Educational programmes for paediatric healthcare professionals in patient- and family-centred care. A scoping review.

To identify and describe educational programmes in patient- and family-centred care for paediatric healthcare professionals. This scoping review was conducted and reported according to the JBI Manual for Evidence Synthesis and the PRISMA guideline. The databases searched included MEDLINE (PubMed), PsycINFO, CINAHL, Scopus, Cochrane, and Embase. Inclusion criteria were experimental, observational and qualitative studies about educational programmes on patient- and family-centred care for paediatric healthcare professionals. Exclusion criteria were reviews and non-peer-reviewed literature. Two reviewers independently screened and extracted the data using Covidence. Of the 13922 records identified, 49 articles met the inclusion criteria. There was a large variety of educational programmes, half of which were interdisciplinary, that mainly targeted nurses and doctors. The median number of participants was 51 (range 7 to 1411). The predominant target population was children with chronic disabilities and neonatal intensive care units, and only one programme specifically targeted adolescents. The median duration was one day (range 5 min to 3.5 years). Development of competencies was the most common objective. We identified 12 different educational content areas. Content mainly focused on communication and relational competencies, including partnership, which involved shared decision-making, mutual agenda setting, and negotiation of a plan. Many kinds of educational strategies were found but experiential learning through simulation and roleplay was used most.   Conclusion: A large variety of educational programmes in paediatric patient- and family-centred care exist. Educational content mainly focused on communication and relational competencies. Experiential learning including roleplay and simulation was the most used educational strategy. What is Known: • Delivery of patient- and family-centred care improves parental satisfaction of care but requires clinicians have a certain attitude towards involving the child and parents in a healthcare partnership as well as advanced triadic communication skills. Little is known about how this attitude, and more broadly, patient- and family-centred care, can be facilitated through education and training. What is New: • This scoping review found a wide array of programmes.. Workshops with simulation or roleplay was the most frequent educational strategy. The programmes, which typically targeted nurses and doctors, chiefly focused on basic and advanced communication and relational competencies, including partnership, which involved shared decision-making and negotiation of plans.

The time for patient partnership in medical education has arrived: Critical reflection through autoethnography from a physician turned patient.

PURPOSE: This paper explores experiences of a physician who in one life-altering day awoke in intensive care and had to embark on a complex journey as full-time patient. It identifies the important literature, albeit limited, from a unique dual lens view of physician turned patient, and analyzes the potential for advancing medical education by recognizing the expertise that patients possess from lived experience. METHODOLOGY: An autoethnography study was undertaken to unpack data obtained from lived patient experience during a two-and-a-half-year long hospitalization. Themes were captured in a series of eleven scenarios. Findings included critical reflection from the patient, medical educator, and research perspectives. Data was cross-referenced with relevant literature. RESULTS: Seven themes emerged upon critical analysis of the eleven scenarios that described real-life healthcare encounters of the physician turned patient. These often-neglected themes from medical education include experiential learning, reflection, what counts as medical care, vulnerability, patient-centred care, agency, and patient expertise. CONCLUSIONS: This study highlights differences between intellectual-experiential knowledge, and challenges medical education to harness the expertise that patients possess. It contributes to scholarly discourses by demonstrating the utility of autoethnography in medical education, critiques traditional medical education models, expands the breadth of what constitutes knowledge, and invites medical educators to actively involve patients as equal stakeholders in curricula.

Enhancing new graduate nurses and midwives person-centredness through clinical supervision during COVID-19; evaluation of a non-randomized intervention study.

AIM: The aim of the study was to evaluate a person-centred model of clinical supervision to enhance person-centredness. DESIGN: Experimental, quantitative. METHODS: One hundred and three New Graduates were supported to reflect through a person-centred lens (July-December 2020). Evaluation was undertaken at 6 months using: the Manchester Clinical Supervision Scale-26 (effectiveness of supervision) and the Person-centred Practice Inventory (measures attributes of the nurse/midwife, the care environment and person-centred processes). Due to participation difficulties, scores were calculated by attendance rates using descriptive and inferential statistics. RESULTS: Regular attendees scored higher on the supervision's effectiveness; however, this did not reach efficacy. 'Finding time' to attend contributed to low scores. Supervision scored well on its supportive function when attended. Many New Graduates perceived a decline in their care environment. Attendance aside, New Graduates averaged an increased in their person-centred attributes and processes. Greater participation was found in those who scored higher at baseline on their person-centred attributes and processes, and this higher scoring continued at 6 months than those who attended less. CONCLUSION: New Graduates who perceive themselves as person-centred and reflective at baseline are more likely to attend a person-centred clinical supervision and score higher at 6 months than those who attended less often. New Graduates found support within supervision during challenging times. IMPLICATIONS FOR PRACTICE FOR PROFESSIONAL AND/OR PATIENT CARE: For successful implementation of Person-centred Clinical Supervision, New Graduates need support to attend, as attendance supports them to begin seeing value in the process. IMPACT: This intervention kept person-centred practice at the forefront of New Graduates reflection, in a time of extreme change. The research has implications for nursing and midwifery management with the imperative to deliver person-centred care and create the person-centred cultures for staff to feel supported and empowered. REPORTING METHOD: Transparent Evaluation of Non-randomized Designs (TREND). PATIENT OF PUBLIC CONTRIBUTION: No patient or public contribution. CONTRIBUTION TO WIDER COMMUNITY: New Graduates grow their person-centredness over their transitioning year; however, this can be enhanced with regular clinical supervision underpinned by person-centred theory. Clinical supervisors can provide support to New Graduates when the environment is challenged.

Nurses' practices of children and family-centered care for chronically ill children: A cross-sectional study.

PURPOSE: There is limited evidence of children and family-centered care (CFCC) practice in different cultural contexts, particularly regarding the factors that predict it among nurses providing care to chronically ill children. Also, the CFCC's impact on the quality of care has not been well studied. This study aimed to test a hypothesized model in which nurses' attributes and care environments predict CFCC, thereby increasing the quality of nursing care. DESIGN AND METHODS: A multicenter cross-sectional study recruited a convenience sample of 405 nurses caring for chronically ill children in Saudi Arabia for an online survey between February 2023 and August 2023. Structural Equation Modeling evaluated the hypothesized model. RESULTS: The hypothesized model fits the data based on the fit indices. Care environment affected CFCC (ß = 0.831, p = .000), while nursing attributes only indirectly affected CFCC practices through the mediating effect of the work environment (ß = 0.553, p = .000). The CFCC practices positively affect the quality of nursing care (ß = 0.636, p = .000). CONCLUSIONS: Nursing attributes impact the work environment, which affects the practice of CFCC and enhances the quality of care for chronically ill children. Investing in nurses' attributes and a positive work environment is crucial for nursing leaders to enhance CFCC practice and the quality of care. PRACTICAL IMPLICATIONS: The findings of this study can be used to shape policies and develop interventions to improve nursing CFCC practices and promote better quality of care for chronically ill children.

Professional burnout among expert physicians, patient-focused care, and trust in top management: Moving forward.

INTRODUCTION: Professional burnout in physicians is perceived as an inevitable occupational hazard inhibiting patient-focused care, the preferred approach of care, which enhances satisfaction of physicians with their work and improves clinical outcomes. Burnout jeopardizes the physical, mental, and emotional health of physicians, inhibiting high-quality care. Most individual-driven interventions and job-level interventions to reduce burnout proved inefficient or reduced burnout for only a short term. The potential of organizational processes to reduce burnout was acknowledged but is yet to be empirically tested. Drawing on social exchange theory, this study investigates the role of an organizational phenomenon, organizational trust among physicians in top management, on burnout. METHODS: Data were collected across specialties in 10 out of 20 Israeli public general hospitals. The sample comprised 798 senior expert physicians. Measures were all previously published. Structural equation modeling was performed. RESULTS: Response rates ranged from 17% to 77% across the 10 hospitals. Mean burnout was 4.7 (SD = 0.68), mean patient-focused care was 3.9 (SD = 0.79), and mean organizational trust was 3.7 (SD = 0.84). Mean burnout for women was 5.6 and for physicians from internal medicine was 5.5. The structural equation modeling supported the proposed study model, which explained 45% of burnout. Organizational trust reduced burnout by 14%. DISCUSSION: Efforts to reduce burnout should integrate effective individual-level and job-level interventions with building trust among physicians in top management through implementing the paramount professional value of patient-focused care. CONCLUSIONS: Perceiving management, among physicians, as facilitating the value of patient-focused care led to organizational trust in top management, which was negatively associated with burnout.

Moral learning through caring stories of nursing staff.

BACKGROUND: Implementing person-centred care (PCC) in nursing homes is challenging due to a gap between theory and practice. Bridging this gap requires suitable education, which focuses on learning how to attune care to the values and preferences of residents and take moral, relational, and situational aspects into account. Staff's stories about the care they provide (i.e. caring stories) may deliver valuable insights for learning about these aspects. However, there is limited research on using staff's narratives for moral learning. OBJECTIVE: This study aims to provide insight into the perspectives of nursing staff on using their caring stories to learn about PCC. RESEARCH DESIGN: In this qualitative research, we conducted two rounds of interviews with 17 participants working in nursing homes. We wanted to obtain nursing staff's perceptions of working with their caring stories and the impact on PCC. ETHICAL CONSIDERATIONS: Participation was voluntary, and participants provided written consent. The study protocol is approved by The Institutional Review Board of the Medical Ethical Committee Leiden-Den Haag-Delft. FINDINGS: Working with caring stories enables nursing staff to provide PCC and improves job satisfaction. It increases awareness of what matters to residents, fosters information rich in context and meaning, and enhances voice and vocabulary. Through in-depth team reflections, nursing staff discussed the significant moments for residents, which centralizes the discussions on the moral quality of care. DISCUSSION: Working with caring stories fosters dialogue on PCC and enhances reflection on ethical situations in daily encounters, contributing to the moral development of nursing staff. Putting nursing staff's narratives at the centre of learning suits their daily practice and intrinsic motivation. Therefore, the outcomes of this study are an addition to the existing literature about using narratives in long-term care. CONCLUSION: Using nursing staff's narratives contributes to PCC and positively impacts nursing staff. We recommend using staff's caring stories as a vehicle for moral learning in the transition to PCC.

The Impact of Delivery Reform on Health Information Exchange with Behavioral Health Providers: Results from a National Representative Survey of Ambulatory Physicians.

Health information exchange (HIE) is an effective way to coordinate care, but HIE between health and behavioral health providers is limited. Recent delivery reform models, including the Accountable Care Organization (ACO) and Patient Centered Medical Home (PCMH) prioritize interprofessional collaboration, but little is known about their impact on behavioral health HIE. This study explores whether delivery reform participation affects behavioral health HIE among ambulatory health providers using pooled 2015-2019 data from the National Electronic Health Record Survey, a nationally representative survey of ambulatory physicians' technology use (n = 8,703). The independent variable in this analysis was provider participation in ACO, PCMH, Hybrid ACO-PCMH, or standard care. The dependent variable was HIE with behavioral health providers. Chi square analysis estimated unweighted rates of behavioral health HIE across reform models. Logistic regression estimated the impact of delivery reform participation on rates of behavioral health HIE. Unweighted estimates indicated that Hybrid ACO-PCMH providers had the highest rates of HIE (n = 330, 33%). In the fully adjust model, rates of HIE were higher among ACO (AOR = 2.66, p < .01), PCMH (AOR = 4.73, p < .001) and Hybrid ACO-PCMH participants (AOR = 5.55, p < .001) compared to standard care, but they did not significantly vary between delivery models. Physicians infrequently engage in HIE with behavioral health providers. Compared to standard care, higher rates of HIE were found across all models of delivery reform. More work is needed to identify common elements of delivery reform models that are most effective in supporting this behavior.

A case study of the impact of a dietitian in the multi-disciplinary team within primary care: a service evaluation.

BACKGROUND: Expanding the primary care workforce to alleviate general practitioner (GP) workload, improve access and improve quality of care is a current UK strategy. Evidence suggests dietitians can improve patient outcomes and make cost savings. The present study aimed to evaluate a dietitian working as an expert generalist and first contact practitioner (FCP) in a general practice multi-disciplinary team (MDT) to provide appropriate care to patients and reduce GP workload. METHODS: A dietitian was employed for 6 months at 0.6 full-time equivalents in a group of general practices in Devon, UK. Data were collected on the referral source, patient satisfaction, health outcomes and changes in prescribing data for all patients seen by the dietitian. Focus groups and interviews provided data to understand the experience of introducing a dietitian into the team. RESULTS: This model of service delivery showed the dietitian acting as an expert generalist, a FCP and able to educate the MDT. A range of professionals within the MDT referred patients with a wide range of diagnoses (both paediatric and adults) and the dietitian acted as a FCP for 29% of patients. Saving were made for the optimisation of medicine management. CONCLUSIONS: The dietitian can improve patient-centred care for several patient groups; enhance learning for staff around nutrition and dietary issues; and contribute to more efficient working and cost savings around prescription of nutritional products. This was an evaluation of one service and further research is needed to understand the value dietitians can contribute and the factors supporting effective and efficient working in this context.

Combining Congenital Heart Surgical and Interventional Cardiology Outcome Data in a Single Database: The Development of a Patient-Centered Collaboration of the European Congenital Heart Surgeons Association (ECHSA) and the Association for European Paediatric and Congenital Cardiology (AEPC).

The European Congenital Heart Surgeons Association (ECHSA) Congenital Database (CD) is the second largest clinical pediatric and congenital cardiac surgical database in the world and the largest in Europe, where various smaller national or regional databases exist. Despite the dramatic increase in interventional cardiology procedures over recent years, only scattered national or regional databases of such procedures exist in Europe. Most importantly, no congenital cardiac database exists in the world that seamlessly combines both surgical and interventional cardiology data on an international level; therefore, the outcomes of surgical and interventional procedures performed on the same or similar patients cannot easily be tracked, assessed, and analyzed. In order to fill this important gap in our capability to gather and analyze information on our common patients, ECHSA and The Association for European Paediatric and Congenital Cardiology (AEPC) have embarked on a collaborative effort to expand the ECHSA-CD with a new module designed to capture data about interventional cardiology procedures. The purpose of this manuscript is to describe the concept, the structure, and the function of the new AEPC Interventional Cardiology Part of the ECHSA-CD, as well as the potentially valuable synergies provided by the shared interventional and surgical analyses of outcomes of patients. The new AEPC Interventional Cardiology Part of the ECHSA-CD will allow centers to have access to robust surgical and transcatheter outcome data from their own center, as well as robust national and international aggregate outcome data for benchmarking. Each contributing center or department will have access to their own data, as well as aggregate data from the AEPC Interventional Cardiology Part of the ECHSA-CD. The new AEPC Interventional Cardiology Part of the ECHSA-CD will allow cardiology centers to have access to aggregate cardiology data, just as surgical centers already have access to aggregate surgical data. Comparison of surgical and catheter interventional outcomes could potentially strengthen decision processes. A study of the wealth of information collected in the database could potentially also contribute toward improved early and late survival, as well as enhanced quality of life of patients with pediatric and/or congenital heart disease treated with surgery and interventional cardiac catheterization across Europe and the world.

Inclusion of person-centred care in UK postgraduate medical education curricula: Interviews and documentary analysis.

BACKGROUND: Person-centred care (PCC) involves placing people at the centre of their healthcare decision making to ensure it meets their needs, values, and personal circumstances. Increasingly, PCC is promoted in healthcare policy and guidance, but little is known about how this is embedded in postgraduate medical training. The aim of this research was to understand how PCC is embedded in UK postgraduate medical training and explore factors influencing inclusion of PCC in curricula content. METHODS: To explore this, we interviewed senior professionals with key roles in the curricula from four UK Royal Colleges (Psychiatrists; Physicians; Surgeons; and GPs) and used framework analysis on interviews and relevant curricula documents to identify themes. RESULTS: Legislation and professional/educational guidance influenced inclusion. PCC definitions and terminology differed and placement within curricula was variable. Royal Colleges defined the curriculum and provided training to ensure competence, but local deaneries independently implemented the curriculum. Trainer engagement was greater than trainee buy in. Quality assurance focused on feedback from trainers and trainees rather than patients, and patient and public involvement in curriculum development, teaching, and assessment was limited. CONCLUSIONS: There is a need for cross-organisation collaboration to develop a PCC competence framework that defines the skills and level of competence required at different points in training, with clarity around the differences between undergraduate and postgraduate requirements. Greater auditing and quality assurance of programme delivery would help identify successful practices to share within and across Royal Colleges, while still maintaining the flexibility of local provision. Engagement with patients and the public in this work can only strengthen provision.

Nurse Educators' Perceptions of Teaching Patient-Centered LGBTQ+ Gender-Affirming Care to Undergraduate Students.

ABSTRACT: Nurse educators are uniquely positioned to equip students with the knowledge, skills, and attitudes to provide LGBTQ+ persons with culturally congruent inclusive care. Using Quality and Safety Education for Nurses' patient-centered care competency as a framework, this study used a qualitative exploratory-descriptive design to investigate nine undergraduate nurse educators' perceptions of teaching LGBTQ+ gender-affirming care. Three themes emerged from the interviews denoting challenges: importance of patient-centered care, limited knowledge, and barriers to curricular integration. Incorporating LGBTQ+ topics across the undergraduate nursing curriculum is necessary to support the delivery of person-centered care.

[Functional disorders in primare care]. / Les troubles fonctionnels en Médecine générale.

General practitioners frequently encounter patients with functional disorders. The authors discuss the specific aspects of the management of this population in general practice, through the lens of the five functions that define this discipline. A classification of functional disorders and the analysis of prognostic factors are of great value in deciding on therapeutic strategies. The general practitioner can contribute to the disappearance of mild functional disorders by listening to the patient and by providing appropriate patient centered care. More severe situations are rarer and require a multidisciplinary approach to which the general practitioner should contribute.

Le médecin généraliste rencontre fréquemment des patients atteints de troubles fonctionnels. Les auteurs évoquent les aspects spécifiques de leur prise en charge en Médecine générale, sous le prisme des cinq fonctions qui définissent cette discipline. Une classification des troubles fonctionnels et l'analyse des facteurs de pronostic sont d'une grande utilité, pour décider des orientations thérapeutiques. Par une prise en charge adaptée, centrée sur le patient et sur son écoute, le médecin généraliste peut contribuer à la disparition des troubles fonctionnels légers. Les situations plus sévères sont plus rares. Elles nécessitent une prise en charge pluridisciplinaire à laquelle il est souhaitable que le médecin généraliste apporte sa contribution.

[Social medicine: places, collaborations, human-centered practices]. / Médecine sociale : des lieux, des collaborations, des pratiques centrées sur l'humain.

People in complex social situations are often confronted with multiple health problems related to their living conditions, pathologies, addictions and other co-morbidities. They need multi-professional support, while respecting the ethics of care, and in coordination with social partners. Various dedicated services exist, in which nurses are very present.

Optimizing the integration of family caregivers in the delivery of person-centered care: evaluation of an educational program for the healthcare workforce.

BACKGROUND: While family caregivers provide 70-90% of care for people living in the community and assist with 10-30% of the care in congregate living, most healthcare providers do not meaningfully involve family caregivers as partners in care. Recent research recommends that the healthcare workforce receive competency-based education to identify, assess, support, and partner with family caregivers across the care trajectory. OBJECTIVE: This paper reports a mixed-methods evaluation of a person-centered competency-based education program on Caregiver-Centered Care for the healthcare workforce. METHODS: This foundational education was designed for all healthcare providers and trainees who work with family caregivers and is offered free online (caregivercare.ca). Healthcare providers from five healthcare settings (primary, acute, home, supportive living, long-term care) and trainees in medicine, nursing, and allied health were recruited via email and social media. We used the Kirkpatrick-Barr health workforce training evaluation framework to evaluate the education program, measuring various healthcare providers' learner satisfaction with the content (Level 1), pre-post changes in knowledge and confidence when working with family caregivers (Level 2), and changes in behaviors in practice (Level 3). RESULTS: Participants were primarily healthcare employees (68.9%) and trainees (21.7%) and represented 5 healthcare settings. Evaluation of the first 161 learners completing the program indicated that on a 5-point Likert scale, the majority were satisfied with the overall quality of the education (Mean(M) = 4.69; SD = .60). Paired T-tests indicated that out of a score of 50, post-education changes in knowledge and confidence to work with family caregivers was significantly higher than pre-education scores (pre M = 38.90, SD = 6.90; post M = 46.60, SD = 4.10; t(150) = - 16.75, p < .0001). Qualitative results derived from open responses echoed the quantitative findings in satisfaction with the education delivery as well as improvements in learners' knowledge and confidence. CONCLUSION: Health workforce education to provide person-centered care to all family caregivers is an innovative approach to addressing the current inconsistent system of supports for family caregivers. The education program evaluated here was effective at increasing self-reported knowledge and confidence to work with family caregivers.

Making care more patient centered; experiences of healthcare professionals and patients with multimorbidity in the primary care setting.

BACKGROUND: The present study describes how primary care can be improved for patients with multimorbidity, based on the evaluation of a patient-centered care (PCC) improvement program designed to foster the eight PCC dimensions (patient preferences, information and education, access to care, physical comfort, coordination of care, continuity and transition, emotional support, and family and friends). This study characterizes the interventions implemented in practice as part of the PCC improvement program and describes the experiences of healthcare professionals and patients with the resulting PCC delivery. METHODS: This study employed a mixed-methods design. Semi-structured interviews were conducted with nine general practitioners and nurse practitioners from seven primary care practices in Noord-Brabant, the Netherlands, that participated in the program (which included interventions and workshops). The qualitative interview data were examined using thematic analysis. A longitudinal survey was conducted with 138 patients with multimorbidity from these practices to assess perceived improvements in PCC and its underlying dimensions. Paired sample t tests were performed to compare survey responses obtained at a 1-year interval corresponding to program implementation. RESULTS: The PCC improvement program is described, and themes necessary for PCC improvement according to healthcare professionals were generated [e.g. Aligning information to patients' needs and backgrounds, adapting a coaching role]. PCC experiences of patients with multimorbidity improved significantly during the year in which the PCC interventions were implemented (t = 2.66, p = 0.005). CONCLUSION: This study revealed how primary PCC can be improved for patients with multimorbidity. It emphasizes the importance of investing in PCC improvement programs to tailor care delivery to heterogenous patients with multimorbidity with diverse care needs. This study generates new perspectives on care delivery and highlights opportunities for its improvement according to the eight dimensions of PCC for patients with multimorbidity in a primary care setting.

Integrative literature review of evidence-based patient-centred care guidelines.

AIM: To summarize what facilitates patient-centred care for adult patients in acute healthcare settings from evidence-based patient-centred care guidelines. DESIGN: An integrative literature review. DATA SOURCES: The following data sources were searched between 2002-2020: Citation databases: CINAHL, Medline, Biomed Central, Academic Search Complete, Health Source: Nursing/Academic Edition and Google Scholar. Guideline databases: US National Guideline Clearinghouse, Guidelines International Network, and National Institute for Health and Clinical Excellence (NICE). Websites of guideline developers: Scottish Intercollegiate Guidelines Network, Royal College of Nurses, Registered Nurses Association of Ontario, New Zealand Guidelines Group, National Health and Medical Research Council, and Canadian Medical Association. REVIEW METHODS: Whittemore and Knafl's five-step integrative literature review: (1) identification of research problem; (2) search of the literature; (3) evaluation of data; (4) analysis of data; and (5) presentation of results. RESULTS: Following critical appraisal, nine guidelines were included for data extraction and synthesis. The following three groups of factors were found to facilitate patient-centred care: 1) Patient care practices: embracing values foundational to patient-centred care, optimal communication in all aspects of care, rendering basic nursing care practices, and family involvement; 2) Educational factors: staff and patient education; and 3) Organizational and policy factors: organizational and managerial support, organizational champions, healthy work environment, and organizational structures promoting interdisciplinary partnership. CONCLUSION: Evidence from included guidelines can be used by nurses, with the required support and buy-in from management, to promote patient-centred care. IMPACT: Patient-centred care is essential for quality care. No other literature review has been conducted in the English language to summarize evidence-based patient-centred care guidelines. Patient care practices and educational, organizational, and policy factors promote patient-centred care to improve quality of care and raise levels of awareness of patient-centred care among nursing staff and patients.

Vulnerability as a key concept in relational patient- centered professionalism.

The goal of this paper is to propose a relational turn in healthcare professionalism, to improve the responsiveness of both healthcare professionals and organizations towards care of patients, but also professionals. To this end, it is important to stress the way in which difficult situations and vulnerability faced by professionals can have an impact on their performance of work. This article pursue two objectives. First, I focus on understanding and making visible shared vulnerability that arises in clinical settings from a triple perspective: patient and family, health professionals, and institutions. Second, to address this challenge for professionalism, in this paper I articulate the term "relational centered-patient professionalism", which has two main axes. The relational approach means taking into account how the relationships among professionals, patients and institutions determine the constitution and evolution of those professional values. The focus on patient centered care is indispensable, because it is the ultimate goal pursued by the development of these professional values, and must always be at the center.

Patients' and Caregivers' Experiences with the Multi-Payer Advanced Primary Care Practice Demonstration.

BACKGROUND: The patient-centered medical home (PCMH) model aims to improve primary health care using a patient-centered approach. Little qualitative research has investigated how the PCMH model affects patient experience with care. OBJECTIVE: To understand Medicaid and Medicare patient and caregiver experiences with PCMHs participating in the Multi-Payer Advanced Primary Care Practice (MAPCP) Demonstration. DESIGN: Qualitative study. PARTICIPANTS: Medicare, Medicaid, and dually eligible patients who were patients in primary care practices participating in the MAPCP Demonstration and caregivers of such patients (N = 490). APPROACH: From July through November 2014, a trained facilitator conducted 81 focus groups in the eight states participating in the MAPCP Demonstration. Separate groups were held for Medicare high-risk, Medicare low-risk, Medicaid, and dually eligible beneficiaries, their caregivers, and caregivers of Medicaid children (or, in Vermont, with patients participating in the Support and Services at Home program), in two different geographical areas in each state. Focus group discussions were recorded, transcribed, and analyzed using NVivo qualitative data analysis software. RESULTS: Participants' experiences with care were generally consistent with the expectations of a PCMH, although some exceptions were noted. Medicaid only and dually eligible beneficiaries generally had less-positive experiences than Medicare beneficiaries. Most participants said their practices had not solicited feedback from them about their experiences with care. Few participants knew what the term "medical home" meant or were aware that their practices were working to become PCMHs, but many had noticed changes in recent years, primarily related to the conversion to electronic health records. CONCLUSIONS: Most participants had positive experiences with their care. Opportunities exist, however, to improve care for Medicaid and dually eligible beneficiaries, and enhance patient awareness of and involvement in PCMH practice transformation.

Wild data: how front-line hospital staff make sense of patients' experiences.

Patient-centred care has become the touchstone of healthcare policy in developed healthcare systems. The ensuing commodification of patients' experiences has resulted in a mass of data but little sense of whether and how such data are used. We sought to understand how front-line staff use patient experience data for quality improvement in the National Health Service (NHS). We conducted a 12-month ethnographic case study evaluation of improvement projects in six NHS hospitals in England in 2016-2017. Drawing on the sociology of everyday life, we show how front-line staff worked with a notion of data as interpersonal and embodied. In addition to consulting organisationally sanctioned forms of data, staff used their own embodied interactions with patients, carers, other staff and the ward environment to shape improvements. The data staff found useful involved face-to-face interaction and dialogue; were visual, emotive, and allowed for immediate action. We draw on de Certeau to re-conceptualise this as 'wild data'. We conclude that patient experience data are relational, and have material, social and affective dimensions, which have been elided in the literature to date. Practice-based theories of the everyday help to envision 'patient experience' not as a disembodied tool of managerialism but as an embedded part of healthcare staff professionalism.

Towards a universal model of family centered care: a scoping review.

BACKGROUND: Families play an important role meeting the care needs of individuals who require assistance due to illness and/or disability. Yet, without adequate support their own health and wellbeing can be compromised. The literature highlights the need for a move to family-centered care to improve the well-being of those with illness and/or disability and their family caregivers. The objective of this paper was to explore existing models of family-centered care to determine the key components of existing models and to identify gaps in the literature. METHODS: A scoping review guided by Arksey & O'Malley (2005) examined family-centered care models for diverse illness and age populations. We searched MEDLINE, PsycINFO, CINAHL and EMBASE for research published between 1990 to August 1, 2018. Articles describing the development of a family-centered model in any patient population and/or healthcare field or on the development and evaluation of a family-centered service delivery intervention were included. RESULTS: The search identified 14,393 papers of which 55 met our criteria and were included. Family-centered care models are most commonly available for pediatric patient populations (n = 40). Across all family-centered care models, the consistent goal is to develop and implement patient care plans within the context of families. Key components to facilitate family-centered care include: 1) collaboration between family members and health care providers, 2) consideration of family contexts, 3) policies and procedures, and 4) patient, family, and health care professional education. Some of these aspects are universal and some of these are illness specific. CONCLUSIONS: The review identified core aspects of family-centred care models (e.g., development of a care plan in the context of families) that can be applied to all populations and care contexts and some aspects that are illness specific (e.g., illness-specific education). This review identified areas in need of further research specifically related to the relationship between care plan decision making and privacy over medical records within models of family centred care. Few studies have evaluated the impact of the various models on patient, family, or health system outcomes. Findings can inform movement towards a universal model of family-centered care for all populations and care contexts.