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Background Policy‐makers and health research funders increasingly require researchers to demonstrate that they have involved patients in the design and conduct of research. However, the extent to which patients and public have the power to get involved on an equal footing is dependent on their economic, cultural, social and symbolic capital. Objective To explore power relations in patient and public involvement (PPI) in research, particularly how patients may wield symbolic capital to develop a more equal relationship. Methods Narrative interviews with a maximum variation sample of 38 people involved as patients, carers or public in health research, analysed thematically. Findings Symbolic capital may be demonstrated in a range of ways (sometimes alongside or in the absence of other forms of capital): illness experience, technical illness knowledge and the challenging outsider. Symbolic capital is unstable and dependent on others for recognition and legitimacy. Nonetheless, participants identify a gradual shift in power relations over time. Discussion and conclusions Research into PPI has been conceptually and theoretically poor, limiting our understanding of its mechanisms and wider contextual elements. Our findings demonstrate the importance of reflecting on the forms of power and capital wielded by the health research community, and of acknowledging the way in which PPI is challenging the status quo. As one of the first papers to conceptualize how different forms of symbolic capital operate and their critical role in challenging the balance of power, our findings may help researchers better plan their PPI activities and reflect on their own power.

Strategies for Collaborating With Children: Creating Partnerships in Occupational Therapy and Research applies client-centered and strengths-based theories to pediatric practice. The text is organized using a research-based conceptual model of collaboration. Within this text, there are detailed descriptions of how to engage and work with children aged 3 to 12 years, from the beginning to the end of therapy. Dr. Clare Curtin covers a variety of topics, such as how to interview children, involve them in defining the purpose of therapy, and develop self-advocacy. Similarly presented is the therapist's role as a guide in setting respectful limits, teaching self-regulation, avoiding power struggles, and co-creating educational experiences that are challenging and fun. Strategies for Collaborating With Children: Creating Partnerships in Occupational Therapy and Research advocates for children's rights and participation in therapy and research. The United Nations Convention on the Rights of the Child, the new sociology of childhood, and childhood studies are discussed. Also included are children's perspectives on what therapists should know and what children said they might be thinking at each stage of therapy. The last chapter focuses on methods to enhance children's participation in research, including adaptations for children with disabilities. Unique features: Describes a new research-based model of collaboration with children Incorporates children's views and knowledge about therapy Illustrates the use of client-centered and strengths-based theories as well as child-friendly approaches within pediatric practice Provides over 1,600 practical strategies that are exemplified by stories with actual dialogue Describes ways to involve children throughout the research process Identifies verbal, visual, and activity-based participatory research methods for eliciting children's voices, including creative ways to involve children with different levels of abilities Includes review questions at the end of each chapter Instructors in educational settings can visit www.efacultylounge.com for additional material to be used for teaching in the classroom. Strategies for Collaborating With Children: Creating Partnerships in Occupational Therapy and Research delivers a comprehensive resource for collaborating with children for the occupational therapist, occupational therapy assistant, or any other practitioner working with children in a therapeutic setting.

Background Although some healthcare providers remain hesitant, family presence, defined as the presence of patients’ family members during resuscitation and/or invasive procedures, is becoming an accepted practice. Evidence indicates that family presence is beneficial to patients and their families. Objectives To describe and compare the beliefs about and attitudes toward family presence of clinicians, patients’ families, and patients. Methods Clinicians, patients’ families, and patients in the emergency department and adult and neonatal intensive care units of a 300-bed urban academic hospital were surveyed. Results Surveys were completed by 202 clinicians, 72 family members, and 62 patients. Clinicians had positive attitudes toward family presence but had concerns about safety, the emotional responses of the family members, and performance anxiety. Nurses had more favorable attitudes toward family presence than physicians did. Patients and their families had positive attitudes toward family presence. Conclusions Family presence is beneficial to patients, patients’ families, and healthcare providers. As family presence becomes a more accepted practice, healthcare providers will need to accommodate patients’ families at the bedside and address the barriers that impede the practice.

Improved understanding of multimorbidity (MM) treatment adherence in primary health care (PHC) in Brazil is needed to achieve better healthcare and service outcomes. This study explored experiences of healthcare providers (HCP) and primary care patients (PCP) with mental-physical MM treatment adherence. Adults PCP with mental-physical MM and their primary care and community mental health care providers were recruited through maximum variation sampling from nine cities in São Paulo State, Southeast of Brazil. Experiences across quality domains of the Primary Care Assessment Tool-Brazil were explored through semi-structured in-depth interviews with 19 PCP and 62 HCP, conducted between April 2016 and April 2017. Through thematic conent analysis ten meta-themes concerning treatment adherence were developed: 1) variability and accessibility of treatment options available through PHC; 2) importance of coming to terms with a disease for treatment initation; 3) importance of person-centred communication for treatment initiation and maintenance; 4) information sources about received medication; 5) monitoring medication adherence; 6) taking medication unsafely; 7) perceived reasons for medication non-adherence; 8) most challenging health behavior change goals; 9) main motives for initiation or maintenance of treatment; 10) methods deployed to improve treatment adherence. Our analysis has advanced the understanding of complexity inherent to treatment adherence in mental-physical MM and revealed opportunities for improvement and specific solutions to effect adherence in Brazil. Our findings can inform research efforts to transform MM care through optimization.

This is a revised and expanded edition of a classic in palliative medicine, originally published in 1991, with three added chapters and a new preface summarizing our progress in the area of pain management. The obligation of physicians to relieve human suffering stretches back into antiquity. But what exactly, is suffering? One patient with cancer of the stomach, from which he knew he would shortly die, said he was not suffering. Another, someone who had been operated on for a minor problem—in little pain and not seemingly distressed—said that even coming into the hospital had been a source of pain and suffering. With such varied responses to the problem of suffering, inevitable questions arise. Is it the doctor's responsibility to treat the disease or the patient? And what is the relationship between suffering and the goals of medicine? According to the author of this book, these are crucial questions, but ones that have unfortunately remained only queries void of adequate solutions. It is time for the sick person, the author believes, to be not merely an important concern for physicians but the central focus of medicine. With this in mind, he argues for an understanding of what changes should be made in order to successfully treat the sick while alleviating suffering, and how to actually go about making these changes with the methods and training techniques firmly rooted in the doctor's relationship with the patient.

Patients who leave Emergency Department before physician's visit (LWBS) or during treatment (LDT) represent a useful indicator of the emergency care's quality. The profile of patients LWBS was described: they are generally males, young, with lower urgency triage allocation and longer waiting time. They have a greater risk of ED re-admission compared to discharged patients, but effect on hospitalization and mortality are more controversial. The aims of this study are to identify determinants and adverse short term outcomes for LWBS and LDT patients. This is a retrospective cohort study that include all ED visits of LWBS, LDT and discharged patients in 2015 in the Lazio region, Central Italy. Determinants of LWBS or LDT were selected from gender, age, citizenship, residence area, triage category, chronic comorbidities, number of uncompleted ED visit in the previous year, mode of arrival in ED, time-band, day of the week, waiting time and ED crowding, using a multi-level logistic regression. A multivariate logistic regression was used to test if LWBS or LDT have a greater risk of short term adverse outcome compared to discharged patients. The cohort consists in 835,440 visits in ED, 86.8% subjects visited and discharged, 8.9% subjects are LWBS patients and 4.3% LDT. LWBS and LDT patients are mainly young, males, with a less severe triage, with long waiting times in ED. Moreover, ED crowding and leaving ED before physician's visit in the previous year are risk factors of self-discharging. LWBS and LDT patients have a higher risk of readmission (LWBS: OR = 4.63, 95%CI 4.5-4.7; OR = 2.89, 95%CI 2.8-2.9; LDT: OR = 3.12, 95%CI 3-3.2; OR = 2.25, 95%CI2.2-2.3 for readmissions within 2 and 7 days respectively) and hospitalization (LWBS: OR = 3.65, 95%CI 3.4-3.9; OR = 2.25, 95%CI 2.1-2.4; LDT: OR = 3.96, 95%CI 3.6-4.3; OR = 2.62, 95%CI 2.4-2.8 for hospitalization within 2 and 7 days respectively). Furthermore, we find a mortality excess of risk for LWBS patients compared to the reference group (OR = 2.56, 95%CI1.6-4.2; OR = 1.7, 95%CI 1.3-2.2 within 2 and 7 days respectively). Determinants of LWBS confirmed what already known, but LDT patients should be further investigated. There could be adverse health effects for people with LWBS and LDT behaviour. This could be an issue that the Regional Health System should deal with.

\"This beautifully written book...clearly explains the application of psychological concepts and theories to health and succinctly summarises key issues.Each chapter also provides a series of vignettes capturing the kind of real-life situations health and social care professionals will encounter in their own practice and a set of.

In this book, Dreier shows how clients make therapy work in their everyday lives. Therapy cannot fulfill its purpose until the clients can make it work outside the therapy room in relation to the concerns, people, and places of their everyday lives. Research on therapy has largely ignored these efforts. Based on session transcripts and interviews with a family of four about their everyday lives, Dreier shows the extensive and varied work the clients do to make their therapy work across places. Processes of change and learning are seen in a new perspective and it is shown that expert practices depend on how persons conduct their everyday lives. To grasp this, Dreier developed a theory of persons that is based on how they conduct their lives in social practice. This theory is grounded in critical psychology and social practice theory and is also relevant for understanding other expert practices such as education.

Enhanced Recovery After Surgery (ERAS) and prehabilitation programs are evidence-based and patient-focused, yet meaningful patient input could further enhance these interventions to produce superior patient outcomes and patient experiences. We conducted a qualitative study with patients who had undergone colorectal surgery under ERAS care to determine how they prepared for surgery, their views on prehabilitation and how prehabilitation could be delivered to best meet patient needs. We conducted semistructured interviews with adult patients who had undergone colorectal surgery under ERAS care within 3 months after surgery. Patients were enrolled between April 2018 and June 2019 through purposive sampling from 1 hospital in Alberta. The interview transcripts were analyzed independently by a researcher and a trained patient-researcher using inductive thematic analysis. Twenty patients were interviewed. Three main themes were identified. First, waiting for surgery: patients described fear, anxiety, isolation and deterioration of their mental and physical states as they waited passively for surgery. Second, preparing would have been better than just waiting: patients perceived that a prehabilitation program could prepare them for their operation if it addressed their emotional and physical needs, provided personalized support, offered home strategies, involved family and included surgical expectations (both what to expect and what is expected of them). Third, partnering with patients: preoperative preparation should occur on a continuum that meets patients where they are at and in a partnership that respects patients’ expertise and desired level of engagement. We identified several patient priorities for the preoperative period. Integrating these priorities within ERAS and prehabilitative programs could improve patient satisfaction, experiences and outcomes. Actively engaging patients in their care might alleviate some of the anxiety and fear associated with waiting passively for surgery. Les protocoles de récupération optimisée après une chirurgie (ERAS, pour Enhanced Recovery After Surgery) et les programmes de préadaptation se fondent sur des données probantes et sont centrés sur les patients et pourtant, une plus grande contribution de ces derniers permettrait d’améliorer ces interventions et donneraient lieu à des résultats et des expériences plus satisfaisants pour les patients. Nous avons procédé à une étude qualitative auprès de patients ayant subi une chirurgie colorectale avec protocole ERAS afin de savoir comment ils se sont préparés à la chirurgie, quel est leur point de vue sur la préadaptation et en quoi cette dernière pourrait mieux répondre à leurs besoins. Nous avons réalisé des entrevues semi-structurées auprès de patients adultes ayant subi une chirurgie colorectale avec protocole ERAS dans les 3 mois suivant leur chirurgie. Les patients ont été inscrits dans un hôpital albertain entre avril 2018 et juin 2019 par le biais d’un échantillonnage dirigé. Les transcriptions des entrevues ont fait l’objet d’une analyse thématique inductive indépendante par une chercheuse et une patientechercheuse dûment formée. Vingt patients ont été interrogés. Trois grands thèmes ont été dégagés : 1) en attente de la chirurgie (les patients ont fait état de peur, d’anxiété, d’un sentiment d’isolement et d’une détérioration de leur état de santé mentale et physique durant l’attente passive de la chirurgie); 2) une préparation leur a semblé préférable à une simple attente (les patients ont senti qu’un programme de préadaptation les aiderait à se préparer à leur chirurgie s’il tenait compte de leurs besoins émotionnels et physiques, s’il fournissait un soutien personnalisé, des stratégies de soutien à domicile, s’il impliquait les familles et incluait une discussion sur les attentes vis-à-vis de la chirurgie); et 3) partenariat avec les patients (la préparation devrait se dérouler selon un continuum adapté à la situation de chaque patient sous la forme d’un partenariat qui respecte son expertise et son niveau d’engagement). Nous avons identifié plusieurs priorités pour les patients durant l’étape préopératoire. Intégrer ces priorités dans les protocoles ERAS et les programmes de préadaptation pourrait améliorer la satisfaction, les expériences et les résultats chez les patients. Faire participer activement les patients à leurs soins pourrait contribuer à soulager une part de l’anxiété et de la peur associées à l’attente passive de la chirurgie.

In recent years the formerly quite strong interest in patient compliance has been questioned for being too paternalistic and oriented towards overly narrow biomedical goals as the basis for treatment recommendations. In line with this there has been a shift towards using the notion of adherence to signal an increased weight for patients’ preferences and autonomy in decision making around treatments. This ‘adherence-paradigm’ thus encompasses shared decision-making as an ideal and patient perspective and autonomy as guiding goals of care. What this implies in terms of the importance that we have reason to attach to (non-)adherence and how has, however, not been explained. In this article, we explore the relationship between different forms of shared decision-making, patient autonomy and adherence. Distinguishing between dynamically and statically framed adherence we show how the version of shared decision-making advocated will have consequences for whether one should be interested in a dynamically or statically framed adherence and in what way patient adherence should be assessed. In contrast to the former compliance paradigm (where non-compliance was necessarily seen as a problem), using observations about (non-)adherence to assess the success of health care decision making and professional-patient interaction turns out to be a much less straightforward matter.