors that may increase their impact and potential starting points for tailored psychoeducation in patients with PSS.

Nursing students' views on trauma-informed pediatric nursing care and family-centered care.

PURPOSE: We studied the views of nursing students on family-centered care (FCC) and their knowledge, opinions, self-rated competence, current practice, and perceived implementation barriers with regard to trauma-informed pediatric nursing care. METHODS: This survey was a descriptive correlational study. The sample consisted of 261 nursing students, 3rd and 4th years, who had completed the Child Health and Diseases Nursing Course. The data were obtained using the "Student Information Form," "Family-Centered Care Attitude Scale," and "trauma-informed care (TIC) Provider Survey." RESULTS: Nursing students were knowledgeable and held favorable opinions about TIC. The survey showed that students with higher levels and those with a hospitalization experience during childhood had higher scores regarding TIC. A positive relationship was found between the students' TIC to mean score and FCC attitude mean score. CONCLUSIONS: Nursing students are not competent to practice TIC, especially with pediatric patients. Therefore, they need to develop relevant skills for helping pediatric patients. PRACTICE IMPLICATIONS: Efforts to improve nursing students' trauma-informed pediatric care should highlight specific skills related to helping pediatric patients manage emotional responses to difficult medical experiences. By integrating TIC into the baccalaureate curricula, nursing educators can provide the students with appropriate skills and facilities so that they can provide holistic and highly effective care to highly vulnerable patients.

Description of patient reported experience measures (PREMs) for hospitalised patients with palliative care needs and their families, and how these map to noted areas of importance for quality care: A systematic review.

BACKGROUND: The global need for focused improvements in palliative care within the acute hospital setting is well noted. A large volume of evidence exists detailing what hospitalised patients with palliative care needs and their families note as important for high quality care. Patient Reported Experience Measures (PREMs) are one mechanism that hospitals could use to inform improvement work. To date there has not been a review of PREMs available for hospitalised patients with palliative care needs and/or their family, nor how they align with noted priorities for high quality care. AIM: To identify and describe PREMs designed for hospitalised patients with palliative care needs and their families; and their alignment with patient and family identified domains for high quality care. DESIGN: A systematic review. DATA SOURCES: A systematic search of CINAHL, Medline and PsycInfo was conducted up to September 23, 2022 and supplemented by handsearching article reference lists and internet searches. PREMs written in English and designed for patients with palliative care needs in acute hospitals were eligible for inclusion. Included PREMs were described by: summarising key characteristics; and mapping their items to domains noted to be important to hospitalised patients with palliative care needs and their families informed by outcomes from a published study completed in 2021. Evidence for psychometric properties were reviewed. RESULTS: Forty-four PREMs with 827 items were included. Items per PREM varied from 2 to 85 (median 25, IQR 13-42). Two-thirds (n = 534, 65%) of the items were designed for families and a third (n = 283, 34%) for hospitalised patients, and very few (n = 10, 1%) for both. Sixty-six percent of items measured person-centred care, 30% expert care and 4% environmental aspects of care. Available PREMs address between 1 and 11 of the 14 domains of importance for quality palliative care. PREMs had a median of 38% (IQR 25.4-56.3) of items >Grade 8 measured by the Flesch-Kincaid readability test, with Grade 8 or lower recommended to ensure health information is as accessible as possible across the population. CONCLUSIONS: Whilst 44 PREMs are available for hospitalised patients with palliative care needs or their families, a varied number of items are available for some domains of care provision that are important, compared to others. Few are suitable for people with lower levels of literacy or limited cognitive capacity due to illness.

Is the use of IVF add-on treatments driven by patients or clinics? Findings from a UK patient survey.

There are conflicting narratives over what drives demand for add-ons. We undertook an online survey of IVF patients to determine whether patients perceive that use of IVF add-ons is driven by patients or practitioners. People who underwent IVF in the UK in the previous five years were recruited via social media Survey questions focussed on the roles of clinician offer and patient request, including who first suggested use of add-ons in IVF consultations, where patients first heard about them, and which information sources they trusted. From a total of 261 responses, 224 met the inclusion criteria. Overall, 67% of respondents had used one or more IVF add-ons, most commonly: time-lapse imaging (27%), EmbryoGlue (27%), and endometrial scratching (26%). Overall, 81% of the add-ons used were offered to participants by clinicians (compared to 19% requested by themselves). Half (54%) reported being offered add-ons during consultations, compared to 24% who initiated discussion about add-ons. Higher proportions of private patients reported being offered (90%), requesting (47%) and using (74%) add-ons than those with NHS funding (74%, 29%, 52%, respectively). The main limitations of this study are the small sample size, recruitment via a convenience sample, and the self-reported data capture which is subject to recall bias.

Patients' perspectives on irritable bowel syndrome: a qualitative analysis based on social media in China.

AIM: To explore the perspectives, experience, and concerns of patients with irritable bowel syndrome (IBS) in China. METHODS: We used data mining to investigate posts shared in Baidu Tieba concerned with IBS; we collected the data through the crawler code, and mined the cleaned data's themes based on Latent Dirichlet allocation (LDA) and the Grounded theory. RESULTS: We found 5746 network posts related to IBS. LDA analysis generated 20 topics, and grounded theory analysis established eight topics. Combining the two methods, we finally arranged the topics according to five concepts: difficulty in obtaining disease information; serious psychosocial problems; dissatisfied with the treatment; lack of social support; and low quality of life. CONCLUSION: Social media research improved patient-centric understanding of patients' experiences and perceptions. Our study may facilitate doctor-patient communication and assist in the formulation of medical policies.

Does doctors' personality differ from those of patients, the highly educated and other caring professions? An observational study using two nationally representative Australian surveys.

OBJECTIVES: Personality differences between doctors and patients can affect treatment outcomes. We examine these trait disparities, as well as differences across medical specialities. DESIGN: Retrospective, observational statistical analysis of secondary data. SETTING: Data from two data sets that are nationally representative of doctors and the general population in Australia. PARTICIPANTS: We include 23 358 individuals from a representative survey of the general Australian population (with subgroups of 18 705 patients, 1261 highly educated individuals and 5814 working in caring professions) as well as 19 351 doctors from a representative survey of doctors in Australia (with subgroups of 5844 general practitioners, 1776 person-oriented specialists and 3245 technique-oriented specialists). MAIN OUTCOME MEASURES: Big Five personality traits and locus of control. Measures are standardised by gender, age and being born overseas and weighted to be representative of their population. RESULTS: Doctors are significantly more agreeable (a: standardised score -0.12, 95% CIs -0.18 to -0.06), conscientious (c: -0.27 to -0.33 to -0.20), extroverted (e: 0.11, 0.04 to 0.17) and neurotic (n: 0.14, CI 0.08 to 0.20) than the general population (a: -0.38 to -0.42 to -0.34, c: -0.96 to -1.00 to -0.91, e: -0.22 to -0.26 to -0.19, n: -1.01 to -1.03 to -0.98) or patients (a: -0.77 to -0.85 to -0.69, c: -1.27 to -1.36 to -1.19, e: -0.24 to -0.31 to -0.18, n: -0.71 to -0.76 to -0.66). Patients (-0.03 to -0.10 to 0.05) are more open than doctors (-0.30 to -0.36 to -0.23). Doctors have a significantly more external locus of control (0.06, 0.00 to 0.13) than the general population (-0.10 to -0.13 to -0.06) but do not differ from patients (-0.04 to -0.11 to 0.03). There are minor differences in personality traits among doctors with different specialities. CONCLUSIONS: Several personality traits differ between doctors, the population and patients. Awareness about differences can improve doctor-patient communication and allow patients to understand and comply with treatment recommendations.