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Background: For adults with inflammatory bowel disease (IBD), they experience many challenges in dietary decision‐making. Thus, this study examined the perspective and experiences of adults with IBD in dietary decision‐making. Objective: This study aimed to explore the perception and consideration of people with IBD in their daily dietary decisions through monitoring, interpretation and action during the decision‐making process. Design: A qualitative study of individuals affected by IBD was conducted through semistructured interviews. Results: Twenty patients were recruited from four tertiary hospitals in Nanjing, China, and each participant completed a semistructured interview. The majority of participants reported on the process and experience of dietary decision‐making. Key themes were categorised into three stages: (1) assessing needs, preferences and food cues (monitor); (2) moving from experience to expertise (interpret) and (3) balancing expectations amidst limitations (act). The majority of participants reported that their decisions were shaped by assessing current disease status and food cues. Those interviewed with IBD were willing to make tradeoffs for bowel stability, but their decisions were also influenced by past dietary experiences and traditional Chinese beliefs. The lack of awareness of dietary guidelines was a significant barrier to healthy eating decisions. Positive or negative feelings accompanied dietary decisions. Conclusion: Although most people with IBD change their diet after diagnosis, the changes made are often inconsistent with existing dietary recommendations. Several factors can influence the dietary decision‐making process. This study will help assess the experiences of people with IBD in dietary decision‐making to encourage the formation of targeted dietary health and well‐being interventions. Knowledge of nutrition and diet should be provided in education and training programmes for IBD management. Patient or Public Contribution: The first three authors of this paper were the lead researchers in this study's design. These authors were mentored by patient researchers who also contributed to the manuscript, and the research process was co‐lead and directed by other patient participants and consultants. The results of this paper were directly obtained from patient participants. [ABSTRACT FROM AUTHOR]

Objectives: Despite high levels of mental ill‐health amongst young people (aged 15–30), this group demonstrates low help‐seeking and high drop‐out from mental health services (MHS). Whilst shared decision‐making can assist people in receiving appropriate and effective health care, young people frequently report that they do not feel involved in treatment decisions. The current study focused on co‐design of a clinical education and participant information programme for the Brain and Mind Centre Youth Model of Care. This model, which articulates a youth‐focused form of highly personalised and measurement‐based care, is designed to promote shared decision‐making between young people and clinical service providers. Methods: We conducted workshops with 24 young people (16–31; MAge = 21.5) who had accessed mental health services. Participants were asked what advice they would give to young people entering services, before giving advice on existing materials. Workshops were conducted and transcripts were coded using thematic analysis by two lived experience researchers and a clinical researcher. Results: Young people found it empowering to be educated on transdiagnostic models of mental illness, namely clinical staging, which gives them a better understanding of why certain treatments may be inappropriate and ineffective, and thus reduce self‐blame. Similarly, young people had limited knowledge of links between mental health and other life domains and found it helpful to be educated on multidisciplinary treatment options. Measurement‐based care was seen as an important method of improving shared decision‐making between young people and health professionals; however, to facilitate shared decision‐making, young people also wanted better information on their rights in care and more support to share their expertise in their own needs, values and treatment preferences. Conclusions: These findings will inform the delivery of the further development and implementation of a youth‐specific clinical education and participant information programme for the BMC Youth Model. Patient or Public Contribution: Workshops were facilitated by researchers with lived expertise in mental ill‐health (A.H. and/or C.G.) and a clinical researcher (who has expertise as an academic and a clinical psychologist). A.H. and C.G. were also involved in conceptualisation, analysis, interpretation, review and editing of this paper. [ABSTRACT FROM AUTHOR]

Purpose: Sociometric studies and adult reports have established that children with Language Disorder (LD) are at risk of peer relationship difficulties. However, we have limited knowledge of how children with LD understand friendship, whom they deem as a good or bad friend, and what role their friendship concepts play in their relationships with peers. This exploratory study aimed to conduct a qualitative investigation into the friendship concepts that children with LD hold and to explore their strategies for making friends. Methods: We conducted multiple, art‐informed interviews on the topic of friendship with 14 children with LD at the age of 6–8 years. Participating children were based in the United Kingdom and Republic of Ireland. They attended enhanced provision, specific speech and language classes and mainstream classrooms. We used framework analysis to map children's responses to Selman's (1979) developmental model of interpersonal understanding, which espouses a theory of children's social development within the context of peer relationships. Results: The understanding of friendship formation in children with LD varied from physical presence to mutual support and sharing. Children's ideas about a good/bad friend represented the lowest developmental stage. Participants from the mainstream classroom demonstrated the highest stages of interpersonal understanding. Children with LD did not mention their language abilities as a barrier to making friends. Conclusion: There are limited studies exploring friendship directly from children with LD, and this study provides insights into this gap, by utilising art‐informed interviews. Children's immature understanding of a good/bad friend points towards a potential susceptibility to false friends, which we suggest needs further empirical validation. We also found that children with LD did not pay attention to their language difficulties when making friends, which raises questions about the ways diagnoses are shared with children. WHAT THIS PAPER ADDS: What is already known on the subject: Children with Language Disorder (LD) are at risk of peer relationship difficulties. Studies to date are based on sociometrics and adult reports. Only a few studies employ participatory approaches to research with children, directly engaging children with LD when exploring their friendships What this paper adds: This paper directly asks children with LD about their understanding of friendship and strategies for making friends.Physical proximity and play are important to children.s understanding of friendship especially in recognising good and bad friends. This indicates potential reasons for children with LD being susceptible to false friendsAdditionally, children with LD do not perceive language and communication as a barrier to making friends. What are the potential or actual clinical implications of this work?: Concepts around friendship and good/bad friends should be routinely assessed and targeted (if appropriate) in interventions. The study highlights the need to continue discussing practices around sharing diagnoses with children with LD. [ABSTRACT FROM AUTHOR]

Understanding the drivers of improvements in child undernutrition at only the national level can mask subnational differences. This paper aimed to understand the contributions of factors in the enabling environment to observed differences in stunting reduction between districts in Rwanda. In 2017, we conducted 58 semi‐structured interviews with mid‐level actors (n = 38) and frontline workers (n = 20) implementing Rwanda's multi‐sectoral nutrition policy in five districts in which stunting decreased (reduced districts) and five where it increased or stagnated (non‐reduced districts) based on Rwanda's 2010 and 2014/15 Demographic and Health Surveys. Mid‐level actors are government officials and service providers at the subnational level who represent the frontline of government policy. Interviews focused on political commitment to and policy coherence in nutrition, and contributors to nutrition changes. Responses were coded to capture themes on the changes and challenges of these topics and compared between reduced and non‐reduced districts. Descriptive statistics described district characteristics. Political commitment to nutrition was high in both reduced and non‐reduced districts. Respondents from reduced districts were more likely to define commitment to nutrition as an optimal implementation of policy, whereas those from non‐reduced districts focused more on financial commitment. Regarding coherence, respondents from reduced compared to non‐reduced districts were more likely to report the optimal implementation of multi‐sectoral nutrition planning meetings, using data to assess plans and progress in nutrition outcomes and integration of nutrition into the agriculture sector. In contrast, respondents from non‐reduced districts more often reported challenges in their relationships with national‐level stakeholders and nutrition and/or monitoring and evaluation capacities. Enhancing the integration of nutrition in different sectors and improving mid‐level actors' capacity to plan and advocate for nutrition programming may contribute to reductions in stunting. Key messages: Understanding the lens through which policy implementers at subnational levels view multi‐sectoral nutrition strategies and their role in these strategies provides useful information on the facilitators and constraints of implementation for nutrition actions.Differences in leadership and responsiveness to prioritise nutrition at the subnational levels are important in decentralised governance systems where responsibilities in nutrition planning, coordination and implementation shift to mid‐level actors.Mainstreaming nutrition responsibilities across sectors and administrative levels requires investments in capacities to plan, monitor and advocate for multi‐sectoral nutrition programming, including for mid‐level actors. [ABSTRACT FROM AUTHOR]

Introduction: Parent carers of children with special educational needs or disabilities are at risk of poorer health and wellbeing outcomes because of the distinct and challenging circumstances they face. Evaluations of interventions promoting the health of parent carers should focus on measuring the aspects of health and wellbeing which are most relevant to this group. As part of a programme of research on parent carer‐focused interventions, this study aimed to understand which aspects of health and wellbeing are perceived by parent carers as most meaningful and important. Methods: A qualitative study using semistructured online interviews was conducted. A purposive sample of parent carers was interviewed about relevant health and wellbeing outcomes. Transcripts were analysed thematically. Results: Thirty parent carers were interviewed, 19 of whom had experienced a health‐promoting intervention, either as participants (n = 14) or facilitators (n = 5). Three main themes were identified: 'self, identity and beliefs'; 'social connections and support' and 'health‐promoting practices and outcomes.' Each theme encompassed the challenges participants faced, and the changes that helped them overcome these challenges. 'Self‐identity' challenges focused on the overwhelming nature of the parental care role and the emotional impact of this. Changes were brought about by developing a positive mindset, increasing confidence, and reconnecting with aspects of their identity which were important to them before they became parent carers. Challenges related to 'social connections' reflected parent carers' isolation. Change was brought about through increased peer support and peer interactions. Parent carers experienced challenges in terms of 'health‐promoting activities' because they lacked free time and experienced poor physical health. Changes were brought about by engagement in health‐promoting activities of various kinds. Conclusion: Parent carers view health and wellbeing in terms of overcoming the common challenges they face as a group. These challenges reflect the ways in which their physiological and psychological needs are often unmet. Researchers interested in measuring parent carer health and wellbeing should consider the specific challenges this group face, as well as theoretical frameworks which can make sense of these challenges, such as self‐determination theory. Patient or Public Contribution: Our team carries out patient and public involvement (PPI) through a Family Faculty group facilitated by a Family Involvement Co‐ordinator (A. McD.) who is herself a parent carer. A study‐specific PPI working group was established which included members of the Family Faculty. The PPI group advised on various aspects of the research as reported in the paper. The manuscript was co‐authored by the team's Family Involvement Co‐ordinator (A. McD.). [ABSTRACT FROM AUTHOR]

Healthcare systems and health professionals are facing a litany of stressors that have been compounded by the pandemic, and consequently, this has further perpetuated suboptimal mental health and burnout in nursing. The purpose of this paper is to report select findings from a larger, national study exploring gendered experiences of mental health, leave of absence (LOA), and return to work from the perspectives of nurses and key stakeholders. Given the breadth of the data, this paper will focus exclusively on the qualitative results from 53 frontline Canadian nurses who were purposively recruited for their workplace insight. This paper focuses on the substantive theme of "Breaking Point," in which nurses articulated a multiplicity of stress points at the individual, organizational, and societal levels that amplified burnout and accelerated mental health LOA from the workplace. These findings exemplify the complexities that underlie nurses' mental health and burnout and highlight the urgent need for multipronged individual, organizational, and structural interventions. Robust and timely interventions are needed to restore the health of the nursing profession and sustain its future. [ABSTRACT FROM AUTHOR]

Background: Globally, it is estimated that one in three adults live with two or more long‐term conditions (multiple long‐term conditions, MLTCs), that require self‐management. People who experience socioeconomic deprivation face significant health inequalities due to a range of interrelated characteristics that lead to a lack of resources and opportunities. Previous research with underserved populations indicate low levels of trust towards primary care providers and potential barriers for developing patient‐healthcare professional relationships. The purpose of this paper is to explore the barriers and facilitators to self‐managing MLTCs, amongst people who experience socioeconomic deprivation. Methods: Semistructured one‐to‐one interviews with adults (n = 28) living in London and Sheffield, United Kingdom with MLTCs who are experiencing socioeconomic deprivation. Participants were recruited through general practices, community channels and social media. Data were analysed in NVivo using reflexive thematic analysis methods. Findings: Four analytical themes were developed: (1) challenges in accessing healthcare services, financial assistance, and cultural awareness; (2) empowerment and disempowerment through technology, including digital exclusion, and use of technology; (3) impact and causes of exclusion on self‐management, including social isolation, area‐based and economic exclusion, and health‐related stigma and (4) adapting self‐management strategies, including cost‐effective, and culturally/lifestyle appropriate strategies. Conclusions: Future health interventions and services need to be developed with consideration of the combined complexities of managing MLTCs while experiencing socioeconomic deprivation. Increased awareness in practitioners and commissioners of the complexities surrounding the lives of people experiencing socioeconomic deprivation, and the need for targeted strategies to promote self‐management of MLTCs are of great importance. Patient or Public Contribution: A patient advisory group contributed to all stages of the study, including providing important feedback on study documents (topic guides and recruitment materials), as well as providing critical insights surrounding the interpretation of interview data. [ABSTRACT FROM AUTHOR]

Background: Spoken discourse impairments post‐traumatic brain injury (TBI) are well‐documented and heterogeneous in nature. These impairments have chronic implications for adults in terms of employment, socializing and community involvement. Intervention delivered by a speech–language pathologist (SLP) is recommended for adults with discourse impairments post‐TBI, with an emphasis on context‐sensitive treatment. The developing evidence base indicates a wide array of treatment components for SLPs to evaluate and implement within their clinical practice. However, there is limited insight into how SLPs are currently treating discourse impairments and the rationales informing clinical practice. Aims: To explore the under‐researched area of clinical practice for spoken discourse interventions with adults post‐TBI, including treatment components and clinician rationales, and to contribute towards a shared knowledge base. Methods & Procedures: Participants were recruited via purposeful sampling strategies. Six SLPs participated from Australia, the United Kingdom (UK) and the United States (US). Semi‐structured interviews were conducted via Zoom. Interviews were manually transcribed, coded and analysed via a qualitative content analysis approach. Outcomes & Results: :Participants described discourse treatment practices across various settings and TBI recovery stages. Results indicated that SLPs used numerous treatment activities, resources and outcome measures. Intervention approaches primarily targeted social communication skills, strategy development/utilization and insight‐building. Clinical practice conformed to available guidelines where possible, reflected best practice and incorporated components of the research literature. Participants reported using individualized treatment activities aimed at addressing client‐specific factors and rationales prioritized tailored, context‐sensitive and goal‐directed treatment. Conclusions & Implications: This study provided insight into a previously under‐researched area. It highlighted a wide range of treatment activities and factors informing current SLPs' treatment of spoken discourse impairment post‐TBI. Overall, clinical practice and rationales discussed in this study were aligned with best practice and emphasized a contextualized, individualized approach to discourse treatment across service settings and stages of recovery. Participants identified areas requiring further support, including access to training, resources and research, and the challenge of finding suitable outcome measures. Further investigation into discourse management post‐TBI, from initial assessment to outcome measurement, may help inform clinical decision‐making and the transfer of research to practice. WHAT THIS PAPER ADDS: What is already known on the subject: Spoken discourse impairments occur in dialogic and monologic productions post‐TBI. Interventions targeting both genres are detailed within the research literature; however, studies exploring clinical practice and decision‐making for discourse interventions post‐TBI are limited. What this paper adds to existing knowledge: This study provides new insight into the current treatment targets, activities, resources and outcome measures employed by clinicians supporting adults with discourse impairment post‐TBI. It details the factors that influence clinical decision‐making for this caseload and identifies an emphasis on client priorities and the value of clinician experience. What are the potential or actual clinical implications of this work?: This study identifies the broad and complex considerations required to deliver context‐sensitive discourse intervention post‐TBI. It indicates the need for an in‐depth review from assessment to treatment outcomes to better understand and support this area of practice and to direct future research. This study also highlighted the role of clinician experience in discourse intervention and the value of sharing clinical knowledge and resources within and across the profession to support all levels of clinician experience. [ABSTRACT FROM AUTHOR]

Background: People with Parkinson's disease (PD) do not always access specialist outpatient services in a timely manner in Ireland. The perspectives of people living with PD, relating to service access, are largely absent in the existing literature. Aim: To explore experiences of PD service access for people living with PD, using a qualitative approach. Methods: Purposive maximum variation sampling was used. Semi‐structured telephone interviews were conducted with 25 service users, including people with PD (n = 22) and supporting carers (n = 3). Informed consent was obtained from all participants. Interviews ranged in duration from 30 to 90 min. Data were managed in NVivo 12 and interpreted inductively using thematic analysis. The researchers were reflexive throughout the research process. The Consolidated Criteria for Reporting Qualitative Research checklist was employed to maximise transparency. Results: The findings highlight several key barriers to and facilitators of equitable and timely service access. Three key themes were identified comprising experiences of PD service access including 'geographical inequity', 'discriminatory practices', and 'public and private system deficits'. Together, these themes illustrate how a two‐tiered and under‐resourced health system lacks capacity, in terms of infrastructure and workforce, to meet PD needs for both public and private patients in Ireland. Conclusions: These findings point to problems for PD care, relating to (i) how the health system is structured, (ii) the under‐provision and under‐resourcing of specialist outpatient PD services, including medical, nursing, and multidisciplinary posts, and (iii) insufficient PD awareness education and training across health settings. The findings also show that telemedicine can provide opportunities for making access to certain aspects of PD care more flexible and equitable, but the feasibility and acceptability of technology‐enabled care must be assessed on an individual basis. Implications for policy, practice and research are discussed. Patient or Public Contribution: The design and conduct of this study were supported by an expert advisory group (EAG) of 10 co‐researchers living with PD. The EAG reviewed the interview schedule and the protocol for this study and provided detailed feedback from their perspective, to improve the methods, including the interview approach. The group also reviewed the findings of the study and contributed their insights on the meaning of the findings, which fed into this paper. [ABSTRACT FROM AUTHOR]

Despite a history of critique, concentrated discussion and improved assessment processes, neglect continues to be a major challenge for child protection services. This paper draws on findings from a government‐commissioned analysis of 'serious case reviews' (SCRs) in England, arising from incidents of serious child abuse in 2017–2019. There were 235 cases, for which 166 final reports were available. Alongside a quantitative analysis of the whole cohort, we undertook an in‐depth qualitative analysis of 12 cases involving neglect. A key challenge in responding to neglect in its different forms is that it can be so widespread amongst families that practitioners no longer notice its severity or chronicity – it becomes normalised. In this paper we explore two dimensions of the 'paradox of neglect' where it seems to be everywhere and nowhere simultaneously. The first is that neglect is so closely bound up with the prevalence of poverty that little action is taken to address it. The second is that the overwhelming nature of neglect can blind practitioners to other forms of maltreatment that may also be present within a family. Practitioners, now more than ever, need to recognise the dimensions of this paradox to protect children from neglect. [ABSTRACT FROM AUTHOR]

Background: A resurgence in teaching coding in primary school classrooms has led to a pedagogical swing towards using physical computing and coding to develop students' use of algorithms, computational thinking, and problem‐solving skills. Two obstacles impede the optimal development of these objectives: the availability of a suitable pedagogy and an instructional sequencing model for primary school teachers to effectively present coding and computational thinking concepts and skills to students in alignment with their developmental stage. Objective: This study aims to address both obstacles by introducing the 3C Model, a newly developed instructional sequence grounded in established pedagogies and designed to effectively teach coding and computational thinking skills to primary school students based on their developmental stage. Methods: The qualitative study employed two data sources to triangulate findings, using: (1) semi‐structured interviews and thematic analysis to investigate 11 primary school students' perceptions of their learning experiences with the 3C Model, and (2) researcher observations along with reflections of the students' developed and demonstrated learning through the method of knowing‐in‐action, reflection‐in‐action, and reflection‐on‐action. Results and Conclusions: The findings of this study fill a gap in the existing literature by demonstrating that the pedagogical and sequential approach embedded in the 3C Model not only enhanced students' engagement levels but also resulted in improved curriculum learning outcomes. The 3C Model provides teachers with a coherent and age‐appropriate instructional structure. It uses physical computing devices and digital coding platforms to introduce coding concepts, furthering the development of computational thinking skills in primary school students beyond mere procedural and rote learning. Implications: The study holds important implications for practical applications, as it addresses an absence in the literature of an established pedagogy and instructional sequencing model for effectively teaching coding and computational thinking concepts and skills to primary school students. Drawing on established pedagogical and developmental learning theories, the 3C Model provides primary school teachers with an engaging, age‐appropriate instructional method that avoids decontextualised teaching and surface‐based learning. Instead, it encourages collaborative student work and contextualised learning, steering away from isolated and generic approaches. Lay Description: What is currently known about this topic: Teaching coding and computational thinking concepts and skills is complex due to their abstract nature.Teaching resources such as work samples, curriculum connections and tools are available to primary school teachers.There is no consensus on the most effective methods to teach these abstract concepts and skills.Primary school teachers default to applying general teaching strategies due to the lack of an age‐appropriate, specific activity sequencing model to use during coding instruction. What does this paper add: The study fills the existing gap by presenting a newly conceptualised instructional model, which considers the students' developmental stage of learning and pedagogical best practices.The study trialled the 3C Model with primary school students in a classroom setting.The study found that employing the pedagogical approach of the 3C Model increased students' engagement levels and resulted in enhanced curriculum learning outcomes. Implications for practitioners: Without an age‐appropriate instructional sequencing model students may not be grasping the underlying concepts.Simply focusing on the code without emphasising concepts such as decomposition and algorithmic thinking will result in shallow learning.Key considerations in using the 3C Model are ensuring that conceptual development occurs using physical computing devices and language students are familiar with prior to introducing coding language and its symbolic representations.Primary school teachers should consider incorporating physical interactive digital devices, physical movement, staged language development and subsequent coding procedures within the context of an engaging and authentic problem. This approach enables students to effectively grasp and represent coding and computational thinking concepts and skills, surpassing mere procedural and rote learning. [ABSTRACT FROM AUTHOR]

This paper explores the ways in which health care professionals, family carers, and older persons expressed attitudes and opinions on using Paro, a social robot designed to stimulate patients with dementia. Thereafter, we critically evaluate existing prejudicial views toward Paro users to provide recommendations for its future use. Using an exploratory qualitative interview method, we recruited a total of 67 participants in Switzerland. They included 23 care professionals, 17 family carers, and 27 older persons. Data obtained were analyzed thematically. Study findings present general agreement that Paro is an appealing and beneficial social robot, but it is not a tool that everyone feels comfortable with. Because it is perceived as "child play," it would be demeaning for competent adults to play with such things. Consequently, Paro is appropriate only for persons with dementia. These findings brought forth ethical concerns about deception, infantilization, and respecting older persons' dignity. The idea of who is an appropriate Paro user led to our discussions on predicting future Paro users. The meaning of using social robotics in nursing homes can be conditioned by a rigid interpretation of adulthood and playful behavior. To protect future selves when one is living with dementia from prejudices, it may be useful for older persons and their loved ones to plan their future care situations to ensure that they are treated in accordance with their delineated decisions. [ABSTRACT FROM AUTHOR]

Background: Aphasia, a common consequence of stroke, which affects both communication and social functioning, and in turn, quality of life, is on the rise due to increases in stroke prevalence and survival rate. The rehabilitation of post‐stroke aphasia primarily falls within the purview of speech‐language pathology and research supports the effectiveness of such services. However, provision of aphasia rehabilitation services in sub‐Saharan Africa is associated with challenges. Aims: This study aimed to examine rehabilitation services for individuals with post‐stroke aphasia in Ghana by exploring the roles of the stakeholder groups involved in the assessment and treatment of post‐stroke aphasia in Ghana, as well as the challenges they encounter in providing or identifying services. The stakeholder groups included educational institutions, interdisciplinary healthcare professionals, and family caregivers of individuals with post‐stroke aphasia. Methods & Procedures: A qualitative case study approach was used to collect and integrate from multiple sources data such as demographic information, interview responses and program syllabi to develop a holistic image. Fifteen respondents from the stroke and speech therapy units at Komfo Anokye and Korle‐Bu Teaching Hospitals, University of Ghana, and University of Health and Allied Sciences, Ghana were purposively sampled. Interview questions were developed and centred on aphasia education and training, knowledge of speech‐language pathology services, speech‐language pathology service delivery, access to speech‐language pathology services, challenges in both delivery and access to speech‐language pathology services and suggestions for improving speech‐language pathology services. In‐person and virtual interviews were conducted after demographic information was collected. Interviews were analysed thematically, and demographic information and program syllabi were triangulated with the interview data collected. Outcomes & Results: All stakeholder groups identified concerns with current aphasia services in Ghana. Issues raised included the insufficient number of speech‐language pathologists, lack of awareness of speech‐language pathology services for post‐stroke aphasia (among healthcare professionals and the public), absence of aphasia management information and clinical training in educational programming, lack of interest in speech‐language pathology training programs, financial challenges, spiritual and traditional beliefs and geographic barriers (i.e., speech‐language pathology services are currently available in only a few cities). Conclusions & Implications: These findings emphasised the need to improve post‐stroke aphasia rehabilitation in Ghana. The process of data collection itself educated respondents on the importance of post‐stroke aphasia rehabilitation, and by identifying barriers, strategies to improving services, such as designing standardised aphasia assessments for the Ghanaian context, can now be initiated. WHAT THIS PAPER ADDS: What is already known on the subject: To address post‐stroke aphasia, evidence‐based speech‐language pathology services are provided. However, there is a paucity of studies on post‐stroke aphasia services in Ghana, preventing an accurate report of services and practices in the country. What this study adds: This study provides an overview of the existing rehabilitation services for post‐stroke aphasia in Ghana. It highlights challenges facing the existing services and suggested strategies to improve post‐stroke aphasia services. What are the clinical implications of this work?: The study created awareness among healthcare professionals and general public (study participants) about the importance of rehabilitation services for post‐stroke aphasia. Based on the study findings, appropriate stakeholders such as policy makers, researchers, and healthcare professionals can further design assessments and interventions to improve rehabilitation, including speech‐language pathology services, for post‐stroke aphasia in Ghana. [ABSTRACT FROM AUTHOR]

In January 2021, we assessed the implications of temporary regulations in the United Kingdom allowing pubs and restaurants to operate on a takeaway basis without instigating a change of use. Local authorities (LAs) across the North‐East of England were unaware of any data regarding the take‐up of these regulations, partially due to ongoing capacity issues; participants also raised health concerns around takeaway use increasing significantly. One year on, we repeated the study aiming to understand the impact of these regulations on the policy and practice of key professional groups. Specifically, we wanted to understand if LAs were still struggling with staff capacity to address the regulations, whether professionals still had public health trepidations, and if any unexpected changes had occurred across the local food environment because of the pandemic. We conversed with 16 public health professionals, planners and environmental health officers across seven LAs throughout the North‐East of England via focus groups and interviews. Data collated were analysed via an inductive and semantic, reflexive‐thematic approach. Through analysis of the data, three themes were generated and are discussed throughout: popular online delivery services as a mediator to increased takeaway usage; potential long‐term health implications and challenges; continued uncertainty regarding the temporary regulations. This paper highlights important changes to local food environments, which public health professionals should be aware of, so they are better equipped to tackle health inequalities across urban and sub‐urban areas. [ABSTRACT FROM AUTHOR]

Background: Immigrant parents' perspectives on raising adolescents and young adults with intellectual disabilities during the transition to adulthood are the focus of this study. Disabled children demand more care and support as they mature and transition to adulthood. This increased care demand places significant stress on parents' wellbeing and participation in social and economic activities. Methods: Qualitative interviews were undertaken with purposively sampled immigrant parents of adolescents and young adults with intellectual disabilities transitioning into adulthood. The study used inductive thematic analysis to identify common themes across the data set. Findings: The birth of their disabled child marked a new beginning in a family's life, characterised first by shock and later by acceptance. Informants experienced challenges associated with language and information access, reduced service, social isolation, skewed gender roles and worrying about their children's future. Conclusions: The intersection between migration and disability can aggravate the care burden. Knowledge about parents' experiences is crucial for designing rehabilitation programmes, promoting wellbeing and bridging gaps between services recommended by service providers and the actual needs of the family and child. Accessible summary: This paper is about the stories of three immigrant parents raising children with intellectual disabilities in Norway.Moving to a new country and having a disability can increase the risk of vulnerability.The parents in the study faced challenges accessing services and being isolated.Knowing about their experiences is important for making services better.Transition to adulthood is an important milestone in an individual's life. [ABSTRACT FROM AUTHOR]

Objective: Through interviews with older adults and professionals in Chongqing, China, this paper explores the challenges and opportunities faced by smart cities that undertake to better support ageing‐in‐place. Methods: We undertook a qualitative multi‐methods approach, engaging 46 professional stakeholders and 64 older people to examine the role of smart cities in enabling older people to age‐in‐place in Chongqing, China. Results: With the development of smart cities, technology has the potential to facilitate ageing‐in‐place by creating opportunities for heathy and active ageing. This study identified specific priorities in delivering age‐friendly smart cities, including the following: shaping smart environments around the everyday lives of older people, designing inclusive and equitable smart cities and ensuring strong forms of institutional governance, trust and relationship building with older people. Conclusions: The age‐friendly city and communities movement (AFCC) and smart city policy instruments have potential for realising active ageing by supporting mobility, access to services and civic participation. However, there exists a disconnect between smart city policy and practice in delivering tangible well‐being outcomes for older people. Addressing this requires greater cross‐sectoral working, reconciling smart city policy priorities with AFCC domains and creating the institutional and governance framework to enable socially sustainable cities to support ageing‐in‐place. [ABSTRACT FROM AUTHOR]

Background: Health professions education curricula are undergoing reform towards social accountability (SA), defined as an academic institution's obligation to orient its education, service and research to respond to societal needs. However, little is known about how or which educational experiences transform learners and the processes behind such action. For example, those responsible for the development and implementation of undergraduate medical education (UGME) programs can benefit from a deeper understanding of educational approaches that foster the development of competencies related to SA. The purpose of this paper was to learn from the perspectives of the various partners involved in a program's delivery about what curricular aspects related to SA are expressed in a UGME program. Methods: We undertook a qualitative descriptive study at a francophone Canadian university. Through purposive convenience and snowball sampling, we conducted 16 focus groups (virtual) with the following partners: (a) third‐ and fourth‐year medical students, (b) medical teachers, (c) program administrators (e.g., program leadership), (d) community members (e.g., community organisations) and (e) patient partners. We used inductive thematic analysis to interpret the data. Results: The participants' perspectives organised around four key themes including (a) the definition of a future socially accountable physician, (b) socially accountable educational activities and experiences, (c) characteristics of a socially accountable MD program and (d) suggestions for curriculum improvement and implementation. Conclusions: We extend scholarship about curricular activities related to SA from the perspectives of those involved in teaching and learning. We highlight the relevance of experiential learning, engagement with community members and patient partners and collaborative approaches to curriculum development. Our study provides a snapshot of what are the sequential pathways in fostering SA among medical students and therefore addresses a gap between knowledge and practice regarding what contributes to the implementation of educational approaches related to SA. We emphasise the need for educational innovation and research to develop and align assessment methods with teaching and learning related to SA. This study delves into how a medical training fosters socially accountable physicians. Findings underscore the importance of experiential learning, community engagement, and collaborative curriculum development. #MedEd #SocialAccountability [ABSTRACT FROM AUTHOR]

Background: Above cuff vocalisation (ACV) involves the application of an external flow of air via the subglottic port of a tracheostomy. ACV can facilitate vocalisation and may improve swallowing and quality of life for patients with a tracheostomy. A recent systematic review highlighted the limited evidence available for the acceptability, effectiveness, safety or optimal implementation of ACV. Aims: To explore the experience of healthcare professionals (HCPs) using ACV and their perceptions of best practice. Methods and Procedures: Semi‐structured interviews were conducted with a range of HCPs with experience using ACV. Topics included: experiences with ACV, management of ACV, opinions about ACV, impact of COVID‐19, future directions for ACV and impact on length of stay. Interviews were conducted online from December 2020 to March 2022. Data were analysed using reflexive thematic analysis. Outcomes and Results: Twenty‐four HCPs were interviewed from seven countries and five professional groups. Four interconnected themes were developed: (1) moral distress amplifying the need to fix patients; (2) subjectivity and uncertainty leading to variations in practice and purpose; (3) knowledge and experience leading to control and caution; and (4) worth a try or a last resort. Theme four contained three sub‐themes: (a) part of the toolbox; (b) useful but limited tool; and (c) following the patient's lead. The moral distress experienced by HCPs and their essential 'need to fix' patients seems to underpin the varied opinions of ACV. These opinions appear to be formed primarily on the basis of experience, because of the underlying subjectivities and uncertainties. As knowledge and experience with ACV increased, and adverse events were experienced, most HCPs became more cautious in their approach to ACV. Conclusions and Implications: More research is needed to reduce the subjectivities and uncertainties surrounding ACV. The implementation of standardised procedures, processes, and competencies may help to reduce the frequency of adverse events and support a more controlled approach. Widening the focus of the purpose of ACV to include swallowing may help to maximise the potential benefits. WHAT THIS PAPER ADDS: What is already known on the subject: There is limited and low‐quality evidence for above cuff vocalisation (ACV) and clinical application and practice varies substantially. However, the reasons for this variation in practice and healthcare professionals' (HCPs') opinions of ACV were unclear. What this study adds: HCPs' experiences and opinions of ACV vary as a result of the uncertainty and subjectivity surrounding ACV compounded by their personal experiences with it. A need for caution also appears to emerge as HCPs become more familiar and experienced with using ACV. What are the clinical implications of this work?: Implementing standardised procedures, safety processes and competencies may help to compensate for the uncertainty and subjectivity surrounding ACV and may reduce the frequency of adverse events. Widening the focus of purpose of ACV, including swallowing in addition to communication, may increase the number of potential candidates and increase the potential benefits of ACV. Using multidisciplinary team (MDT) simulation training for ACV competency development might help to improve MDT working and ACV implementation. [ABSTRACT FROM AUTHOR]

This paper explores the explanatory models of mental challenges among Black Africans in England. It argues that understanding these models is critical for providing culturally appropriate care to this population. The study employed qualitative methodology, and interpretative phenomenological analysis (IPA). Twelve mental health service users who are living in England and self‐identified as first or second‐generation Black Africans were purposively selected. The data were gathered using face‐to‐face semistructured interviews. Data were manually analysed in accordance with IPA concepts of searching for common, unique and idiosyncratic themes across transcripts. The findings revealed three themes Black Africans associated to their explanatory model of mental health challenges: complexities of migration, African‐centred worldview and negative life experiences. To help alleviate the Eurocentric nature of mental health practice in England, it is hoped that this explanatory model will become an integral part of mental health practice in England and around the world. [ABSTRACT FROM AUTHOR]

Background: Children with medical complexity (CMC) often face significant barriers to accessing care, obtaining appropriate insurance coverage for medical devices, technology, supplies, home nursing and social services. These challenges, when viewed through the lens of social determinants of health, highlight concerns about healthcare inequity. These inequities can impact CMC by limiting access to follow‐up appointments, leading to disproportionate use of emergency department services, restricting support services, reducing the quality of medical products and increasing the likelihood of adverse events. Addressing these concerns requires comprehensive policy changes at both state and federal levels. Achieving successful collaborations between states and federal agencies is particularly challenging and may take months or even years to accomplish. Objectives: Through an exploratory qualitative approach, this study facilitates a nuanced inquiry into the experiences and systemic challenges encountered by medical professionals and primary caregivers managing CMC who require a paediatric tracheostomy. Methods: Qualitative interviews were conducted with 17 health professionals and primary caregivers residing in the United States. A thematic analysis was used to analyse the transcribed interview data. Results: Using exploratory thematic analysis, we identified challenges and opportunities for improvement regarding (a) access to health insurance, (b) procurement of essential medical supplies, (c) logistical constraints and (d) identifying interim solutions. Conclusion: Building on our findings, we discuss how socioecological factors impact health and quality of life of CMC and families. Additionally, we address the growing gap in quality of care through a comprehensive approach that considers patient needs, regulatory frameworks and affordability. Patient or Public Contribution: Medical practitioners and healthcare professionals were actively involved in the development, production and implementation of the research project. These individuals were given the opportunity to review their statements and review the manuscript before publishing. While caregivers did not engage in member checking, each provided their consent before data collection. [ABSTRACT FROM AUTHOR]

Introduction: Culturally and linguistically diverse population groups disproportionately experience higher weight and other non–weight‐related discrimination in healthcare settings outside of their ancestral country. Little is known about the experiences of individuals with Arab heritage. This study aimed to qualitatively explore the intersectional weight‐related healthcare experiences of individuals of Arab heritage with higher weight in Australia. Methods: A general inductive enquiry approach was used. Purposive, convenience and snowball sampling was used to recruit individuals of Arab heritage residing in Australia. Individuals were invited to participate in an online semistructured interview. Interviews were recorded, transcribed and thematically analysed. Results: Fifteen participants took part in the study. Of these participants, 93% were female (n = 14), 80% were aged between 18 and 44 years (n = 12), 73% were university educated (n = 11), 53% were born outside of Australia (n = 8) and all were Muslim (n = 15). Four main themes were identified: (1) appearance‐based judgement, (2) generalised advice and assumptions, (3) cultural responsiveness and (4) healthcare system constraints. Conclusion: Individuals of Arab heritage with higher weight in Australia, namely, females, often perceive their healthcare experiences as dismissive of their cultural and religious needs and driven by causality assumptions around weight. It is crucial that care delivered encompasses cultural humility, is weight‐inclusive and acknowledges systemic constraints. Cultural safety training benchmarks, healthcare management reform and weight‐inclusive healthcare approaches are recommended to assist healthcare providers in delivering effective, holistic and culturally safe care. Patient or Public Contribution: Insights gained from conversations with Arab heritage community members with lived experiences regarding weight‐related healthcare encounters informed the study design and approach. [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]

Aim: This study adopted the qualitative research method, aiming to explore the learning experience of nursing graduate professional curricula in China from the perspective of students and provided a basis for the continuous improvement of nursing graduate training. Design: A qualitative study. Methods: A purposive sampling method was employed to conduct semi‐structured in‐depth interviews with 14 nursing master's students enrolled in professional curricula from September 03, 2021, to December 8, 2022. The Colaizzi seven‐step analysis method was utilized for data analysis, summarization and extraction. Results: Four themes emerged from the study findings: (i) The study of professional curricula is the cornerstone of scientific research work, but it is relatively boring; (ii) The teaching methods and assessment methods of postgraduate education need to be diversified; (iii) The postgraduate education needs to increase the study time of specialized courses and highlight the specialty characteristics; (iv) the study of professional curricula can enhance the comprehensive ability of postgraduate students. Conclusion: The study of professional curricula for post‐graduate nursing students plays an important role in the development of post‐graduate research and can statistically significant improve their comprehensive ability, but there are some problems such as boring courses, single teaching assessment methods and insufficient time. In the future teaching reform, it is necessary to highlight the specialty characteristics of nursing scientific research, optimize curriculum education and improve students' scientific research knowledge and thinking. Patient and Public Contributions: We thank all participants for their valuable input throughout the study. [ABSTRACT FROM AUTHOR]

Breastfeeding is a crucial public health approach that reduces infant morbidity and mortality by providing essential nutrients and antibodies, and breast milk is easily digested. Breastfeeding and donated milk serve as a preventative measure against necrotising enterocolitis. Additionally, they protect against viruses and nosocomial sepsis. When a birthing parent's own milk is unavailable, alternative enteral nutrition for preterm or low‐birth‐weight infants is either donor human milk (DHM) or artificial formula. This study aimed to understand mothers' acceptance of the donor human milk bank (DHMB) and DHM. A qualitative phenomenological study was conducted in Limpopo Province, South Africa. The study used purposive sampling to select 23 mothers in postnatal and neonatal wards. Data collection was via in‐depth interviews using a semistructured interview guide. Manual data analysis using an interpretative phenomenological analysis (IPA) framework was used to coding. Concepts were grouped to generate themes. Three themes and nine subthemes were generated: (1) DHMBs (2) cultural perspective of DHMB, and (3) health considerations of DHM. Participants were unaware of the DHMB. Hesitancy in accepting DHM due to fear of contracting HIV was observed. Cultural beliefs are an influencing factor for use, while donation was driven by altruistic reasons, preventing waste, helping others and having previously benefited from DHM. The study found that mothers are willing to donate human milk. Willingness to donate can be increased by raising awareness about DHMB and addressing culture and safety concerns at antenatal clinics. Key messages: The study emphasises the possible willingness to accept the concept of donating and utilising donor human milk for newborns who do not have access to their mother's own milk. However, safety concerns, bonding and cultural issues should be addressed.Promoting breastfeeding and milk donation in communities requires addressing cultural and health concerns by utilising the service of community health workers.Education about safe breast milk banking before neonatal intensive care unit admission is also an important factor. [ABSTRACT FROM AUTHOR]

We investigated nurses' experiences of hospital‐acquired pressure injury (PI) prevention in acute care services to better understand how PI prevention may be optimised. We used the Theoretical Domains Framework to systematically identify barriers and enablers to evidence‐based preventive practices as required by the International Guideline. This study was one element of a complex capacity building project on PI surveillance and prevention within the acute health service partners of Monash Partners Academic Health Science Centre, an accredited academic health partnership located in Melbourne, Australia. We adopted a qualitative descriptive design. We interviewed 32 nurses that provided care in intensive care units, general wards and COVID wards of four acute care services. Nurses were recruited from four large acute care services (three public, one private) located in Melbourne. Most of them worked with patients who were at high risk of hospital‐acquired PI on a daily basis. Interview transcripts were coded and analysed using thematic analysis guided by the Theoretical Domains Framework. The domains referred to most frequently by all participants included: Knowledge, Skills, Social/Professional Role and Identity, Beliefs about Capabilities, and Environmental Context and Resources. The key barriers discussed by nurses included gaps in nurses' knowledge and skills related to identification and staging of PI, heavy nursing workload and inadequate staffing levels, stigma and self‐blame related to PI identification, and exacerbating impacts of the COVID‐19 pandemic. Main facilitators discussed were training programmes, nursing audits and feedback, and teamwork. Participants suggested improvements including accessible and tailored training, visual reminders, and addressing heavy workloads and emotional barriers nurses face. Investing in tailored training initiatives to improve nurses' knowledge and organisational changes to address low level staffing and heavy workloads are urgently needed to support nurses in delivering optimal care and preventing hospital‐acquired PI. [ABSTRACT FROM AUTHOR]

Introduction: Increased awareness of testicular diseases can lead to early diagnosis. Evidence suggests that men's awareness of testicular diseases is low, with many expressing their willingness to delay help‐seeking for symptoms of concern. The risk of testicular diseases is higher in gender and sexual minority groups. In this study, we discuss the codesign, refinement and launch of 'On the Ball', an inclusive community‐based 'testicular awareness' campaign. Methods: The World Café participatory research methodology was used. Individuals from Lesbian, Gay, Bisexual, Transgender and Queer+ friendly organisations, testicular cancer survivors, policymakers, media/marketing experts and graphic designers were recruited. Participants were handed a brief for 'On the Ball', which was designed based on feedback from a previous World Café workshop. They were assigned to three tables. Participants rotated tables at random for three 20‐min rounds of conversations. Each table had a facilitator who focussed on one element of the campaign brief. Data were collected using audio recorders and in writing and were analysed thematically. Results: Thirteen individuals participated in the workshop. The following themes emerged from the data: (i) campaign identity, (ii) campaign delivery and (iii) campaign impact. Participants recommended enhancements to the campaign logo, slogan, social media posts and poster. They suggested delivering the campaign online via social media and offline using various print and broadcast media. Participants recommended targeting areas with a large number of men such as workplaces. To help measure the impact of the campaign, participants proposed capturing social media analytics and tracking statistics relating to testicular diseases. Recommendations were used to refine the 'On the Ball' campaign and launch it in a university. In total, 411 students engaged with the various elements of the campaign during the soft launch. Conclusions: 'On the Ball' campaign visuals ought to be inclusive. Online and offline campaign delivery is warranted to reach out to a wider cohort. Campaign impact can be captured using social media analytics as well as measuring clinical outcomes relating to testicular diseases. Future research is needed to implement the campaign online and offline, explore its impact and evaluate its feasibility, acceptability, cost and effect on promoting testicular awareness. Patient or Public Contribution: The 'On the Ball' campaign was codesigned and refined with members of Lesbian, Gay, Bisexual, Transgender and Queer+ friendly organisations, testicular cancer survivors, health policymakers, media and marketing experts and graphic designers using the World Café participatory research methodology. [ABSTRACT FROM AUTHOR]

Background: Supported self‐management can improve clinical and psychosocial outcomes in people with cancer; the considerations required to implement self‐management support (SMS) for people living with a lower‐grade glioma (LGG)—who often have complex support needs—are not known. We aimed to identify and understand these implementation considerations through the lens of normalisation process theory (NPT), from the perspectives of healthcare professionals (HCP) and people with LGG. Methods: We conducted semistructured interviews with HCPs who support adults with brain tumours (n = 25; 12 different healthcare professions), and people with LGG who had completed primary treatment (n = 28; male n = 16, mean age 54.6 years, mean time since diagnosis 8.7 years), from across the United Kingdom. Interviews were transcribed and inductive open coding conducted, before deductively mapping to constructs of NPT. We first mapped HCP data, then integrated data from people with LGG to explore alignment in experiences and perspectives. Results: We generated supporting evidence for all four NPT constructs and related subconstructs, namely: 'Coherence', 'Cognitive participation', 'Collective action' and 'Reflexive monitoring'. Data from HCPs and people with LGG clearly demonstrated that effective SMS constitutes a collective activity. Key implementation considerations included: ensuring awareness of, and access to, support; building strong HCP‐support recipient relationships; and careful inclusion of close family and friends. We identified pertinent challenges, such as identifying support needs (influenced by the extent to which those with LGG engage in help‐seeking), resistance to support (e.g., technology literacy), training for HCPs and HCP cooperation. Conclusions: This study demonstrates the collective nature of, and provides insight into the individual roles within, supported self‐management. We outline considerations to operationalise, sustain and appraise the implementation of SMS for people with LGG. Patient or Public Contribution: People with brain tumours, and informal caregivers, were involved in the development of information materials and topic guides to ensure accessibility and pertinence. They also had opportunities to comment on interview findings. [ABSTRACT FROM AUTHOR]

Introduction: Despite significant advances in the management of lung cancer, patients continue to experience a high burden of unmet need impacting quality of life and outcomes of care. Achieving value‐based health care, where investment is targeted to services that deliver optimal experience and outcomes of care relative to the cost of delivering that care, requires attention to what people value most in meeting their needs. To date there has been little attention to what matters most to patients with lung cancer (i.e., what they value) as a component of achieving value‐based cancer care. This qualitative study was undertaken to investigate components of care valued by people with lung cancer in Australia. Methods: This qualitative study used semistructured interviews with 23 people with lung cancer. Participants were recruited using a purposive sampling strategy from two metropolitan tertiary public health services. Data collected included demographic characteristics and patient perspectives regarding their priority concerns and components of care identified as most valuable in meeting their needs. Demographic characteristics of participants were analysed descriptively, and qualitative data were analysed thematically using Interpretive Description. Results: Data analysis generated three key themes: valued components of care; benefits of receiving valued care components and consequences of missed opportunities for care. The components of care valued by patients reflect the core dimensions of cancer supportive care, with particular emphasis on ongoing opportunities for consultation (screening for unmet needs) and provision of person‐centred information. The facilitation of trust between patients and their treating team, as a consequence of having these valued components evident in their care, was identified as a key characteristic of value‐based care. Conclusions: This study has identified valued components of care described by people with lung cancer. Importantly, the care components identified have been proven to improve access to and coordination of care, and demonstrate the importance of integrating supportive care into care provision to achieve value‐based cancer care. Patient or Public Contribution: This study was informed by perspectives of lung cancer patients who participated in semistructured interviews. We acknowledge that this contribution does not meet the criteria for patient and public involvement in research as defined by Health Expectations, but this study forms part of a larger program of cancer supportive care work being undertaken by this team, where comprehensive consumer engagement and co‐design approaches are embedded in our work. [ABSTRACT FROM AUTHOR]

Aim: To understand the real experience of family members of patients in neurosurgical intensive care unit (NICU) during intra‐hospital transport (IHT), explore their inner needs and provide effective intervention measures for the construction of standardized IHT plan. Design: A descriptive qualitative study. Methods: For the purposes of this study, 10 family members of IHT patients were included using a purposive sampling method. Semi‐structured in‐depth interviews were used to collect the data, Nvivo 11 software was used to organize the data, and Colaizzi's 7‐step descriptive phenomenology method was used to analyse the data. Results: A total of three themes and nine subthemes were extracted, namely: Experience of emotional changes at different stages (uncertainty before transfer, complex internal activity during transit, ambivalence after transfer); Perception of problems in IHT (poor doctor–patient communication, weak awareness of risk assessment, deficiencies in the transfer procedure); Consciousness of the real needs (emotional respect and closeness, stay informed of the progression of the disease, greater social support). Conclusion: Family members of patients in the NICU have complex internal experiences and multiple support needs during IHT, reflecting the need for further standardization of the transport process. In the future, we should improve the mode of safe IHT involving doctors, nurses and family members of patients, ensure the safety of patient transport, meet the social support needs of family members and improve the experience of IHT and the medical satisfaction of family members. [ABSTRACT FROM AUTHOR]

Objective: Patients with rheumatoid arthritis (RA) may need to access rheumatology care between scheduled visits. WelTel is a virtual care platform that supports secure two‐way text‐messaging between patients and their health care team. The objective of the present study was to explore perspectives and experiences of health care providers (HCPs) and patients related to the use of WelTel as an adjunct to routine care. Methods: Seventy patients with RA were enrolled in a six‐month WelTel pilot project launched in September 2021. Patients received monthly "How are you?" text message check‐ins and could message their health care team during clinic hours to request health advice. The current project is a qualitative study of the WelTel pilot. A subgroup of pilot participants was purposively sampled and invited to participate in interviews. A thematic analysis of transcripts was conducted using a deductive approach leveraging quality of care domains. Results: Thirteen patients (62% female, mean age 62 years, 10 White) completed interviews. Patients' views suggested that text messaging with the rheumatology team supported high‐quality care across multiple quality domains including patient‐centeredness, timeliness, efficiency, safety, effectiveness, equity, and appropriateness. Seven HCPs (57.1% female, one pharmacist and six rheumatologists) completed interviews. HCPs' perspectives varied based on their experience with the WelTel platform. Additional themes reported by HCPs included perceived increased workload and burnout. Conclusions: Patients with RA perceived text‐based messaging as supporting high‐quality care. The impact of increased communications on HCP burnout and workload requires consideration, and future studies should evaluate the effect of texting on patient outcomes. [ABSTRACT FROM AUTHOR]

Aim: To offer a practical way in which the status of healthcare assistants (HCAs) can be increased by drawing on their experience, knowledge and skillset, whilst mentoring medical students during an HCA project. Design: Qualitative, reflexive thematic analysis. Methods: One‐to‐one semi‐structured interviews were conducted between April and June 2019, with 13 participants. Participants included five healthcare assistants; three practice development nurses, two of whom were former HCAs; one registered general nurse and four clinical educators. Results: Two themes were identified: HCAs as silent, invisible caregivers (theme 1) and the formation of an HCA identity through mentoring (theme 2). HCAs are often silent performers of complex patient care with limited opportunity to engage in the interprofessional team dialogue. Social perceptions of HCAs describe them as a marginalised, poorly understood, 'unqualified' group with 'lowly status'. Mentoring medical students allows HCAs to draw on their experience, knowledge and skillset by actively contributing to the learning and development of future doctors. Conclusion: The mentoring of medical students gave HCAs an active voice within the interprofessional team, instilling their confidence and self‐worth. Mentoring allowed HCAs to move from a homogenous, group‐based social identity to a role‐based one that enabled HCAs to reveal the true extent of their work whilst negotiating their place and identity within the interprofessional team. Impact: Leaders in healthcare will see that a re‐evaluation of HCAs as performers of basic, hands‐on patient care is needed to breakdown ingrained beliefs, eliminating a 'us and them' mentality. Involving HCAs in the mentoring of medical students will impact on the personal development of both HCAs and medical students in the cultivation of a future, person‐centred, inclusive and collaborative workforce. Reporting Method: COREQ guidelines to enhance methodological rigour were strictly adhered to. Patient and Public Involvement: There is no patient or public involvement. [ABSTRACT FROM AUTHOR]

Introduction: In the United Kingdom, fractures of the cervical dens process in older and/or frail patients are usually managed nonsurgically in a hard collar. However, hard collars can lead to complications and this management approach is now being questioned, with growing interest in maximising patients' short‐term quality‐of‐life. It is vital that patients' perspectives are considered; yet, there is a dearth of literature examining the aspect. To help inform wider decision‐making about use of collar/no collar management of dens fractures in older/frail people, we explored older/frail people's experience of the two management approaches and how they affected their perceived quality‐of‐life. Methods: We interviewed older and/or frail adults with a recent dens fracture (aged ≥65 years or with a clinical frailty score of ≥5) or their caregiver. Participants were recruited from both arms of a clinical trial comparing management using a hard collar for 12 weeks (SM) with early removal of the collar (ERC) and were interviewed following randomisation and again, 12–16 weeks later. Data were analysed using a framework approach. Results: Both participant groups (SM/ERC) reported substantial, negative quality‐of‐life (QoL) experiences, with the fall itself and lack of access to care services and information being frequent major contributory factors. Many negative experiences cut across both participant groups, including pain, fatigue, diminished autonomy and reduced involvement in personally meaningful activities. However, we identified some subtle, yet discernible, ways in which using SM/ERC reinforced or alleviated (negative) QoL impacts, with the perceived benefits/burdens to using SM/ERC varying between different individuals. Conclusion: Study findings can be used to support informed decision‐making about SM/ERC management of dens fractures in older/frail patients. Patient or Public Contribution: Public and patient involvement contributors were involved in the study design, development of interview topic guides and interpretation of study findings. [ABSTRACT FROM AUTHOR]

Introduction: Healthcare professionals have an important role in advocating for the adoption of a brain‐healthy lifestyle for optimal multiple sclerosis (MS) care. Nonetheless, studies to date have mainly focussed on the consumer perspective. Herein, we aimed to explore the current practices of how healthcare professionals support protective, lifestyle‐related behaviour changes to optimise brain health among people living with MS (plwMS), and their perspectives of professional roles. Methods: Australian healthcare professionals were recruited via study advertisements, purposive and snowball sampling, to participate in an online, semi‐structured and audio‐recorded interview. Clinicians were eligible if they had a minimum of a tertiary Bachelor's degree and 12‐months experience working with plwMS, access to the Internet and sufficient time to participant. An inductive, data‐driven form of reflexive thematic analysis was undertaken before thematic categorisation of the quotes from transcripts. Data analysis was guided by the methods of Braun and Clark and the study's underpinnings drew on the constructs of the Social Cognitive Theory (SCT). Results: Six physicians, 10 MS nurses, 18 allied health professionals, one exercise therapist and one alternative therapist were interviewed. Three primary themes encompassing the perceived role of healthcare professionals in supporting a brain‐healthy lifestyle were identified: (1) the empowering role, (2) collaborative role and (3) communicative role. External factors/forces including time constraints, professional expertise, training and skill set, power dynamics, consumer readiness, health literacy, self‐efficacy and motivation are at play, and affect how/when healthcare professionals may support behaviour change to optimise lifelong brain health for plwMS. Conclusion: Healthcare professionals recognise their critical role in encouraging and supporting the adoption of a brain‐healthy lifestyle to optimise lifelong brain health for plwMS. However, discord is evident when they underestimate the complexity of translating knowledge of lifestyle‐related behaviour change(s) into action. Greater awareness must be made in recognising and addressing the bidirectionality of external factors such as those in the SCT, that may influence how behaviour change occurs. Public Contribution: Healthcare professionals volunteered to be interviewed as part of the data collection phase of this study. [ABSTRACT FROM AUTHOR]

Context: Best practice guidelines for the recovery and return to work (RTW) of people with mental disorders recommend access to the services of an interdisciplinary team combining pharmacological, psychological and work rehabilitation interventions. In the Canadian context, primary healthcare services are responsible for providing these services for people with common mental disorders, such as depressive or anxiety disorders. However, not everyone has easy access to these recommended primary healthcare services, and previous studies suggest that multiple personal, practice‐related and organizational factors can influence the patient's journey. Moreover, previous studies documented that family physicians often work in silos and lack the knowledge and time needed to effectively manage by themselves patients' occupational health. Thus, the care and service trajectories of these patients are often suboptimal and can have important consequences on the person's recovery and RTW. Objective and Population Studied: Our study aimed to gain a better understanding of the patient journeys and the factors influencing their access to and experience with primary healthcare services while they were on sick leave due to a common mental disorder. Methods: A descriptive qualitative research design was used to understand and describe these factors. Conventional content analysis was used to analyze the verbatim. Results: Five themes describe the main factors that influenced the patient's journey of the 14 participants of this study: (1) the fragmented interventions provided by family physicians; (2) patients' autonomy in managing their own care; (3) the attitude and case management provided by the insurer, (4) the employer's openness and understanding and (5) the match between the person's needs and their access to psychosocial and rehabilitation services. Conclusions: Our findings highlight important gaps in the collaborative practices surrounding the management of mental health‐related sick leave, the coordination of primary healthcare services and the access to work rehabilitation services. Occupational therapists and other professionals can support family physicians in managing sick leaves, strengthen interprofessional and intersectoral collaboration and ensure that patients receive needed services in a timelier manner no matter their insurance coverage or financial needs. Patients of Public Contribution: This study aimed at looking into the perspective of people who have lived or are currently experiencing a sick leave related to a mental health disorder to highlight the factors which they feel hindered their recovery and RTW. Additionally, two patient partners were involved in this study and are now engaged in the dissemination of the research results and the pursuit of our team research programme to improve services delivered to this population. [ABSTRACT FROM AUTHOR]

Objectives: Sudden smell loss is one of the early symptoms of COVID‐19. Although it is stated that the loss of smell and taste following COVID‐19 improves within a few weeks, there are also cases that do not improve for a long time. The aim of this study is to reveal long‐term smell loss experiences after COVID‐19. Methods: A qualitative approach was adopted. We conducted semistructured interviews with 11 participants who had smell loss for at least 3 months. Interviews were recorded, transcribed and evaluated using a thematic analysis for qualitative data. Results: Nutrition and appetite, personal hygiene, threats to safety and emotional changes were the main themes created by the authors and were the areas where participant expressions focused. The participants used oral/nasal corticosteroid therapy for smell loss and received short‐term olfactory training, but could not find a solution. Conclusions: Long‐term smell loss problems, which were neglected during the pandemic period, should be carefully evaluated due to their negative effects. Understanding and focusing on the negative effects of loss of smell may contribute to the solution of long‐term smell loss problems. Patient and Public Contribution: Eleven participants who experienced long‐term loss of smell following COVID‐19 contributed to the study. They enriched the study by describing the effects of their experiences. There was no other participation or contribution from the public to the research. [ABSTRACT FROM AUTHOR]

Background: Long Covid is an emerging long‐term condition, with those affected raising concerns about lack of healthcare support. Objective: We conducted a qualitative study to identify facilitators and barriers to healthcare access for people with Long Covid, aiming to enhance our understanding of the specific nature of these barriers and how patient experiences may vary. Setting and Participants: In the context of the Symptoms, Trajectory, Inequalities and Management: Understanding Long‐COVID to Address and Transform Existing Integrated Care Pathways (STIMULATE‐ICP) Delphi study, a nationally distributed online survey was conducted. Eight patients and eight healthcare practitioners (HCP) were interviewed via telephone or video call. Framework analysis, sensitised by the candidacy theory, was used to identify barriers and facilitators over four levels of access to care. Results: Three themes were identified: (i) patients' efforts to navigate emerging pathways for Long Covid, (ii) the patient–HCP interaction and (iii) service resources and structural constraints. Barriers to specialist care included long waiting times, communication gaps across services and a lack of continuity in care. Facilitators included collaborative, patient‐centred approaches, patients' active role in their healthcare and blended approaches for appointments. The perspectives of both patients and HCPs largely aligned. Discussion: The candidacy framework was valuable in understanding the experiences of people with Long Covid seeking access to healthcare. Individuals perceived themselves as eligible for care, but they often encountered obstacles in obtaining the expected level of care or, in some cases, did not receive it at all. Our findings are discussed in the context of the candidacy model through multiple processes of identification, negotiation, permeability and appearances at health services. These themes seem to be especially important for the emerging new pathway model and are relevant to both primary and secondary care. Conclusions: This study highlights that despite these interviews being conducted two years after the start of the COVID‐19 pandemic, people with Long Covid still struggle to access healthcare, emphasising the ongoing need to provide equitable timely healthcare access for people with Long Covid. Patient or Public Contribution: People with Long Covid advised on all stages of this research. [ABSTRACT FROM AUTHOR]

Background: A high incidence of children with congenital heart disease (CHD) was found in Saudi Arabia (SA). International literature reports that children with CHD exhibit behavioural and emotional issues due to experiencing hospitalisation and clinical treatments combined with a dearth of qualitative understanding of the experiences of younger children with CHD. Therefore, the aim was to explore the behaviour and emotions of 4–10‐year‐olds with CHD in SA through children's accounts of their own experiences and parental proxy reports of children's behaviour and emotions. Methods: Charmaz's constructivist grounded theory (GT) approach was used. Twenty single semi‐structured interviews of 10 child/parent dyads were undertaken at a hospital clinic in SA. Children's interviews were combined with an arts‐based approach using drawings, pictures and faces of emotions (emojis). Constant comparison analysis was undertaken. Consolidated Criteria for Reporting Qualitative Research guidelines was followed in reporting this study. Findings: A substantive GT: children's behavioural and emotional reactions towards stressors related to living with CHD was developed and provides new insights into children's and parents' perceptions of the children's behavioural and emotional reactions to living with CHD in SA. The theory proposes that children's reactions to living with CHD relate to medical treatment stressors, sociocultural stressors and physical change stressors. Several further factors influenced children's responses to these stressors. Conclusion: Children and parents in SA contributed to a new understanding of the relationship between CHD and children's behavioural and emotional reactions. In addition, findings support the need for early assessment of behaviour and emotions among children with CHD and the application of preventative and supportive measures for the children and their families in SA. Patient or Public Contribution: Before the research commenced, the developmental appropriateness of the proposed arts‐based data collection tools was tested with three healthy children aged 6–9 years old; the tools were then revised accordingly before the interviews were undertaken. [ABSTRACT FROM AUTHOR]

Aim: To explore nursing students' moral distress (MD) experiences in clinical settings. Design: An interpretative phenomenological analysis (IPA) design was employed. Methods: Purposive sampling was used. In‐depth semi‐structured face‐to‐face interviews were conducted from December 2020 to June 2021 with nursing students who were taking the internship course in clinical settings. Data analysis was conducted following Dickman et al.'s (1989) method. Results: Ten nursing students participated in this study. Three main themes were identified, including (1) negative learning environments, (2) internal disgust and (3) threats to professional identity. Conclusion: Findings showed that value conflict, lack of knowledge of ethical standards and its application, and unprofessional approaches result in negative environmental learning perceptions from the nursing students. Therefore, due to being unable to change the situation, they start to feel guilt and shame and, as a result, decide to escape the problem instead of managing it. These feelings lead to internal disgust. This issue indicates the importance of improving the knowledge and perception of these situations. Thus, nursing students must be prepared for the real world, where their ideals are constantly challenged. MDs were experienced as threats to dignity, inequality, distrust, and change of mentality towards nursing, characterised as threats to professional identity. It is suggested to inquire about the process of nursing students' resiliency in morally disturbing situations to deduce the suitable approach for clinical education. [ABSTRACT FROM AUTHOR]

Aim: To describe the crisis management competencies needed in a hospital setting during the COVID‐19 pandemic from the perspective of nurse leaders. Background: The COVID‐19 pandemic generated many challenges for nurse leaders in hospitals, and management competencies are highlighted. However, there is little evidence available about nurse leaders' perceptions of the crisis management competencies needed in such situations. Methods: A qualitative, descriptive, semi‐structured interview study of nurse leaders (n = 20) was conducted between June and October 2021 in one Finnish central hospital. The data were analysed using inductive content analysis. Results: The analysis yielded five main categories of crisis management competencies needed in a hospital setting during the pandemic: interactive communication competence, psychological resource management competence, systematic and proactive organising competence, active networking abilities and practices and change management approach in crisis management. Conclusions: Nurse leaders need new and different crisis management competencies in hospital organisations. The COVID‐19 pandemic changed the working culture of nurse leaders, as they faced challenges that needed knowledge and skills beyond their previous management competence. Implications for nursing management: Additional training for nurse leaders in crisis management is needed. This training should reflect the competencies identified as necessary in crisis situations so that nurse leaders will be able to manage crisis situations effectively in future. Reporting method: The Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist was used in reporting the findings. Patient or public contribution: No patient or public contribution. [ABSTRACT FROM AUTHOR]

Aim: The aim of this study was to understand the factors that contribute to the development of the nursing associate professional identity. Design: A 3‐year longitudinal qualitative study of trainee nursing associates. Methods: Trainee nursing associates in England were interviewed remotely annually in February 2020, March 2021 and March 2022. They also provided diary entries. Data were anonymised, transcribed and analysed thematically. Results: Nursing associate professional identity was developed through: increased knowledge, skills and responsibility; and self‐perceptions of identity alongside responses to the role by colleagues. Tensions arose when the scope of practice expected by organisations differed from that expected by the nursing associates. Frustrations occurred when nursing associates were perceived as substitutes for Registered Nurses in the context of nursing workforce shortages. Conclusion: Nursing associates in this study clearly valued their new knowledge, skills and responsibility, enabling them to provide enhanced patient care. Increased clarity of role boundaries is necessary in enhancing the professional identity of nursing associates and reducing inter‐professional tensions arising from role ambiguity within health and social care organisations. Implications for the Profession: National guidance and employers should provide clarity on the boundaries of the nursing associate role which will strengthen their professional identity and mitigate role ambiguity within health and social care organisations. Reporting Method: The Consolidated Criteria for Reporting Qualitative Research has been used to guide reporting. Patient of Public Contribution: A patient and public involvement group was consulted during the initial study design stage. Impact: This study aimed to understand the factors which contribute to the development of a nursing associate professional identity.Nursing associate professional identity is developed through increased knowledge, skills and responsibility, and the perceptions of identity by participants themselves and their colleagues.The findings should inform the implementation of initiatives to clarify nursing associate role boundaries and the development of similar roles internationally. [ABSTRACT FROM AUTHOR]

Aim: This study aims to investigate how Lebanese nursing students perceive the challenges of implementing person‐centered care in clinical settings. Design: A qualitative descriptive design was adopted for this study. Methods: At one of Lebanon's top universities, a qualitative descriptive study design was used with 18 nursing students from various academic levels. Content analysis was used to generate the results after three focus group discussions. The Consolidated Criteria for Reporting Qualitative Research were used to report this study. Results: The content analysis gave rise to four main themes, namely, "overload", "challenges with education", "unawareness", "establishing connection", and "lack of initiatives related to policy". The results showed a number of obstacles that Lebanese nursing students believed were in the path of providing person‐centered care. These obstacles included organisational issues like time restraints and an intense workload, as well as interaction difficulties with patients and healthcare teams, and educational issues like insufficient instruction in person‐centered care concepts during nursing programs. [ABSTRACT FROM AUTHOR]

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

Background and Context: Involving people with lived experience of health conditions and the public (consumers) in health research is supported by policy, practice and research funding schemes. However, consumer involvement programmes in discovery‐based preclinical research settings are uncommon. Few formal evaluations of these programmes are reported in the literature. Objective: This study aimed to evaluate an established patient and public involvement programme operating in a major Australian Discovery‐Based Medical Research Institute (DBMRI) to inform programme development and the wider field. Design and Participants: A multimethods programme evaluation incorporating demographic, descriptive and qualitative data obtained through consumer/researcher co‐developed online surveys and semistructured virtual interviews. Programme participants (n = 111) were invited to complete an online survey seeking feedback on their experience of involvement, programme processes and perceived impacts. A purposive sample of 25 participants was interviewed. Descriptive data were analysed using explanatory statistics and qualitative data from surveys and interviews were thematically analysed. Results: This consumer involvement programme was found to be useful and meaningful for most participants, with specific examples of perceived added value. Consumers most commonly engaged with researchers to inform research development, prepare funding applications or strengthen lay communication of science. Genuine consumer–researcher interactions, relationship development and mutual respect were key elements in a positive experience for participants. Opportunities to 'give back', to learn and to ground research in lived experience were identified programme strengths and benefits. Developing researcher training in how to work with consumers, increasing the diversity of the consumer group membership and expanding the range of consumer activities were identified opportunities for improvement. Organisational support and adequate programme resourcing were identified as key enablers. Conclusion: Discovery‐based preclinical research is often viewed as being distant from clinical application; therefore, consumer involvement may be considered less relevant. However this study identified value in bringing a strong consumer voice to the discovery‐based research process through a coordinated, organisation‐wide approach with the potential for application in similar preclinical research settings. Patient or Public Contribution: Four consumer partners from the DBMRI Consumer Advisory Panel were actively engaged in developing this programme evaluation. Specifically, these consumer partners co‐developed and pilot‐tested surveys and interview guides, reviewed and commented on project data analysis and reporting and also contributed as co‐authors by editing the manuscript. [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]

Background: Food insecurity is a public health concern that has profound impact on physical and mental health, and on social well‐being. Pregnancy is a period in which food insecurity is likely to be particularly deleterious, due to the serious impact on both mother and child. Food insecurity is not routinely screened in antenatal healthcare settings, and the preferences of pregnant women regarding food insecurity screening and support are poorly understood. This study aimed to determine the views and preferences of food‐insecure pregnant women regarding food insecurity screening and support within antenatal healthcare. Methods: This qualitative descriptive study used face‐to‐face semi‐structured interviews, conducted in February and March 2023, to gain the views of purposively sampled food‐insecure, pregnant women in Melbourne, Australia. Food insecurity was evidenced by an affirmative response to at least one of three assessment items in a screening questionnaire. Qualitative content analysis was conducted to summarise the views and preferences of women. Results: Nineteen food‐insecure pregnant women were interviewed. Three themes were identified: (1) acceptability of being screened for food insecurity, (2) concerns about the consequences of disclosure and (3) preferences regarding food insecurity screening and supportive strategies that could be offered within an antenatal healthcare setting. Conclusion: Women were accepting of food insecurity screening being conducted within routine healthcare. Women identified potential benefits of routine screening, such as feeling supported by their clinician to have a healthy pregnancy and less pressure to voluntarily ask for food assistance. Women gave suggestions for the implementation of food insecurity screening to optimise their healthcare experience, maintain their dignity and feel able to disclose within a safe and caring environment. These results indicate that food insecurity screening in the antenatal setting is likely to have support from pregnant women and is urgently needed in the interest of promoting optimal nutrition for women and children. Patient Contribution: Pregnant women with lived experience of food insecurity were purposively sampled to obtain their insights regarding screening and support within a pregnancy healthcare setting. Member‐checking occurred following data collection, whereby all participants were offered the opportunity to review their interview transcript to ensure trustworthiness of the data. [ABSTRACT FROM AUTHOR]

Introduction: Creating safer care is a high priority across healthcare systems. Despite this, most systems tend to focus on mitigating past harm, not creating proactive solutions. Managers and staff identify safety threats often with little input from patients and their caregivers during their health encounters. Methods: This is a qualitative descriptive study utilizing focus groups and one‐to‐one interviews with patients and caregivers who were currently using (or had previously used) services in health systems across Canada. Data were analysed via inductive thematic analysis to understand existing and desired strategies to promote safer and better quality care from the perspectives of patients and caregivers. Findings: In our analysis, we identified three key themes (safety strategies) from patients' and caregivers' perspectives and experiences: Using Tools and Approaches for Engaging Patients and Caregivers in their Care; Having Accountability Processes and Mechanisms for Safe Care; and Enabling Patients and Caregivers Access to Information. Conclusions: Safety is more than the absence of harm. Our findings outline a number of suggestions from patients and caregivers on how to make care safer, ranging from being valued on teams, participating as members of quality improvement tables, having access to health information, having access to an advocate to help make sense of information and having processes in place for disclosure and closure. Future work can further refine, implement and evaluate these strategies in practice. Patient or Public Contributions: An advisory group guided the research and was co‐chaired by a patient partner. Members of the advisory group spanned patient and caregiver organizations and health sectors across Canada and included three patient partners and leaders who work closely with patients and caregivers in their day‐to‐day work. In the research itself, we engaged 28 patients and caregivers from across Canada to learn about their safety experiences and learn what safer care looks like from their perspectives. [ABSTRACT FROM AUTHOR]

Background: Persistent somatic symptoms (PSS) frequently remain under‐treated in health care settings. Evidence‐based services that lead affected individuals to early guideline‐based care are currently missing. This study aimed to identify the needs of those affected concerning an internet‐based guide. The second aim was to evaluate public and patient involvement (PPI). Methods: Participants experiencing PSS for at least 6 months were recruited via hospitals, psychotherapeutic practices and self‐help organizations. Qualitative data were gathered via ideation discussions and prioritization tasks. Thematic analysis was conducted to gain insight on the needs of people with lived experiences. PPI was quantitatively evaluated with the Public and Patient Engagement Evaluation Tool. Results: A total of 12 individuals participated (eight females, ages 22–66 years, duration of symptoms 1–43 years). Participants wanted to feel more supported, validated, in control and engaged with managing their health. Content‐related preferences included education, self‐help, social support and contact addresses. The majority of participants (>90%) experienced their involvement as worthwhile. Conclusions: To the best of our knowledge, this is one of the first studies describing PPI in intervention development for PSS. The involvement was perceived as a valuable contribution to the development process. Patient or Public Contribution: Adults with lived experiences were involved at the level of collaboration through the establishment of a participatory research team (PRT) and at the level of consultation through a workshop series, including one of the coauthors. They were involved in developing and validating intervention material and checking data interpretation. [ABSTRACT FROM AUTHOR]

Introduction: Advancements in evaluating the impact of participatory health research (PHR) have been made through comprehensive models like the community‐based participatory research (CBPR) conceptual model, which provides a useful framework for exploring how context and partnership processes can influence health research design and interventions. However, challenges in operationalising aspects of the model limit our understanding and evaluation of the PHR process. Trust is frequently identified as an important component of the CBPR model, which supports the development of key partnership outcomes, such as partnership synergy. However, trust continues to be limited to a binary view (as present or absent), which is problematic given its inherently dynamic and temporal nature. Study Aim: The aim of this qualitative study is to understand the evolution of trust in the national public and patient involvement (PPI) network in Ireland. Setting and Participants: Participants from the PPI network (n = 15/21) completed a semistructured interview discussing the evolution of trust by reviewing four social network maps derived from a previous longitudinal study. Analysis: Following Braun and Clarke, we used reflexive thematic analysis, to iteratively develop, analyse and interpret our mediated reflection of the data. Results: Participants described the evolution of trust as a function of three contextual factors: (1) the set‐up and organisation of the network, (2) how people work together and (3) reflection on the process and outcomes. Their descriptions across these themes seemed to vary depending on partnership type with National Partners and Site Leads having more opportunities to demonstrate trust (e.g., via leadership roles or more resources), compared to Local. Thus, visibility and the opportunity to be visible, depending on the set‐up and organisation of the network and how people work together, seemingly play an important role in the evolution of trust over time. Based on these findings, we provide important questions for reflection across themes that could be considered for future PHR partnerships. Discussion: Given that the opportunity and visibility to build and maintain trust over time may not be equally available to all partners, it is important to find ways to invest in and commit to equitable relationships as the key to the success (i.e., longevity) of partnerships. We reflect on/offer important implications for those engaging in PHR partnerships and those who fund such research. Patient or Public Contribution: A Research Advisory Group comprising four research partners (representing academic, service and community organisations) from the PPI Ignite Network provided input and approval for the research objectives of this study as well as previously published work informing this study. Informal consultation occurred with members of this group to discuss findings from this study, assisting with the way findings are presented and described, to be accessible for diverse audiences. Two Research Advisory Group members were involved in the interpretation of the results, and one is a co‐author of this manuscript (Zoe Hughes). [ABSTRACT FROM AUTHOR]

Introduction: Parents of persons with profound intellectual and multiple disabilities (PIMD) play a major and often lifelong role in the care and support of their child. A better understanding of parents' perspectives regarding their experiences of parenting their child with PIMD is essential to support them more effectively. Although this topic has been explored extensively in Anglo‐Saxon and Northern European countries, little is known about the experience of these parents in a highly institutionalized context such as that in France. Objective: We explored parents' experiences of the activities they performed to care for their child with PIMD (namely, the 'parenting work') in the French context. Method: Qualitative semistructured interviews were conducted by telephone with 34 parents of persons with PIMD aged 8–35. The resulting data were analyzed using thematic analysis. Results: The analysis highlighted the diversity of activities performed by parents as well as the influence of context on the forms of this parenting work. Five themes were developed: (1) navigating the challenges of obtaining medical recognition; (2) negotiating a concealed domain and becoming an expert; (3) unfolding medical and medicosocial care management; (4) navigating the challenges of daily living and (5) shaping one's child's possibilities. Conclusion: This study offers a better understanding of the challenges, levers and expectations of parents of children with PIMD in France. Contextual factors such as the lack of knowledge of PIMD among health professionals, access to knowledge and know‐how associated with care management, the administrative complexity of access to care and equipment, institutional issues (e.g., professional turnover) and societal ableism (e.g., access to infrastructures, interpersonal discrimination) shape the work parents perform to support their child's needs. It is necessary to consider contextual aspects to better support these parents and their children. Suggestions for applications are provided in the discussion. Patient or Public Contribution: One of the researchers, a parent of a child with PIMD, supported the research design and provided feedback on the study's procedures and 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]