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Introduction: Neonatal care is complex, involving multiple people and technologies within a community of care. When preterm babies are cared for far from home and/or transferred between units, the whole community of care (and particularly parent participation) is disrupted. Although previous studies have captured subjective experiences of parents, there has been little research exploring the material practices undertaken by parents as a consequence of place‐of‐care decisions, or the social organisation of those practices. Methods: As part of a wider study exploring optimal place‐of‐care, semistructured interviews were conducted between July 2018 and October 2019 with 48 parents (36 families) with one or more preterm babies (born at 27–31 weeks gestation) cared for in a neonatal unit in the last 12 months. Findings: We highlight parents' labour‐intensive and stressful work to: (1) parent in the neonatal care community (an oversight role that goes beyond contemporary notions of 'involvement'); (2) create continuity amid place‐of‐care disruptions; and (3) adapt to the managerial logics of neonatal care settings. Our analysis focuses on the work generated by managerial systems that organise place‐of‐care decision‐making and other efficiency‐focused practices. Parents are absorbed into negotiating institutional systems and diverted from routine parenting activities. Conclusion: Those involved in the organisation and management of neonatal care should take account of how managerial systems impact parents' workload, ability to participate in their baby's community of care and, ultimately, on the wellbeing and development of babies and their families. Patient or Public Contribution: The OPTI‐PREM study embedded parents' experiences of neonatal care into the research, through a discrete workstream that employed qualitative methodology to capture parents' experiences—as reported in this paper. The OPTI‐PREM project was also supported by a Bliss volunteer parent panel, which was involved in designing and overseeing the research. Bliss 'champion[s] the right for every baby born premature or sick to receive the best care by supporting families, campaigning for change and supporting professionals and enabling life‐changing research' (https://www.bliss.org.uk/about-us/about-bliss). A representative of Bliss is a co‐author of this manuscript, and a parent representative (named in the Acknowledgements) provided feedback during its preparation. [ABSTRACT FROM AUTHOR]

Background: The role of patient participation and representation during crises, such as the COVID‐19 pandemic, has been under‐researched. Existing studies paint a pessimistic picture of patient representation during the pandemic. However, there are indications that patient representatives have adapted to the new situation and can contribute to the resilience of healthcare systems. This paper aims to further explore the potential contribution of patient representatives for healthcare system resilience during the COVID‐19 pandemic. Methods: The study used a qualitative approach. We conducted a thematic analysis on the following data: interviews with client council members (n = 32) and representatives from patient organizations (n = 6) and focus groups (n = 2) to investigate patient representation on both the national policy level and organizational level in the Netherlands. Results: We identified the crisis discourse, the dependent position, the diversity of patient perspectives and the layered decision‐making structure as themes that help to understand what made patient representation in pandemic times a struggle for national and local patient representatives. The analysis of the subjects these representatives put forward during decision‐making shows that their input can play an important role in broadening discussions, challenging decisions, and suggesting alternatives during a crisis. We identified several strategies (e.g., collaborating with other actors, proactively putting subjects on the policy agenda, finding new ways of contacting their 'constituency') used by the patient representatives studied to exert influence despite the difficulties encountered. Conclusions: The struggle for patient representation during pandemic decision‐making is a missed opportunity for resilient healthcare systems as these representatives can play a role in opening up discussions and putting different perspectives to the fore. Moreover, the adaptive strategies used by representatives to influence decision‐making offer lessons for future representation activities. However, adaptations to the crisis decision‐making structure are also needed to enable patient representatives to play their role. Patient Contribution: We conducted interviews with patient representatives and discussed our preliminary findings with patient representatives during the focus groups. Zorgbelang, a patient organization supporting client councils and enabling and organizing patient participation for organizations and municipalities, was partner in this research and contributed to the interview guide, conducting interviews and focus groups. Additionally, the analysis made by the first author was discussed and refined multiple times with the partners of Zorgbelang and one of them co‐authored this paper. [ABSTRACT FROM AUTHOR]

Background: Informal care features high on the policy agenda of many countries to deal with workforce shortages. As a consequence, care provision increasingly takes place in the care triad of care recipients, informal caregivers and care professionals. How collaboration between care partners takes shape depends on how the different partners perceive this collaboration. This paper aims to investigate the relative importance of the different aspects of collaboration from the perspectives of care recipients, informal caregivers and care professionals in the context of the care for older persons in The Netherlands. Methods: Using Q‐methodology, 32 participants ranked 28 statements that reflect different aspects of collaboration in the care triad and explained their ranking during a follow‐up interview. Participants comprised 9 older persons, 10 informal caregivers and 13 care professionals. Data were analysed using by‐person factor analysis to identify common patterns in the rankings of the statements. Emerging patterns were interpreted and described as views on collaboration using aggregated rankings and qualitative data from the interviews. Results: Five distinct views on collaboration were found: (1) Emphasizing warm collaboration, (2) trusting care professional's expertise, (3) open and compassionate care professionals, (4) responsive decision‐making by autonomous care professionals and (5) prioritizing care recipient's and informal caregiver's interests. Care recipients and/or informal caregivers were associated with views 1, 3 and, 5, whereas care professionals were associated with all five views. Conclusions: Our study highlights the importance of recognizing the potential diversity of views between and within different partner groups in care triads. Governmental and organizational policy makers, as well as healthcare professionals who aim to increase or support the involvement of informal caregivers, should take this heterogeneity into consideration. Patient or Public Contribution: An advisory board of older persons (care recipients and informal caregivers) was involved in the recruitment of the participants, the formulation of the statements and the reflection on the findings of the study and potential implications. [ABSTRACT FROM AUTHOR]

An important cause of stunting is limited consumption of complementary foods, in terms of both quantities and nutrients. Although existing studies show a positive association between fathers' engagement and children's diet, programmes designed to improve complementary feeding practices often only target mothers. In response to this, maternal behaviour change communication (BCC), paternal BCC and food voucher programmes were designed and implemented in Ethiopia using a clustered randomized controlled trial design. The paternal BCC programme included gender‐equal messages to increase fathers' participation in childcare, household labour and decision making. The research reported in this paper is an examination of the BCC programmes, characterizing the behavioural, normative and control beliefs of both mothers and fathers in BCC households compared to those in control households. In this study, a total of 40 participants were included, with 13 mother–father pairs in the BCC + food voucher group, and seven pairs in the control group. Each participant was interviewed separately. We found that BCC mothers showed more gender‐equal tendencies than the control mothers despite being more rural in location. By contrast, the beliefs of BCC and control fathers were similar overall, suggesting men are more resistant to gender‐equal BCC. More work is needed to develop and test effective methods for changing fathers' beliefs and practices. Key messages: Mothers in behaviour change communication (BCC) group mothers held more gender‐equal beliefs than control mothers, while BCC and control fathers shared similar views, suggesting a male resistance to gender equality.Mothers found fathers' involvement in childcare socially acceptable but often perceived them as inexperienced, which limited their participation.Control mothers' traditional view on household chores maintained the conventional labour division, influencing fathers' involvement.Fathers typically resisted maternal control of resources; however, they agreed that the more knowledgeable should lead decision‐making. BCC mothers showed greater confidence in making household decisions as effectively as fathers. [ABSTRACT FROM AUTHOR]

Background: Acute hospital wards can be difficult places for many people living with dementia. Promoting comfort and wellbeing can be challenging in this environment. There is little evidence‐based support for professionals working on acute care wards on how to respond to distress and maximise comfort and wellbeing among patients living with dementia. Objectives: Our overall aim was to codesign an evidence‐based easy‐to‐use heuristic decision‐support framework, which was acceptable and practical but acknowledges the complex and acute nature of caring for patients with dementia in the hospital. This paper presents the development process and resulting framework. Methods: A codesign study was informed by data from (1) a literature review of the care and management of people living with dementia in acute hospitals; (2) a cohort study of comfort and discomfort in people with dementia in acute hospitals; and (3) interviews with family carers and health care professionals. We synthesised evidence from these data sources and presented to key stakeholders through codesign meetings and workshops to produce our decision‐support framework. Results: The framework consists of a series of flowcharts and operates using a three‐stage process of: (1) assess comfort/discomfort; (2) consider causes of discomfort; and (3) address patient needs to manage the discomfort. Conclusion: Working with key stakeholders, synthesising diverse quantitative and qualitative evidence to build a clinical framework is a feasible approach to help address the needs of patients living with dementia in an acute hospital setting. The result is a framework which is now ready for evaluation and implementation. Patient and Public Contribution: We worked closely with people living with dementia and family carers throughout this study, including the development of the study protocol with input on study development and design, through to inclusion in stakeholder workshops and codesign of the decision support framework. [ABSTRACT FROM AUTHOR]

Currently, policymaking in cancer treatment is based on a reductionist approach and does not consider the differing views of multiple stakeholders in a systemic fashion. Non‐integrated views are not representative of the totality of the real‐life treatment context, and policymakers need to capture that holistic representation in their decision making. This paper uses a 'systems thinking' approach to propose a holistic way of capturing different stakeholders' views and integrating these into optimal treatment. Key stakeholders operate within their own system, as well as within the overarching complex system of cancer treatment care. An integrated view will enable policymakers to better understand the various issues involved and invoke a more holistic governance approach that encourages greater integration and emergence. Subject matter experts in Australia were consulted to provide narratives that were used to construct individual systemic views (systemigrams) to represent the constructivist perspectives of two key stakeholder groups: patients and oncology nurses. Semi‐structured interviews were conducted to validate the representativeness of the systemigrams created. The systemigrams that captured the perceptions and objectives of patients and nurses were found to be significantly different from each other. Understanding that individual views are only a part of the complex system can lead to a better appreciation of failures within cancer treatment and how to address these through optimal governance. Dynamic integration of differing perspectives in the cancer treatment journey is important. Recognizing and encouraging emergent behaviour among key stakeholders will enable effective governance. Management in cancer care is currently largely undertaken through individual silos with little interaction between those silos. This paper presents a new way of visualizing and conceptualizing governance of cancer treatment that will make governance more holistic and will improve patient‐centred care. [ABSTRACT FROM AUTHOR]

Aims: This paper aimed to explore the views of employers at senior care businesses concerning the employment of retired nurses in Thailand. Design: A qualitative interview study was conducted. Methods: Face‐to‐face and online semi‐structured interviews with 78 senior care business employers were conducted. Results: Business employers had positive sentiments towards employing retired nurses to deliver care and supported them to remain in the profession. Business employers acknowledged that retired nurses have a high level of professional confidence with excellent knowledge and skills. Furthermore, retired nurses were often assigned to work in managerial roles. In addition, flexibility in terms of work hours, suitability of role and responsibilities, and reasonable compensation rates were important to nurses' decisions to remain in or return to the nursing profession. There is a need for the further development of recruitment, retention and reform policies to encourage retired nurses to continue or return to the nursing profession. Patient and Public Contributions: We thank all participants for their valuable input throughout the study. [ABSTRACT FROM AUTHOR]

Introduction: Involving youth with severe communication disabilities in health research is foregrounded in a perspective of rights and participation. Researchers aligned with a participatory and inclusive research agenda recommend that involving youth in health research should be a deliberate and well‐planned process. However, limited examples exist of how researchers can facilitate the involvement of youth with severe communication disabilities in research projects. Method: The aim of this paper was to describe the application of the Involvement Matrix as a conceptual framework to guide the three phases of a research project with youth with severe communication disabilities. Results: Six youth aged 19–34 years consented to be involved in the project. All youth had a severe communication disability and used augmentative and alternative communication (AAC) to support their involvement in the research project. The Involvement Matrix provided a structure to delineate four involvement roles in three research phases: In Phase 1, youth were listeners to research information and advisors in the needs analysis. In Phase 2, as advisors and decision‐makers, youth provided their opinions on selecting picture communication symbols for health materials. In Phase 3, as partners, they were copresenters at an online youth forum. Conclusion: The Involvement Matrix was used to plan and implement the involvement of youth with severe communication disabilities in codeveloping health materials for use during the COVID‐19 pandemic. The Involvement Matrix can be applied together with AAC to enable meaningful involvement of youth in a health research project as listeners, advisors, decision‐makers and partners. Patient or Public Contribution: This study project was codeveloped with youth with severe communication disabilities who use AAC in South Africa. A person with lived experience was involved as an advisor to the health material development process and in the drafting of the manuscript. [ABSTRACT FROM AUTHOR]

Infant and young child feeding (IYCF) practices are influenced by many context‐ specific factors related to local food systems as well as social and cultural practices. Understanding these local contextual perspectives is essential for designing effective programs and policies. This paper uses focused ethnographic study methods to examine challenges experienced by mothers related to IYCF in two counties in Kenya, a country with considerable heterogeneity in agriculture, food systems, and cultures. A two‐phase qualitative study was undertaken in each of Kilifi County and West Pokot County, entailing interviews and rating activities with mothers, health workers, and vendors. Interviews were audio‐recorded, transcribed, translated into English, coded, and analysed by topic. Results show low levels of dietary diversity in both counties; in West Pokot, the level of adequate meal frequency is also low. Core foods in young child diets included maize porridge and family foods such as ugali (stiff maize porridge), vegetables, beans, fish, and plantains. Food safety, acceptability, and acquisition ease were the main drivers of food choice. Mothers generally felt that all core foods fed to young children are healthy and safe, but there was more variability regarding child acceptance, acquisition ease, cost, and convenience. Common barriers to feeding nutrient‐dense foods to children included child illness, economic constraints, and limited knowledge of modification strategies, skills, or tools to make the foods suitable for young children. Potential actions to address these barriers include sharing information on child‐appropriate recipes; raising awareness on local, affordable nutrient‐dense foods; and improving WASH practices to reduce illness frequency. [ABSTRACT FROM AUTHOR]

Background: Shared decision‐making has been shown to improve the quality of life in metastatic breast cancer patients in high‐literacy and high‐resource settings. However, limited studies have examined the cultural preferences of metastatic breast cancer patients with shared decision‐making implementation and the barriers encountered in an Asian setting where societal norms predominate and physician decision‐making is at the forefront. This paper aims to identify (1) barriers to practising shared decision‐making faced by healthcare professionals and patients and (2) strategies for implementing shared decision‐making in the context of metastatic breast cancer management in Malaysia. Methods: We conducted a qualitative study involving 12 patients diagnosed with metastatic breast cancer, 16 healthcare professionals and 5 policymakers from surgical and oncology departments at public healthcare centres in Malaysia. Semi‐structured in‐depth interviews and focus group discussions were conducted. The interviews were recorded, transcribed verbatim and analysed using the thematic approach. Nvivo software was used to manage and analyse the data. Results: Five main themes emerged from the study: healthcare provider–patient communication, workforce availability, cultural and belief systems, goals of care and paternalism versus autonomy. Other strategies proposed to overcome barriers to implementing shared decision‐making were training of healthcare professionals and empowering nurses to manage patients' psychosocial issues. Conclusion: This study found that practising shared decision‐making in the public health sector remains challenging when managing patients with metastatic breast cancer. The utilization of decision‐making tools, patient empowerment and healthcare provider training may help address the system and healthcare provider–patient barriers identified in this study. Patient or Public Contribution: Patients were involved in the study design, recruitment and analysis. [ABSTRACT FROM AUTHOR]

Introduction: Paediatric patients with disorders that involve brain functioning are particularly vulnerable with respect to including them in shared decision‐making. Current tools are mostly paper or digital patient information. We lay the groundwork for improving engagement with a concept that we coined 'the Self‐Portrait'. The main goals were to identify (1) obstacles and (2) design parameters that enable patient participation. Methods: A research‐through‐design approach was utilized in nine patients with brain‐related disorders (4–12 years), 15 parents and 15 medical professionals, involving contextual research (interviews and observations) within the paediatric hospital and patients' homes and codesign. Sensitizing materials and early instances of design solutions were deployed as catalysts for communication. Five rounds of enriched interviews and design reviews were thematically analysed to answer the research questions. Results: Obstacles to child involvement were related to children's level of understanding, the time and energy necessary for information processing and lack of perceived relevance of the information. Patients' engagement is supported by design features that extend the time frame of interaction beyond the consultation, transfer information interactively and give control and influence during the consultation. Conclusion: Obstacles were detected that complicate child engagement, which differ between stakeholders. Promising design features were identified that have the potential to play an important role in enabling active child involvement. These findings show that applying principles of human‐centred design research and codesign can bring together patients, parents and medical professionals around a tool that provides a shared language and focus, which are prerequisites to increase child engagement. Patient or Public Contribution: Patients, parents and clinicians contributed as design informants during contextual research and design reviews. Clinicians provided feedback on the initial outcomes of thematic analysis. Two researchers assisted in consensus sessions during the thematic analysis. [ABSTRACT FROM AUTHOR]

Introduction: This paper aims to explore the care processes that best exemplify person‐centred care during physical activity (PA) for long‐term care (LTC) residents with dementia from the perspectives of substitute decision‐makers (SDMs) and LTC home staff. Little is known about how person‐centred care is reflected during PA for residents with dementia, or the barriers and benefits to enacting person‐centred care during PA. Methods: Semistructured interviews were used to collect SDMs and LTC home staffs' perspectives on the importance of person‐centred care during PA from two LTC homes in Canada. The McCormack and McCance person‐centredness framework was used to guide thematic content analysis of responses. Results: SDM (n = 26) and staff (n = 21) identified actions categorized under the sympathetic presence or engagement care processes from the person‐centredness framework as most reflecting person‐centred care. Benefits of person‐centred care during PA were categorized into three themes: functional and physical, behavioural and communication and psychosocial improvements. Barriers to person‐centred care during PA identified were lack of time, opportunities for meaningful activity in LTC setting and staff experiences with resident aggression. Significance: Understanding the care processes that are most recognized as person‐centred care and valued by SDMs and LTC home staff has implications for education and training. Insights into SDMs' care expectations regarding person‐centred care can inform staff about which actions should be prioritized to meet care expectations and can foster relationships to the benefit of residents with dementia. Patient and Public Contribution: Study participants were not involved in the development of research questions, research design or outcome measures of this study. [ABSTRACT FROM AUTHOR]

Abstract: Objectives: The objective was to develop a patient decision aid (DA) to promote shared decision making (SDM) for stable, alert patients who present to the emergency department (ED) with syncope. Methods: Using input from patients, clinicians, and experts in the field of syncope, health care design, and SDM, we created a prototype of a paper‐based DA to engage patients in the disposition decision (admission vs. discharge) after an unremarkable ED evaluation for syncope. In phase 1, we conducted one‐on‐one semistructured exploratory interviews with 10 emergency physicians and 10 ED syncope patients. In phase 2, we conducted one‐on‐one directed interviews with 15 emergency care clinicians, five cardiologists, and 12 ED syncope patients to get detailed feedback on DA content and design. We iteratively modified the aid using feedback from each interviewee until clarity and usability had been optimized. Results: The 11 × 17‐inch, paper‐based DA, titled SynDA, includes four sections: 1) explanation of syncope, 2) explanation of future risks, 3) personalized 30‐day risk estimate, and 4) disposition options. The personalized risk estimate is calculated using a recently published syncope risk‐stratification tool. This risk estimate is stated in natural frequency and graphically displayed using a 100‐person color‐coded pictogram. Patient‐oriented questions are included to stimulate dialogue between patient and clinician. At the end of the development process, patient and physician participants expressed satisfaction with the clarity and usability of the DA. Conclusions: We iteratively developed an evidence‐based DA to facilitate SDM for alert syncope patients after an unremarkable ED evaluation. Further testing is required to determine its effects on patient care. This DA has the potential to improve care for syncope patients and promote patient‐centered care in emergency medicine. [ABSTRACT FROM AUTHOR]

Background: Technological advances have led to cancer prognostication that is increasingly accurate but often unalterable. However, a reliable prognosis of limited life expectancy can cause psychological distress. People should carefully consider offers of prognostication, but little is known about how and why they decide on prognostication. Using uveal melanoma (UM) patients, we aimed to identify (i) how and why do people with UM decide to accept prognostication and (ii) alignment and divergence of their decision‐making from conceptualizations of a 'well‐considered' decision. Methods: UM provides a paradigm to elucidate clinical and ethical perspectives on prognostication, because prognostication is reliable but prognoses are largely nonameliorable. We used qualitative methods to examine how and why 20 UM people with UM chose prognostication. We compared findings to a template of 'well‐considered' decision‐making, where 'well‐considered' decisions involve consideration of all likely outcomes. Results: Participants wanted prognostication to reduce future worry about uncertain life expectancy. They spontaneously spoke of hoping for a good prognosis when making their decisions, but largely did not consider the 50% possibility of a poor prognosis. When pressed, they argued that a poor outcome at least brings certainty. Conclusions: While respecting decisions as valid expressions of participants' wishes, we are concerned that they did not explicitly consider the realistic possibility of a poor outcome and how this would affect them. Thus, it is difficult to see their decisions as 'well‐considered'. We propose that nondirective preference exploration techniques could help people to consider the possibility of a poor outcome. Patient or Public Contribution: This paper is a direct response to a patient‐identified and defined problem that arose in therapeutic and conversational discourse. The research was informed by the responses of patient participants, as we used the material from interviews to dynamically shape the interview guide. Thus, participants' ideas drove the analysis and shaped the interviews to come. [ABSTRACT FROM AUTHOR]

Background: To guide the development of high‐quality care for people with multiple chronic conditions, partners of the European Joint Action CHRODIS developed the Integrated Multimorbidity Care Model. To assess its suitability for improving care for people with multimorbidity in the Netherlands, the model was piloted in a primary care setting with both patients and care providers. Aim: This paper reports on the patient perspective, and aims to explore the priorities, underlying values and preferences for care of people with multimorbidity. Participants and methods: Twenty persons with multimorbidity (selected from general practice registries) participated in a focus group or telephone interview. Subsequently, a questionnaire was completed by 863 persons with multimorbidity registered with 14 general practices. Qualitative data were thematically analysed and quantitative data by means of descriptive statistics. Results: Frequently prioritized elements of care were the use of shared electronic health records, regular comprehensive assessments, self‐management support and shared decision making, and care coordination. Preferences for how these elements should be specifically addressed differed according to individual values (eg weighing safety against privacy) and needs (eg ways of coping with multimorbidity). Conclusion: The JA‐CHRODIS Integrated Multimorbidity Care Model reflects the priorities and preferences for care of people with multimorbidity in the Netherlands, which supports its relevance to guide the development of person‐centred integrated care for people with multiple chronic conditions in the Netherlands. Patient contribution: European patient experts contributed to the development and applicability assessment of the JA‐CHRODIS Integrated Multimorbidity Care Model; Dutch patients participated in focus groups, interviews and a survey. [ABSTRACT FROM AUTHOR]

A growing body of evidence highlights that maternal and child nutrition programmes need to extend beyond the mother–child dyad by adopting a family systems approach, particularly in the Global South. Guided by a sociocultural and community psychology understanding of health, the paper explores factors identifying grandmothers as central resources for nutrition programmes. The study was conducted in a Colombian urban periphery applying a qualitative longitudinal design (prenatal and postpartum). It is based on interviews with adolescent mothers and mothers in their 20s (n = 35 at T1; n = 21 at T2), grandmothers (n = 15 at T1; n = 12 at T2) and community/public stakeholders (n = 17). Many of the participants live in low‐income households headed by grandmothers, who adjust feeding practices to the extent of their economic capacity. Findings reveal grandmothers play a central role in decision‐making and in enabling a holistic support system for the dyad. This is defined as grandmothers' scaffolding; it covers nutrition advice, breastfeeding and infant feeding, cultural practices, caregiving and maternal mental health. The study helps build the evidence‐base for the transferability of a family systems approach to Global South regions by using sociocultural and community psychology concepts to fortify the rationale for including grandmothers in maternal and child nutrition programmes. It argues for the need to continue raising the visibility of key actors like grandmothers and for nutrition programmes to align themselves more flexibly with the needs of families experiencing poverty. [ABSTRACT FROM AUTHOR]

Background and Aims: Communication is important in determining how patients understand the diagnostic process. Empirical studies involving direct observation of communication within diagnostic processes are relatively limited. This ethnographic study aimed to identify communicative practices facilitating or inhibiting shared understanding between patients and doctors in UK acute secondary care settings. Methods: Data were collected in acute medical sectors of three English hospitals. Researchers observed doctors as they assessed patients; semistructured interviews were undertaken with doctors and patients directly afterwards. Patients were also interviewed 2–4 weeks later. Case studies of individual encounters (consisting of these interviews and observational notes) were created, and were cross‐examined by an interdisciplinary team to identify divergence and convergence between doctors' and patients' narratives. These data were analysed thematically. Results: We conducted 228 h of observation, 24 doctor interviews, 32 patient interviews and 15 patient follow‐up interviews. Doctors varied in their communication. Patient diagnostic understanding was sometimes misaligned with that of their doctors; interviews revealed that they often made incorrect assumptions to make sense of the fragmented information received. Thematic analysis identified communicative practices that seemed to facilitate, or inhibit, shared diagnostic understanding between patient and doctor, revealing three themes: (1) communicating what has been understood from the medical record, (2) sharing the thought process and diagnostic reasoning and (3) closing the loop and discharge communication. Shared understanding was best fostered by clear communication about the diagnostic process, what had already been done and what was achievable in acute settings. Written information presents an underutilised tool in such communication. Conclusions: In UK acute secondary settings, the provision of more information about the diagnostic process often fostered shared understanding between doctor and patient, helping to minimise the confusion and dissatisfaction that can result from misaligned expectations or conclusions about the diagnosis, and the uncertainty therein. Patient/Public Contribution: A patient and public involvement group (of a range of ages and backgrounds) was consulted. They contributed to the design of the protocol, including the timing of interviews, the acceptability of a follow‐up telephone interview, the development of the interview guides and the participant information sheets. [ABSTRACT FROM AUTHOR]

Context: Risk stratification has been suggested as a strategy for improving cancer screening. Any changes to existing programmes must be acceptable to the public. Objective: This study aimed to explore the preferences and considerations of individuals relating to the introduction of different risk‐based strategies to determine eligibility for colorectal cancer (CRC) screening. Study Design: Participants completed a discrete choice experiment (DCE) within online interviews. Nine conjoint‐analysis tasks were created, each with two potential CRC screening programmes. The attributes included personal risk of CRC, screening invitation strategy and impact. Participants chose between programmes while thinking aloud and sharing their thoughts. Transcripts were analysed using codebook thematic analysis. Participants: Twenty participants based in England aged 40–79 years without previous cancer history or medical expertise. Results: When choosing between programmes, participants first and primarily looked to prioritise saving lives. The harms associated with screening were viewed as a surprise but also felt by most to be inevitable; the benefits frequently outweighed, therefore, harms were considered less important. Risk stratification using individual characteristics was considered a nuanced approach to healthcare, which tended to be preferred over the age‐alone model. Detailed personal risk information could be taken more seriously than non‐personalised information to motivate behaviour change. Although it had minimal impact on decision‐making, not diverting resources for screening from elsewhere was valued. Individuals who chose not to provide health information were considered irresponsible, while it was important that those with no information to provide should not lose out. Conclusion: Risk‐stratified CRC screening is generally aligned with public preferences, with decisions between possible stratification strategies dominated by saving lives. Even if attributes including risk factors, risk stratification strategy and risk communication contributed less to the overall decision to select certain programmes, some levels more clearly fulfilled public values; therefore, all these factors should be taken into consideration when redesigning and communicating CRC screening programmes. Patient or Public Contribution: The primary data source for this study is interviews with 20 members of the public (current, past or future CRC screening invitees). Two public representatives contributed to planning this study, particularly the DCE. [ABSTRACT FROM AUTHOR]

Background: Individuals with high risk for lung cancer may benefit from lung cancer screening, but there are associated risks as well as benefits. Shared decision‐making (SDM) tools with personalized information may provide key support for patients. Understanding patient perspectives on educational tools to facilitate SDM for lung cancer screening may support tool development. Aim: This study aimed to explore patient perspectives related to a SDM tool for lung cancer screening using a qualitative approach. Methods: We elicited patient perspectives by showing a provider‐facing SDM tool. Focus group interviews that ranged in duration from 1.5 to 2 h were conducted with 23 individuals with high risk for lung cancer. Data were interpreted inductively using thematic analysis to identify patients' thoughts on and desires for a patient‐facing SDM tool. Results: The findings highlight that patients would like to have educational information related to lung cancer screening. We identified several key themes to be considered in the future development of patient‐facing tools: barriers to acceptance, preference against screening and seeking empowerment. One further theme illustrated effects of patient–provider relationship as a limitation to meeting lung cancer screening information needs. Participants also noted several suggestions for the design of technology decision aids. Conclusion: These findings suggest that patients desire additional information on lung cancer screening in advance of clinical visits. However, there are several issues that must be considered in the design and development of technology to meet the information needs of patients for lung cancer screening decisions. Patient or Public Contribution: Patients, service users, caregivers or members of the public were not involved in the study design, conduct, analysis or interpretation of the data. However, clinical experts in health communication provided detailed feedback on the study protocol, including the focus group approach. The study findings contribute to a better understanding of patient expectations for lung cancer screening decisions and may inform future development of tools for SDM. [ABSTRACT FROM AUTHOR]

Introduction: Co‐design in health research involves patient and public involvement and engagement (PPIE) in intervention or service design. Traditionally, co‐design is undertaken in‐person; however, exploring online delivery is warranted. PPIE in co‐design must be considered carefully, and assumptions that in‐person approaches will transition automatically to an online environment should be avoided. Currently, there are a lack of evidence‐informed approaches to facilitating co‐design online. This study aimed to develop and evaluate a framework for authentically adapting health research co‐design into an online environment. Materials and Methods: The initial framework was developed through a literature review, synthesis of in‐person co‐design principles, and alignment of online strategies. The framework was then applied to a co‐design project with 10 participants across relevant PPIE groups (end‐users [n = 4], clinicians [n = 2], coaches [n = 2] and clinician−researchers [n = 2]). Participants' experiences of the online co‐design process were evaluated via a mixed‐methods design using surveys and semi‐structured interviews. Evaluation data were analysed using descriptive statistics and reflexive thematic analysis to inform a revised framework. Results: The developed framework, Partnership‐focussed Principles‐driven Online co‐Design (P‐POD) was used to design eight 90 min online co‐design workshops. Evaluation data involved 46 survey responses, and eight participants were interviewed on project completion. Survey data indicated that the process was satisfying, engaging and adhered to the P‐POD framework. Themes derived from interview data describe a respectful and collaborative online culture, valuing of diverse perspectives and space for healthy debate, how power was perceived as being shared but not equal and multiple definitions of success within and beyond the process. A final, refined P‐POD framework is presented. Conclusion: With evaluation of the initial P‐POD framework showing evidence of adherence to co‐design principles, positive participant experiences and goal achievement for both the project and the participants, the refined P‐POD framework may be used and evaluated within future intervention or service design. Patient or Public Contribution: This study involved the participants (end‐users, clinicians and service providers) in the co‐design process described, interpretation of the results through member‐checking interview responses, assisting in development of the final framework and as co‐authors for this manuscript. [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]

Aims: To explore Registered Nurses' motives to undergo specialist training and to choose a particular speciality. Design: A descriptive qualitative interview study. Methods: Semi‐structured interviews were conducted during 2021 with 20 Swedish specialist nurse students from different specialisation areas. Qualitative content analysis was used. The COREQ checklist was used to report the study. Results: Specialist nurse students' motivations for further training were divided into three main categories with two sub‐categories each. The main categories were 'toward new challenges and conditions in work life', 'contributions to the development and higher competencies in health care' and 'personal work and life experiences as ground for choice'. Conclusion: Our study demonstrates the importance of motivating factors in the career choices of Specialist nurse students, such as personal challenges, desirable working conditions, career growth opportunities and personal experiences in the career choices. Creating a supportive work environment that helps to prioritise work‐life balance and offers the development of new skills might help retain nurses. No Patient or Public Contribution: No patient or public contribution was used. However, if more nurses would choose to undergo specialist training, especially in areas facing significant shortages, it would most likely lead to improved health‐related outcomes for patients or populations. [ABSTRACT FROM AUTHOR]

Abstract: Improving infant and young child feeding practices is critical for improving growth and reducing child mortality and morbidity. This paper aims to compare predictors of minimum dietary diversity, an important indicator of adequate complementary feeding practices, in Bangladesh in 2011 and 2014. The 2011 and 2014 Bangladesh Demographic and Health Survey were used to examine predictors of minimum dietary diversity among 6–23 months. An additional analysis was conducted for the 18–23‐month group, because a significant increase in meeting minimum dietary diversity recommendations was seen in this age group only. Factors found to be associated with practices were compared across time points. In 2011, minimum dietary diversity was 23.8% and increased to 28.8% in 2014. Among children 18–23 months, in 2011, minimum dietary diversity was 32.5% and increased to 42.8% in 2014. Among all children, wealth, education, exposure to media, and antenatal care were significant predictors of dietary diversity. In the 18–23‐month age group, significant predictors in 2011 were wealth and decision making. In 2014, significant predictors were education and exposure to media. Demographic trends indicated a significant increase in education and exposure to media between 2011 and 2014. As these were significant for minimum dietary diversity in 2014 overall and for 18–23 months, they might be important targets of future interventions, specifically utilizing media channels and tailoring special strategies for women with low education and limited exposure to media. [ABSTRACT FROM AUTHOR]

Abstract: Caregivers make decisions about how to feed their infants and young children based on complex interactions of knowledge, beliefs, and values, as well as assessments of situational determinants, including economic and social constraints and opportunities. Because of the relationship of these factors to the adoption of new feeding behaviours, the development of nutrition interventions for this age group must be grounded in knowledge about the target population. This paper presents the results of a study that used cognitive mapping techniques to gain insight into mothers' knowledge and perceptions of foods for infants and young children and examine their significance for feeding decisions in Saint‐Louis, northern Senegal. Guided by mixed‐methods protocols from the Focused Ethnographic Study for Infant and Young Child Feeding Manual, in‐depth interviews that included qualitative discussions and cognitive mapping techniques were conducted with 46 mothers in rural and peri‐urban communities. We explored mothers' perceptions about five dimensions that affect food decision‐making—healthiness, convenience, child acceptance, appeal, and modernity—and the relationship of these dimensions to 38 local food items. Data analysis entailed a combination of qualitative thematic analysis and descriptive statistics. In both communities, “healthiness” was the most valued dimension for food decision‐making by a large margin, followed by child acceptance, appeal, modernity, and convenience. We explore how different interpretations and definitions of these dimensions, and their relationship to specific local food items, may influence the design and planning of nutrition interventions. The results support the importance of mixed‐methods formative research to illuminate the emic perspectives of caregivers. [ABSTRACT FROM AUTHOR]

Objectives: To explore the experiences, acceptability and utility of a decision aid for family carers of people with dementia towards the end of life. Methods: We conducted semi‐structured interviews with a sample of family carers enroled into a 6‐month feasibility study in England, sampling to gain a range of experiences and views, based on relationship to person they cared for (e.g., spouse, adult child), age, gender, and self‐reported use of the decision aid during the feasibility study. Interviews were conducted in March 2021–July 2021 and analysed using reflexive thematic analysis. We used COREQ checklist to report our methods and results. Results: Family carers found the decision aid acceptable, describing it as comprehensive, accessible with relevant information and its presentation enabled good engagement. Experiences of the decision aid covered four main themes which demonstrated the perceived acceptability and utility: 1. A source of support and reassurance; 2. Empowering conversations and confidence; 3. Including the person living with dementia; and 4. Breaking down complexity. Conclusions: An aid focussing on decisions about dementia end of life care supported family carers break down complex and emotive decisions, not only with making decisions in the moment but also in future planning. Patient or Public Contribution: Our three Patient and Public Involvement (PPI) members (all former family carers) were crucial throughout the wider study. PPI supported development of the topic guides, supported trialling the topic guide and interview procedures and finally supported the development of themes as part of the analysis. [ABSTRACT FROM AUTHOR]

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]

Introduction: People being investigated for cancer face a wealth of complex information. Non‐specific symptom pathways (NSS) were implemented in the United Kingdom in 2017 to address the needs of patients experiencing symptoms such as weight loss, fatigue or general practitioner 'gut feeling', who did not have streamlined pathways for cancer investigation. This study aimed to explore the health literacy skills needed by patients being investigated for cancer in NSS pathways. Methods: This study employed ethnographic methods across four hospitals in England, including interviews, patient shadowing and clinical care observations, to examine NSS pathways for cancer diagnosis. We recruited 27 patients who were shadowed and interviewed during their care. We also interviewed 27 professionals. The analysis focused on patient communication and understanding, drawing on the concepts of personal and organisational health literacy. Results: Our analysis derived six themes highlighting the considerable informational demands of the NSS pathway. Patients were required to understand complex blood tests and investigations in primary care and often did not understand why they were referred. The NSS pathway itself was difficult to understand with only a minority of patients appreciating that multiple organs were being investigated for cancer. The process of progressing through the pathway was also difficult to understand, particularly around who was making decisions and what would happen next. The results of investigations were complex, often including incidental findings. Patients whose persistent symptoms were not explained were often unsure of what to do following discharge. Conclusion: We have identified several potential missed opportunities for organisations to support patient understanding of NSS pathways which could lead to inappropriate help‐seeking post‐discharge. Patients' difficulties in comprehending previous investigations and findings could result in delays, overtesting or inadequately targeted investigations, hindering the effective use of their medical history. Third, patients' limited understanding of their investigations and results may impede their ability to engage in patient safety by reporting potential care errors. Patient or Public Contribution: Patient, public, clinical and policy representatives contributed to developing the research objectives through a series of meetings and individual conversations in preparation for the study. We have held several events in which patients and the public have had an opportunity to give feedback about our results, such as local interest groups in North London and academic conferences. A clinical contributor (J.‐A. M.) was involved in data analysis and writing the manuscript. [ABSTRACT FROM AUTHOR]

Background: Healthcare and support workers play a pivotal role in delivering quality services and support to people seeking sanctuary who have experienced poor physical and mental health linked to previous trauma, relocation and loss of freedoms. However, they often encounter various challenges in their daily work, ranging from communication barriers to resource constraints. This qualitative study seeks to delve into the perspectives of healthcare and support workers' experience of workarounds, employed to overcome barriers to providing care. Aim: This study aims to describe healthcare providers', practitioners' and health and third sector support workers' views on barriers and workarounds to providing care for people seeking sanctuary, to inform policy and practice. Design: A qualitative study was carried out using semi‐structured telephone interviews. Setting: This study focused on primary, secondary, community and specialist National Health Service (NHS) support services for people seeking sanctuary in Wales, United Kingdom (2018). Method: We interviewed 32 healthcare providers, practitioners and support workers employed by primary care and third sector organisations. Our approach involved obtaining verbal informed consent before digitally recording and transcribing all interviews. To analyse the data, we used the Four Levels of Change for Improving Quality model as a guiding framework for interpretation. Results: Our study findings reveal that certain respondents expressed challenges in meeting the needs of people seeking sanctuary; notably, their experience of delivering care differed by care settings. Specifically, those involved in providing specialist NHS care believed that there was room for improvement. Mainstream primary, secondary and community health practitioners faced limitations due to resource constraints and lacked tailored information to address the unique circumstances and needs of sanctuary seekers. To address these gaps, workarounds emerged at both individual and local levels (team/departmental and organisational level). These included establishing informal communication channels between providers, fostering cross service collaboration to fill gaps and adapting existing services to enhance accessibility. Conclusion: Understanding healthcare providers', practitioners' and support workers' perspectives offers invaluable insights into ways to enhance healthcare delivery to sanctuary seekers. Acknowledging challenges and harnessing innovative workarounds can foster a more effective and compassionate service for this vulnerable population. Patient or Public Contribution: The HEAR study actively involved public contributors in the design, delivery and dissemination of the research. Two public contributors (S. M. and G. R.) who had personal experience of seeking asylum served as study co‐applicants. They played pivotal roles in shaping the research by participating in its development and securing funding. Alongside other co‐applicants, S. M. and G. R. formed the Research Management Group, overseeing study delivery. Their contributions extended to strategic decision‐making and specific feedback at critical junctures, including participant recruitment, data collection, analysis and reporting. Additionally, S. M. and G. R. were instrumental in recruiting and supporting a team of peer researchers, enhancing respondent participation among people seeking sanctuary. To facilitate effective public involvement, we provided named contacts for support (A. K. and R. F.), research training, honoraria, reimbursement of expenses and accessible information in line with best practice. [ABSTRACT FROM AUTHOR]

Introduction: The transition from hospital to home is often suboptimal, resulting in patients not receiving the necessary allied healthcare after discharge. This may, in turn, lead to delayed recovery, a higher number of readmissions, more emergency department visits and an increase in mortality and healthcare costs. This study aimed to gain insight into patients' experiences, perceptions, and needs regarding hospital‐to‐home transition, focusing on allied healthcare as a first step towards the development of a transitional integrated allied healthcare pathway for patients with complex care needs after hospital discharge. Methods: We conducted semistructured interviews with patients. Participants were recruited from universities and general hospitals in the Amsterdam region between May and July 2023. They were eligible if they (1) were discharged from the hospital minimally 3 and maximally 12 months after admission to an oncologic surgery department, internal medicine department, intensive care unit, or trauma centre, (2) received hospital‐based care from at least one allied healthcare provider, who visited the patient at least twice during hospital admission, (3) spoke Dutch or English and (4) were 18 years or older. Interviews were audio‐recorded and transcribed verbatim. We performed a thematic analysis of the interview data. Results: Nineteen patients were interviewed. Three themes emerged from the analysis. 'Allied healthcare support during transition' depicts patients' positive experiences when they felt supported by allied health professionals during the hospital‐to‐home transition. 'Patient and family involvement' illustrates how much patients value the involvement of their family members during discharge planning. 'Information recall and processing' portrays the challenges of understanding and remembering overwhelming amounts of information, sometimes unclear and provided at the wrong moment. Overall, patients' experiences of transitional care were positive when they were involved in the discharge process. Negative experiences occurred when their preferences for postdischarge communication were ignored. Conclusions: This study suggests that allied health professionals need to continuously collaborate and communicate with each other to provide patients and their families with the personalized support they need. To provide high‐quality and person‐centred care, it is essential to consider how, when, and what information to provide to patients and their families to allow them to contribute to their recovery actively. Patient or Public Contribution: The interview guide for this manuscript was developed with the assistance of patients, who reviewed it and provided us with feedback. Furthermore, patients provided us with their valuable lived experiences by participating in the interviews conducted for this study. [ABSTRACT FROM AUTHOR]

Introduction: Shared decision making (SDM) requires an active role of both clinicians and patients. We aimed to conceptualise patient readiness for SDM about treatment, and to develop a patient questionnaire to assess readiness. Methods: We used the results of a scoping review and a qualitative study to inform the patient readiness construct. We conducted five additional rounds of data collection to finalise the construct definition and develop the Patient Readiness for SDM Questionnaire (ReadySDM) in an oncological setting: (1) longitudinal interviews with patients with cancer during and after a treatment decision‐making process; (2) a pilot study among experts, clinicians, and patients for feedback on the concept and items; (3) a field test among (former) patients with cancer to test item format and content validity, and to reduce the number of items; (4) cognitive interviews with people with low literacy to test the comprehensibility of the questionnaire; and (5) a field test among (former) patients who faced a cancer treatment decision in the last year, to test the content validity of the final version of the questionnaire. Results: A total of 251 people participated in the various rounds of data collection. We identified eight elements of patient readiness for SDM about treatment: (1) understanding of and attitude towards SDM; (2) information skills; (3) skills in communicating and claiming space; (4) self‐awareness; (5) consideration skills; (6) self‐efficacy; (7) emotional distress; and (8) experienced time. We developed the 20‐item ReadySDM to retrospectively measure these elements in an oncological setting. Conclusion: We conducted a thorough procedure to conceptualise patient readiness and to develop the ReadySDM. The questionnaire aims to provide novel insights into ways to enhance SDM in daily practice. Patient or Public Contribution: Multiple people with lived experience were involved in various phases of the study. They were asked for input on the study design, the conceptualisation of readiness, and the development of the questionnaire. [ABSTRACT FROM AUTHOR]

The concept of a focused ethnographic study ( FES) emerged as a new methodology to answer specific sets of questions that are required by agencies, policymakers, programme planners or by project implementation teams in order to make decisions about future actions with respect to social, public health or nutrition interventions, and for public-private partnership activities. This paper describes the FES on complementary feeding that was commissioned by the Global Alliance for Improved Nutrition and highlights findings from studies conducted in three very different country contexts ( Ghana, South Africa and Afghanistan) burdened by high levels of malnutrition in older infants and young children ( IYC). The findings are analysed from the perspective of decision-making for future interventions. In Ghana, a primary finding was that in urban areas the fortified, but not instant cereal, which was being proposed, would not be an appropriate intervention, given the complex balancing of time, costs and health concerns of caregivers. In both urban and rural South Africa, home fortification products such as micronutrient powders and small quantity, lipid-based nutrient supplements ( LNS) are potentially feasible interventions, and would require thoughtful behaviour change communication programmes to support their adoption. Among the important results for future decision-making for interventions in Afghanistan are the findings that there is little cultural recognition of the concept of special foods for infants, and that within households food procurement for IYC are in the hands of men, whereas food preparation and feeding are women's responsibilities. [ABSTRACT FROM AUTHOR]

Biobanks for long-term research pose challenges to the legal and ethical validity of consent to participate. Different models of consent have been proposed to answer some of these challenges. This paper contributes to this discussion by considering the meaning and value of consent to participants in biobanks. Empirical data from a qualitative study is used to provide a participant view of the consent process and to demonstrate that, despite limited understanding of the research, consent provides the research participants with some level of control and a form of self determination that they value. Participation is framed as a moral act of a responsible citizen providing reinforcement of self identity. Consent symbolizes the trust invested in researchers and research institutions to use the biobank for the public good. The paper argues that consent continues to play an important role in biobank participation and that a participant view should inform proposals to modify consent processes. [ABSTRACT FROM AUTHOR]

Background: There are few examples of public patient involvement in policymaking for groups whose ability to participate may be affected by a disability, particularly for people with dementia and their family carers. Principles of engagement and inclusion in democratic processes are as important for these groups as other citizens. We used two innovative methods to increase involvement of people with dementia and family carers in the policymaking process in Ireland, specifically in relation to impending legislation on home care. Method: A Policy Café was co‐produced with people with dementia using a World Café methodology. A Carer's Assembly was co‐produced with caregivers of people with dementia using a citizen's assembly model. Results: Ten people with dementia discussed policy developments they wanted to see implemented in relation to diagnosis and home care. Twenty‐eight dementia caregivers prioritized four topics: home care; respite services; psychosocial supports; and financial supports. Film and illustrations were used to create accessible messages for policy‐makers to inform their decision making. Discussion: Involving people with dementia and carers in policy development requires time and creativity to facilitate and maximize their involvement. Co‐production is essential to ensure the priorities of participants are identified, expressed and communicated effectively. A cumulative sequence of events and messages can generate significant engagement with policy‐makers. Policy‐makers need to hear the direct and authentic voice of people with dementia and carers when faced with important policy decisions. Patient or public contribution: People with dementia and carers were involved in study design, data analysis and presentation. [ABSTRACT FROM AUTHOR]

Background: Global migration has led to a sharp increase in the number of language‐discordant consultations (LDCs) in healthcare. Evidence on how healthcare providers (HCPs) meet migrant patients' needs while mitigating language barriers is lacking. Design: Using purposive and snowball sampling, we recruited twenty‐seven Dutch HCPs (Mage = 45.07, SD = 11.46) and conducted semi‐structured interviews to collect qualitative, open‐ended data for identifying the communication strategies used with migrant patients in LDCs. We analysed the transcripts using deductive and inductive approaches (e.g., constant comparative method from Grounded Theory). Final pattern codes (i.e., key themes) were discussed among the research team until mutual agreement had been achieved. Results: Five key themes emerged from the analyses: HCPs often 'got‐by' with (1) instrumental and (2) affective communication strategies used in language‐concordant consultations to start medical consultations. When some instrumental communication strategies were deemed ineffective (e.g., lingua franca, gesturing, etc.) to bridge language barriers, HCPs turned to (3) incorporating digital tools (e.g., Google Translate). When HCPs were unable to communicate with migrant patients at all, (4) informal, ad‐hoc and professional interpreters were involved. Finally, HCPs often (5) involved additional support to engage migrant patients to engage in treatment‐related behaviours. Discussion and Conclusions: Our results highlight the importance of raising awareness among HCPs about using various combinations of different strategies. The development of a guideline indicating the optimal combination of communication strategies for different medical consultation goals may be useful in reshaping the current communication behaviour of HCPs in LDCs. Patient or Public Contribution: HCPs were the study population involved in this qualitative study. Refugee health advisors, general practitioners and linguistic specialists (i.e., members of the Right2Health consortium) with experience with the Dutch healthcare system were involved throughout the development of this research. This includes a review of the research question, participant information sheet and interview topic guide as well as providing interpretations of the data and feedback to this manuscript. [ABSTRACT FROM AUTHOR]

Introduction: Recently, different actors have intensified their efforts to make drug development more participatory. They have produced many frameworks, tools and dedicated fora, where patients are portrayed as relevant stakeholders to be involved throughout the entire drug development trajectory. To better understand what such participatory efforts entail, in this article, we investigate how patient representation is configured in drug development and what patients can engage as representatives in this field. Methods: This is a qualitative study based on the thematic analysis of 40 semistructured interviews with different stakeholders in the field and three patient engagement How‐To guides (HTGs) complemented by observations of two sessions of the Patient Engagement Open Forum (PEOF) and a patient expert training of the European Patients' Academy on Therapeutic Innovation (EUPATI). Findings: The emerging practices of patient engagement in drug development configure representation as hinging upon three types of knowledge—drug development knowledge, autobiographical knowledge and community knowledge—and a specific set of skills. We discern a new kind of representation based on these findings, termed 'knowledge‐based representation', which appears to more accurately describe how patients are expected to represent others in drug development. Conclusion: Even though knowledge‐based representation may be understood as an attempt to downplay the political aspects of representation in favour of its epistemic elements, the political processes involved in patient representation in drug development cannot be ignored. The extent to which reliance on knowledge‐based representation will contribute to democratic decision‐making is likely to depend on the resources needed to develop the types of knowledge relevant to representation work and on how these types of knowledge are determined. Patient or Public Contribution: Patient representatives and practitioners in the field of patient engagement (including 13 interviewees, representatives of EUPATI and HTG developers) gave feedback on the interpretation of the findings during a multistakeholder workshop we organised. We also sent an interviewee an extended draft and discussed it during an online meeting. Claudia Egher presented these findings at a PEOF session in June 2023, which further contributed to their validation. [ABSTRACT FROM AUTHOR]

Introduction: Caring for children and youth with special health care needs (CYSHCN) is a significant undertaking for families. While respite care is intended to address this burden, demand continues to exceed supply. Exploring the perspectives of respite service providers (SPs) and stakeholders (SKs) provides unique insight into families' needs and respite care systems. Methods: We conducted semistructured interviews with 41 respite care SPs and SKs across four Canadian provinces to ascertain perspectives on current and ideal respite care for families of CYSHCN. The analysis included delineating units of meaning from the data, clustering units of meaning to form thematic statements and extracting themes. The second‐level analysis involved applying themes and subthemes to cross‐functional process maps. Findings: Participants noted the critical, but sometimes absent role of Community Service Workers, who have the ability to support families accessing and navigating respite care systems. SPs and SKs identified current respite systems as operating in crisis mode. New findings suggest an ideal respite care system would incorporate advocacy for families, empower families and value CYSHCN, their families and respite workers. Conclusion: The evidence of unmet respite care needs of families of CYSHCN across Canada has long been available. Our findings identifying respite system challenges and solutions can be used by funders and policymakers for planning and enhancing resources, and by healthcare professionals, respite care providers and SKs to understand barriers and take action to improve respite outcomes to meet the respite needs of all families and CYSHCN. Patient or Public Contribution: The research team is composed of patients, researchers, clinicians and decision‐makers along with our Family Advisory Committee (FAC) composed of members of families of CYSHNC. The FAC was formed and met regularly with research team members, knowledge users and collaborators throughout the study to provide input on design, review themes and ensure findings are translated and disseminated in a meaningful way. [ABSTRACT FROM AUTHOR]

Background: Deaf and hard‐of‐hearing (DHH) patients are a priority population for emergency medicine health services research. DHH patients are at higher risk than non‐DHH patients of using the emergency department (ED), have longer lengths of stay in the ED and report poor patient–provider communication. This qualitative study aimed to describe ED care‐seeking and patient‐centred care perspectives among DHH patients. Methods: This qualitative study is the second phase of a mixed‐methods study. The goal of this study was to further explain quantitative findings related to ED outcomes among DHH and non‐DHH patients. We conducted semistructured interviews with 4 DHH American Sign Language (ASL)‐users and 6 DHH English speakers from North Central Florida. Interviews were transcribed and analysed using a descriptive qualitative approach. Results: Two themes were developed: (1) DHH patients engage in a complex decision‐making process to determine ED utilization and (2) patient‐centred ED care differs between DHH ASL‐users and DHH English speakers. The first theme describes the social‐behavioural processes through which DHH patients assess their need to use the ED. The second theme focuses on the social environment within the ED: patients feeling stereotyped, involvement in the care process, pain communication, receipt of accommodations and discharge processes. Conclusions: This study underscores the importance of better understanding, and intervening in, DHH patient ED care‐seeking and care delivery to improve patient outcomes. Like other studies, this study also finds that DHH patients are not a monolithic group and language status is an equity‐relevant indicator. We also discuss recommendations for emergency medicine. Patient or Public Contribution: This study convened a community advisory group made up of four DHH people to assist in developing research questions, data collection tools and validation of the analysis and interpretation of data. Community advisory group members who were interested in co‐authorship are listed in the byline, with others in the acknowledgements. In addition, several academic‐based co‐authors are also deaf or hard of hearing. [ABSTRACT FROM AUTHOR]

Introduction: Health, social care, charitable and justice sectors are increasingly recognising the need for trauma‐informed services that seek to recognise signs of trauma, provide appropriate paths to recovery and ensure that services enable people rather than retraumatise. Foundational to the development of trauma‐informed services is collaboration with people with lived experience of trauma. Co‐production principles may provide a useful framework for this collaboration, due to their emphasis on lived experience, and intent to address power imbalances and promote equity. This article aims to examine trauma‐informed and co‐production principles to consider the extent to which they overlap and explore how to tailor co‐production approaches to support people who have experienced trauma. Methods: Bridging Gaps is a collaboration between women who have experienced complex trauma, a charity that supports them, primary care clinicians and health researchers to improve access to trauma‐informed primary care. Using co‐production principles, we aimed to ensure that women who have experienced trauma were key decision‐makers throughout the project. Through reflective notes (n = 19), observations of meetings (n = 3), interviews with people involved in the project (n = 9) and reflective group discussions on our experiences, we share learning, successes and failures. Data analysis followed a framework approach, using trauma‐informed principles. Results: Co‐production processes can require adaptation when working with people who have experienced trauma. We emphasise the need for close partnership working, flexibility and transparency around power dynamics, paying particular attention to aspects of power that are less readily visible. Sharing experiences can retrigger trauma. People conducting co‐production work need to understand trauma and how this may impact upon an individual's sense of psychological safety. Long‐term funding is vital to enable projects to have enough time for the establishment of trust and delivery of tangible results. Conclusions: Co‐production principles are highly suitable when developing trauma‐informed services. Greater consideration needs to be given as to whether and how people share lived experiences, the need for safe spaces, honesty and humility, difficult dynamics between empowerment and safety and whether and when blurring boundaries may be helpful. Our findings have applicability to policy‐making, funding and service provision to enable co‐production processes to become more trauma‐informed. Public Contribution: Bridging Gaps was started by a group of women who have experienced complex trauma, including addiction, homelessness, mental health problems, sexual exploitation, domestic and sexual violence and poverty, with a general practitioner (GP) who provides healthcare to this population, alongside a support worker from the charity One25, a charity that supports some of the most marginalised women in Bristol to heal and thrive. More GPs and healthcare researchers joined the group and they have been meeting fortnightly for a period of 4 years with the aim of improving access to trauma‐informed primary care. The group uses co‐production principles to work together, and we aim to ensure that women who have experienced trauma are key decision‐makers throughout our work together. This article is a summary of our learning, informed by discussion, observations and interviews with members of the group. [ABSTRACT FROM AUTHOR]

Background In 1994, the region of Emilia-Romagna recognized the importance of citizens' participation in the regional health-care system and recommended the institution of Mixed Advisory Committees in the health districts and hospitals with the objective of monitoring and assessing health-care quality from the users' perspective. Design This paper reports findings from a qualitatively based evaluation involving direct observations of the committees and 39 semi-structured interviews: 20 with representatives of patients and users' associations and 19 with health professionals and managers involved in the activities of the committees. Results The Mixed Advisory Committees introduced for the first time in the Italian health system an ongoing deliberative approach that gave patients and users' representatives the opportunity to be involved in health service governance. The committees enabled the creation of a method of collective participation that overcame the reductive individualistic 'approach' to health-care participation. MAC participants evaluated the committees positively for their mixed composition, which integrated different cultures, experiences and professional profiles with the potential to contribute to solving health-care problems, in a consultative role. Although patients and users' representatives were able to exert some form of influence, their expectations were greater than the results obtained. The study illuminated some weak points of public consultation, such as a decline in participation by citizen representatives and a weak influence on decision making. Discussion and conclusions MACs developed a mechanism of participation that provides health-care users' representatives with the opportunity to contribute to the identification and analysis of critical points of the health-care system. A strength of the MACs is their level of institutionalization within the health system in the region of Emilia-Romagna. However, they contain a problem of representativeness, lacking a formal system of determining a representative composition from among patients and users' associations. The case study also illustrates that participation without the cooperation of the health service, and financial and organizational support, will result in a decline in citizen participation, given the resources required of these volunteer citizens in return for limited results. [ABSTRACT FROM AUTHOR]

Background Patient autonomy in antenatal screening is a high priority for policy developers in many countries. Objective This paper presents women's understandings of how health professionals should facilitate informed screening choices with an emphasis on their understandings of autonomy and advice. Design, setting and participants The study was carried out in 2009 in the UK, using a qualitative approach. Ninety-eight participants of African, British White, Caribbean, Chinese and Pakistani origin had semi-structured interviews, which were analysed using framework analysis. Results Four themes were identified during the analysis: 'Meanings of advice in antenatal screening: the advice continuum', 'Recognition of the role of health professionals in decision making', 'Understandings of advice in the context of autonomous decision making' and 'Reasons given for wanting advice'. Women said they valued advice from health professionals to make decisions about antenatal screening, but their understandings of 'advice' ranged from information giving only to direction about screening choices. Conclusion Many women wanted health professionals to support the process of making informed choices by engaging in discussion and did not see advice as incompatible with making autonomous choices. However, some women wanted direction about whether to have a screening test or not, something which policy and guidelines explicitly prohibit. This may cause an ethical dilemma for health professionals who are required to both support women's preference for care and adhere to a policy of non-directiveness. Further clarification is needed on how health professionals should support the process of making informed choices when women ask for clear direction on screening choices. [ABSTRACT FROM AUTHOR]

Background Current western policy, including the UK, advocates choice for service users and their families, taking greater control and being more involved in decision making. However, children's role in health decision making, especially from their own perspective, has received less research attention compared to doctors and parents' perspectives. Objective To explore the perspective and experiences of disabled young people with degenerative conditions as they face significant medical interventions and engage in decision-making processes. Design and methods Findings from a longitudinal qualitative study of 10 young people (13-22 years) with degenerative conditions are reported. Individual semi-structured interviews were conducted with participants over 3 years (2007-2010); the paper reports data from all three interview rounds. Interviews focused on medical intervention choices the young people identified as significant. Results Although the young people in this study felt involved in the medical intervention choices discussed, findings demonstrate a complex and diverse picture of decision making. Results highlighted different decisional roles adopted by the young people, the importance of information heuristics and working with other people whilst engaging in complex processes weighing up different decisional factors. Discussion Young people's experiences demonstrate the importance of moving beyond viewing health choices as technical or rational decisions. How each young person framed their decision was important. Recognizing this diversity and the importance of emerging themes, such as living a normal life, independence, fear of decisions viewed as 'irreversible' and the role of parents and peers in decision making highlights that, there are clear practice implications including, active practitioner listening, sensitivity and continued holistic family working. [ABSTRACT FROM AUTHOR]

Introduction: Limited evidence exists about which patient and stakeholder engagement practices support or hinder study teams as they negotiate different viewpoints in decisions about the design and conduct of patient‐centered outcomes research. Methods: We applied a multiple‐embedded descriptive case study design for six studies funded by the Patient‐Centered Outcomes Research Institute (PCORI). We interviewed 32 researchers and stakeholder partners, including patients, caregivers and clinicians, and reviewed documents related to each study (e.g., publications, and progress reports submitted to PCORI). Findings: Overall, researchers reported that incorporating different viewpoints was a strength or opportunity to learn rather than something to be avoided or dreaded. Across cases, different viewpoints and priorities, often related to ethical or pragmatic considerations, emerged between researchers and stakeholders, between stakeholder groups (e.g., patients and clinicians) or within groups (e.g., amongst researchers). Examples of navigating different viewpoints arose across study phases. The length of time to resolve issues depended on how strongly people disagreed and the perceived importance or impact of decisions on the study. All cases used collaborative decision‐making approaches, often described as consensus, throughout the study. Interviewees described consensus as using negotiation, compromise or working towards an agreeable decision. To encourage consensus, cases actively facilitated group discussions with an openness to diverse opinions, remained flexible and open to trying new things, referenced a ground rule or common goal and delegated decisions to partners or smaller workgroups. When viewpoints were not easily resolved, cases used different approaches to reach final decisions while maintaining relationships with partners, such as elevating decisions to leadership or agreeing to test out an approach. No one engagement structure (e.g., advisory group, coinvestigator) stood out as better able to manage different viewpoints. Teams adjusted engagement structures and behaviours to facilitate an overall culture of inclusion and respect. Partners acknowledged the intentional efforts of researchers to incorporate their perspectives, navigate challenges and communicate the value of partner input. Conclusion: By using collaborative decision‐making in the early stages and throughout the study, researchers built trust with partners so that when decisions were difficult to resolve, partners still felt listened to and that their input mattered. Patient or Public Contribution: Members of the PCORI Patient Engagement Advisory Panel in 2019–2020 provided input into the design of the study, including the research questions and approaches to data collection and analysis. [ABSTRACT FROM AUTHOR]

Context‐specific research is needed on the relationship between household animal production and nutrition outcomes to inform programmes intervening in small‐scale animal production. We examined associations between household animal/fishpond ownership and animal source food (ASF) consumption among 6‐ to 12‐month‐old infants enroled in the control arm of a cluster‐randomised controlled trial in rural Bangladesh. We measured ASF consumption using a 7‐day food frequency questionnaire at 6, 9 and 12 months and assessed household animal/fishpond ownership at 12 months. We developed negative binomial regression models with random intercepts for infant and cluster, controlling for infant age and sex, maternal age, socioeconomic status and season. Models were stratified by a dichotomised maternal decision‐making score. Compared with infants in households without each animal type, those with 4–10 and ≥11 poultry consumed eggs 1.3 (95% confidence interval [CI]: 1.1, 1.6) and 1.6 (95% CI: 1.3, 2.0) times more, respectively; 2–3 and ≥4 dairy‐producing animals consumed dairy 1.9 (95% CI: 1.3, 2.7) and 2.0 (95% CI: 1.3, 3.1) times more, respectively; and ≥12 meat‐producing animals consumed meat 1.4 (95% CI: 1.0, 1.8) times more. It was unclear whether there was an association between fishpond ownership and fish consumption. Our results did not suggest that maternal decision‐making power was a modifier in the relationship between animal/fishpond ownership and ASF consumption. In this South Asian context, strategies intervening in household animal production may increase infant consumption of eggs, dairy and meat, but not necessarily fish. Research is needed on the role of market access and other dimensions of women's empowerment. Key messages: Household ownership of poultry and dairy‐ and meat‐producing animals was associated with higher infant intakes of eggs, dairy and meat, respectively. There was not a clear association between household fishpond ownership and infant fish consumption.While we found no significant differences in these relationships by maternal decision‐making power, future research in this setting should consider the relative importance of other dimensions of women's empowerment or other contextual factors, such as market access.In Bangladesh and similar rural South Asian settings, programmes aiming to impact infant and child diet through agricultural interventions must assess the factors constraining both production and consumption. [ABSTRACT FROM AUTHOR]

Introduction: Understanding participants' concerns and information needs regarding broadened consent is crucial to ensure transparency and participant autonomy. Our study qualitatively examined these issues in women participating in the Personalized RISk‐based MAmmascreening study (PRISMA). The original PRISMA informed consent was project‐specific (i.e., breast cancer research), limiting the scope of secondary research. We explored participants' needs for broadened consent to preserve informed decision‐making while maximising the potential re‐use of data. Methods: Focus groups (FGs) were performed following a semistructured discussion guide. Two independent researchers analysed the data thematically using an inductive approach. Findings: Twenty‐three asymptomatic women and 13 women diagnosed with breast cancer were randomly divided into six FGs. Four superordinate themes were identified: (1) Normalization, (2) Attitude towards the pharmaceutical industry, (3) Privacy and (4) Knowledge. Our participants viewed data sharing as an important conduit for advancing medical science. Perceived integrity was more often attributed to noncommercial than commercial parties, with a marked mistrust towards the pharmaceutical industry. Most requested information needs related to data protection. Participants' ideal consent process would confer a range of options; for example, they would be able to choose with whom data can be shared, whether data will be de‐identified or anonymous, the expiration date of their consent and how, if requested, general and personal study results would be disclosed. Conclusion: Our participants expressed clear information needs and a strong desire to be actively engaged in future data sharing decisions. Given that many researchers collaborate with commercial parties, building public confidence in these institutions would be beneficial. Illustrative examples addressing privacy concerns and clarifying difficult terms would aid consent decision‐making. Although our participants displayed great altruism in sharing their data and accepted that broad consent would ultimately facilitate future research, broad consent did not reflect their ideal situation. Dynamic consent may be an option but warrants further feasibility research. Patient and Public Contribution: Women were recruited from the general breast cancer screening population. Their perceptions and information needs, as reported in this study, will not only inform broadened consent for PRISMA but ideally guide other consent templates and decisions regarding consent processes. [ABSTRACT FROM AUTHOR]

Introduction: Using co‐design processes, we aimed to develop an evidence‐based decision guide for family carers and hospital professionals to support decision‐making about eating and drinking for hospital patients with severe dementia. Methods: Following a systematic review, we interviewed people with mild dementia, family carers and hospital professionals in England. We then held co‐design workshops with family carers and hospital professionals. In parallel with the workshops, we used a matrix to synthesize data from all studies and to develop a decision guide prototype. The prototype was iteratively refined through further co‐design workshops and discussions among researchers and Patient and Public Involvement (PPI) representatives. We conducted user testing for final feedback and to finalize the decision guide. Results: Most participants acknowledged the limited benefits of tube feeding and would not use or want it for someone with severe dementia. However, they found decision‐making processes and communication about nutrition and hydration were emotionally demanding and poorly supported in acute hospitals. The co‐design groups developed the aims of the decision guide to support conversations and shared decision‐making processes in acute hospitals, and help people reach evidence‐based decisions. It was designed to clarify decision‐making stages, provide information and elicit the values/preferences of everyone involved. It encouraged person‐centred care, best‐interests decision‐making and multidisciplinary team working. From user testing, family carers and hospital professionals thought the decision guide could help initiate conversations and inform decisions. The final decision guide was disseminated and is being used in clinical practice in England. Conclusion: We used rigorous and transparent processes to co‐design the decision guide with everyone involved. The decision guide may facilitate conversations about nutrition and hydration and help people reach shared decisions that meet the needs and preferences of people with severe dementia. Future evaluation is required to test its real‐world impacts. Patient or Public Contribution: People with mild dementia, family carers and hospital professionals contributed to the design of the decision guide through the interviews and co‐design workshops. PPI members helped design study procedures and materials and prepare this manuscript. [ABSTRACT FROM AUTHOR]

Objective: Dashboards can support person‐centered care by helping people partner with their clinicians to coproduce care based on preferences, shared decision‐making, and evidence‐based treatments. We engaged caregivers of children with juvenile idiopathic arthritis (JIA), adults with rheumatoid arthritis (RA), and clinicians in a pilot study to assess their experiences and the utility and impact of an electronic previsit questionnaire and point‐of‐care dashboard to support coproduction of rheumatology care. Methods: We employed a mixed‐methods design to assess users' perceptions of a customized electronic health record rheumatology module at four pediatric rheumatology practices and two adult rheumatology practices. We surveyed a convenience sample of caregivers of children with JIA (n = 113), adults with RA (n = 116), and clinicians (n = 12). We conducted semistructured interviews with 13 caregivers and patients and six care teams. Experiences were evaluated using descriptive statistics and thematic analyses. Results: Caregivers of children with JIA and adults with RA reported the dashboards were useful during discussions (88%) and helped them talk about what mattered most (82%), make health care decisions (83%), and create a treatment plan (77%). Clinicians provided similar feedback. Two‐thirds (67%) of caregivers and adults and 55% of clinicians would recommend the dashboard to peers. System usability scores (77.1 ± 15.6) were above average. Dashboards helped users make sense of health information, communicate more effectively, and make decisions. Improvements to the dashboards and workflows could enhance patient self‐management and clinician efficiency. Conclusion: Visual point‐of‐care dashboards can support caregivers, patients, and clinicians to coproduce rheumatology care. Findings demonstrate a need to spread and scale for broader benefit and impact. [ABSTRACT FROM AUTHOR]

Aim: To explore the experiences of living with symptomatic atrial fibrillation. Design: This study, with a descriptive qualitative design, was performed using semi‐structured individual interviews. Method: Six women and nine men with symptomatic atrial fibrillation were included. The transcribed interviews were analysed using qualitative content analysis. The COREQ checklist was followed. Results: The analysis resulted in a main theme, namely balancing life and included the themes striving for illness control, becoming a receiver or an active partner in care and dealing with changed self‐image. The participants strived to understand their illness, prevent attacks and manage anxiety. Some of the participants were not involved in decision‐making, were uninformed about self‐care measures, reported a lack of continuity in care and felt that the doctors focused on information about the medical part of care. [ABSTRACT FROM AUTHOR]

Background: Early detection of symptoms and prompt diagnosis of ovarian cancer are considered important avenues for improving patient experiences and outcomes. Methods: This qualitative study used a phenomenological approach to perform patient interviews, collecting individual accounts of the prediagnostic phase in women diagnosed and treated for ovarian cancer in 2016–2017. Purposive sampling was used to obtain a diverse sample of 24 participants, while thematic content analysis was used to extract themes and subthemes from interview data. Results: Three themes and nine subthemes were identified. The first theme was women's delay in recognizing symptoms and seeking care, with subthemes on the lack of knowledge about early signs of ovarian cancer, gender‐related barriers and false reassurance from negative test results. A second theme was missed opportunities during healthcare encounters, due to misattribution of women's symptoms by their physicians, underestimation of symptom severity and need for mediation and inadequate tests and/or false negative results. Finally, interviews highlighted the use of resources and alternative healthcare pathways, including complementary/alternative medicines, access to private health care and women's capacity for action and decision‐making (agency) about their health. Conclusion: Delayed diagnosis of ovarian cancer is rooted in both individual factors (lack of health literacy, reluctance to seek care) and systemic issues (missed opportunities in healthcare encounters, access to timely specialist care). Further research is needed to investigate the extent to which traditional gender roles and socioeconomic inequalities condition women's ability to manage their own health and to interact with health professionals and the health system. Patient and Public Contribution: In addition to the patient participation during the interviews, one author was a representative of a patient association. [ABSTRACT FROM AUTHOR]

Adequate intake of high‐quality nutritious foods during infancy and early childhood is critical to achieving optimal growth, cognitive and behavioural development, and economic productivity later in life. Integrating high‐quality and nutrient‐dense animal source foods (ASFs), a major source of protein and micronutrients, into children's diets is increasingly considered essential to reducing the global burden of malnutrition in low‐ and middle‐income countries. While eggs are an ASF that shows promise for mitigating child undernutrition, interventions promoting egg consumption among children have had mixed results in improving egg intake and child growth outcomes. As part of an evaluation of a demand creation campaign promoting egg consumption, qualitative research was carried out in September 2019 to assess sociocultural and household factors affecting egg intake among young children living in Kaduna State, Nigeria, where a thriving egg industry and childhood stunting rates of 50% exist. Methods included freelisting exercises (11), key informant interviews (11), in‐depth interviews (25) and FGDs (4). Results illuminated cultural rules that restrict egg consumption among children living in low‐income households. These rules and norms reflect social and economic valuations that foster male dominance in household decision‐making and guide food purchasing and intrahousehold food allocation that allow men to consume eggs more regularly. Study results highlight sociocultural considerations when selecting food interventions to address child malnutrition in low‐income contexts. Interventions encouraging increased consumption of ASFs, and specifically eggs in young children, should be informed by formative research to understand sociocultural norms and beliefs guiding egg consumption. Key messages: In food classification systems, eggs are considered a light, non‐filling food associated with enjoyment, status and wealth, and in low‐income households widespread consumption of eggs is reserved for special occasions.Cultural rules devised to regulate egg consumption according to age and gender in low‐income households reflect differential social and economic valuations that favour men and discourage egg consumption in young children.Interventions encouraging increased egg intake in young children must consider economic constraints and related sociocultural norms and beliefs guiding egg consumption and identify contextually appropriate strategies to buffer the effects of gender and age bias. [ABSTRACT FROM AUTHOR]

Women with learning disabilities are less likely to breastfeed than other women. They may find it hard to understand or learn feeding techniques or know that they have infant feeding choices. This population may be supported during their pregnancies by a range of professionals with differing priorities and responsibilities towards both the mother and the baby. This puts considerable pressure on health care professionals including, but not limited to, midwives, infant feeding specialists, health visitors and learning disability nurses. Those who support women with learning disabilities through their journey into motherhood have a responsibility to ensure the women in their care have the information they need to make decisions about a range of issues, including infant feeding. In the absence of dedicated lactation consultants, this is one of many issues to be discussed within time‐limited appointments. Little is known about the experience of supporting women with learning disabilities to make infant feeding decisions from the point of view of health professionals. Using a qualitative descriptive research design, we conducted online, semistructured interviews with seven UK health professionals about their experience of supporting women with learning disabilities in infant feeding. Thematic analysis identified three themes: the importance of health professionals' having unconditional, positive regard; the need for an individualised approach to supporting women to make infant‐feeding decisions; and being part of the support network. This suggests that women with learning disabilities can make and put into practice infant feeding decisions if they have access to the right support at the right time. Key messages: With the right support at the right time, women with learning disabilities can make infant feeding decisions and successfully feed their babies.Infant feeding options should be discussed early in the pregnancy, with repetition and the use of accessible resources such as videos to support decision‐making.Breastfeeding should be considered a viable option for all women.Health professionals need to be flexible in their approach to supporting infant feeding decision‐making, working as part of the woman's circle of support.Accessible resources can be helpful in supporting infant feeding decision‐making, but one size does not fit all. [ABSTRACT FROM AUTHOR]