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Background: A person‐centred approach in the context of health services delivery implies a biopsychosocial model focusing on all factors that influence the person's health and functioning. Those wishing to monitor change should consider this perspective when they develop and use guidelines to stimulate active consideration of the person's needs, preferences and participation in goal setting, intervention selection and the use of appropriate outcome measures. Objective: To develop a position paper that promotes a person‐centred approach in guideline development and implementation. Design, setting and participants: We used three narrative discussion formats to collect data for achieving consensus: a nominal group technique for the Allied Health Steering Group, an Internet discussion board and a workshop at the annual G‐I‐N conference. We analysed the data for relevant themes to draft recommendations. Results: We built the position paper on the values of the biopsychosocial model. Four key themes for enhancing a person‐centred approach in clinical guidelines emerged: (i) use a joint definition of health‐related quality of life as an essential component of intervention goals, (ii) incorporate the International Classification of Functioning, Disability and Health (ICF) as a framework for considering all domains related to health, (iii) adopt a shared decision‐making method, and (iv) incorporate patient‐reported health outcome measures. The position statement includes 14 recommendations for guideline developers, implementers and users. Conclusion: This position paper describes essential elements for incorporating a person‐centred approach in clinical guidelines. The consensus process provided information about barriers and facilitators that might help us develop strategies for implementing person‐centred care. [ABSTRACT FROM AUTHOR]

Background: This paper describes and critically reflects on how children and young people (CYP) acted as public advisors to coproduce health information materials about Long Covid for younger audiences. This work was underpinned by the Lundy model, a framework which provides guidance on facilitating CYP to actively contribute to matters which affect them. Methods: Coproduction activity sessions took place with CYP in schools as well as video conferences with a CYP stakeholder group and CYP with Long Covid. Activities encouraged CYP to focus on the content, format, and design of materials and used problem‐based and collaborative learning to encourage engagement with the project. Using a range of methods and open discussion, CYP codesigned a series of Long Covid health information materials for younger audiences. Results: Sixty‐six CYP (aged 10–18), and two young adults were involved. CYP codesigned specifications for the final materials and provided feedback on early designs. The project led to the development of a series of health information materials targeted at CYP: a short social media campaign with six short videos and a 12‐page illustrated leaflet about Long Covid; released on social media and distributed in local area. All the CYP were positive about the project and their involvement. Discussion: Involving CYP led to the development of innovative and engaging information materials (influence). Developing rapport was important when working with CYP and this was facilitated by using approaches and activities to establish an environment (space) where the CYP felt comfortable sharing their views (voice) and being listened to (audience) by the adults in the project. Working with external groups who are willing to share their expertise can help the meaningful involvement of voices 'less heard'. Public Contribution: One CYP coapplicant contributed to the project design and facilitation of PPIE sessions, 64 CYP were involved in the PPIE sessions to design and feedback on materials. Two young adult media producers worked with CYP to produce these materials, another CYP supported this process. Three public contributors were involved in the preparation of this manuscript. [ABSTRACT FROM AUTHOR]

Introduction: Many Covid‐19 survivors are living with unresolved, relapsing and remitting symptoms and no 'one size' of treatment is likely to be effective for everyone. Supported self‐management for the varied symptoms of Long Covid (LC) is recommended by the National Institute for Health and Care Excellence in the United Kingdom. We aimed to develop a new personalised support intervention for people living with LC using a structured co‐design framework to guide replication and evaluation. Methods: We used the improvement methodology, Experience‐Based Co‐Design, in an accelerated form to harness the collective experiences of people with LC. Incorporating evidence from 'Bridges Self‐Management' (Bridges) an approach in which healthcare professionals (HCPs)are trained to support knowledge, confidence and skills of individuals living with long term conditions. Co‐designed resources are also central to Bridges. Adults who self‐identified as living with or recovered from LC, from England or Wales, aged 18 years and over were recruited, and HCPs, with experience of supporting people with LC. Participants took part in a series of small co‐design group meetings and larger mixed meetings to agree priorities, core principles and generate resources and intervention content. Results: People with LC (n = 28), and HCPs (n = 9) supported co‐design of a book (hard‐copy and digital form) to be used in 1:1 support sessions with a trained HCP. Co‐design stages prioritised stories about physical symptoms first, and psychological and social challenges which followed, nonlinear journeys and reconceptualising stability as progress, rich descriptions of strategies and links to reputable advice and support for navigating healthcare services. Co‐design enabled formulation of eight core intervention principles which underpinned the training and language used by HCPs and fidelity assessments. Conclusion: We have developed a new personalised support intervention, with core principles to be used in one‐to‐one sessions delivered by trained HCPs, with a new co‐designed book as a prompt to build personalised strategies and plans using narratives, ideas, and solutions from other people with LC. Effectiveness and cost effectiveness of the 'LISTEN' intervention will be evaluated in a randomised controlled trial set within the context of the updated Framework for Developing and Evaluating Complex Interventions. Patient and Public Contribution: The LISTEN Public and Patient Involvement (PPI) group comprised seven people living with LC. They all contributed to the design of this study and five members were part of a larger co‐design community described in this paper. They have contributed to this paper by interpreting stages of intervention design and analysis of results. Three members of our PPI group are co‐authors of this paper. [ABSTRACT FROM AUTHOR]

Background: Youth engagement in research, wherein youth are involved in the research beyond mere participation as human subjects, is growing and becoming more popular as an approach to research. However, systematic and deliberate theory‐building has been limited. We conducted a systematic review to identify and synthesize theories, models and frameworks that have been applied in the engagement of youth in health research, including mental health. Methods: Six academic databases (MEDLINE, PsycINFO, Embase, PubMed, Scopus, CINAHL) and the grey literature were searched for relevant studies. Citation tracking was conducted through ancestry and descendancy searches. The final search was completed on 7 February 2023. Findings were summarized in a narrative synthesis informed by principles of hermeneutic analysis and interpretation. Reporting of results is in accordance with the PRISMA (Preferred Reporting Items for Systematic reviews and Meta‐Analyses) 2020 Statement. Results: Of the 1156 records identified, 16 papers were included, from which we extracted named theories (n = 6), implicit theories (n = 5) and models and frameworks (n = 20) used for youth engagement in health research. We identified theories that were explicitly stated and surfaced theories that were more implicitly suggested. Models and frameworks were organized into four categories based on their principal features: power‐focused (n = 8), process‐focused (n = 7), impact‐focused (n = 3) and equity‐focused (n = 2). Few frameworks (n = 5) were empirically tested in health‐related research. Conclusions: The state of theoretical development in youth engagement in research is still evolving. In this systematic review, we identified theories, models and frameworks used for youth engagement in health research. Findings from this systematic review offer a range of resources to those who seek to develop and strengthen youth engagement in their own research. Patient or Public Contribution: Youth engaged as patients in the research were not involved in planning or conducting the systematic review. However, youth researchers in their early to mid‐20s led the planning, implementation and interpretation of the review. As part of subsequent work, we formed a youth advisory board to develop a youth‐led knowledge mobilization intended for an audience of youth with lived experience of being engaged as patients in research. [ABSTRACT FROM AUTHOR]

Introduction: Co‐production is gaining increasing recognition as a good way of facilitating collaboration among different stakeholders, including members of the public. However, it remains an ambiguous concept as there is no definitive or universal model of co‐production or clarity on what constitutes a good co‐production approach. This paper draws on the reflections of the academic researchers, practitioners and public advisors involved in co‐producing a priority‐setting exercise. The exercise was conducted by the Primary and Community Health Services (PCHS) Theme of the National Institute for Health and Care Research Applied Research Collaboration for Kent, Surrey and Sussex (NIHR ARC KSS). Methods: We collected data through written and verbal reflections from seven collaborators involved in the PCHS priority‐setting exercise. We used Gibbs' model of reflection to guide the data collection. We then analysed the data through an inductive, reflexive thematic analysis. Results: A common thread through our reflections was the concept of 'sharing'. Although co‐production is inherently shared, we used the virtuous cycle to illustrate a sequence of sharing concepts during the research cycle, which provides the underpinnings of positive co‐production outcomes. We identified six themes to denote the iterative process of a shared approach within the virtuous cycle: shared values, shared understanding, shared power, shared responsibilities, shared ownership and positive outcomes. Conclusion: Our results present a virtuous cycle of co‐production, which furthers the conceptual underpinnings of co‐production. Through our reflections, we propose that positive co‐production outcomes require foundations of shared values and a shared understanding of co‐production as a concept. These foundations facilitate a process of shared power, shared responsibilities and shared ownership. We argue that when these elements are present in a co‐production exercise, there is a greater potential for implementable outcomes in the communities in which the research serves and the empowerment of collaborators involved in the co‐production process. Public Members' Contributions: Three members of the public who are public advisors in the NIHR ARC KSS were involved in the priority‐setting exercise that informed this paper. The public advisors were involved in the design of the priority‐setting exercise and supported participants' recruitment. They also co‐facilitated the focus groups during data collection and were involved in the data analysis, interpretation and preparation of the priority‐setting report. For this current manuscript, two of them are co‐authors. They provided reflections and contributed to the writing and reviewing of this manuscript. [ABSTRACT FROM AUTHOR]

Introduction: Although Jordan has made significant progress toward expanding the utilization of facility‐based intrapartum care, prior research highlights that poor service quality is still persistent. This study aimed to identify quality gaps between women's expectations and perceptions of the actual intrapartum care received, while exploring the contributing factors. Methods: Utilizing a pre–post design, quality gaps in intrapartum care were assessed among 959 women pre‐ and postchildbirth at a prominent tertiary hospital in northern Jordan. Data were gathered using the SERVQUAL scale, measuring service quality across reliability, responsiveness, tangibles, assurance, and empathy dimensions. Results: The overall mean gap score between women's expectations and perceptions of the quality of intrapartum care was −0.60 (±0.56). The lowest and highest mean gap scores were found to be related to tangibles and assurance dimensions, −0.24 (±0.39) and −0.88 (±0.35), respectively. Significant negative quality gaps were identified in the dimensions of assurance, empathy, and responsiveness, as well as overall service quality (p < 0.001). The MLR analyses highlighted education (β = 0.61), mode of birth (β = −0.60), admission timing (β = −0.41), continuity of midwifery care (β = −0.43), physician's gender (β = −0.62), active labour duration (β = 0.37), and pain management (β = −0.33) to be the key determinants of the overall quality gap in intrapartum care. Conclusion: Our findings underscore the importance of fostering a labour environment that prioritizes enhancing caregivers' empathetic, reassuring, and responsive skills to minimize service quality gaps and enhance the overall childbirth experience for women in Jordan. Patient or Public Contribution: This paper is a collaborative effort involving women with lived experiences of childbirth, midwives, and obstetrics and gynaecologist physicians. The original idea, conceptualization, data generation, and coproduction, including manuscript editing, were shaped by the valuable contributions of stakeholders with unique perspectives on intrapartum care in Jordan. [ABSTRACT FROM AUTHOR]

Background: The implementation science literature acknowledges a need for engagement of key stakeholders when designing, delivering and evaluating implementation work. To date, the literature reports minimal or focused stakeholder engagement, where stakeholders are engaged in either barrier identification and/or barrier prioritisation. This paper begins to answer calls from the literature for the development of tools and guidance to support comprehensive stakeholder engagement in implementation research and practice. The paper describes the systematic development of the Implementation‐STakeholder Engagement Model (I‐STEM) in the context of an international, large‐scale empirical implementation study (ImpleMentAll) aimed at evaluating the effectiveness of a tailored implementation toolkit. The I‐STEM is a sensitising tool that defines key considerations and activities for undertaking stakeholder engagement activities across an implementation process. Methods: In‐depth, semistructured interviews and observations were conducted with implementers who were tailoring implementation strategies to integrate and embed internet‐based cognitive behavioural therapy (iCBT) services in 12 routine mental health care organisations in nine countries in Europe and Australia. The analytical process was informed by principles of first‐ and third‐generation Grounded Theory, including constant comparative method. Results: We conducted 55 interviews and observed 19 implementation‐related activities (e.g., team meetings and technical support calls). The final outcome of our analysis is expressed in an initial version of the I‐STEM, consisting of five interrelated concepts: engagement objectives, stakeholder mapping, engagement approaches, engagement qualities and engagement outcomes. Engagement objectives are goals that implementers plan to achieve by working with stakeholders in the implementation process. Stakeholder mapping involves identifying a range of organisations, groups or people who may be instrumental in achieving the engagement objectives. Engagement approaches define the type of work that is undertaken with stakeholders to achieve the engagement objectives. Engagement qualities define the logistics of the engagement approach. Lastly, every engagement activity may result in a range of engagement outcomes. Conclusion: The I‐STEM represents potential avenues for substantial stakeholder engagement activity across key phases of an implementation process. It provides a conceptual model for the planning, delivery, evaluation and reporting of stakeholder engagement activities. The I‐STEM is nonprescriptive and highlights the importance of a flexible, iterative approach to stakeholder engagement. It is developmental and will require application and validation across a range of implementation activities. Patient or Public Contribution: Patient contribution to ImpleMentAll trial was facilitated by GAMIAN‐Europe at all stages—from grant development to dissemination. GAMIAN‐Europe brings together a wide variety of patient representation organisations (local, regional and national) from almost all European countries. GAMIAN‐Europe was involved in pilot testing the ItFits‐toolkit and provided their views on the various aspects, including stakeholder engagement. Patients were also represented in the external advisory board providing support and advice on the design, conduct and interpretation of the wider project, including the development of the ItFits‐toolkit. Trial registration: ClinicalTrials.gov NCT03652883. Retrospectively registered on 29 August 2018. [ABSTRACT FROM AUTHOR]

Introduction: Telepractice service delivery of allied health interventions to people with disability can potentially reduce access barriers and improve service equity. However, questions remain regarding telepractice functionality for people with disability. This study addressed questions related to how allied health clinicians and managers perceive telepractice as functioning in the provision of therapy services to people with disability. Methods: Thirteen interviews of allied health clinicians and managers from across Australia were conducted between 21 November and 22 February via MS teams. Qualitative methodology and critical realist theoretical paradigm underpin the study. Data analysis was completed using a reflective thematic analysis method and five themes were generated and described utilising an analytic metaphor. Results: The study themes were described in relation to a shopping for shoes analytic metaphor and the five themes included (1) a shoe for every foot, (2) planned purchases, (3) shoe on the other foot, (4) you need both shoes and (5) help choosing their shoes. In summary, the function of telepractice fits differently for each individual, similar to pairs of shoes. Conclusions: Telepractice has its own strengths and weaknesses and isn't a direct substitute for in‐person sessions, much like left and right shoes are similar but not the same. The results support participant perceptions that telepractice functions best as an adjunct to in‐person sessions through a flexible hybrid delivery model in the provision of therapy services to people with a disability. A strategy for improving perceived usefulness may involve positioning telepractice as unique with strengths and weaknesses, not replacing in‐person care. Patient or Public Contribution: The paper forms part of a larger codesign process which included customer and carer participants throughout the design and planning of the project, inclusion of a peer researcher, and the selection of the analytic metaphor including in the findings of this article production. [ABSTRACT FROM AUTHOR]

Background: Migrant and ethnic inequalities in maternal and perinatal mortality persist across high‐income countries. Addressing social adversity and inequities across the childbirth trajectory cannot be left to chance and the good intentions of practitioners. Robust, evidence‐based tools designed to address inequity by enhancing both the quality of provision and the experience of care are needed. Methods: An inductive modelling approach was used to develop a new evidence‐based conceptual model of woman–midwife relationships, drawing on data from an ethnographic study of relationships between migrant Pakistani women and midwives, conducted between 2013 and 2016 in South Wales, UK. Key analytic themes from early data were translated into social–ecological concepts, and a model was developed to represent how these key themes interacted to influence the woman–midwife relationship. Results: Three key concepts influencing the woman–midwife relationship were developed from the three major themes of the underpinning research: (1) Healthcare System; (2) Culture and Religion; and (3) Family Relationships. Two additional weaving concepts appeared to act as a link between these three key concepts: (1) Authoritative Knowledge and (2) Communication of Information. Social and political factors were also considered as contextual factors within the model. A visual representation of this model was developed and presented. Conclusions: The model presented in this paper, along with future work to further test and refine it in other contexts, has the potential to impact on inequalities by facilitating future discussion on cultural issues, encouraging collaborative learning and knowledge production and providing a framework for future global midwifery practice, education and research. Patient or Public Contribution: At the outset of the underpinning research, a project involvement group was created to contribute to study design and conduct. This group consisted of the three authors, an Advocacy Officer at Race Equality First and an NHS Consultant Midwife. This group met regularly throughout the research process, and members were involved in discussions regarding ethical/cultural/social issues, recruitment methods, the creation of participant information materials, interpretation of data and the dissemination strategy. Ideas for the underpinning research were also discussed with members of the Pakistani community during community events and at meetings with staff from minority ethnic and migrant support charities (BAWSO, Race Equality First, The Mentor Ring). Local midwives contributed to study design through conversations during informal observations of antenatal appointments for asylum seekers and refugees. [ABSTRACT FROM AUTHOR]

Context: The involvement of lay people in health care decision‐making processes is now the norm in many countries. However, one important aspect of participation has not received sufficient attention in the past and remains underexplored: representation. Objective: This paper explores the question of how public participation efforts in collective health care decision‐making processes can attempt to aim for legitimate representation so that those individuals or groups not present can be taken into account in the decisions affecting them. This paper argues that to make decisions that effectively address those affected, representation needs to be seen as a relevant part of any participatory setting. To support this argument, the paper outlines the concepts of participation and representation and transfers them to health care contexts. Results: A conceptual reflection on responsiveness and the characteristics of representative actors in representative‐participatory settings is introduced, which could provide actors planning to conduct participatory health care projects with tools to reflect on the merits and possible flaws of participatory constellations. Patient or Public Contribution: The paper contributes to improving public participation in health care decision‐making. [ABSTRACT FROM AUTHOR]

Background: Medicines are often suboptimally managed for heart failure patients across the transition from hospital to home, potentially leading to poor patient outcomes. The Improving the Safety and Continuity Of Medicines management at Transitions of care programme included: understanding the problems faced by patients and healthcare professionals; developing and co‐designing the Medicines at Transitions of care Intervention (MaTI); a cluster randomized controlled trial testing the effectiveness of a complex behavioural MaTI aimed at improving medicines management at the interface between hospitals discharge and community care for patients with heart failure; and a process evaluation. The MaTI included a patient‐held My Medicines Toolkit; enhanced communication between the hospital and the patient's community pharmacist and increased engagement of the community pharmacist postdischarge. This paper reports on the patients' experiences of the MaTI and its implementation from the process evaluation. Design: Twenty one‐to‐one semi‐structured patient interviews from six intervention sites were conducted between November 2018 and January 2020. Data were analysed using the Framework method, involving patients as co‐analysts. Interview data were triangulated with routine trial data, the Consolidated Framework for Implementation Research and a logic model. Results: Within the hospital setting patients engaged with the toolkit according to whether staff raised awareness of the My Medicines Toolkit's importance and the time and place of its introduction. Patients' engagement with community pharmacy depended on their awareness of the community pharmacist's role, support sources and perceptions of involvement in medicines management. The toolkit's impact on patients' medicines management at home included reassurance during gaps in care, increased knowledge of medicines, enhanced ability to monitor health and seek support and supporting sharing medicines management between formal and informal care networks. Conclusion: Many patients perceived that the MaTI offered them support in their medicines management when transitioning from hospital into the community. Importantly, it can be incorporated into and built upon patients' lived experiences of heart failure. Key to its successful implementation is the quality of engagement of healthcare professionals in introducing the intervention. Patient or Public Contribution: Patients were involved in the study design, as qualitative data co‐analysts and as co‐authors. [ABSTRACT FROM AUTHOR]

Background: In the Netherlands, all women aged 30–60 years are invited to participate in the national cervical cancer screening programme, which is aimed at early detection and treatment of precancerous lesions. One fourth of the Dutch population has a migration background, with Turkish and Moroccan immigrants being the largest immigrant populations. Turkish‐ and Moroccan‐Dutch women show lower screening participation rates and a higher incidence of cervical cancer, compared to native Dutch women. Since current information materials are not tailored to these women's needs, we developed a short culturally sensitive educational video to facilitate informed decision‐making for cervical cancer screening among Turkish‐ and Moroccan‐Dutch women. This article describes the development process of this video and the lessons learned. Methods: Using the Entertainment–Education communication strategy, we collaborated with an interdisciplinary team of Turkish‐ and Moroccan‐Dutch women, researchers, public health experts, and creative media professionals. We developed the video following the different stages of the Media Mapping model: Orientation, Crystallization, Design/Production, Implementation, and Dissemination. Each stage is described in the paper. Results: The video was developed in Moroccan‐Arabic, ‐Berber and Turkish, and emphasized three main themes: (1) more certainty about having cervical (pre)cancer and the possibility to prevent treatment, surgery, or premature death, and because of this, being there for the children, (2) according to the Islam, a woman should take good care of her health, and (3) anxiety, shame, and privacy. Conclusions: A short culturally sensitive educational video, delivered as part of a larger intervention together with the current information brochure, was developed based on theory and grounded in the needs of Turkish‐ and Moroccan‐Dutch women. The value and effectiveness of this intervention to facilitate informed cervical cancer screening decisions are evaluated in a randomised controlled trial. Patient or Public Contribution: We collaborated with Turkish‐ and Moroccan‐Dutch women during the development process of a short culturally sensitive educational video. Turkish‐ and Moroccan‐Dutch women were also invited to watch the raw footage to verify whether the content and presentation matched their needs and requirements. [ABSTRACT FROM AUTHOR]

Background: Obesity rates are higher among people of lower socioeconomic status. While numerous health behaviour interventions targeting obesity exist, they are more successful at engaging higher socioeconomic status populations, leaving those in less affluent circumstances with poorer outcomes. This highlights a need for more tailored interventions. The aim of this study was to enhance an existing weight loss course for adults living in low socioeconomic communities. Methods: The Behaviour Change Wheel approach was followed to design an add‐on intervention to an existing local authority‐run weight loss group, informed by mixed‐methods research and stakeholder engagement. Results: The COM‐B analysis of qualitative data revealed that changes were required to psychological capability, physical and social opportunity and reflective motivation to enable dietary goal‐setting behaviours. The resulting SMART‐C booklet included 6 weeks of dietary goal setting, with weekly behavioural contract and review. Conclusion: This paper details the development of the theory‐ and evidence‐informed SMART‐C intervention. This is the first report of the Behaviour Change Wheel being used to design an add‐on tool to enhance existing weight loss services. The process benefitted from a further checking stage with stakeholders. [ABSTRACT FROM AUTHOR]

Background: Previous research suggests that it would be useful to view health literacy as a set of 'distributed competencies', which can be found dispersed through the individual's social network, rather than an exclusively individual attribute. However, to date there is no focused exploration of how distributed health literacy has been defined, conceptualized or assessed in the peer‐reviewed literature. Aims: This systematic review aimed to explore: (1) definitions and conceptual models of distributed health literacy that are available from the peer‐reviewed literature; and (2) how distributed health literacy has been measured in empirical research. Methods: We searched MEDLINE, Embase, CINAHL, PsycInfo, Scopus, ERIC and Web of Science using truncated versions of the keywords 'literacy' and 'distributed' (within five words' distance). We collated the definitions and conceptual models of distributed health literacy, and report on how health literacy has been measured in empirical research studies. Findings related to distributed health literacy from included manuscripts were synthesized using thematic synthesis. Results: Of the 642 studies screened, 10 were included in this systematic review. The majority were empirical manuscripts reporting on qualitative research in one of five countries, with two reviews, one conceptual analysis and one quantitative study. Edwards' definition of distributed health literacy, which emphasizes the health literacy abilities, skills and practices of others that contribute to an individual's level of health literacy was widely applied in a variety of clinical and geographical settings. However, we did not identify any quantitative instruments which directly measured distributed health literacy. There was significant variability in questions used to explore the concept qualitatively, and discrepancies across studies in regard to (a) what constitutes distributed health literacy and what does not (e.g., general social support), and (b) the relationship between distributed health literacy and other constructs (e.g., public health literacy). Conclusion: Although there is a widely applied definition of distributed health literacy, our review revealed that the research space would benefit from the development of the concept, both theoretically for example via conceptual distinctions between distributed health literacy and other types of social support, and empirically for example through the development of a quantitative measurement instrument. Patient or Public Contribution: This paper is a systematic review and did not involve patients or the public. [ABSTRACT FROM AUTHOR]

Background: Demand is labelled 'clinically unnecessary' when patients do not need the levels of clinical care or urgency provided by the service they contact. Objective: To identify programme theories which seek to explain why patients make use of emergency and urgent care that is subsequently judged as clinically unnecessary. Design: Realist review. Methods: Papers from four recent systematic reviews of demand for emergency and urgent care, and an updated search to January 2017. Programme theories developed using Context‐Mechanism‐Outcome chains identified from 32 qualitative studies and tested by exploring their relationship with existing health behaviour theories and 29 quantitative studies. Results: Six mechanisms, based on ten interrelated programme theories, explained why patients made clinically unnecessary use of emergency and urgent care: (a) need for risk minimization, for example heightened anxiety due to previous experiences of traumatic events; (b) need for speed, for example caused by need to function normally to attend to responsibilities; (c) need for low treatment‐seeking burden, caused by inability to cope due to complex or stressful lives; (d) compliance, because family or health services had advised such action; (e) consumer satisfaction, because emergency departments were perceived to offer the desired tests and expertise when contrasted with primary care; and (f) frustration, where patients had attempted and failed to obtain a general practitioner appointment in the desired timeframe. Multiple mechanisms could operate for an individual. Conclusions: Rather than only focusing on individuals' behaviour, interventions could include changes to health service configuration and accessibility, and societal changes to increase coping ability. [ABSTRACT FROM AUTHOR]

Introduction: We present a relationship‐centred shared‐decision‐making (RCSDM) process model to explicate factors that shape decision‐making processes during physical medicine and rehabilitation (PMR) encounters among patients, their care partners and practitioners. Existing shared decision‐making (SDM) models fall short in addressing the everyday decisions routinely made regarding persons with chronic disabilities who require high levels of support, their care partners and rehabilitation practitioners. In PMR, these everyday decisions are small scale, immediate and in service to a larger therapeutic goal. They can be thought of as micro‐decisions and involve multiple practitioners, care partners and patients. How micro‐decisions are made in this context is contingent on multiple roles and relationships among these relevant parties. Our model centres on micro‐decisions among patients, their care partners and practitioners based on our disorders of consciousness (DoC) research. Methods: To develop our model, we examined peer‐reviewed literature in SDM in PMR, chronic disability and person‐centeredness; formed collaborations and co‐created our constructs with rehabilitation practitioners and with care partners who have lived experience of caring for persons with DoC; analysed emerging empirical data and vetted early versions with expert scientific and clinical audiences. Our model builds from the core tenets of relational autonomy, and scholarship and activism of disability advocates. Findings: Our model conceptualizes four non‐hierarchical levels of analysis to understand the process of micro‐decision‐making in chronic disability and medical rehabilitation: social forces (historical and sociological); roles and relationships (multiple and intersecting); relational dimensions (interactional and contextual) and micro‐decision moments (initiation, response and closure). Discussion: Relationships among patients, their care partners and practitioners are the intersubjective milieu within which decisions are made. Our conceptual model explicates the process of micro‐decision‐making in PMR. Patient or Public Contribution: Care partners (or caregivers) and rehabilitation practitioners are active members of our team. We work together to develop research projects, collect, analyse and disseminate data. The conceptual model we present in this manuscript was co‐created—input from care partners and practitioners on previously collected data became the impetus to develop the RCSDM process model and share co‐authorship in this manuscript. [ABSTRACT FROM AUTHOR]

Background: Disability is often an essentialised and oversimplified concept. We propose refining this while incorporating the multidimensional nature of disability by increasing the use of existing survey questions and their corresponding data to enrich, broaden and inform understandings of disability. Methods: We combined patient and public involvement and engagement (PPIE) with focus groups and concept mapping to collaboratively map disability survey questions into conceptual models of disability with six members of the public with lived experiences of disability. Results: Using reflexive thematic analysis, we identified three qualitative themes and eight subthemes through a series of four PPIE activities: (1) understanding concepts of disability based on individual experience, subthemes: 1.1—preference for the biopsychosocial model, 1.2—'Reviewing' instead of mapping survey questions and 1.3—comparing questions to real life; (2) consistency between understanding needs and implementing adjustments, subthemes: 2.1—connecting preparation and operation, 2.2—inclusivity and adjustments in activities and 2.3—feedback for improving activities and (3) real‐world applications—targeted awareness raising, subthemes: 3.1—who, where, what and how to share activity findings and results, 3.2—sharing with human resource and equality, diversity and inclusion professionals. Conclusion: Members of the public who collaborated in these activities felt empowered, engaged and supported throughout this study. This approach offers a model for other researchers to cede power to the public over the research aspects typically reserved for researchers. Patient or Public Contribution: We involved members of the public with lived experience throughout this study—co‐design, co‐facilitation, collaboratively mapping the disability or disability‐related survey questions into conceptual models of disability, evaluation of the activities, co‐analysis and co‐authorship. [ABSTRACT FROM AUTHOR]

Background: How people with chronic obstructive pulmonary disease (COPD) engage with supportive social networks to enhance self‐care is not understood. The personal rationales for participation in socially directed support have not been addressed in the literature. To determine how people with COPD identify, engage and participate in socially supportive self‐care practices, we conducted a systematic review and meta‐ethnography of qualitative studies. Methods: A systematic literature search was conducted between June 2010 and June 2021. Of 3536 articles, 8 fulfilled the inclusion criteria. Using a meta‐ethnography approach to the qualitative synthesis, new concepts were derived from the data to identify aligning themes and develop a conceptual model. Findings: Interpretations from the papers yielded concepts of (1) accountability and personal responsibility in self‐care, (2) valued positive relationships with clinicians, (3) understanding of illness through shared and personal experiences and (4) acknowledging social networks in fostering self‐care engagement in people with COPD. The independence‐experience (Index) model of synthesized (third order) interpretations highlighted the processes of social networks and self‐care practices: (a) fear or avoidance of dependency, (b) learning from experiences of adaptive self‐care behaviours and (c) including valued practices in self‐care. Self‐care strategies are formed through illness experiences and relatable social encounters. Conclusion: The model derived from the third‐order interpretations is a framework to describe socially supported self‐care and can be used to direct future self‐care strategies and target interventions for people with COPD. Patient or Public Contribution: The findings and model were presented to the long‐term conditions patient and public involvement group. The manuscript is coauthored by a public representative. [ABSTRACT FROM AUTHOR]

Introduction: Shared decision‐making intends to align care provision with individuals' preferences. However, the involvement of people living with dementia in decision‐making about their care varies. We aimed to co‐design the EMBED‐Care Framework, to enhance shared decision‐making between people affected by dementia and practitioners. Methods: A theory and evidence driven co‐design study was conducted, using iterative workshops, informed by a theoretical model of shared decision‐making and the EMBED‐Care Framework (the intervention) for person‐centred holistic palliative dementia care. The intervention incorporates a holistic outcome measure for assessment and review, linked with clinical decision‐support tools to support shared decision‐making. We drew on the Medical Research Council (MRC) guidance for developing and evaluating complex interventions. Participants included people with dementia of any type, current or bereaved family carers and practitioners. We recruited via established dementia groups and research and clinical networks. Data were analysed using reflexive thematic analysis to explore how and when the intervention could enhance communication and shared decision‐making, and the requirements for use, presented as a logic model. Results: Five co‐design workshops were undertaken with participants comprising people affected by dementia (n = 18) and practitioners (n = 36). Three themes were generated, comprising: (1) 'knowing the person and personalisation of care', involving the person with dementia and/or family carer identifying the needs of the person using a holistic assessment. (2) 'engaging and considering the perspectives of all involved in decision‐making' required listening to the person and the family to understand their priorities, and to manage multiple preferences. (3) 'Training and support activities' to use the Framework through use of animated videos to convey information, such as to understand the outcome measure used to assess symptoms. Conclusions: The intervention developed sought to enhance shared decision‐making with individuals affected by dementia and practitioners, through increased shared knowledge of individual priorities and choices for care and treatment. The workshops generated understanding to manage disagreements in determining priorities. Practitioners require face‐to‐face training on the intervention, and on communication to manage sensitive conversations about symptoms, care and treatment with individuals and their family. The findings informed the construction of a logic model to illustrate how the intervention is intended to work. [ABSTRACT FROM AUTHOR]

Introduction: Effective consumer engagement practices can enhance patient safety. This is important for consumers from ethnic minority backgrounds who are exposed to increased risk of patient safety events. Using the Systems Engineering Initiative for Patient Safety model, this study explored staff experiences of creating opportunities for engagement with consumers from ethnic minority backgrounds to contribute to their cancer care safety. Method: A qualitative study was conducted using semistructured interviews with cancer service staff from four cancer services across two states in Australia. Purposive sampling was used to recruit healthcare staff from a diverse range of professions. Data were analysed using the Framework Analysis method. Results: Fifty‐four interviews were conducted with healthcare staff. Analysis of the qualitative interview data identified enablers and associated challenges that contributed to creating a shared understanding between consumers and staff of the information, processes, expectations and problems arising in care. Enablers and challenges are reported in relation to four themes: (1) co‐creating safety through shared understanding of care processes; (2) tools and technologies support planned communication; (3) organisational policy levers exist but lack implementation in direct care and (4) formal tasks incorporate consumer engagement more readily than informal interactions. Conclusion: The availability of infrastructure and resources to support communication with consumers from ethnic minority backgrounds was limited to specific tasks across the cancer care continuum. Strategies implemented by health services to foster effective communication during formal interactions now require expansion to support and create conditions for effective consumer engagement during informal and everyday care tasks. The use of innovative language support tools and cultural considerations are required at the service and system level to support consumer engagement in all types of care interactions. Public and Patient Involvement: The study was embedded within a larger project that included a consumer investigator and was guided by a consumer advisory group (CAG). These consumer team members have lived experience of cancer and are from diverse ethnic backgrounds. CAG members provided feedback on the draft interview guide and participant information for this study. [ABSTRACT FROM AUTHOR]

Background: Health literacy is essential in the promotion of healthy lifestyle habits and chronic disease prevention. Objective: To assess the health literacy level among Hong Kong adolescents; to evaluate the association between access of an online health information platform (GoSmart Channel) and health literacy level; and to examine the association between health literacy level and various unhealthy behaviours. Design: This study recruited students from 10 local secondary schools in Hong Kong to assess the health literacy level among adolescents. Settings and Participants: Participants were required to complete a self‐administered questionnaire on health behaviours and health literacy using the Health Literacy Measure for Adolescents (HELMA). Main Outcome Measure: Data were analysed using descriptive statistics and multivariate regression modelling. Results: A total of 777 responses were collected. Overall, most (74.4%) of the adolescents in Hong Kong have limited health literacy (HELMA score <66). The majority (63.7%) of adolescents relied on their parents for health information, while 11.4% of the respondents sought information from the GoSmart Channel. The intervention of GoSmart Channel was significantly associated with better health literacy in almost all aspects among adolescents. Desired levels of health literacy were significantly associated with better perceived health (adjusted odds ratio: 2.04, p =.001) and negatively associated with a range of unhealthy and risky behaviours including unhealthy dietary habits, poor hygienic measures and physical inactivity. Discussion and Conclusion: This study highlights the importance of improving health literacy among Hong Kong adolescents and the potential of technology‐based interventions. The findings suggest the need for continued efforts to promote health literacy and healthy behaviours among adolescents, especially given the limited health literacy levels observed in the study. Patient or Public Contribution: Members of the GoSmart.Net Built‐on Project patient and public involvement and engagement group advised about survey development. [ABSTRACT FROM AUTHOR]

Introduction: Digital delivery of pre‐operative total knee replacement (TKR) education and prehabilitation could improve patient outcomes pre‐ and post‐operatively. Rigorously developing digital interventions is vital to help ensure they achieve their intended outcomes whilst mitigating their potential drawbacks. Objective: To develop a pre‐operative TKR education and prehabilitation digital intervention, the 'Virtual Knee School' (VKS). Methods: The VKS was developed using an evidence‐, theory‐ and person‐based approach. This involved a mixed methods design with four phases. The first three focused on planning the VKS. The final phase involved creating a VKS prototype and iteratively refining it through concurrent think‐aloud interviews with nine patients who were awaiting/had undergone TKR. Meta‐inferences were generated by integrating findings from all the phases. ISRCTN registration of the overall project was obtained on 24 April 2020 (ISRCTN11759773). Results: Most participants found the VKS prototype acceptable overall and considered it a valuable resource. Conversely, a minority of participants felt the prototype's digital format or content did not meet their individual needs. Participants' feedback was used to refine the prototype's information architecture, design and content. Two meta‐inferences were generated and recommend: 1.Comprehensive pre‐operative TKR education and prehabilitation support should be rapidly accessible in digital and non‐digital formats.2.Pre‐operative TKR digital interventions should employ computer‐ and self‐tailoring to account for patients' individual needs and preferences. Conclusions: Integrating evidence, theory and stakeholders' perspectives enabled the development of a promising VKS digital intervention for patients awaiting TKR. The findings suggest future research evaluating the VKS is warranted and provide recommendations for optimising pre‐operative TKR care. Patient or Public Contribution: Patient and Public Involvement (PPI) was central throughout the project. For example, PPI representatives contributed to the project planning, were valued members of the Project Advisory Group, had key roles in developing the VKS prototype and helped disseminate the project findings. [ABSTRACT FROM AUTHOR]

Background Patients' as well as doctors' expectations might be key elements for improving the quality of health care; however, previous conceptual and theoretical frameworks related to expectations often overlook such complex and complementary relationship between patients' and doctors' expectations. The concept of 'matched patient-doctor expectations' is not properly investigated, and there is lack of literature exploring such aspect of the consultation. Aim The paper presents a preliminary conceptual model for the relationship between patients' and doctors' expectations with specific reference to back pain management in primary care. Methods The methods employed in this study are integrative literature review, examination of previous theoretical frameworks, identification of conceptual issues in existing literature, and synthesis and development of a preliminary pragmatic conceptual framework. Outcome A simple preliminary model explaining the formation of expectations in relation to specific antecedents and consequences was developed; the model incorporates several stages and filters (influencing factors, underlying reactions, judgement, formed reactions, outcome and significance) to explain the development and anticipated influence of expectations on the consultation outcome. Conclusion The newly developed model takes into account several important dynamics that might be key elements for more successful back pain consultation in primary care, mainly the importance of matching patients' and doctors' expectations as well as the importance of addressing unmet expectations. [ABSTRACT FROM AUTHOR]

Background: Numerous frameworks for supporting, evaluating and reporting patient and public involvement in research exist. The literature is diverse and theoretically heterogeneous. Objectives: To identify and synthesize published frameworks, consider whether and how these have been used, and apply design principles to improve usability. Search strategy: Keyword search of six databases; hand search of eight journals; ancestry and snowball search; requests to experts. Inclusion criteria: Published, systematic approaches (frameworks) designed to support, evaluate or report on patient or public involvement in health‐related research. Data extraction and synthesis: Data were extracted on provenance; collaborators and sponsors; theoretical basis; lay input; intended user(s) and use(s); topics covered; examples of use; critiques; and updates. We used the Canadian Centre for Excellence on Partnerships with Patients and Public (CEPPP) evaluation tool and hermeneutic methodology to grade and synthesize the frameworks. In five co‐design workshops, we tested evidence‐based resources based on the review findings. Results: Our final data set consisted of 65 frameworks, most of which scored highly on the CEPPP tool. They had different provenances, intended purposes, strengths and limitations. We grouped them into five categories: power‐focused; priority‐setting; study‐focused; report‐focused; and partnership‐focused. Frameworks were used mainly by the groups who developed them. The empirical component of our study generated a structured format and evidence‐based facilitator notes for a "build your own framework" co‐design workshop. Conclusion: The plethora of frameworks combined with evidence of limited transferability suggests that a single, off‐the‐shelf framework may be less useful than a menu of evidence‐based resources which stakeholders can use to co‐design their own frameworks. [ABSTRACT FROM AUTHOR]

Background: Parent carers of disabled children are at increased risk of physical and mental health problems. The Healthy Parent Carers (HPC) programme is a manualised peer‐led group‐based programme that aims to promote parent carer health and wellbeing. Previously, the programme had been delivered in person, with recruitment and delivery managed in a research context. This study explored implementation by two delivery partner organisations in the United Kingdom. Facilitator Training and Delivery Manuals were modified for online delivery using Zoom due to COVID‐19. Methods: The study methodology utilised the Replicating Effective Programs framework. A series of stakeholder workshops informed the development of the Implementation Logic Model and an Implementation Package. After delivering the programme, delivery partner organisations and facilitators participated in a workshop to discuss experiences of implementing the programme. A wider group of stakeholders, including commissioners, Parent Carer Forums and charity organisations representatives and researchers subsequently met to consider the sustainability and potential barriers to delivering the programme outside the research context. Results: This study explored implementation by two delivery partner organisations in the United Kingdom that were able to recruit facilitators, who we trained, and they recruited participants and delivered the programme to parent carers in different localities using Zoom. The co‐created Implementation Logic Model and Implementation Package were subsequently refined to enable the further roll‐out of the programme with other delivery partner organisations. Conclusions: This study provides insight and understanding of how the HPC programme can be implemented sustainably outside of the research context. Further research will evaluate the effectiveness of the programme and refine the implementation processes. Patient and Public Contribution: Parent carers, delivery partner organisation staff and service commissioners were consulted on the design, delivery and reporting of the research. [ABSTRACT FROM AUTHOR]

Introduction: Patient‐centered care (PCC) has been declared as a desirable goal for health care in Latin American countries, but a coherent definition of what exactly PCC entails for clinical practice is missing. This article's aim was to identify how PCC is conceptualized in Latin American countries. Methods: Scientific databases (MEDLINE, EMBASE, PsycINFO, CINAHL, Scielo, Scopus, Web of Science) and webpages of the ministries of health were searched, and experts were contacted for suggestions of literature. References were included if they contained one of a range of a priori defined keywords related to PCC in the title, were published between 2006 and 2021, and were carried out in or concerned Latin America. Definitions of PCC were extracted from the included articles and analyzed using deductive and inductive coding. Deductive coding was based on the integrative model of patient‐centeredness, which unites the definitions of PCC in the international literature (mainly North America and Europe) and proposes 16 dimensions describing PCC. Results: Thirty‐two articles were included in the analysis and about half of them were from Brazil. Numerous similarities were found between the integrative model of patient‐centeredness and the definitions of PCC given in the selected literature. The dimensions of the integrative model of patient‐centeredness that were least and most prominent in the literature were physical support and patient information, respectively. A differentiation between PCC and family‐centered care (FCC) was observed. Definitions of PCC and FCC as well as their cited references were diverse. Conclusion: A considerable overlap between the conceptualization of PCC in Latin America and the integrative model of patient‐centeredness has been identified. However, there are substantial differences between countries in Latin America regarding the emphasis of research on PCC versus FCC and diverse conceptualizations of PCC and FCC exist. Patient Contribution: This scoping review takes the patient's perspective based on the integrative model of patient‐centeredness. Due to the study being a review, no patients, neither caregivers, nor members of the public, were involved. [ABSTRACT FROM AUTHOR]

Background: Recent systematic reviews suggest mediating factors (barriers and facilitators) of help‐seeking for children and young people (CYP) with a range of mental health problems but highlight the need for a more robust methodology underpinned by theoretical frameworks. Emotional abuse and neglect is the most prevalent and pervasive form of abuse, with many CYP remaining unknown to professional services. These CYP are underrepresented in help‐seeking research yet seek help from their peers via anonymous online publicly available message communities. Objectives: To sensitively co‐develop qualitative methodology to explore 'real‐world' data to inform our understanding of help‐seeking for these CYP, and define potential mediators (barriers and facilitators) and mechanisms of change associated with online peer support. Methods: Co‐production with 10 young co‐researchers (YCoR; aged 14–18 years) from the NeurOX Young People's Advisory Group (YPAG) included co‐development and triangulation to apply different research methods (i.e., interpretative phenomenological, thematic and conversation analyses) to analyse rich ethnographic material from 20 publicly available online message conversations between help‐seekers experiencing or questioning emotional abuse and neglect. A theoretical model of adolescent help‐seeking proposed by Rickwood et al. was used as a conceptual framework to guide methodological development. Results: The methodological approach facilitated the identification of barriers and facilitators of help‐seeking contextualized to the lives of these CYP: understanding and validating of abuse, emotional competence, fears and uncertainties around disclosure, knowledge, motivational factors and connection/trusted relationships. Notably, positive changes in expressed or perceived 'psychological state' and/or intention to seek help were noticed in 9 of 10 message threads that included a 'conversation' (≥3 posts). Themes associated with change related to connection with supportive peers; compassionate responding and the safeness of the online community. The existing adolescent help‐seeking model was found to be too simplistic to account for help‐seeking associated with emotional abuse and neglect. Conclusion: The novel methodological approach offers a meaningful way to explore 'real‐world' data with YCoR, for a population underrepresented in help‐seeking research. Proposed relational mechanisms involve connection, compassion and online communities. Further research coproduced with YCoR with diverse care experiences and characteristics is required to upscale the methodology and further validate and extend the findings. Public Contribution: The core study was co‐produced with 10 YCoRs from the NeurOX YPAG who have been involved in over 135 h on and offline work. Their roles involved co‐deciding the direction of the study, evolving methodology, detailed co‐analysis and reflective processes throughout all aspects of the study, interpretation, presentation and discussion of the findings with the NSPCC and Childline, and involvement in all communications. Additional consultation and involvement included further interested members of the NeurOX YPAG for the final online workshop and dissemination outputs. [ABSTRACT FROM AUTHOR]

Context: Patients and community members are engaged in nearly every aspect of health systems. However, the engagement literature remains siloed and fragmented, which makes it difficult to connect engagement efforts with broader goals of health, equity and sustainability. Integrated and inclusive models of engagement are needed to support further transformative efforts. Methods: This article describes the Ecology of Engagement, an integrated model of engagement. The model posits that: (1) Health ecosystems include all members of society engaged in health; (2) Engagement is the 'together' piece of health and healthcare (e.g., caring for each other, preventing, researching, teaching and building policies together); (3) Health ecosystems and engagement are interdependent from each other, both influencing health, equity, resilience and sustainability. Conclusion: The Ecology of Engagement offers a common sketch to foster dialogue on engagement across health ecosystems. The model can drive cooperative efforts with patients and communities on health, equity, resilience and sustainability. Patients and Public Contribution: Three of the authors have lived experiences as patients. One has a socially disclosed identity as a patient partner leader with extensive experience in engagement (individual care, education, research, management and policy). Two authors have significant experience as patients and informal caregivers, which were mobilized in descriptive illustrations. A fourth author has experience as an engaged citizen in health policy debates. All authors have professional lived experience in health (manager, researcher, health professional, consultant and educator). Six patient and caregiver partners with lived experience of engagement (other than the authors) contributed important revisions and intellectual content. [ABSTRACT FROM AUTHOR]

Introduction: This study sought to identify how diabetes organisations conceptualize the problem of diabetes‐related stigma and how this shapes the selection of stigma‐reduction interventions. Methods: A qualitative deliberative democratic methodology was used to access an informed dialogue about what should be done by diabetes organisations to address diabetes‐related stigma, drawing from the perspectives of board members, healthcare services staff, and communications and marketing staff from a single state‐wide diabetes organisation in Australia (n = 25). Results: Participants navigated the stigma concept along two axes: one that drew attention to either disease attributes or personal moral attributes as the object of stigmatisation, and one that positioned stigma as an individual or structural problem. This shaped the selection of stigma‐reduction interventions, which included interventions to: (i) reduce the prevalence of stigmatized attributes, (ii) correct misunderstandings about diabetes, (iii) modify representations of persons with diabetes, (iii) enhance coping amongst persons with diabetes and (iv) make healthcare more person‐centred and democratic. Conclusion: This study identified several grievances with 'diabetes‐related stigma', which are grievances that can be conceptualized and addressed at both individual and structural levels, and involve correcting misinformation about diabetes or challenging and communicating alternative representations of persons living with diabetes. Patient or Public Contribution: The organisation's management and board were consulted throughout all stages of research development, analysis and reporting. The information and vignettes presented to participants drew from illness narratives obtained from earlier research involving adults with type 2 diabetes. Research participants included adults with various diabetes types. [ABSTRACT FROM AUTHOR]

Background: Tailoring therapeutic education consists of adapting the intervention to patients' needs with the expectation that this individualization will improve the results of the intervention. Communication is the basis for any individualization process. To our knowledge, there is no guide or structured advice to help healthcare providers (HCPs) tailor patient education interventions. Objectives: We used a data‐driven qualitative analysis to (1) investigate the reasons why HCPs tailor their educational interventions and (2) identify how this tailoring is effectively conducted. The perspective aimed to better understand how to individualize therapeutic patient education and to disentangle the different elements to set up studies to investigate the mechanisms and effects of individualization. Design: Individual semistructured interviews with 28 HCPs involved in patient education were conducted. The present study complied with the COREQ criteria. Results: Why individualization is necessary: participants outlined that the person must be thought of as unique and that therapeutic education should be adapted to the patient's personality and cognitive abilities. The first step in the individualization process was formalized by an initial patient assessment. Several informal practices were identified: if needed, giving an individual time or involving a specific professional; eliciting individual objectives; reinforcing the relationship by avoiding asymmetrical posture; focusing on patients' concerns; leading sessions in pairs; and making the patient the actor of decisions. Conclusion: From our thematic data analysis, a model for tailoring patient education interventions based on the Haes and Bensing medical communication framework is proposed. The present work paves the way for evaluation, then generation of recommendations and finally implementation of training for individualization in educational interventions. Short Informative: Tailoring in therapeutic education consists of an adaptation to patients' needs. Communication is the basis for any individualization process. There is no model of patient‐centred communication in educational interventions. From semistructured interviews with HCPs, we propose a patient‐centred communication model for tailoring patient education intervention. [ABSTRACT FROM AUTHOR]

Objective To describe the content of newspaper articles about cervical cancer and the human papillomavirus (HPV) vaccine published in Appalachia and identify potential differences in coverage as compared to the content of newspaper articles published in non-Appalachia Ohio. Background Individuals rely on media as an important source of health information. Inadequate coverage of health issues may reinforce health inequities such as the elevated cervical cancer incidence and mortality rates in Appalachia Ohio. Methods A content analysis was conducted of all newspaper articles about cervical cancer and the HPV vaccine published in Appalachia and non-Appalachia Ohio during 2006. Findings A total of 121 published newspaper articles (42 in Appalachia and 79 in non-Appalachia) about cervical cancer and the HPV vaccine were identified. Articles published in Appalachia Ohio were significantly less likely than articles published in non-Appalachia Ohio to provide information about the threat of cervical cancer and the efficacy of the HPV vaccine. Specifically, few articles published in Appalachia included information about the ability of the vaccine to prevent cervical cancer, the cost of the vaccine and the availability of assistance programmes for the un- and underinsured. Conclusions Newspaper articles printed in the Appalachia region lacked vital information that could help promote uptake of the HPV vaccine. Health educators and healthcare providers should be aware that women from underserved geographic regions like Appalachia may have greater information needs regarding their risk of cervical cancer and the potential benefits of the HPV vaccine as compared to the general patient population. [ABSTRACT FROM AUTHOR]

Background: Despite intentions to increase user participation in the development of health services, the concept of participation and how it unfolds within studies with a participatory design has rarely been addressed. Objective: The aim of this study was to describe how user participation manifests itself within a co‐design process involving patients, significant others and health‐care professionals, including potential enablers or barriers. Methods: This study was conducted in the context of a co‐design process of a new person‐centred transition from a hospital to continued rehabilitation in the home involving three patients with stroke, one significant other and 11 professionals. Data were collected by observations during the workshops, semi‐structured interviews and questionnaires. Results: Four categories: 'Composition of individuals for an adaptive climate'; 'The balancing of roles and power'; 'Different perspectives as common ground for a shared understanding'; and 'Facilitating an unpredictable and ever‐adaptive process', with all together nine subcategories, resulted from the analysis. Participation varied between individuals, groups and steps within the process, and on the topic of discussions and the motivation to contribute. Discussion/Conclusion: Participation is not something that is realized by only applying participatory design methodology. Participation manifests itself through the interaction of the participants and their skills to handle different perspectives, roles and assignments. Participation is enabled by individual, group and facilitating aspects. Co‐design processes should allow for varying levels of participation among the participants and throughout the process. Patient or public contribution: Patients, significant others and health‐care professionals participated as co‐designers of a care transition model between hospital and home. [ABSTRACT FROM AUTHOR]

Background: Despite increasing attention to patient and family advisory councils (PFACs), what patients who are not PFAC members expect of PFACs remains understudied. Understanding their expectations is critical if PFACs are to help health systems achieve certain outcomes (eg increased patient satisfaction with health systems). Objective: To obtain rich insights about what patients who are not PFAC members expect of PFACs. Design: From July to September 2018, we conducted a qualitative study using focus groups. Setting and participants: We recruited patients and caregivers who receive their care from the Johns Hopkins Medicine Alliance for Patients (JMAP), LLC, a Medicare accountable care organization that in 2014 established a PFAC, the Beneficiary Advisory Council. Approach: Using grounded theory, we analysed field notes, analytic memos and transcripts to develop a theoretical model of patient engagement via PFACs. Results: Forty‐two patients and caregivers participated in five focus groups that included individuals of different ages, races, health statuses and socio‐economic statuses. Participants were largely unaware of PFACs. Participants wanted to know who represented them (interpreted as a form of political representation) and emphasized the need for representatives' diversity. Who mattered because who could affect what PFACs do. Participants expected that all patients should be able to communicate with PFACs and that meaningful engagement could enhance perceptions of health systems. Conclusions: Eliciting views about patient representation from patients who have not been engaged as advisors or representatives has the potential to inform PFACs' activities. Attention should be given to improving and measuring patients' awareness of, and interactions with, their patient representatives. [ABSTRACT FROM AUTHOR]

Abstract: Background: Neuropathic pain (NP) is a complex, chronic pain state initiated by a primary lesion or dysfunction of the nervous system and presents as a variety of symptoms across multiple disease states. Objective: To develop a patient‐centred conceptual model of symptoms and impacts in subjects with diabetic peripheral neuropathy (DPN) or post‐herpetic neuralgia (PHN) that can inform the measurement strategy in clinical trials. Method: Thirty subjects with DPN or PHN participated in in‐person interviews which were performed until saturation was achieved. Transcripts were analysed in ATLAS.ti. Results: Interviews were completed with DPN subjects (United States, n = 10; Japan, n = 10) and PHN subjects (United States, n = 5; Japan, n = 5). Numbness and tingling were frequently reported symptoms in the DPN population while itchiness and hypersensitivity were predominant in PHN. Both populations experienced burning and ache/soreness with similar frequency. DPN subjects experienced pain primarily in their lower extremity (eg feet, ankles), while PHN subjects experienced pain primarily in the chest and back. Impacts reported by DPN subjects included difficulty walking, sleep disturbance and climbing stairs. Impacts in PHN subjects included sleep disturbance, avoidance of physical contact, being angry/frustrated and being sad/depressed. Overall, concepts in Japan were not qualitatively different from the United States. Conceptual models of NP were generated based on the concepts elicited. Conclusions: This research highlights core concepts to measure from the patient's perspective. Moreover, it enables the assessment of existing measures, the possible modification of these measures, or if a new NP measure with improved sensitivity and responsiveness is merited. [ABSTRACT FROM AUTHOR]

Abstract: Background: To meet the challenge of multimorbidity in decision making, a switch from a disease‐oriented to a goal‐oriented approach could be beneficial for patients and clinicians. More insight about the concept and the implementation of this approach in clinical practice is needed. Objective: This study aimed to develop conceptual descriptions of goal‐oriented care by examining the perspectives of general practitioners (GPs) and clinical geriatricians (CGs), and how the concept relates to collaborative communication and shared decision making with elderly patients with multimorbidity. Method: Qualitative interviews with GPs and CGs were conducted and analyzed using thematic analysis. Results: Clinicians distinguished disease‐ or symptom‐specific goals, functional goals and a new type of goals, which we labelled as fundamental goals. “Fundamental goals” are goals specifying patient's priorities in life, related to their values and core relationships. These fundamental goals can be considered implicitly or explicitly in decision making or can be ignored. Reasons to explicate goals are the potential mismatch between medical standards and patient preferences and the need to know individual patient values in case of multimorbidity, including the management in acute situations. Conclusion: Based on the perspectives of clinicians, we expanded the concept of goal‐oriented care by identifying a three‐level goal hierarchy. This model could facilitate collaborative goal‐setting for patients with multiple long‐term conditions in clinical practice. Future research is needed to refine and validate this model and to provide specific guidance for medical training and practice. [ABSTRACT FROM AUTHOR]

Background By integrating Youth-Adult Partnerships (Y- APs) in organizational decision making and programming in health-care settings, youth can be engaged in decisions that affect them in a way that draws on their unique skills and expertise. Despite challenges, Y- APs can have many benefits for youth and adults alike, as well as for the programmes and initiatives that they undertake together. Objective This article describes the development, implementation and success of a Y- AP initiative at the McCain Centre at the Centre for Addiction and Mental Health, a large urban hospital. Method The McCain Y- AP implementation model was developed based on the existing literature, guided by the team's progressive experience. The development and implementation procedure is described, with indicators of the model's success and recommendations for organizations interested integrating youth engagement. Results The McCain Y- AP has integrated youth into a wide range of mental health and substance use-related initiatives, including research projects, conferences and educational presentations. The model of youth engagement is flexible to include varying degrees of involvement, allowing youth to contribute in ways that fit their availability, interest and skills. Youth satisfaction has been strong and both the youth and adult partners have learned from the experience. Discussion Through the McCain Y- AP initiative, youth engagement has helped advance numerous initiatives in a variety of ways. Flexible engagement, multifaceted mentorship, reciprocal learning and authentic decision making have led to a successful partnership that has provided opportunities for growth for all those involved. Health-care organizations interested in engaging youth can learn from the McCain Y- AP experience to guide their engagement initiatives and maximize success. [ABSTRACT FROM AUTHOR]

Background Conceptualizing health literacy as a relational concept, which involves how individuals interact with complex health and social systems, requires a greater understanding of the context of people's health experiences. Objectives To describe individuals' experiences of accessing, understanding, appraising and applying health information; explore the barriers and facilitators to using these skills; and to describe the experience of information exchange in health consultations. Design A longitudinal qualitative methodology with thematic analysis of interviews was used. Health literacy levels were assessed using the HLS- EU-47-Item Questionnaire. Findings are presented from the first round of data collection. Setting and participants Twenty-six participants purposefully selected from a CVD risk reduction programme at three separate time points. Results Four key themes identified: using health literacy capacities for managing health; psychological and structural factors that impact on these capacities; and the relationship quality with the health-care provider ( HCP). Although limited health literacy was prevalent across the sample (65%), all individuals were very proactive in attempting to utilize health literacy skills. Findings emphasize the importance of contextual factors such as the quality of communication with the health-care provider, perceptions of control, attitudes to family medical history, navigating structural barriers and being supported in managing treatment and medication side-effects. Discussion and Conclusion Findings are relevant for health-care providers in order to enhance the patient-provider relationship and to ensure optimum health outcomes for all individuals regardless of health literacy levels. [ABSTRACT FROM AUTHOR]

Background: Mental health care has lagged behind other health‐care domains in developing and applying shared decision making (SDM) for treatment decisions. This is despite compatibilities with ideals of modern mental health care such as self‐management and recovery‐oriented practice, and growing policy‐level interest. Psychiatric medication is a mainstay of mental health treatment, but there are known problems with prescribing practices, and service users report feeling uninvolved in medication decisions and concerned about adverse effects. SDM has potential to produce better tailoring of psychiatric medication to individuals' needs. Objectives: This conceptual review argues that several aspects of mental health care that differ from other health‐care contexts (e.g. forms of coercion, questions about service users' insight and disempowerment) may impact on processes and possibilities for SDM. It is therefore problematic to uncritically import models of SDM developed in other health‐care contexts. We argue that decision making for psychiatric medication is better understood in a broader way that moves beyond the micro‐social focus of a medical consultation. Contextualizing specific medication‐related consultations within longer term relationships, and broader service systems enables recognition of the multiple processes, actors and agendas that shape how psychiatric medication is prescribed, managed and used, and which may facilitate or impede SDM. Conclusion: A broad conceptualization of decision making for psychiatric medication that moves beyond the micro‐social can account for why SDM in this domain remains a rarity. It has both conceptual and practical utility for evaluating research evidence, identifying future research priorities and highlighting fruitful ways of developing and implementing SDM in mental health care. [ABSTRACT FROM AUTHOR]

The article presents a study which explains the use of distributed health literacy and determines how people living with long-term condition draw on their social network for support. The researchers use the longitudinal qualitative interview and observation study on the practice of health literacy. It implies that the distributed health literacy proves to be a potential resource in managing one's health, communicating with health professionals, and making health decisions.

Background: Compassion has been extolled as a virtue in the physician–patient relationship as a response to patient suffering. However, there are few studies that systematically document the behavioural features of physician compassion and the ways in which physicians communicate compassion to patients. Objective: To develop a taxonomy of compassionate behaviours and statements expressed by the physician that can be discerned by an outside observer. Design: Qualitative analysis of audio‐recorded office visits between oncologists and patients with advanced cancer. Setting and Participants: Oncologists (n = 23) and their patients with advanced cancer (n = 49) were recruited in the greater Rochester, New York, area. The physicians and patients were surveyed and had office visits audio recorded. Main Outcome Measures: Audio recordings were listened to for qualitative assessment of communication skills. Results: Our sensitizing framework was oriented around three elements of compassion: recognition of the patient's suffering, emotional resonance and movement towards addressing suffering. Statements of compassion included direct statements, paralinguistic expressions and performative comments. Compassion frequently unfolded over the course of a conversation rather than being a single discrete event. Additionally, non‐verbal linguistic elements (e.g. silence) were frequently employed to communicate emotional resonance. Discussion and Conclusions: This study is the first to systematically catalogue instances of compassionate communication in physician‐patient dialogues. Further refinement and validation of this preliminary taxonomy can guide future education and training interventions to facilitate compassion in physician–patient interactions. [ABSTRACT FROM AUTHOR]

Background: Patients with amyotrophic lateral sclerosis (ALS) face numerous decisions for symptom management and quality of life. Models of decision making in chronic disease and cancer care are insufficient for the complex and changing needs of patients with ALS. Objective: The aim was to examine the question: how can decision making that is both effective and patient‐centred be enacted in ALS multidisciplinary care? Setting and participants: Fifty‐four respondents (32 health professionals, 14 patients and eight carers) from two specialized ALS multidisciplinary clinics participated in semi‐structured interviews. Interviews were transcribed, coded and analysed thematically. Results: Comparison of stakeholder perspectives revealed six key themes of ALS decision making. These were the decision‐making process; patient‐centred focus; timing and planning; information sources; engagement with specialized ALS services; and access to non‐specialized services. A model, embedded in the specialized ALS multidisciplinary clinic, was derived to guide patient decision making. The model is cyclic, with four stages: ‘Participant Engagement’; ‘Option Information’; ‘Option Deliberation’; and ‘Decision Implementation’. Discussion: Effective and patient‐centred decision making is enhanced by the structure of the specialized ALS clinic, which promotes patients' symptom management and quality of life goals. However, patient and carer engagement in ALS decision making is tested by the dynamic nature of ALS, and patient and family distress. Our model optimizes patient‐centred decision making, by incorporating patients' cyclic decision‐making patterns and facilitating carer inclusion in decision processes. Conclusions: The model captures the complexities of patient‐centred decision making in ALS. The framework can assist patients and carers, health professionals, researchers and policymakers in this challenging disease environment. [ABSTRACT FROM AUTHOR]

The article presents the study that explores on the views and expectations of patients about osteopathic care in the private sector care in Great Britain. The topics discussed include ways of how their views impact their health care outcomes, the attributes of osteopathic medicine, and the qualitative method used in articulating patients' expectations on private osteopathic practice.

Background Involvement of mental health-care patients in the decision-making processes is considered to be an ethical requirement. Health-care systems worldwide are increasingly emphasizing the value of participatory approaches. There is, however, no consensus on the definition of patient involvement. The literature is particularly inconsistent and lacks clarity. Objective The purpose of this article is to clarify the concept of patient involvement in mental health care (MHC), taking into account its multidimensional nature. Search strategy We searched the literature in online databases from January 1998 until August 2010 using synonyms of 'patient involvement', combined with the terms 'mental health(care)'. Data synthesis Based on 45 different descriptions found in the literature, we constructed a definition of patient involvement and we drew up a model identifying its determinants and outcomes. Results We propose a comprehensive model of patient involvement to be used in MHC. This model can serve as a guide for policy makers and field workers to shape policies to stimulate involvement. Discussion and conclusions There are three main problems in the literature concerning patient involvement. First, there is a proliferation of conceptualizations of the topic, leading to conceptual vagueness. Furthermore, there is a lack of quantitative data, and some aspects of involvement remain underexposed, such as the involvement of specific target groups and practical ways to shape the involvement processes. Involvement processes should be tailored to the specific target group and context. [ABSTRACT FROM AUTHOR]

Background The provision of patient information leaflets (PILs) is an important part of health care. PILs require evaluation, but the frameworks that are used for evaluation are largely under-informed by theory. Most evaluation to date has been based on indices of readability, yet several writers argue that readability is not enough. We propose a framework for evaluating PILs that reflect the central role of the patient perspective in communication and use methods for evaluation based on simple linguistic principles. The proposed framework The framework has three elements that give rise to three approaches to evaluation. Each element is a necessary but not sufficient condition for effective communication. Readability (focussing on text) may be assessed using existing well-established procedures. Comprehensibility (focussing on reader and text) may be assessed using multiple-choice questions based on the lexical and semantic features of the text. Communicative effectiveness (focussing on reader) explores the relationship between the emotional, cognitive and behavioural responses of the reader and the objectives of the PIL. Suggested methods for assessment are described, based on our preliminary empirical investigations. Conclusions The tripartite model of communicative effectiveness is a patient-centred framework for evaluating PILs. It may assist the field in moving beyond readability to broader indicators of the quality and appropriateness of printed information provided to patients. [ABSTRACT FROM AUTHOR]

Objective To analyse the results of an action research process, the aim of which is to involve patients in fundamental psychiatric genomics research, against theoretical backgrounds that formulate a Dialogue Model for patient involvement. Background Mixed views continue to exist about the value, appropriateness and potential of involving consumers and patients in basic medical research. There is a need to learn from practical examples. Design An action research process was set up to facilitate and stimulate the involvement of a Dutch patient organization and a family organization in a psychiatric research consortium. Findings The premises and procedures of the Dialogue Model constitute good guidelines for involvement in fundamental research. However, the normative core features for patient involvement underlying the model prove problematic due to: (i) properties of complex psychiatric genomics research; (ii) the entanglement of subjectivity and basic psychiatric science; (iii) universal notions of citizenship and difficulties of delineating the patient in psychiatric genomics research. Conclusion Interaction and dialogue among scientists, patients and family members are possible in fundamental genomics research. The best approach for involvement would seem to be based on the creation of common ground and an evolving dialogue, which the guidelines of the Dialogue Model can provide. The challenge here will be to create also a dialogue on the normative anchor points of the dialogue process and to identify and monitor power relations inherent in these (tangible) dialogues. [ABSTRACT FROM AUTHOR]

Within medical and bioethical discourse, there are many models depicting the relationships between, and roles of, physician and patient in medical decision making. Contestation similarly exists over the roles of physician and patient with regard to the decision not to provide cardiopulmonary resuscitation (CPR) following cardiac arrest [the do-not-resuscitate or do-not-resuscitate (DNR) decision], but there is little analysis of patient perspectives. Analyse what patients with cancer within weeks before dying say about the decision to forego CPR and the roles of patient and physician in this decision. Discursive analysis of qualitative data gathered during semi-structured interviews with 28 adult cancer patients close to death and attending palliative or oncology clinics of an Australian teaching hospital. Participants' descriptions of appropriate patient or physician roles in decisions about CPR appeared related to how they conceptualized the decision: as a personal or a medical issue, with patient and doctor respectively identified as appropriate decision makers; or alternatively, both medical and personal, with various roles assigned embodying different versions of a shared decision-making process. Participants' endorsement of physicians as decision makers rested upon physicians' enactment of the rational, knowledgeable and compassionate expert, which legitimized entrusting them to make the DNR decision. Where this was called into question, physicians were positioned as inappropriate decision makers. When patients' and physicians' understandings of the best decision, or of the preferred role of either party, diverge, conflict may ensue. In order to elicit and negotiate with patient preferences, flexibility is required during clinical interactions about decision making. [ABSTRACT FROM AUTHOR]