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Background: Public involvement in health services research is encouraged. Descriptions of public involvement across the whole research cycle of a major study are uncommon and its effects on research conduct are poorly understood. Aim: This study aimed to describe how we implemented public involvement, reflect on process and effects in a large‐scale multi‐site research study and present learning for future involvement practice. Method: We recorded public involvement roles and activities throughout the study and compared these to our original public involvement plan included in our project proposal. We held a group interview with study co‐applicants to explore their experiences, transcribed the recorded discussion and conducted thematic analysis. We synthesized the findings to develop recommendations for future practice. Results: Public contributors' activities went beyond strategic study planning and management to include active involvement in data collection, analysis and dissemination. They attended management, scrutiny, planning and task meetings. They also facilitated public involvement through annual planning and review sessions, conducted a Public Involvement audit and coordinated public and patient input to stakeholder discussions at key study stages. Group interview respondents said that involvement exceeded their expectations. They identified effects such as changes to patient recruitment, terminology clarification and extra dissemination activities. They identified factors enabling effective involvement including team and leader commitment, named support contact, building relationships and demonstrating equality and public contributors being confident to challenge and flexible to meet researchers' timescales and work patterns. There were challenges matching resources to roles and questions about the risk of over‐professionalizing public contributors. Conclusion: We extended our planned approach to public involvement and identified benefits to the research process that were both specific and general. We identified good practice to support effective public involvement in health services research that study teams should consider in planning and undertaking research. Public Contribution: This paper was co‐conceived, co‐planned and co‐authored by public contributors to contribute research evidence, based on their experiences of active involvement in the design, implementation and dissemination of a major health services research study. [ABSTRACT FROM AUTHOR]

Background: Co‐production is predicated on equal power‐sharing and responsibility in research partnerships. However, relatively few accounts exist that explore the subjective experience of how co‐researchers achieve such equality, from the perspectives of public contributors and researchers. Aim: This paper aims to provide a unique insight into the process of co‐production, by weaving personal reflections with principles to evaluate the impact arising from co‐produced knowledge. It is based upon participatory research that was initiated by a 'lay' person, on behalf of a community organization, seeking support for Somali families who are affected by autism. The paper explores the evolving partnerships that began with community theatre and qualitative research and leading to extensive dissemination and impact, all of which has been jointly owned and negotiated by the co‐researchers and community organizations. Discussion: Initially, this paper reflects on the process, drawing on principles defined for co‐production in health research and combining it with the co‐researcher's personal reflections of their experiences as insiders and outsiders, stepping in and out of each other's worlds. The value of reciprocity, flexibility and continuous reflection is illustrated. The latter part of the paper explores the impact of this co‐produced knowledge using a theoretical framework, to assess the specific impacts and its broader transformative potential. It demonstrates how (1) opportunities for all partners to be equitably involved to the maximum degree possible throughout the research process can affect social change and (2) co‐produced research can become a catalyst that is dynamic and complex, achieving multi‐layered impact. [ABSTRACT FROM AUTHOR]

Open systems possess a dilemma whereby they both depend upon‐and are subject to disruptions arising from‐their exogenous environments. Organisations display this dilemma through the need to both manage the inbound flow of supply from upstream nodes and outputs towards downstream customers, whilst also managing issues arising from interactions with these other systems. At the centre of this dilemma sits individual agents, whether they be managers of organisations, business‐level functions or customer‐facing roles. This paper explores how individuals perceive and react towards disruptions and the wider, systemic implications of their actions. This article uses interviews with individuals based on a theoretical framework incorporating general systems theory (GST) and a series of decision theories (namely Protection Motivation Theory) to highlight the commonalities across various actions and strategies that individuals can undertake to address disruptions. [ABSTRACT FROM AUTHOR]

Introduction: British South Asians have a higher prevalence of overweight and obesity than the wider population. Bradford (UK), with its high Pakistani presence and levels of economic deprivation, has exceptionally high instances, especially in deprived areas where many Pakistanis reside. British Pakistani women in Bradford are more likely to be overweight and obese. There is uncertainty on how these women can be aided to manage their weight. Therefore, the objective of this study was to explore the obesity concerns of Pakistani women living in deprived inner‐city areas of Bradford. Methods: Three focus groups interviews were carried out with 23 Pakistani women living in deprived areas of Bradford. Data were analysed thematically. Results: This exploratory study identified a wide range of concerns that women had around managing their weight. Participants disclosed distrust in information given around medication, conflicting dietary information and reported low levels of trust in women‐only organized physical activities. Cultural barriers were identified, which included the gender role of the woman, the lack of culturally appropriate dietary advice, cultural misunderstandings of what constitutes a healthy diet and healthy weight, the lack of culturally suitable exercise facilities and conforming to family and community expectations. Other concerns were language barriers around a lack of understanding, the inability to read Urdu and reliance on others to translate information. Conclusion: These findings have implications for researchers, local authorities, policy makers and others with an interest in reducing the rates of obesity in this population. Recommendations include training health practitioners to be culturally aware of the diet and eating practices of this community, exploring different ways to support socially isolated women to be more physically active at home, addressing physical activity and diet misconceptions and designing obesity management information materials appropriate for a range of literacy levels. Patient or Public Contribution: Public contributors were involved in the development of the interview guide and design of the research. A pilot focus group with participants not included in the present paper was used to help test and refine the focus group questions. Interview transcripts were member checked by participants, and participants assisted with data analysis. [ABSTRACT FROM AUTHOR]

Background & Objective: Epidermolysis bullosa (EB) is the term used for a group of genetic skin fragility disorders. For those living with EB, pain represents a constant challenge, with blistering and tasks such as changing dressings, adding to the distress. This paper focuses on describing and exploring the health‐care needs of children, adults and families who are affected by EB. The specific aim of the paper is to identify the needs of the EB population with a view towards informing the development of a community liaison service to support adults living with EB and the parents/carers of children living with EB. Setting and Participants: Interviews with six adults and the parents of eight children with EB were conducted. The data were analysed thematically. All participants were resident on the island of Ireland and are therefore reflecting on services in this geographic region. Results: Participants' needs were grouped into five themes: support managing physical health‐care issues; access to community/home‐based services; EB‐specific information and psychosocial support; effective interaction with health‐care professionals; and advice regarding benefits and entitlements. Discussion and Conclusions: This article represents the health‐care needs and preferences of a broad spectrum of those with EB, highlighting the need for a comprehensive service regardless of the severity of the condition. [ABSTRACT FROM AUTHOR]

Background: Patient and Public involvement (PPI) has rapidly evolved into a key component in shaping the delivery of health services. However, little is known about what it is like to participate in involvement procedures that include representatives of multiple groups and in the context of developing new interventions for Child and Adolescent Mental Health Services (CAMHS). Objective: This study explored participants' experiences of PPI, following attending a 'consensus conference', during which their views were sought in relation to the development of a proposed staff‐based intervention and key questions about its design and implementation. Design: Qualitative, semi‐structured interview study. Setting and Participants: Six participants, including service users and various frontline clinical staff team members, who had experience of CAMHS were present at the consensus conference and then asked about their experiences of being involved via semi‐structured interviews. The data were analysed using Interpretative Phenomenological Analysis (IPA). Young people, carers and frontline staff have been involved in the design and implementation throughout the broader programme of work of which this study forms part, although these groups were not directly involved in the design and implementation of this paper. Results: Three key narratives were present: (a) Previous Experiences Driving Expectations, (b) 'We are all in the same boat' and (c) The Realization of Multiple Identities. The results suggest that PPI involvement is a complex process that may be driven by positive/negative expectations, but that individuals value learning about others and recognizing different perspectives while reaching shared goals in improving services. Discussion and Conclusion: This study demonstrates the complexity of experience that service users and clinical staff face when engaging in involvement activities in CAMHS. The findings demonstrate the value in engaging multiple stakeholder groups while also highlighting the importance of proper consideration of the procedures involved and facilitators of engagement. [ABSTRACT FROM AUTHOR]

Aim: The purpose of this study was to explore the perceived benefits and challenges of online distance education and computer‐based testing (CBT) among registered nurses and midwives in a sample of government‐owned health facilities and health training institutions in Ghana. Design: Exploratory descriptive qualitative design. Methods: Individual semi‐structured interviews were conducted with 45 participants (i.e. 25 nurses and 20 midwives). The data were manually processed and analysed using Braun and Clarke's thematic analysis approach (November 2019‐February 2020). Results: Nurses and midwives prefer online distance education for three reasons: convenience, cost‐effectiveness and learning centre proximity to the workplace. The course schedule's flexibility allowed participants to work and study simultaneously. Others acknowledged online distance education as a viable option for overcoming the challenges of obtaining study leave. However, the lack of recognition of certificates by some employers, poor Internet connectivity and perceived excessive course load were noted as deterrents. Regarding the CBT, many of the participants said that it was useful. Among the advantages of CBT are: (1) a decrease in examination malpractices, (2) a decrease in examination costs and (3) a rise in students' interest in information, communication and technology (ICT). This finding emphasizes the necessity of integrating ICT into nursing and midwifery education and examinations, as well as maximizing its benefits. [ABSTRACT FROM AUTHOR]

Introduction: A growing body of research is examining how healthcare systems are responding to the increasing numbers of migrants and the resulting superdiversity of patients. The aim of this article is to identify and explain communication barriers in the provision of healthcare to Ukrainian war refugees in the Czech Republic from the perspectives of healthcare professionals and intercultural mediators. Methods: The exploratory case study is based on a qualitative analysis of semi‐structured interviews with frontline health professionals: 20 with doctors and 10 with nurses. The second source of data is two focus groups aimed at capturing communication problems from the perspective of intercultural mediators who accompany refugees to health facilities. The interview transcripts and FGs were analysed using six‐stage thematic coding. Results: The survey identified five main themes related to barriers to communication: (1) language barriers and interpreting, (2) cultural barriers, (3) differing expectations of health and the healthcare systems in the Czech Republic and Ukraine, (4) prejudices and negative attitudes and unethical behaviour towards refugees and migrants and (5) lack of awareness of patient rights. Conclusions: The arrival of large numbers of migrants has highlighted deficiencies in the system that may affect other vulnerable groups and the general population. These include the lack of general communication skills and legal awareness among many health professionals, which are barriers to the development of patient‐centred care. The involvement of intercultural mediators fundamentally improves communication between health professionals and (not only) migrant patients. Nevertheless, it is necessary to legally anchor and define the position of intercultural mediators within the healthcare system. Patient or Public Contribution: Collaboration with intercultural mediators who interpreted the extensive experiences of Ukrainian refugee patients and also have personal experience as migrant or migrant‐origin patients contributed to shaping research questions, facilitating study participation and enriching evidence interpretation. Researchers with multicultural backgrounds and experience with working with people from refugee backgrounds were involved in the study design and analysis. [ABSTRACT FROM AUTHOR]

Introduction: Qualitative research on the perceptions of healthcare professionals involved in cancer care about their respective roles in the patient care pathway is limited. Therefore, the aim of this qualitative study was to document these perceptions. Methods: A multidisciplinary team that included patient researchers constructed a semi‐structured interview guide on the perceptions of the colorectal cancer care pathway by professionals. Interviews were conducted with healthcare professionals from two French hospitals that manage patients with colorectal cancer. Then, the interviews were fully transcribed and analysed by the whole multidisciplinary team. Results: Thirteen healthcare professionals were interviewed (six nurses, four physicians, one psychologist, one social worker and one secretary). They described the colorectal care pathway using a great lexical diversity and listed a significant number of professionals as taking part in this pathway. Among the people mentioned were healthcare professionals working inside and outside the hospital, family members and non‐conventional medicine practitioners. However, they did not spontaneously mention the patient. Their views on the role of the referring physician, the general practitioner and the patient were further explored. The interviews highlighted the coordination difficulties among the various professionals, particularly between general practitioners and hospital teams. These data provided interesting elements for developing a tool to help coordination among professionals. Conclusions: This preliminary study, with its participatory design, brings interesting elements of reflection on the care pathway for patients with colorectal cancer. It will continue through the creation of a larger participatory project. Patient or Public Contribution: Patient partners were included in all steps of this study. This transdisciplinary project was coordinated by a group composed of three patient partners, two healthcare professionals and two humanities and social sciences researchers. Their knowledge of the patient's perspective on the care pathway enriched discussions from the study design to results analysis. [ABSTRACT FROM AUTHOR]

Introduction: Indigenous women experience high rates of family violence‐related head injuries. At present, lived experience accounts from Indigenous women are absent, which results in incomplete understandings and inadequate responses that have detrimental impacts on them and their families. The aim of this study was to gain insight into Indigenous women's personal and family perspectives regarding violence‐related traumatic brain injury (TBI), including impacts on life, as well as decision‐making processes about healthcare access and engagement. Methods: Purposeful sampling was used to complete semi‐structured interviews with 18 Indigenous women living in regional and remote Australia who had experienced TBI from family violence. The data from these interviews were augmented by data from interviews and focus groups with 28 community members, including family members or carers of Indigenous women living with TBI from family violence. Results: Three themes were conceptualised based on the data and research aims: interweaving of the past and the present—ways women experience brain injury; factors that inform decision‐making to access healthcare; and managing everyday changes that result from TBI from family violence. Indigenous women described living with a range of symptoms following repeated head injuries including problems with memory, cognition and concentration. A range of strategies to manage long‐term symptoms of TBI were used by Indigenous women and when they did seek healthcare, Indigenous women were required to navigate a range of barriers. Conclusions: The findings identify a range of gaps in healthcare and housing supports for Indigenous women with TBI from violence, highlighting the significant investment needed to develop responsive and appropriate pathways of care in regional and remote areas. A range of suggestions are discussed including development of a specialised workforce who can provide apppropriate follow‐up support, co‐designed concussion clinics and educational resources. TBI must also be a key aspect of policy and practice for services working with Indigenous women who have experienced violence to ensure appropriate responses are provided. Public or Patient Contribution: Indigenous women shared their views and experiences of TBI from family violence as well as decision‐making about accessing healthcare and managing TBI symptoms. As such, study participants provided public contributions to the research. [ABSTRACT FROM AUTHOR]

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Introduction: Globally, there is an increasing demand for quality medical rehabilitation services. This is the first article of a two‐part series showing the findings from the Rehabilitation Choices study in which the main aim was to understand the current landscape of decision‐making, enablers and barriers to access appropriate rehabilitation services in the Australian setting. In Part 1, these insights were sought from a healthcare professionals' perspective. Methods: This was an exploratory, qualitative study, using semi‐structured interviews with a discussion guide that was codesigned together with rehabilitation clinicians and rehabilitation researchers. Themes and sub‐themes were identified using an inductive approach. Results: We interviewed a heterogeneous group of 31 professionals who are involved in making referral decisions about rehabilitation or who design and deliver rehabilitation programs, including specialist rehabilitation physicians and other medical doctors across in‐patient, outpatient, and primary care settings, allied health professionals, rehabilitation service managers, nurses, multicultural health liaison officers and rehabilitation research scientists. Three key themes relevant to barriers and enablers to service access were identified from the data: defining rehabilitation; a lack of timely access to patient and rehabilitation service data; and patient diversity not expected by the system. Conclusions: Healthcare professionals who make decisions about rehabilitation referrals and services feel that it was necessary for them to keep up to date with information relating to rehabilitation services. There was some concern regarding what rehabilitation constituted and what services were available for different clinical indications. They also indicated that current systems did not consider diversity among patients' needs and goals. Their recommendations included the need for better communication pathways, improved referral systems and resources that could help provide best practice of rehabilitative care in the future. Patient or Public Contribution: Three study team members had a lived experience of rehabilitation as a patient or carer, and previous experience participating in qualitative research. They worked with the study team to codesign the recruitment strategy, participant‐facing communications, the interview discussion guide, and the approach to the conduct of activities with participants and in the interpretation and contextualization of findings and all were involved in writing this manuscript. [ABSTRACT FROM AUTHOR]

Objective. To summarize findings from a systematic exploration of existing literature and views regarding interdisciplinarity, to discuss themes and components of such work, and to propose a theoretically based definition of interdisciplinary research. Data Sources/Study Setting. Two major data sources were used: interviews with researchers from various disciplines, and a systematic review of the education, business, and health care literature from January 1980 through January 2005. Study Design. Systematic review of literature, one-on-one interviews, field test (survey). Data Collection/Extraction Methods. We reviewed 14 definitions of interdisciplinarity, the characteristics of 42 interdisciplinary research publications from multiple fields of study, and 14 researcher interviews to arrive at a preliminary definition of interdisciplinary research. That definition was then field tested by 12 individuals with interdisciplinary research experience, and their responses incorporated into the definition of interdisciplinary research proposed in this paper. Principal Findings. Three key definitional characteristics were identified: the qualitative mode of research (and its theoretical underpinnings), existence of a continuum of synthesis among disciplines, and the desired outcome of the interdisciplinary research. Conclusion. Existing literature from several fields did not provide a definition for interdisciplinary research of sufficient specificity to facilitate activities such as identification of the competencies, structure, and resources needed for health care and health policy research. This analysis led to the proposed definition, which is designed to aid decision makers in funding agencies/program committees and researchers to identify and take full advantage the interdisciplinary approach, and to serve as a basis for competency-based formalized training to provide researchers with interdisciplinary skills. [ABSTRACT FROM AUTHOR]

Introduction: This study sought to explore the meaning of the recovery process and its stages from the perspective of people attending a mental health day hospital. Methods: A descriptive exploratory qualitative study was carried out. Semi‐structured interviews were conducted with people attending a mental health day hospital. The data were analysed deductively by means of content analysis. Results: The participants described the recovery process as a process based on three pillars; the attitude towards recovery, hardship, and the effort required throughout the process. Regarding the stages of recovery, for the participants in the first stage of the process (Moratorium), the search for hope was the most important element. In the second stage (Awareness), the reestablishment of their identity, through the acceptance of the consequences derived from the mental health problem, together with being able to feel full and fulfilled, were the most outstanding elements. In the third stage (Preparation), participants highlighted the search for meaning in life, facing their fears and the process with an open mind. Finally, the last two stages (Rebuilding and Growth) were related to taking responsibility and empowerment for recovery. Conclusions: The results of this study provide insight into the perception of the recovery process and its stages in people attending a mental health day hospital. These findings may contribute to aligning the nurse–patient perspective, helping nurses to understand the key elements of patients according to their stage of recovery, and thus be able to subsequently individualise interventions. Patient and Public Contribution: This study was based on interviews with 15 patients receiving treatment at an adult mental health day hospital. This study would not have been possible without their participation. [ABSTRACT FROM AUTHOR]

Introduction: People should have access to healthcare services that are effective, safe and secure, patient‐centred, and coordinated and continuous. One group that has consistently reported negative experiences and feels dissatisfied with services are patients with Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS). The objective of this study was to develop a deeper understanding of the experiences of dissatisfaction among ME/CFS patients and explore the reasons for such dissatisfaction. Methods: We conducted in‐depth interviews with 48 people from 24 households (comprising patients and family members), providing insight into the experiences of 37 ME/CFS sufferers in Norway. The participants were purposively sampled and included persons of different ages, genders, time since having the condition (3–30 years), and severity. Results: Four main themes were developed: (1) 'Nonexistent services' cover patients' experience that healthcare services had nothing to offer them after receiving their ME/CFS‐diagnosis. (2) 'Nonpersonalised services' documents experiences where patients did receive services, which in theory was appropriate for relieving a specific health problem, but in practice were experienced as inappropriate because they were not adapted to the patient's need. (3) 'Slow services' address patients' experience of getting services too late (or too little) to be useful. (4) 'Wrong services' comprise patients' experiences of being offered and/or 'forced' to accept services that they felt were inappropriate for their health problems. Conclusions: Providers' lacking knowledge of the condition and lack of precise recommendations for follow up may partly explain unsatisfactory experiences. Providers' belief (or disbelief) in the condition could furthermore influence caregiving. Also, systemic issues in the healthcare sector, like high workloads and bureaucracy, can negatively affect care provision. Finally, users' unsatisfactory experiences may also be due to a lack of patient involvement in the design of such services. Further research should investigate how patients can be involved in service design, and also providers' perspectives on caregiving and the barriers they experience for providing high‐quality care. Patient or Public Contribution: The ME‐patient organisation suggested research topics to the call from which this study got funding. Patients and caregivers provided feedback during analysis and interpretation of data. [ABSTRACT FROM AUTHOR]

Background and objective: End‐stage renal disease (ESRD) affects a multitude of aspects in the patient's daily life, often entailing their own involvement in various aspects of the treatment. Although patient participation is a core health‐care value, what the concept signifies is not yet fully known. The purpose of this paper is to conceptualize patient participation in dialysis care, depicting patients' and health‐care professionals' perspectives. Design: This explorative study employed qualitative interviews and content analysis. Setting and participants: Seven focus group discussions engaging 42 key informants were performed, including patients, staff and managers with experience of dialysis care. Results: In dialysis care, patient participation connotes a sharing of information and knowledge, the learning of and planning of care, including partaking in shared decisions with regards to treatment and management, and being involved in the management of one's own health‐care treatment and/or self‐care activities. Although these attributes were illustrated by all stakeholders, their significance varied: patients suggested that their preferences regarding primary aspects of participation vary, while staff considered patients' performance of dialysis to be the ultimate form of participation. Further, while patients considered multiple ways to execute participation, staff suggested that aspects such as sharing information were a route to, rather than actual, involvement. Conclusions: Without a common understanding to denote the idea of patient participation, staff and patients are exposed to a potential deficit in terms of facilitating patient participation in everyday encounters of dialysis treatment. Further studies and means to serve a mutual understanding are needed. [ABSTRACT FROM AUTHOR]

Background: Person‐centred goal planning is increasingly being incorporated into healthcare interventions. People experiencing severe and persistent mental illnesses (SPMIs) have high levels of co‐occurring health conditions, reducing their life expectancy when compared with the general population. As medications are commonly used in the treatment of SPMIs, community pharmacists are well‐placed to support the health and wellbeing of this population. Objectives: To examine pharmacists' and service users' experiences of goal planning as a component of a community pharmacy‐based health intervention for people experiencing SPMIs (PharMIbridge intervention). Methods: This study utilised a qualitative exploratory approach with an interpretive description method. Semistructured interviews were undertaken with community pharmacists (n = 16) and service user participants (n = 26) who had participated in pharmacist support services for people experiencing SPMIs (PharMIbridge intervention). Results: Four themes relating to goal planning were identified. First, goal planning provided purpose and motivation for participation in the intervention. Planning realistic goals was important but often challenging. Both pharmacists and service users highlighted the relational aspects of goal planning and how strong relationships supported positive behaviour change and outcomes. Finally, individualised and flexible approaches were important aspects of the intervention, ensuring goals were meaningful to service users. Conclusions: The findings from this study identified positive outcomes from the inclusion of goal‐planning processes in a community pharmacy‐based health intervention. Further research regarding tools, strategies or training that could support future goal‐planning interventions in primary healthcare is needed. Patient or Public Contribution: The PharMIbridge randomised controlled trial research team included lived experience members and was overseen by an expert panel that included members with a lived experience of mental illness and representatives from key organisations. The training provided to pharmacists was co‐designed and co‐delivered by the researchers and lived experience representatives, and pharmacists were supported by lived experience mentors. Service user participants were invited to participate in the interviews through a number of pathways (e.g., at the completion of the intervention, flyers). Those interested were provided with the full study participant information and provided with a $30 gift voucher at the conclusion of the interview. [ABSTRACT FROM AUTHOR]

To elicit patients' views on whether they could contribute to improvements in their care by carrying their own health information to clinician encounters; and to consider the implications for the development of a patient-held health file (PHF). Increasing rates of chronic disease lead to health care being delivered by multiple care providers often at distributed geographic locations. As a way of increasing the availability of patient information to care providers our project will trial a PHF. Patients carry these files to doctors' appointments where clinicians record data for other doctors or the patient. Increasing the availability of patient information is anticipated to enhance the safety and quality of care delivery and improve health outcomes. Qualitative semi-structured interviews were conducted with 10 patients. Participants were evenly distributed in terms of gender, aged 60 years or greater and visited at least two specialists and one general practitioner. In this exploratory study, patients who were currently active in decision making about their own health already recorded some health information. They were receptive to carrying their information and thought they should take some responsibility for their health. Patients who were more passive in making decisions about their health did not perceive a need to carry their own information and felt that their doctors communicated adequately. Patient-held health files provide an opportunity for patients to access their health information. Such files have the potential to improve health outcomes for patients who adopt both active and passive roles in relation to their own health and engaging with their health information. [ABSTRACT FROM AUTHOR]

Introduction: Patients' and companions' participation in healthcare could help prevent adverse events, which are a significant cause of disease and disability. Before designing interventions to increase participation, it is first necessary to identify attitudes to patient safety. This study aimed to explore patients' and companions' perceptions, attitudes and experiences of patient safety, taking into account contextual factors, such as cultural background, which are not usually captured in the literature. Methods: We conducted a qualitative study with a theoretical sampling of 13 inpatients and 3 companions in a university hospital in Barcelona, Spain. Information was obtained from individual and triangular interviews. A descriptive thematic content analysis was conducted by four analysts and a consensus was reached within the research team on the key categories that were identified. We also conducted a card‐sorting exercise. Results: All informants emphasized the role of good communication with health professionals, a calm environment and the need for patient education. Discursive positions differed by cultural background. Informants from a Pakistani–Bangladeshi background emphasized language barriers, while those from European and Latin‐American backgrounds stressed health professionals' lack of time and the need for more interdisciplinary teamwork. The card‐sorting exercise identified several opportunities to enhance participation: checking patient identification and medication dispensation, and maintaining personal and environmental hygiene. Conclusion: This exploration of informants' discourse on patient safety identified a wide variety of categories not usually considered from institutional perspectives. The findings of this study could enrich interventions in areas with diverse cultural backgrounds, as well as current frameworks based exclusively on institutional perspectives. Patient or Public Contribution: The results of the study were communicated to patients and accompanying persons via telephone or email. Similarly, a focus group was held with a patient forum to comment on the results. In the design of subsequent interventions to improve patient safety at the hospital, the proposals of patients and companions for their participation will be included together with healthcare professionals' opinions. [ABSTRACT FROM AUTHOR]

Aim: We explore how nurses navigate competing work demands in resource‐constrained settings and how this shapes the enactment of nursing roles. Design: An exploratory‐descriptive qualitative study. Methods: Using individual in‐depth interviews and small group interviews, we interviewed 47 purposively selected nurses and nurse managers. We also conducted 57 hours of non‐participant structured observations of nursing work in three public hospitals. Results: Three major themes arose: (i) Rationalization of prioritization decisions, where nurses described prioritizing technical nursing tasks over routine bedside care, coming up with their own 'working standards' of care and nurses informally delegating tasks to cope with work demands. (ii) Bundling of tasks describes how nurses were sometimes engaged in tasks seen to be out of their scope of work or sometimes being used to fill for other professional shortages. (iii) Pursuit of professional ideals describes how the reality of how nursing was practised was seen to be in contrast with nurses' quest for professionalism. [ABSTRACT FROM AUTHOR]

Aims: To explore and describe nurse educators' suggestions regarding a digital educational resource addressing quality in placement studies for first‐year student nurses in nursing homes. Design: A qualitative, explorative, and descriptive research design. Methods: Focus group interviews with eight nurse educators and individual interviews with six nurse educators. The interviews were audio‐recorded and transcribed verbatim; subsequently, data were analysed in lines with content analysis as described by Graneheim and Lundman. Results: The analysis revealed three main categories: 'Suggestions for a digital educational resource to strengthen and support nurse educators' role in follow‐up students', 'Suggestions for a digital educational resource to complement and support interaction between stakeholders in placement', and 'Suggestions for a digital educational resource to facilitate student nurses' learning processes'. The categories were captured by the overarching theme, 'A digital educational resource facilitating interaction between stakeholders and students' learning processes. Conclusion: This study revealed nurse educators' suggestions regarding design elements, content, and use of a digital educational resource addressing placement studies for first‐year student nurses' in nursing homes. Implications for the profession and/or patient care: Nurse educators should be involved in designing, developing, and implementing digital educational resources aiming to support student learning in nursing education placement studies. Impact: This study explored nurse educators' suggestions for a digital educational resource. They suggested a digital educational resource to strengthen and support their role, support interaction between stakeholders, and facilitate student nurses' learning processes. Further, they suggested a digital educational resource to be used as a supplement rather than as a replacement for nurse educators' physical presence in placements. Reporting method: The Consolidated Criteria for Reporting Qualitative Research reporting guidelines were used. No Patient or Public Contribution. [ABSTRACT FROM AUTHOR]

Background: Currently, there is a lack of interaction between research and healthcare practice. As a result, research findings reach healthcare practice only late, and topics relevant to practice are often not known in research. Involving people living with dementia (PlwD), their relatives and healthcare providers in dementia care research can accelerate this process. For inclusion, firm and reliable structures are needed, which are to be established with the help of the Translational Network for Dementia Care Research in Germany. However, there is only limited knowledge about the priorities, expectations and conditions of stakeholders (healthcare providers and dementia researchers) for such cooperation within a network. Objectives: The aim is to gather stakeholders' views on (i) future research topics to be addressed within the dementia care research network, (ii) the nature of collaboration within the network and (iii) the facilitating and hindering factors for establishing such a network. Methods: Within an exploratory sequential mixed‐method study, we interviewed 87 stakeholders within eleven semistructured focus group interviews. The interviews were transcribed, pseudonymized and analyzed using qualitative content analysis. The qualitative data were analyzed with MAXQDA. Based on the qualitative results found in the focus group interviews, a supplementary online questionnaire was developed to prioritise and rank these findings afterwards. Results: Stakeholders prioritized a comprehensible transfer of research results into practice, increased involvement of PlwD and their relatives (additionally marginalized groups such as people with a migrant background) in research and exchange between researchers. Cooperation should preferably occur in a regional context with local contacts, and the latest research results should be made available via an online database. The stakeholders' time, finances and human resources should be considered. Conclusion: Stakeholders have partly similar preferences and goals for cooperation and involvement, emphasizing that such interaction in a network offers the possibility of long‐term, effective collaboration and added value for practice and research. Patient or Public Contribution: For this study, dementia healthcare providers and dementia care researchers were asked about their perspectives. Their involvement is further elucidated in the manuscript text. [ABSTRACT FROM AUTHOR]

Background: Human papillomavirus (HPV) self‐sampling has shown to be acceptable and feasible across cultures and effective in reaching women who do not participate in regular cervical cancer screening. However, most of these studies have included younger women. There is a lack of knowledge of how older women reason about HPV self‐sampling. Objective: The aim of this study was to describe how women (>60 years old) experience the offering of self‐sampling of HPV, compared to having a sample collected by a healthcare professional. Design and Participants: The study had a qualitative explorative design. Four focus group discussions were conducted with women 60–69 years old (n = 22). Data were analysed using principles of interpretive description. Results: Five themes were identified: self‐sampling—convenient and without pain, lack of knowledge, worries related to HPV self‐sampling, need for information and taking a societal perspective. Conclusion: Women aged >60 years found that HPV self‐sampling was convenient and easy to perform. Further, they stressed the importance of being able to remain in the screening programme in advanced age and that self‐sampling could be a possible solution. This study also revealed a lack of knowledge among women in this age group regarding HPV infection, how the disease is transmitted and its relation to cervical cancer. Public Contribution: Women who had performed HPV self‐sampling participated in the focus group discussion. [ABSTRACT FROM AUTHOR]

Aim: The aim of the study was to describe continuity from the perspective of working as an agency nurse (AN). Design: Qualitative design was applied using individual semi‐structured interviews. Method: Individual interviews with fifteen registered nurses working at agency companies were conducted in 2020. The interviews were analyzed with thematic analysis. The study followed the guidelines addressed in the COREQ (Consolidated Criteria for Reporting Qualitative Research) framework. Results: Thematic analysis yielded one theme ‐ standing strong and taking command ‐ and four categories: being competent and experienced, being prepared and at ease, ensuring an unbroken chain of care, and belonging on my own terms. The categories illustrated the engagement, professionalism, and natural leadership showed by the ANs to uphold quality and continuity. [ABSTRACT FROM AUTHOR]

Background: Health care providers (HCPs) in the emergency department (ED) frequently must decide whether to conduct or forego confidential conversations with adolescent patients about sensitive topics, such as those related to mental health, substance use, and sexual and reproductive health. The objective of this multicenter qualitative analysis was to identify factors that influence the conduct of confidential conversations with adolescent patients in the ED. Methods: In this qualitative study, we conducted semistructured interviews of ED HCPs from five academic, pediatric EDs in distinct geographic regions. We purposively sampled HCPs across gender, professional title, and professional experience. We used the Theoretical Domains Framework (TDF) to develop an interview guide to assess individual and system‐level factors affecting HCP behavior regarding the conduct of confidential conversations with adolescents. Enrollment continued until we reached saturation. Interviews were recorded, transcribed, and coded by three investigators based on thematic analysis. We used the coded transcripts to collaboratively generate belief statements, which are first‐person statements that reflect shared perspectives. Results: We conducted 38 interviews (18 physicians, 11 registered nurses, five nurse practitioners, and four physician assistants). We generated 17 belief statements across nine TDF domains. Predominant influences on having confidential conversations included self‐efficacy in speaking with adolescents alone, wanting to address sexual health complaints, maintaining patient flow, experiencing parental resistance and limited space, and having inadequate resources to address patient concerns and personal preconceptions about patients. Perspectives divided between wanting to provide focused medical care related only to their chief complaint versus self‐identifying as a holistic medical HCP. Conclusions: The factors influencing the conduct of confidential conversations included multiple TDF domains, elucidating how numerous intersecting factors influence whether ED HCPs address sensitive adolescent health needs. These data suggest methods to enhance and facilitate confidential conversations when deemed appropriate in the care of adolescents in the ED. [ABSTRACT FROM AUTHOR]

Introduction: Covid‐19 expanded the use of remote working to engage with public contributors in health and social care research. These changes have the potential to limit the ability to participate in patient and public involvement and engagement (PPIE) for some public contributors. It is therefore important to understand public contributors' preferences, so that remote working can be organized in an optimal way to encourage rather than discourage participation. Methods: We use an economic preference elicitation tool, a discrete choice experiment (DCE), via an online survey, to estimate public contributors' preferences for and trade‐offs between different features of remote meetings. The features were informed by previous research to include aspects of remote meetings that were relevant to public contributors and amenable to change by PPIE organizers. Results: We found that public contributors are more likely to participate in a PPIE project involving remote meetings if they are given feedback about participation; allowed to switch their camera off during meetings and step away if/when needed; were under 2.5 h long; organized during working hours, and are chaired by a moderator who can ensure that everyone contributes. Different combinations of these features can cause estimated project participation to range from 23% to 94%. When planning PPIE and engaging public contributors, we suggest that resources are focused on training moderators and ensuring public contributors receive meeting feedback. Discussion and Conclusion: Project resources should be allocated to maximize project participation. We provide recommendations for those who work in public involvement and organize meetings on how resources, such as time and financial support, should be allocated. These are based on the preferences of existing public contributors who have been involved in health and social care research. Patient or Public Contribution: We had a public contributor (Naheed Tahir) as a funded coapplicant on the UKRI ESRC application and involved members of the North West Coast Applied Research Collaboration (NWC ARC) Public Advisor Forum at every stage of the project. The survey design was informed from three focus groups held with NWC ARC public contributors. The survey was further edited and improved based on the results of six one‐to‐one meetings with public contributors. [ABSTRACT FROM AUTHOR]

Aim: The aim of this study was to design, deliver and evaluate an interprofessional education programme for healthcare professionals on how to implement a modified version of the safe recovery programme to prevent falls in hospitalized patients. Design: Mixed methods design incorporating pre‐ and post education surveys and individual semi‐structured interviews. Methods: Thirty‐four health professional participants attended a 1‐h face‐to‐face or Zoom® interprofessional education session to learn how to deliver an evidence‐based patient falls prevention education strategy, the modified Safe Recovery Programme. Results: A 1‐hour education session was insufficient to build full confidence to deliver the Safe Recovery Programme. There was no statistically significant change in participant views on interprofessional collaboration. Participants recommended prior consultation and preparation before delivery of IPE, with additional opportunities for discussion and feedback during implementation with patients. The findings highlight the importance of interprofessional education for evidence‐based interventions in hospitals. Health professionals value education that is timely, interactive, realistic and engaging. [ABSTRACT FROM AUTHOR]

Background: Chronic pain is estimated to impact one‐in‐three children with cerebral palsy (CP). Psychological interventions including behavioral and cognitive strategies play a key role in chronic pain management, but there is a paucity of research exploring their use in children with CP. Aim: To investigate the acceptability and feasibility of biofeedback assisted relaxation training (BART) for chronic pain management in children with CP using a mixed‐methods study design. Methods: Biofeedback assisted relaxation training was delivered via BrightHearts, an iOS application. Inclusion criteria were as follows: CP; self‐reported chronic pain; age 9‐18 years; and fluent English speaker. Children used BrightHearts for ten minutes daily, over four weeks. Qualitative post‐intervention interviews were undertaken (child, parent) and quantitative pre‐post measures (child) were gathered including pain intensity (numerical rating scale), and anxiety intensity (numerical rating scale). Content analysis was conducted for qualitative data. Descriptive statistics and exploratory analyses were performed for quantitative data. Results: Ten children participated (n = 3 male, mean age = 13.1 years SD = 2.5 years, GMFCS level I = 4, II = 2, III = 3, IV = 1). Predominant movement disorder was spasticity (n = 7) and dyskinesia, mainly dystonia (n = 3). Content analysis suggested an overarching theme "BrightHearts is a good thing to put in my toolbox" providing an overall representation of participants' experiences. For many, BrightHearts was a valuable supplement to children's pain management strategies: "The source of the pain is still there, but the actual effect of the pain isn't so relevant." Four sub‐themes were identified: "Managing my pain;" "Managing my anxiety and stress," "Helping me do what I need to do;" and "Fitting it into my life." Some participants reported improvements in their anxiety management, and others described benefits in sleep and school following improved pain/anxiety management. A range of practical and personal factors within this heterogeneous group presented barriers to using BrightHearts including limited time, attention, and boredom. Seven‐out‐of‐eight children would recommend BrightHearts to others with chronic pain and six‐out‐of‐eight noticed a difference in their pain since using BrightHearts (n = 2 missing data). Non‐significant reductions in pain or anxiety intensity scores were found following the intervention. Conclusion: This pilot suggests BrightHearts is an acceptable and feasible intervention for chronic pain management in children with CP and may be useful for some children as part of a multimodal approach. [ABSTRACT FROM AUTHOR]

Background: Involvement of end‐users in research can enhance its quality, relevance, credibility and legitimacy; however, the processes through which these changes occur are unclear. Our aim was to explore a coproduction research team's experiences of their involvement in research about young people with type 1 diabetes mellitus (T1DM). Methods: Semi‐structured interviews conducted with two young people with T1DM, two parents, one diabetes educator, one endocrinologist‐scientist and one research‐engineer explored experiences of coproduction research and its impact on both the research and the participants. Drawing on grounded theory, we undertook inductive analysis and storyline mapping to develop a theorized framework of mechanisms supporting the process of coproduction in T1DM research with young people. Findings: The framework involving coproduction partners in research about young people with type 1 diabetes centres on the unique expertize that different team members bring to the research and describes conditions that enable expert contributions through the enactment of a variety of expert roles. The framework also describes outcomes—the impact of the expert contributions on both the research and the team members involved. Conclusion: The findings of this small exploratory study provide a sound foundation to develop further understanding about structures and processes that are integral for the success of coproduction research teams. The framework may provide a guide for researchers planning to incorporate coproduction, on elements that are important for this model of research to succeed. It may also inform coproduction impact assessment research and be used for hypothesis testing and expansion in future studies. [ABSTRACT FROM AUTHOR]

Service user involvement in health and social care is a key policy driver in the UK. In cancer care it is central to developing services which are effective, responsive and accessible to patients. Cancer network partnership groups are set up to enable joint working between service users and health care professionals and to drive service improvements. The aim of this study was to explore the influence of the cancer network partnership groups' service user involvement activities on cancer care. This was a qualitative study involving documentary analysis and in-depth case studies of a sample of partnership groups. Five partnership groups were purposively selected as case studies from Macmillan regions across the UK; documents were collated from a further five groups. Forty people, including core group members and key stakeholders in cancer services, were interviewed. The evidence from this study suggests that cancer network partnership groups are at their most influential at 'grass roots' level - contributing to patient information resources, enhancing access to services, and improving care environments. While such improvements are undoubtedly important to patients, the groups' aim is to influence strategic changes, for example in cancer care commissioning or macro-level policy decision-making. The evolution of open, participatory relationships between service users and professionals, and recognition of the value of experiential knowledge are seen as key factors in influencing cancer care. The provision of dedicated resources to strengthen service user involvement activities is also vital. [ABSTRACT FROM AUTHOR]

Background: The introduction of screening in the UK and other high‐income countries led to a significant decrease in the incidence of cervical cancer and increase in survival rates. Minority ethnic groups are often underrepresented in screening participation for reasons that are poorly understood. Objective: To explore experiences of cervical screening participation and non‐participation of women from minority ethnic populations in Scotland and gain insights to support the development of interventions that could potentially support screening participation and thereby reduce inequalities. Design: Qualitative comparison group study using in‐depth, semi‐structured individual interviews that were thematically analysed. Setting and participants: This study took place in Scotland. Fifty women were purposively sampled from four ethnic minority groups: South Asian; East European; Chinese; and Black African or Caribbean. White Scottish women were also interviewed. Results: Many experiences described were common regardless of ethnicity, such as difficulties managing competing priorities, including work and care responsibilities. However, important differences existed across the groups. These included going abroad for more frequent screening, delayed introduction to screening and not accessing primary care services, language difficulties in health‐care settings despite proficiency in English and not being sexually active at screening commencement. Experiences of racism, ignorance and feeling shamed were also reported. Conclusions: Key differences exist in the experience of minority ethnic groups in Scotland. These offer potential opportunities to reduce disparity and support screening participation including maximizing co‐incidental interactions and developing outreach work. [ABSTRACT FROM AUTHOR]

Acute malnutrition in infants under 6 months (u6m) is increasingly recognised as a global public health problem. The World Health Organisation (WHO) guidelines for inpatient nutritional rehabilitation of infants u6m is re‐lactation: the re‐establishment of exclusive breastfeeding. Evidence suggests these guidelines are rarely followed in many low‐income settings. Two studies of infant nutritional rehabilitation undertaken in three public hospitals in coastal Kenya employed breastfeeding peer supporters (BFPSs) to facilitate WHO guideline implementation. To explore the acceptability of the strategy to health workers (HWs) and the BFPSs, in‐depth interviews were conducted with 20 HWs and five BFPSs in the three study hospitals. The HWs reported that the presence of the BFPSs changed the way infant nutritional rehabilitation was managed, increasing efforts at relactation and decreasing reliance on supplemental milk. BFPSs were said to help address staff shortages and had dedicated time to support and assist the mothers. Key to the success of the BFPSs was the social relationships they were able to establish with the mothers due to the similarity in their experiences and backgrounds. Despite the success of the BFPSs, human resource management and infrastructure challenges remained. BFPSs can successfully be employed to facilitate the implementation of the WHO guidelines for the nutritional rehabilitation of acutely malnourished infants u6m in hospitals in Kenya, establishing supportive social relationships and trust with the mothers of the acutely malnourished infants and helping to address the issue of human resource shortages. [ABSTRACT FROM AUTHOR]

Introduction: There is an extensive literature on public involvement (PI) in research, but this has focused primarily on experiences for researchers and public contributors and factors enabling or restricting successful involvement in specific projects. There has been less consideration of a 'whole system' approach to embedding PI across an organization from governance structures through to research projects. Objective: To investigate how a combination of two theoretical frameworks, one focused on mainstreaming and the other conceptualizing quality, can illuminate the embedding of positive and influential PI throughout a research organization. Methods: The study used data from the evaluation of a large UK research collaboration. Primary data were collected from 131 respondents (including Public Advisers, university, NHS and local government staff) via individual and group interviews/workshops. Secondary sources included monitoring data and internal documents. Findings: CLAHRC‐NWC made real progress in mainstreaming PI. An organizational vision and infrastructure to embed PI at all levels were created, and the number and range of opportunities increased; PI roles became more clearly defined and increasingly public contributors felt able to influence decisions. However, the aspiration to mainstream PI throughout the collaboration was not fully achieved: a lack of staff 'buy‐in' meant that in some areas, it was not experienced as positively or was absent. Conclusion: The two theoretical frameworks brought a novel perspective, facilitating the investigation of the quality of PI in structures and processes across the whole organization. We propose that combining these frameworks can assist the evaluation of PI research. [ABSTRACT FROM AUTHOR]

Background: Service user and carer perspectives on safety issues in mental health services are not well known and may be important in preventing and reducing harm. The development of the Yorkshire Contributory Factors Framework—Mental Health (YCFF‐MH) provides a broad structure within which to explore these perspectives. Objective: To explore what service users of mental health services and their carers consider to be safety issues. Design, setting and participants: Qualitative interviews with 13 service users and 7 carers in the UK. Participants were asked about their experiences and perceptions of safety within mental health services. Perceived safety issues were identified using framework analysis, guided by the YCFF‐MH. Results: Service users and carers identified a broad range of safety issues. These were categorized under 'safety culture' and included psychological concepts of safety and raising concerns; 'social environment' involved threatened violence and sexual abuse; 'individual service user and staff factors' dominated by not being listened to; 'management of staff and staffing levels' resulting in poor continuity of care; and 'service process' typified by difficulty accessing services during a crisis. Several examples of 'active failures' were also described. Discussion and conclusions: Safety issues appear broader than those recorded and reported by health services and inspectorates. Many safety issues have also been identified in other care settings supporting the notion that there are overlaps between service users and carers' perspectives of safety in mental health services and those of users in other settings. Areas for further research are suggested. [ABSTRACT FROM AUTHOR]

Background: A large proportion of ambulance callouts are for men with mental health and/or alcohol and other drug (AOD) problems, but little is known about their experiences of care. This study aimed to describe men's experiences of ambulance care for mental health and/or AOD problems, and factors that influence their care. Methods: Interviews were undertaken with 30 men who used an ambulance service for mental health and/or AOD problems in Australia. Interviews were analysed using the Framework approach to thematic analysis. Results: Three interconnected themes were abstracted from the data: (a) professionalism and compassion, (b) communication and (c) handover to emergency department staff. Positive experiences often involved paramedics communicating effectively and conveying compassion throughout the episode of care. Conversely, negative experiences often involved a perceived lack of professionalism, and poor communication, especially at handover to emergency department staff. Conclusion: Increased training and organizational measures may be needed to enhance paramedics' communication when providing care to men with mental health and/or AOD problems. [ABSTRACT FROM AUTHOR]

Objective: This study explored how care partners (CPs) of persons with Parkinson's (PwP) are engaged in discussions of "off" symptoms. Methods: During qualitative interviews, CPs of PwP sampled by convenience through the Michael J Fox Foundation online clinical trial matching service were asked to describe their familiarity with "off" symptoms, how "off" symptoms were discussed with clinicians, and the impact of "off" symptoms on them. Data were analysed using constant comparative technique by all members of the research team. Results: A total of 20 CPs were interviewed. Compared with PwP, they were more likely to describe "off" symptoms to clinicians. CPs identified important aspects of patient‐centred care for PD: establishing a therapeutic relationship, soliciting and actively listening to information about symptoms, and providing self‐management support to both PwP and CPs. CPs said that clinicians did not always engage CPs, ask about "off" symptoms or provide self‐management guidance, limiting their ability to function as caregivers. Conclusion: By not engaging and educating CPs, "off" symptoms may not be identified or addressed, leading to suboptimal medical management and quality of life for PwP. These findings must be confirmed on a broader scale through ongoing research but suggest the potential need for interventions targeted at clinicians and at CPs to promote patient‐centred care for PwP. [ABSTRACT FROM AUTHOR]

Background: Barrett's oesophagus (BO), a precursor to oesophageal adenocarcinoma, requires long‐term endoscopic surveillance. The rising incidence of this chronic disease has implications for service provision and patient burden. Few studies have explored BO patients' personal burden, care delivery experience and participation in health‐care delivery decisions. Objective: To identify and explore factors impacting BO patients' health‐related quality of life, follow‐up needs and views on new models of follow‐up care. Design: An exploratory qualitative approach was adopted using semi‐structured, in‐depth, one‐to‐one interviews, audio‐recorded and transcribed verbatim. Patients undergoing BO surveillance, at a single NHS hospital, were recruited using purposive sampling with the aim of achieving maximum variation. Data were analysed using framework analysis approach, supported by NVivo Pro 11. Results: Data saturation occurred after 20 participant interviews. Ten subthemes and three main themes emerged from the analysis: (a) burden of disease—symptom control, worry of oesophageal cancer and surveillance endoscopy; (b) follow‐up experiences—follow‐up care, at this NHS hospital, was found to be inconsistent and often inadequate to meet patients' needs, in particular a lack of disease‐specific information; and (c) follow‐up needs—participants sought enhanced communication, organization and structure of care. They highly valued face‐to‐face interaction with a specialist, and the concept of direct secondary care access in‐between endoscopies was reassuring to participants. Conclusions: This qualitative research provides an in‐depth account of the patients' perspective of BO, the effectiveness of follow‐up care and patient opinion on new follow‐up systems. [ABSTRACT FROM AUTHOR]

Objective: The concept of shifting from volume (i.e., billing for as many patients and services as possible) to value (i.e., reducing costs while improving quality) has been a key underpinning of the development of accountable care organizations (ACOs), yet the cultural change necessary to make this shift has been previously unexplored.Data Sources/study Setting: Primary data collected through site visits to four private sector ACOs.Study Design: Cross-sectional, semi-structured interview study with analysis done at the ACO level to learn about ACO development.Data Collection: One hundred and forty-eight interviews recorded and transcribed verbatim followed by rigorous qualitative analysis using a grounded theory approach.Principal Findings: The importance of shifting organizational culture from volume to value was emphasized across sites and interviewees, particularly when defining an ACO; describing the shift in organizational focus to value; and discussing how to create value by emphasizing quality over volume. Value was viewed as more than cost-benefit, but rather encapsulated a paradigmatic cultural change in the way care is provided.Conclusions: We found that moving from volume to value is central to the culture change required of an ACO. Our findings can inform future efforts that aim to create a more effective value-based health care system. [ABSTRACT FROM AUTHOR]

Background: Reciprocal relationships between researchers and patient and public involvement (PPI) contributors can enable successful PPI in research. However, research and anecdotal evidence suggest that researchers do not commonly provide feedback to PPI contributors thus preventing them from knowing whether, how or where their contributions were useful to researchers and research overall. Aims: The aim of this study was to explore the variation, types, importance of, and satisfaction with feedback given by researchers to PPI contributors in six PPI groups in England, and identify the barriers to the process of feedback. Methods: An explanatory mixed methods sequential study design with a questionnaire survey followed by semi‐structured interviews with researchers and PPI contributors in six PPI groups. PPI contributors were involved in all stages of the research process. Results: Researchers do not routinely give feedback to PPI contributors. Feedback was found to have different meanings: an acknowledgement, impact and study success and progress. PPI contributors who receive feedback are motivated for further involvement; it supports their learning and development and prompts researchers to reflect on PPI impact. The importance of the role of a PPI lead or coordinator to facilitate the process of providing feedback was also highlighted. Conclusion: This study found no generic way to give feedback indicating that mutual feedback expectations should be discussed at the outset. PPI feedback needs to become integral to the research process with appropriate time and resources allocated. PPI feedback can be seen as a key indicator of mature, embedded PPI in research. [ABSTRACT FROM AUTHOR]

Abstract: Context: Reflective accounts of public involvement in research (PI) are important for helping researchers plan and deliver more effective PI activities. In particular, there is a need to address power differentials between team members that can prohibit effective and meaningful involvement. Objective: To critically reflect on the PI practices that underpinned our research project on intimacy and sexuality in care homes, to develop a series of recommendations for improving future PI activities. Setting: The research team comprised five academics from nursing, public health, sociology and psychology, and two members of the public with experience of sex education, and lesbian, gay, bisexual and trans issues in older populations. In order to address power differentials within the group, we developed an approach to PI practice that was grounded in values of openness, inclusion and transparency. Method: Reflective commentaries on the strengths and weaknesses of the team's approach to PI were gathered through interviews and open‐ended questionnaires with research team members. These views were collated and discussed at a workshop comprising research team members and an additional member of the public to generate recommendations for future PI practice. Results: A number of strengths and limitations of our approach to PI were identified. Clear recommendations for improving PI practice were developed for three broad areas of identified difficulty: (i) communication within and between meetings; (ii) the roles and responsibilities of team members; and (iii) PI resources and productivity. Discussion and conclusion: These recommendations add to the developing body of guidance for conducting effective PI. [ABSTRACT FROM AUTHOR]

Abstract: Child malnutrition remains high in Ethiopia, and inadequate complementary feeding is a contributing factor. In this context, a community‐based intervention was designed to provide locally made complementary food for children 6–23 months, using a bartering system, in four Ethiopian regions. After a pilot phase, the intervention was scaled up from 8 to 180 localities. We conducted a process evaluation to determine enablers and barriers for the scaling up of this intervention. Eight study sites were selected to perform 52 key informant interviews and 31 focus group discussions with purposely selected informants. For analysis, we used a framework describing six elements of successful scaling up: socio‐political context, attributes of the intervention, attributes of the implementers, appropriate delivery strategy, the adopting community, and use of research to inform the scale‐up process. A strong political will, alignment of the intervention with national priorities, and integration with the health care system were instrumental in the scaling up. The participatory approach in decision‐making reinforced ownership at community level, and training about complementary feeding motivated mothers and women's groups to participate. However, the management of the complex intervention, limited human resources, and lack of incentives for female volunteers proved challenging. In the bartering model, the barter rate was accepted, but the bartering was hindered by unavailability of cereals and limited financial and material resources to contribute, threatening the project's sustainability. Scaling up strategies for nutrition interventions require sufficient time, thorough planning, and assessment of the community's capacity to contribute human, financial, and material resources. [ABSTRACT FROM AUTHOR]

Objective: (1) To evaluate the operational efficiency of various sampling methods for patient exit interviews; (2) to discuss under what circumstances each method yields an unbiased sample; and (3) to propose a new, operationally efficient, and unbiased sampling method.Study Design: Literature review, mathematical derivation, and Monte Carlo simulations.Principal Findings: Our simulations show that in patient exit interviews it is most operationally efficient if the interviewer, after completing an interview, selects the next patient exiting the clinical consultation. We demonstrate mathematically that this method yields a biased sample: patients who spend a longer time with the clinician are overrepresented. This bias can be removed by selecting the next patient who enters, rather than exits, the consultation room. We show that this sampling method is operationally more efficient than alternative methods (systematic and simple random sampling) in most primary health care settings.Conclusion: Under the assumption that the order in which patients enter the consultation room is unrelated to the length of time spent with the clinician and the interviewer, selecting the next patient entering the consultation room tends to be the operationally most efficient unbiased sampling method for patient exit interviews. [ABSTRACT FROM AUTHOR]

Background Patient-centred care is now ubiquitous in health services research, and healthcare systems are moving ahead with patient-centred care implementation. Yet, little is known about how healthcare employees, charged with implementing patient-centred care, conceptualize what they are implementing. Objective To examine how hospital employees conceptualize patient-centred care. Research Design We conducted qualitative interviews about patient-centred care during site four visits, from January to April 2013. Subjects We interviewed 107 employees, including leadership, middle managers, front line providers and staff at four US Veteran Health Administration ( VHA) medical centres leading VHA's patient-centred care transformation. Measures Data were analysed using grounded thematic analysis. Findings were then mapped to established patient-centred care constructs identified in the literature: taking a biopsychosocial perspective; viewing the patient-as-person; sharing power and responsibility; establishing a therapeutic alliance; and viewing the doctor-as-person. Results We identified three distinct conceptualizations: (i) those that were well aligned with established patient-centred care constructs surrounding the clinical encounter; (ii) others that extended conceptualizations of patient-centred care into the organizational culture, encompassing the entire patient-experience; and (iii) still others that were poorly aligned with patient-centred care constructs, reflecting more traditional patient care practices. Conclusions Patient-centred care ideals have permeated into healthcare systems. Additionally, patient-centred care has been expanded to encompass a cultural shift in care delivery, beginning with patients' experiences entering a facility. However, some healthcare employees, namely leadership, see patient-centred care so broadly, it encompasses on-going hospital initiatives, while others consider patient-centred care as inherent to specific positions. These latter conceptualizations risk undermining patient-centred care implementation by limiting transformational initiatives to specific providers or simply repackaging existing programmes. [ABSTRACT FROM AUTHOR]

Background Decision aids can be used to support shared decision making ( SDM). A patient-oriented treatment decision aid ( DA) was developed for type 2 diabetes but its use by general practice staff appeared to be limited. Objectives To explore views of practice staff towards SDM and the DA. Design A mixed-methods study within the Dutch PORTDA-diab trial. Setting and participants Included were 17 practices with staff members who were responsible for routine diabetes care and had worked with the DA, and 209 of their patients. Methods Interviews were conducted focusing on applicability, usefulness and feasibility of the DA. Interviews were tape-recorded, transcribed verbatim and subjected to content analysis for identifying and classifying views. Patient-reported data about the use of the DA were collected. Associations between specific views and use of the DA were tested using Pearson point-biserial correlation. Results The majority of practice staff expressed positive views towards SDM, which was associated with making more use of the DA. Most of the staff expressed that the DA stimulated a two-way conversation. By using the DA, several became aware of their paternalistic approach. Some staff experienced a conflict with the content of the DA, which was associated with making less use of the DA. Conclusions The DA was considered useful by practice staff to support SDM. A positive view towards SDM was a facilitator, whereas experiencing a conflict with the content of the DA was a barrier for making use of the DA. [ABSTRACT FROM AUTHOR]

Premastication is thought to be an adaptive behavior in the introduction of complementary plant-bassed food to infants. It arouses controversy, however, because of the potential for transmitting saliva-born infectious diseases. The aim of this study was to explore whether premastication by healthy caregivers was associated with children's health and behavior. The data were collected as part of the Maternal and Infant Nutrition and Growth study. From 8 cities in China, 1341 pairs of infants/toddlers and their caregivers were recruited. An interviewer-administrated questionnaire collected data on sociodemographic characteristics, feeding behaviors, and self-reported health status. Anthropometric measurements were taken and blood samples were collected for analysis of hemoglobin levels. The overall prevalence of premastication was 26.9% and varies from 14-43% among the 8 cities. Premastication was not associated with occurrences of illness or with the nutritional indicators of height-for-age Z score, weight-for-age Z score, weight-for-height Z score, head circumference Z score and hemoglobin ( P all >.05). Premastication occurred more often among infants who were raised by their parents ( P = .005), whose mothers' education was lower ( P < .001), who were subject to more concern from their parents ( P = .022), and whose parents thought their children had an obesity problem ( P = .001). Presmastication was not associated with food picky behaviors. Premastication is still a common feeding practice in China. More studies are needed to determine the biological, economic, and cultural benefits or harm from premastication. [ABSTRACT FROM AUTHOR]

Service users' involvement in mental health service research is increasingly acknowledged as important, yet, whilst involving users of mental health services as research participants is commonplace, seeking out their experience and indeed their 'expertise' to facilitate the development of tools to be used within mental health services is in its infancy. This article describes the involvement and views of service users in the development of a nursing metric-the Therapeutic Engagement Questionnaire. It presents their role in the three stages of development: generation, statement reduction and authentication. [ABSTRACT FROM AUTHOR]

Objective: To test the feasibility and assess the uptake and acceptability of implementing a consumer questions programme, AskShareKnow, to encourage consumers to use the questions ‘1. What are my options; 2. What are the possible benefits and harms of those options; 3. How likely are each of those benefits and harms to happen to me?’ These three questions have previously shown important effects in improving the quality of information provided during consultations and in facilitating patient involvement. Methods: This single‐arm intervention study invited participants attending a reproductive and sexual health‐care clinic to view a 4‐min video‐clip in the waiting room. Participants completed three questionnaires: (T1) prior to viewing the intervention; (T2) immediately after their consultation; and (T3) two weeks later. Results: A total of 121 (78%) participants viewed the video‐clip before their consultation. Eighty‐four (69%) participants asked one or more questions, and 35 (29%) participants asked all three questions. For those making a decision, 55 (87%) participants asked one or more questions, while 27 (43%) participants asked all three questions. Eighty‐seven (72%) participants recommended the questions. After two weeks, 47 (49%) of the participants recalled the questions. Conclusions: Enabling patients to view a short video‐clip before an appointment to improve information and involvement in health‐care consultations is feasible and led to a high uptake of question asking in consultations. Practice Implications: This AskShareKnow programme is a simple and feasible method of training patients to use a brief consumer‐targeted intervention that has previously shown important effects in improving the quality of information provided during consultations and in facilitating patient involvement and use of evidence‐based questions. [ABSTRACT FROM AUTHOR]

The article presents a study which investigates the factors affecting consumer health literacy based on the perspectives of a pharmacy staff. The researchers detail the study design using semi-structured and audio-recorded interviews in sample pharmacies in Australia. It identifies the factors associated with consumers health literacy including the complex health system, the clarity of information, and the dialogue among consumers and health-care professionals.

The article presents a study which determines the oncologists strategies in communicating information and treatment options to women with recurrent ovarian cancer. The researchers detail the study design using qualitative, exploratory, and descriptive approach with individual interviews. It implies that oncologists provide women with information on their health status, their disease treatment options, and the side effects of treatment.

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]