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Background: Many speech sound disorder (SSD) interventions with a long‐term evidence base are 'new' to clinical practice, and the role of services in supporting or constraining capacity for practice change is underexplored. Innovations from implementation science may offer solutions to this research–practice gap but have not previously been applied to SSD. Aim: To explain variation in speech and language therapy service capacity to implement new SSD interventions. Methods & Procedures: We conducted an intensive, case‐based qualitative study with 42 speech and language therapists (SLTs) in three NHS services (n = 39) and private practice (n = 3) in Scotland. We explored therapists' diverse experiences of SSD practice change through individual interviews (n = 28) or self‐generated paired (n = 2) or focus groups (n = 3). A theoretical framework (Normalization Process Theory) helped us understand how the service context contributed to the way therapists engaged with different practice changes. Outcomes & Results: We identified six types ('cases') of practice change, two of which involved the new SSD interventions. We focus on these two cases ('Transforming' and 'Venturing') and use Normalization Process Theory's Cognitive participation construct to explain implementation (or not) of new SSD interventions in routine practice. Therapists were becoming aware of the new interventions through knowledge brokers, professional networks and an intervention database. In the Transforming case, new SSD interventions for selected children were becoming part of local routine practice. Transforming was the result of a favourable service structure, a sustained and supported 'push' that made implementation of the new interventions a service priority, and considerable collective time to think about doing it. 'Venturing' happened where the new SSD interventions were not a service priority. It involved individual or informal groups of therapists trying out or using one or more of the new interventions with selected children within the constraints of their service context. Conclusions & implications: New, evidence‐based SSD interventions may be challenging to implement in routine practice because they have in common a need for therapists who understand applied linguistics and can be flexible with service delivery. Appreciating what it really takes to do routine intervention differently is vital for managers and services who have to make decisions about priorities for implementation, along with realistic plans for resourcing and supporting it. WHAT THIS PAPER ADDS: What is already known on the subject: Many SSD interventions have an evidence base but are not widely adopted into routine clinical practice. Addressing this is not just about individual therapists or education/training, as workplace pressures and service delivery models make it difficult to change practice. What this paper adds to the existing knowledge: This paper applies innovations from implementation science to help explain how what is going on in services can support or constrain capacity for implementing evidence‐based SSD interventions. What are the potential or actual clinical implications of this work?: Service managers and therapists will have a clearer idea of the time and support they may realistically have to invest for new SSD interventions to be used routinely. [ABSTRACT FROM AUTHOR]

Background: People with an acquired brain injury (ABI) find it challenging to use social media due to changes in their cognition and communication skills. Using social media can provide opportunities for positive connection, but there is a lack of interventions specifically designed to support safe and successful social media use after ABI. Aims: To investigate the outcomes of completing a social media skills intervention and identify barriers and facilitators for future implementation. Methods & Procedures: The study used a mixed‐methods, pre‐post‐intervention design. A total of 17 adults with an ABI were recruited. Participants completed an intervention that included a short self‐guided course about social media skills (social‐ABI‐lity course), and then participated in a private, moderated Facebook group over a 12‐week period (social‐ABI‐lity Facebook group). Data were collected over this period through observation of group activity and weekly surveys. They were also collected on social media use and quality of life at pre‐intervention, post‐intervention and after 3 months. Participants provided feedback on the experience of participating in the programme via a post‐intervention interview. Outcomes & Results: At post‐intervention, there were significant improvements in confidence in using Facebook (p = 0.002) and enjoyment of using Facebook to connect with others (p = 0.013). There was no significant change in reported quality of life, although participants described the multiple benefits of connection they perceived from involvement in the group. Observational data and feedback interviews were informative about the feasibility and acceptability of the intervention. Conclusions & Implications: This pilot study provided preliminary evidence that an intervention comprising a short, self‐guided training course and a private, moderated Facebook group improved outcomes for people with ABI. Key recommendations for future implementation include embedding active peer moderators within groups and taking an individualized approach to delivery of the intervention. WHAT THIS PAPER ADDS: What is already known on the subject: Research has documented the challenges that people with ABI experience in using social media, and the difficulty for rehabilitation clinicians in providing appropriate support in this field. What this paper adds to existing knowledge: This pilot study reports the outcomes of people with ABI completing a short, self‐guided social media skills course and participating in a private, moderated Facebook group. After the intervention, participants reported significantly increased confidence and enjoyment in using Facebook, described the benefits of connection found in the groups, and suggested potential improvements for future implementation. What are the potential or actual clinical implications of this work?: With the growing use of social media for connection and participation, there is a professional obligation to address social media communication skills in cognitive–communication rehabilitation for people with ABI. The findings of this study will inform interventions and future research to assist people with ABI to build their social media skills for communication, social support and a sense of connection. [ABSTRACT FROM AUTHOR]

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

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

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

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

Introduction: Disparities in the uptake of routine and COVID‐19 vaccinations have been observed in migrant populations, and attributed to issues of mistrust, access and low vaccine confidence. Participatory research approaches and behaviour change theory hold the potential for developing tailored vaccination interventions that address these complex barriers in partnership with communities and should be explored further. Methods: This study used a theory‐informed, community‐based participatory research approach to co‐design a culturally tailored behaviour change intervention aimed at increasing COVID‐19 vaccine uptake among Congolese migrants in London, United Kingdom (2021–2022). It was designed and led by a community‐academic partnership in response to unmet needs in the Congolese community as the COVID‐19 pandemic started. Barriers and facilitators to COVID‐19 vaccination, information and communication preferences, and intervention suggestions were explored through qualitative in‐depth interviews with Congolese migrants, thematically analysed, and mapped to the theoretical domains framework (TDF) and the capability, opportunity, motivation, behaviour model to identify target behaviours and strategies to include in interventions. Interventions were co‐designed and tailored in workshops involving Congolese migrants. Results: Thirty‐two Congolese adult migrants (24 (75%) women, mean 14.3 (SD: 7.5) years in the United Kingdom, mean age 52.6 (SD: 11.0) years) took part in in‐depth interviews and 16 (same sample) took part in co‐design workshops. Fourteen barriers and 10 facilitators to COVID‐19 vaccination were identified; most barrier data related to four TDF domains (beliefs about consequences; emotion; social influences and environmental context and resources), and the behavioural diagnosis concluded interventions should target improving psychological capability, reflective and automatic motivations and social opportunities. Strategies included culturally tailored behaviour change techniques based on education, persuasion, modelling, enablement and environmental restructuring, which resulted in a co‐designed intervention comprising community‐led workshops, plays and posters. Findings and interventions were disseminated through a community celebration event. Conclusions: Our study demonstrates how behavioural theory can be applied to co‐designing tailored interventions with underserved migrant communities through a participatory research paradigm to address a range of health issues and inequalities. Future research should build on this empowering approach, with the goal of developing more sensitive vaccination services and interventions which respond to migrant communities' unique cultural needs and realities. Patient or Public Contribution: Patient and public involvement (PPI) were embedded in the participatory study design and approach, with community members co‐producing all stages of the study and co‐authoring this paper. An independent PPI board (St George's Migrant Health Research Group Patient and Public Involvement Advisory Board) comprising five adult migrants with lived experience of accessing healthcare in the United Kingdom were also consulted at significant points over the course of the study. [ABSTRACT FROM AUTHOR]

People with Down syndrome have complex health care needs which are not always fully met. Health care improvements are required to better meet these needs. Quality indicators are an important tool for improving health care. However, quality indicators for health care for people with Down syndrome are scarce. Existing quality indicators focus on medical (physical) needs or the clinical setting, even though it is acknowledged that quality measures should reflect the total of quality aspects relevant to the population at stake, which may encompass aspects beyond the medical domain. These aspects beyond the medical domain are the focus of the current paper, which aims to provide insight into the way people with Down syndrome live their lives, how health care may fit in, and how this may impact the development of quality indicators. The paper is based on data originating from interviews with people with Down syndrome and their parents as well as focus groups with support staff members working in assisted living facilities for people with intellectual disability. The data revealed a lot of variation in how people with Down syndrome live their lives. Nevertheless, we were able to identify 11 topics, which we grouped into three overarching themes: (1) Being different yet living a normal life; (2) Down syndrome‐(un)friendly society and services; and (3) family perspective. The variation in our data stresses the importance of health care that takes a person's life into account beyond the medical domain, as exemplified by the identified topics. Our findings also show that a good life is not merely depending on good health care supported by well‐defined quality indicators, but on (support in) all life domains. [ABSTRACT FROM AUTHOR]

Many Australians are requiring mental health care, including families, leading to long wait times in order to access support. Walk‐in therapy reduces barriers to mental health support services by providing support at the time that families seek help. This paper presents a proof‐of‐concept study investigating the acceptability and short‐term effectiveness of an online walk‐in family therapy service, Walk‐in Together (WIT). Part 1 of the paper describes the experiences of 44 family members from 22 families who presented to a public family therapy clinic for a virtual walk‐in family therapy session. The session was conducted by a team of three experienced family therapists. Family members' experiences were sought pre‐session, post‐session, and at 6 weeks follow‐up via survey and interview. Part 2 of the paper explores therapist perceptions (n = 7) of the WIT approach, through thematic analysis of semi‐structured interview data. Post‐session feedback showed 85% of family members found WIT to be helpful and 50% were optimistic about their future as a family after their WIT session. Six weeks post‐session it was revealed that WIT supported planning for families in equipping them to move forward with 88% of family members reporting that they knew what to do after the session. All therapists uniformly experienced the model as offering a timely and beneficial service, suitable for diverse presentations and constellations of families. These preliminary results suggest the significant utility of this WIT intervention as a well‐received and helpful service for families, who valued the easy access and rapid therapeutic response afforded by the online, walk‐in delivery model. This proof‐of‐concept paper suggests the potential for further development and growth of WIT, as well as other mental health support services using a walk‐in, telehealth model to meet the rising demand for therapeutic support for families in distress. [ABSTRACT FROM AUTHOR]

Introduction: Older carers or 'care partners' of older people experiencing care needs often provide essential support, at times while neglecting their own health and well‐being. This is an increasingly frequent scenario due to both demographic changes and policy shifts towards ageing in place. Multiple community stakeholders within the care and support ecosystem hold valuable expertise about the needs of older care partners, and the programme and policy responses that may better support their health and well‐being. The aim of this study was to identify the perspectives of stakeholders obtained through the codesign phase of a multicomponent research project investigating new models of care and support for older care partners suitable for the Australian context. Methods: Principles of codesign were used to engage a purposeful sample of older care partners, health professionals, researchers, policy makers and health service administrators. Participants took part in a series of three codesign workshops conducted remotely via video conferencing. The workshops were supported with briefing material and generated consensus‐based summaries, arriving at a preferred service model. Findings: This paper reports the research design and structure of the codesign panels, the range of findings identified as important to support the health and well‐being of older carers of older people, and the resulting service model principles. The codesigned and preferred model of care is currently being prepared for implementation and evaluation in Australia. Public Contribution: This study was conducted using codesign methodology, whereby stakeholders including older care partners and others involved in supporting older carers, were integrally involved with design, development, results and conclusions. [ABSTRACT FROM AUTHOR]

Background: Acquired laryngotracheal stenosis (LTS) is a rare condition that causes breathlessness and dyspnoea. Patients have reconstructive airway surgery to improve their breathing difficulties, but both LTS and the surgery can cause voice difficulties. The existing evidence base for management of voice difficulties for adults with LTS focuses on symptoms. There is limited information to provide clinical guidance for speech and language therapists (SLTs) and a limited understanding of the impact of voice changes on adults with LTS. Aim: To investigate the lived experience of adults with laryngotracheal stenosis (LTS), who have had reconstructive surgery; here focussing on voice concerns with the aim of guiding clinical care for SLTs. Methods and Procedures: A phenomenological, qualitative study design was used. Focus groups and semi‐structured interviews were completed with adults living with LTS who had had reconstructive surgery. Audio recordings were transcribed and inductive thematic analysis was used by the research team to identify themes and sub‐themes. Outcomes and Results: A total of 24 participants (five focus groups and two interviews) took part in the study before thematic saturation was identified in analysis. Three main themes were identified specific to the experience of living with LTS: the Medical, Physical and Emotional journey. All participants referenced voice difficulties as they related to each of these overall themes. Sub‐themes directly related to voice included experience of surgery, information provision, staff expertise/complacency, symptoms, symptom management, identity, support networks, impact on life and living with a chronic condition. Conclusions and Implications: In this qualitative study participants have described the integral part voice difficulties play in their lived experience of LTS and reconstructive surgery. This is considered in the context of their clinical care and the need for individualised management and information provision throughout the course of their condition. The broader research literature relating to voice difficulties is explored with links made to people with LTS and recommendations made for future research into people living with LTS and dysphonia. What this paper adds: What is already known on this subject: Adults with laryngotracheal stenosis (LTS) experience voice changes as a result of their condition, and the surgeries necessary as a treatment. These changes can lead to altered pitch, vocal fatigue, loss of pitch range and loss of volume control. Although there are known psychosocial implications both to living with a chronic condition and voice difficulties there has been no research exploring this in adults with LTS, and there is minimal clinical guidance for speech and language therapists (SLTs) working with these patients. What this paper adds to existing knowledge: This research is the first study to explore the lived experience of adults with LTS who undergo reconstructive surgery, focusing on their voice concerns. This study demonstrates the multifactorial impacts of voice changes on all aspects of the lives of adults with LTS and the need for individualised information provision and clinical care to help support them. What are the potential or actual clinical implications of this work?: Adults with LTS want expert SLTs to facilitate their care and support them throughout their LTS journey alongside other support networks. They want to be carefully prepared for reconstructive surgery and given clear information about symptoms and management of their voice difficulties. This has led to the reorganisation of the care pathway at our centre, and the introduction of a patient‐led pretreatment session. [ABSTRACT FROM AUTHOR]

This article is based on a larger research project, which investigates the effectiveness of a culturally appropriate model, namely ūloa, when working with Tongan people. Ūloa is a communal method of fishing in Tonga, which includes all members of the community. A previous paper described the three phases of ūloa: presenting the concept to health providers and community groups; phase two amended the model based on phase one. This paper reports on phase three and findings related to the increased awareness of ūloa model within the mental health services and to raise awareness of how to work with Pacific people and adjust the health service to suit the needs of this population to test its effectiveness. Using reflexive thematic analysis, results highlighted a number of patterns both across the groups, described as napanapangamālie (harmony, balance), ngāue fakataha (working together/oneness), and toutai (fisher). These findings continue to support that the conventional biomedical approach employed in the mental health services overlooks elements of Tongan constructions of mental illness and the intersections between Tongan and biopsychosocial themes. Care that is based only on the 'medicine' rather than bringing the spiritual aspect into care planning (fake leaves) will not serve the needs of the Tongan community. [ABSTRACT FROM AUTHOR]

Background: There has been a significant uptake in the use of telepractice during the coronavirus SARS‐CoV‐2 (COVID‐19) pandemic. This study explored the experiences of speech and language therapists (SLTs), assistants (SLTAs) and parents with telepractice during the COVID‐19 pandemic. Aims: (1) To identify factors that influenced success of telepractice; and (2) to describe clinicians' and parents' preferences for the future mode of service delivery for preschoolers with communication disorders. Methods & Procedures: The study was conducted in partnership with one publicly funded programme in Ontario, Canada, that offered services to preschoolers with speech, language and communication needs at no cost. SLTs (N = 13), assistants (N = 3) and parents (N = 13) shared their experiences and perspectives during semi‐structured videoconference interviews. Outcomes & Results: Factors that influenced the success of telepractice were reported in three categories: the setting (i.e., where and how telepractice was being delivered); the nature of telepractice (i.e., the services that were provided via telepractice); and the individuals (i.e., who was involved in telepractice). These factors were reported to interact with each other. As the needs for each child and family are unique, parents and clinicians reported a preference for a hybrid and flexible service delivery model in the future. Conclusions & Implications: The themes identified in this study can be used by clinicians and managers to consider factors that influence the success of telepractice for children and families. WHAT THIS PAPER ADDS: What is already known on the subject?: Studies conducted before the COVID‐19 pandemic showed that telepractice was an effective and acceptable service approach. However, some clinicians and parents reported wanting to resume in‐person visits. The provision of telepractice services to families with children with communication disorders increased significantly during COVID‐19. What this paper adds to existing knowledge?: Parents and clinicians shared factors that influenced the success of telepractice during semi‐structured interviews. Factors were identified in three categories: the setting (i.e., where and how telepractice was being delivered); the nature of telepractice (i.e., the services that were provided via telepractice); and the individuals (i.e., who were involved in telepractice). As each child's and family's needs are unique, parents and clinicians reported a preference for a hybrid and flexible service delivery model in the future. What are the potential or actual clinical implications of this work?: SLTs and SLT managers can use the factors identified to discuss with parents and decide whether telepractice may be well suited to the needs of each child and family. [ABSTRACT FROM AUTHOR]

Modern health‐care systems have customarily approached hepatitis C in ways that resemble the public health approach to HIV/AIDS known as 'HIV exceptionalism'. HIV exceptionalism describes the unusual emphasis on privacy, confidentiality and consent in approaches to HIV and was partly developed to address HIV/AIDS‐related stigma. In the case of hepatitis C, exceptionalist approaches have included diagnosis and treatment by specialist physicians and other 'boutique' public health strategies. The recent availability of highly effective, direct‐acting antivirals alongside goals to eliminate hepatitis C have heralded dramatic changes to hepatitis C health care, including calls for its 'normalisation'. The corollary to exceptionalism, normalisation aims to bring hepatitis C into routine, mainstream health care. This article draws on interviews with stakeholders (n = 30) who work with hepatitis C‐affected communities in policy, community, legal and advocacy settings in Australia, alongside Fraser et al.'s (2017, International Journal of Drug Policy, 44, 192–201) theorisation of stigma, and Rosenbrock et al.'s (1999, The AIDS policy cycle in Western Europe: from exceptionalism to normalisation. WZB Discussion Paper, No. P 99‐202) critique of normalisation to consider the perceived effects of hepatitis C normalisation. Stakeholders described normalisation as a stigma‐reducing process. However, they also expressed concerns about the ongoing stigma and discrimination that is not ameliorated by normalisation. We suggest that in centring normalisation, changes in health care may exaggerate the power of technological solutions to transform the meanings of hepatitis C. [ABSTRACT FROM AUTHOR]

Therapy process research focuses on understanding how therapy is conducted by professionals in the field. It is a nascent field of psychotherapy enquiry in India. This paper explores how novice therapists in India perceive their clients, and how this influences the process of therapy. In depth interviews were conducted with ten novice therapists, with less than six years of practice experience, from Mumbai, India. The data was thematically analysed. The data revealed that therapists' perceptions of their clients were defined by socio‐demographic features of age and gender, along with presenting complaints and personal attributes. Participants had defined beliefs about good clients as contrasted with difficult ones. Distinct preferences for particular client types were identified. The antecedents to these beliefs were attributed to the therapist's worldview, their training and the supervision received. These views, and the conceptualisation of the client, influenced the choice of client, the process of therapy and how they proceeded with sessions, and their methods of referral. The data from the study has implications for therapist training, supervision and further research. [ABSTRACT FROM AUTHOR]

Background: Inflammatory bowel diseases (IBDs) are chronic gastrointestinal diseases that negatively affect the enjoyment of food and engagement in social and cultural gatherings. Such experiences may promote psychosocial challenges, an aspect of IBD often overlooked and under‐supported in clinical settings and research. Objectives: This study explored the psychosocial experiences that young adults with IBD have with food via a qualitative patient‐led research process. Methods: Trained patient researchers conducted this study by engaging peers via semi‐structured interviews and focus groups in a three‐step co‐design process. Participants (n = 9) identified the research topic (SET), explored the topic and identified emerging themes (COLLECT), refined themes and made recommendations for healthcare system change (REFLECT). Results: Themes that emerged included: 'Experimenting with Food', 'Evolution Over Time', 'Diet Changes are Emotional' and 'Role of Stigma'. Participants identified the significance and frustrations of repeated testing and experimenting with food compatibility, and noted nuances in food relationships as they gain knowledge and experience over time. They emphasized the importance of maintaining a sense of hope throughout and wished to impart this to newly diagnosed patients. Conclusion: Participants experience numerous psychosocial challenges as they strive to manage their diet, noting gaps in support available from IBD practitioners. Participants made practical recommendations for healthcare system change to improve patient outcomes, highlighting the importance of sharing stories and collaboratively including patients in the development of new services and protocols. Authors recommend further research in this area to build a body of knowledge and support that helps IBD patients maintain hope while navigating challenges with food. Patient or Public Contribution: The first four authors on this paper were the lead researchers in this study's design and analysis and identify as patients; they conducted the research with this identity at the forefront following a peer‐to‐peer research model. These authors were mentored by patient researchers who also contributed to the manuscript, and the research process itself was co‐lead and directed by other patient participants and consultants. Results and recommendations coming from this paper came directly from patient participants. [ABSTRACT FROM AUTHOR]

Background: Measuring, assessing and managing outcomes in school practice environments is difficult due to the complex nature of school communities as well as the recent shift in service‐delivery models towards tiered approaches. In tiered approaches, multiple levels of service are offered to better match students' needs. Each level of service may require different outcomes and management techniques. Research to date on outcomes has focused on measuring outcomes in medical settings, leaving a substantive gap in the literature regarding practice in schools. Aims: The first aim was to explore how school‐based speech–language therapists approached outcomes management as their clinical programmes transitioned to tiered service‐delivery models The second aim was to describe the successes and challenges in outcomes management reported by clinicians in this context. Methods & Procedures: A secondary deductive‐inductive content analysis was performed using qualitative interviews with 24 clinical managers and senior therapists from schools across Ontario, Canada. Using a framework of outcomes measurement, assessment and management in schools based on previous research studies, data were grouped into broad categories deductively, and then the content of each category was further explored using inductive coding. Iterative peer debriefing and reflexive journaling were key strategies to increase the trustworthiness of the results. Findings & Results: Participants reported measuring and qualitatively assessing seven key outcomes for school‐based practice. These included: (1) student progress and achievement, (2) student participation and inclusion in the school community, (3) stakeholder perspectives, (4) 'buy‐in', (5) expanded capacities, (6) responsiveness to needs and (7) accountability to systems. Participants reported more challenges than successes in outcomes management during this transition to tiered services. Challenges were attributed to idiosyncratic organizational barriers, the transition to tiered models and the philosophy of working within the educational system. Conclusions & Implications: School‐based speech–language therapists measure, assess and manage multiple outcomes relevant to school‐based practice in tiered service‐delivery models. Many challenges remain. Solutions to support meaningful, systematic and proactive outcomes management in schools should address the broader set of outcomes relevant to tiered service‐delivery models and the unique practice context of the educational system, while remaining responsive to idiosyncratic organizational factors. Sustained clinical–research collaboration and knowledge exchange is recommended. What This Paper Adds: What is already known on the subject: Systematic, proactive collection and interpretation of outcomes has long been encouraged within speech–language therapy. However, implementing outcomes management in clinical practice remains a substantial challenge. Additionally, research on outcomes to date has focused on medical practice environments, to the exclusion of school‐based practice. What are the potential or actual clinical implications of this work?: Outcomes management is valued in school practice environments; however, the current repertoire of techniques for outcomes management are a poor match for school‐based practice. Clinicians in schools would benefit from the development of contextually relevant, meaningful and feasible outcomes management tools. [ABSTRACT FROM AUTHOR]

The COVID‐19 pandemic presented numerous challenges to acute malnutrition screening and treatment. To enable continued case identification and service delivery while minimising transmission risks, many organisations and governments implemented adaptations to community‐based management of acute malnutrition (CMAM) programmes for children under 5. These included: Family mid‐upper arm circumference (MUAC); modified admission and discharge criteria; modified dosage of therapeutic foods; and reduced frequency of follow‐up visits. This paper presents qualitative findings from a larger mixed methods study to document practitioners' operational experiences and lessons learned from these adaptations. Findings reflect insights from 37 interviews representing 15 organisations in 17 countries, conducted between July 2020 and January 2021. Overall, interviewees indicated that adaptations were mostly well‐accepted by staff, caregivers and communities. Family MUAC filled screening gaps linked to COVID‐19 disruptions; however, challenges included long‐term accuracy of caregiver measurements; implementing an intervention that could increase demand for inconsistent services; and limited guidance to monitor programme quality and impact. Modified admission and discharge criteria and modified dosage streamlined logistics and implementation with positive impacts on staff workload and caregiver understanding of the programme. Reduced frequency of visits enabled social distancing by minimising crowding at facilities and lessened caregivers' need to travel. Concerns remained about how adaptations impacted children's identification for and progress through treatment and programme outcomes. Most respondents anticipated reverting to standard protocols once transmission risks were mitigated. Further evidence, including multi‐year programmatic data analysis and rigorous research, is needed in diverse contexts to understand adaptations' impacts, including how to ensure equity and mitigate unintended consequences. Key messages: COVID‐19 CMAM programme adaptations enabled service continuity despite pandemic‐related challenges. Further evidence is needed on long‐term impacts.Family MUAC was well‐accepted and addressed screening gaps from COVID‐19 disruptions. Challenges included sustaining caregiver measurement accuracy; handling inaccurate self‐referrals to encourage health‐seeking behaviours; and limited programme design and monitoring guidance and tools.Modified admission criteria and therapeutic food dosage reduced contact between staff and children and streamlined logistics and implementation. Concerns remained about effects on programme admissions and outcomes.Reduced frequency of follow‐up visits successfully reduced facility crowding and need for caregiver travel. However, infrequent monitoring of childrenmay miss deterioration. [ABSTRACT FROM AUTHOR]

Background: The Veterans Health Administration (VHA) is building a Whole Health system of care that aspires to empower and equip each Veteran to pursue a personally meaningful vision of health and well‐being. As part of this effort, VHA has developed Taking Charge of My Life and Health (TCMLH), a peer‐led, group‐based programme that seeks to support Veterans in setting and pursuing health and well‐being goals. Prior research showed TCMLH groups to positively impact Veteran outcomes; yet, little is known about Veterans' own experiences and perspectives. Methods: We completed semi‐structured telephone interviews with 15 Veterans across 8 sites who had participated in TCMLH groups offered by the VHA in the virtual format between Summer 2020 and Fall 2021. Inductive thematic analysis was applied to interview transcripts to generate themes. Findings: We identified five themes regarding Veterans' experiences with TCMLH: (1) navigating the virtual format; (2) internalizing the value of health engagement; (3) making healthy lifestyle changes; (4) forging social connections; and (5) taking on a more active role in healthcare. Conclusion: Veterans perceived virtual TCMLH groups as meaningful and beneficial, yet also highlighted several challenges. Their perspectives speak to the need to supplement time‐limited programmes like TCMLH with ongoing, community‐based support. Virtual group‐based well‐being programmes are a promising innovation. Other healthcare systems may draw on VHA's experience while tailoring format and content to the needs of their patient populations. Patient or Public Contribution: Veterans were involved as evaluation participants. A Veteran consultant, who is a coauthor on this paper, was engaged through the conceptualization of the evaluation, development of data collection materials (interview guide) and writing. [ABSTRACT FROM AUTHOR]

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

Aim: Globally, type 2 diabetes care is often fragmented and still organised in a provider‐centred way, resulting in suboptimal care for many individuals. As healthcare systems seek to implement digital care innovations, it is timely to reassess stakeholders' priorities to guide the redesign of diabetes care. This study aimed to identify the needs and wishes of people with type 2 diabetes, and specialist and primary care teams regarding optimal diabetes care to explore how to better support people with diabetes in a metropolitan healthcare service in Australia. Methods: Our project was guided by a Participatory Design approach and this paper reports part of the first step, identification of needs. We conducted four focus groups and 16 interviews (November 2019–January 2020) with 17 adults with type 2 diabetes and seven specialist clinicians from a diabetes outpatient clinic in Brisbane, Australia, and seven primary care professionals from different clinics in Brisbane. Data were analysed using reflexive thematic analysis, building on the Capability, Opportunity, Motivation and Behaviour model. Results: People with diabetes expressed the wish to be equipped, supported and recognised for their efforts in a holistic way, receive personalised care at the right time and improved access to connected services. Healthcare professionals agreed and expressed their own burden regarding their challenging work. Overall, both groups desired holistic, personalised, supportive, proactive and coordinated care pathways. Conclusions: We conclude that there is an alignment of the perceived needs and wishes for improved diabetes care among key stakeholders, however, important gaps remain in the healthcare system. [ABSTRACT FROM AUTHOR]

Introduction: No one can argue on the importance of health in one's life. However, the value of health in the context of other priorities for individuals is not always as clear. Further, patients' experience with the healthcare system is rarely contrasted with the service providers' expectations. The aim of this paper is to examine and compare patients' and providers' own definitions of health and their perceptions of the healthcare delivery experience from the lens of residents and providers in West Baltimore, Maryland. Methods: This was a qualitative study with semi‐structured focus groups (15 sessions) and individual in‐depth interviews (21 interviews) with 94 participants. Two independent coders thematically analysed the transcripts. Results: Patients identified five areas where health systems can help them stay healthy or become healthier: affordability and costs of care; accessibility; clinician/patient communication; addressing social determinants; and stigma and trust. Providers acknowledged that the healthcare experience is not always perfect. While the medical team focuses on conversations that enhance medical care, patients are expecting providers to touch on subjects beyond medical care. Conclusions: Patients and providers need to consider that although they have a common value towards health, there is still a gap in what users expect and what providers can offer. To further align those expectations, there is a need for increasing involvement of patient in care administration and improving dialogue between the parties about these differences. Patient or Public Contribution: A Stakeholder Advisory Board (SAB)—comprised of a patient, two community leaders, a physician and two healthcare administrators—was instrumental in codeveloping the study material (e.g., interview guides), engaging patients in the research process, identifying participants and codeveloping dissemination material. Two SAB members—Gail Graham, a patient consultant/professor, and Marcia Cort, a physician—are coauthors. [ABSTRACT FROM AUTHOR]

Introduction: Women experiencing intimate partner violence (IPV) do not tend to go very frequently to formal support services. The objective of this study is to identify barriers related to the accessibility, acceptability, equity, appropriateness and effectiveness of IPV services from the perspective of the professionals working in the IPV public services. Methods: A qualitative study was carried out in the Madrid region based on 13 semi‐structured interviews of young women who had survived IPV as well as 17 interviews with professionals. A thematic content analysis was performed, guided by the dimensions proposed by the World Health Organization (WHO) for friendly services for young people. Results: From the perspective of the young women and professionals, barriers were identified for all the dimensions of the WHO's friendly services for young people: accessibility: lack of information and support from the social setting, scarce dissemination of the services, economic cost, non‐adapted schedules, inadequate locations or lack of services in settings close to young people; acceptability: lack of protocols to guarantee confidentiality, lack of speed in the provision of services or their referral, unwelcoming environments or unsympathetic professional malpractice; equity: discriminatory professional attitudes towards groups with different social status and lack of protocols to ensure the care of these groups; appropriateness: unmet needs and lack of multidisciplinary teams; and effectiveness: shortage of time, resources, competent professionals, protocols and coordination. Conclusions: Strategies are needed to make the necessary changes to promote friendly services for the care of young people exposed to IPV. Additionally, it must be emphasized that resources are needed to raise awareness and disseminate IPV services, as well as to train professionals in this area. Patient or Public Contribution: This paper is based on professionals' perspectives of public IPV‐related services of different areas such as Psychology, Social Work, Nursing, Psychiatry, Social Education and young women exposed to IPV. They either work in the public administration at the local, regional or state level or in NGOs in Spain. [ABSTRACT FROM AUTHOR]

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

Background: Patient satisfaction has been seen as a key criterion when evaluating hospitals and is one of the main focuses of the current health‐care reform in China. This paper aimed to explore patient‐ and hospital‐level factors associated with inpatient satisfaction, which can provide policy implications for the evaluation and development of a patient‐oriented health‐care system. Methods: The paper analyses data from the 2017 China National Patient Survey which includes 20 300 inpatients from 131 tertiary hospitals across 31 provinces. Descriptive analysis and multivariable logistic regressions are conducted to identify key factors related to satisfaction. Results: Patient sociodemographic characteristics, including gender, age, income and insurance type, are found to be strongly associated with their satisfaction of inpatient experience. In terms of institutional characteristics, hospital type, size, staffing and financial performance are also significantly correlated with inpatient satisfaction. Patients are more satisfied with specialist hospitals and large hospitals measured by the number of beds and surgeries. Hospitals with higher nurse‐to‐bed ratio also receive more satisfaction. The financial performance of hospitals, however, is negatively associated with satisfaction. Conclusion: Patient satisfaction contains unique information on service quality and thus should be incorporated into the matrix of hospital evaluation. Meanwhile, differences in patient composition must be adjusted to make fair comparisons across hospitals. Moreover, future reform needs to put greater efforts in the design of comprehensive public insurance scheme, efficient hospital structure and an overall well‐functioning health‐care delivery system in order to better serve patients in China. [ABSTRACT FROM AUTHOR]

Patient participation in healthcare activities is key to producing successful patient‐centered care. However, little is known about both nurses' and patients' perspectives regarding patient participation in East Asia. This paper compared and contrasted perspectives of patient participation in healthcare activities between nurses and patients, using a qualitative study with a purposive sample of 39 nurses and 15 patients. A semi‐structured interview was applied to focus groups for nurses, and to face‐to‐face interviews for patients. Content analysis was utilized to analyze the data, and common themes and subthemes were identified showing three similarities (authoritative culture, participation behaviors, and obstacles to participation), and two differences (sources of acquiring patient‐related health information, and responsible party). Nurses and patients did not entirely view participation in healthcare activities congruently. Relevant clinical practices are also suggested, including respecting patients' autonomy, nurses' using layman's language for explanations, patients' understanding the meaning behind their participation behaviors, recognizing obstacles faced in enhancing patient participation with adjusted nursing workload, actively providing needed health information, and leading patients to realize that they will be responsible for their health behaviors after discharge. [ABSTRACT FROM AUTHOR]

This paper examines the provision of primary care for young people with an eating disorder within the UK from the perspectives of three key stakeholder groups: young people with an eating disorder, carers of young people with an eating disorder and General Practitioners (GPs). Twenty‐two young people with an eating disorder (aged 16–25) and 10 carers completed qualitative questionnaires or participated in interviews about their experiences of seeking primary care from GPs. Forty‐one GPs participated in either focus groups or interviews about delivering care to young people with eating disorders. Interviews and focus groups were audio‐recorded and transcribed verbatim. All data were then analysed qualitatively using thematic analysis. Our analysis indicates that GPs often felt they lacked the necessary knowledge and/or resources to provide adequate support to young people with an eating disorder who they also often viewed as a "difficult" patient group. Young people and carers expressed mixed but predominantly negative experiences; reporting that GPs often lacked adequate understanding of eating disorder, failed to take participants' concerns seriously, and delayed referring patients to specialist services. Our findings indicate a need for interventions that will improve primary care provision and access to appropriate support for young people with an eating disorder. [ABSTRACT FROM AUTHOR]

Background: To facilitate change for person‐centred care, there is a need to invest in measures to assess if and how healthcare systems are delivering care based on the principles of person‐centred care. This paper describes the first phase in developing an item bank to measure patients' experiences of person‐centred care. Aim: The aim was to translate, culturally adapt and evaluate candidate items to measure person‐centred care from the patient's perspective. Methods: The Centre for person‐centred care at Gothenburg university and the UK Person‐centred and coordinated care model informed our conceptual framework. The initial pool of item candidates originated from a previous systematic review where 855 items were identified. In this study, a mixed method design was used involving persons with experience as patients, caregivers, healthcare professionals and researchers in person‐centred care or questionnaire design (n = 84). The item analysis included two validation rounds using web questionnaires, a focus group and cognitive interviews. Results: From the initial pool, 155 items covering core domains and subdomains of person‐centred and coordinated care were selected for translation and qualitative item analysis. After translation, 44 items were excluded (duplicates). After the first validation round, 21 items were rephrased and 35 were excluded (due to low ratings, lack of comprehensibility, were duplicates or too specifically phrased). To reflect the ethical basis of person‐centred care, rewordings were also made to encompass the patient as an active partner in care and where communication and information goes two‐ways and care is co‐created. After the second round, 11 items were rephrased and 25 items were excluded (for being redundant/repetitive). Six new items were added (covering access to care, patient capabilities, mental well‐being and identifying goals). Conclusion: We have developed a first set of 57 items to proceed towards developing an item bank to measure the patient experiences of person‐centred care. [ABSTRACT FROM AUTHOR]

The diagnosis of borderline personality disorder (BPD) has been found to carry stigma and poor hope of recovery. More recently, it has been regarded as a treatable condition through psychotherapy. Despite this, patients often experience lengthy hospitalizations, limited access to treatment, and poor outcomes. This paper describes the experiences of psychiatric nurses working with people diagnosed with BPD in acute mental health in‐patient settings in Ireland. Seven nurses were interviewed, and the transcripts were analysed using a reflective and inductive approach. Overall, the nurses did not feel confident that their interventions were effective or valued by the wider service or patients. The nurses articulated their invidious professional circumstances, whereby they were required to act in ways, which ran counter to their vision of therapeutic or recovery‐focused work. These views and perceptions that in‐patient care is often ineffectual are widely echoed in the literature. We contend that the effect of this circumstance for these nurses approaches moral distress. The nurses were aware of more effective methods of care and treatment for BPD but perceived that they were unable to influence the culture of in‐patient care. [ABSTRACT FROM AUTHOR]

Introduction: Longitudinal Integrated Clerkships (LICs) have demonstrated benefits for students' learning and development in medical education globally. The model emphasises importance with respect to continuity and time in the workplace for learners. There is a need to explore how LICs become a viable training model for learners. An amalgamative LIC model was drawn upon to inform the design of a placement for trainee pharmacists on a hospital ward. This study sought to determine the local viability of a longitudinal placement for trainee pharmacists, using communities of practice learning theory to interpret findings. Methods: A design‐based research approach informed study design. A longitudinal placement was implemented on two hospital wards for 13 weeks. Trainees (n = 3) were interviewed four times over a 14‐week period. Ward staff (n = 14) were interviewed at week 14. Interviews were transcribed verbatim. Qualitative longitudinal analysis, using the trajectory approach, was conducted using abductive analysis. The coded data were organised into a framework and subthemes were created. Results: Trainees acquired membership within the multi‐disciplinary ward team over time. This led to an enriched learning experience and the trainee's professional development improved as they attained more responsibilities. This enabled them to make a greater contribution to patient care; more medication consultations occurred, and discharge times improved. Discussion The local viability of the longitudinal placement appears to be linked to the trainee's ability to acquire membership within the ward community of practice. Membership gave trainee's access to learning opportunities, supporting their development, and they earnt the trust of staff, leading to more responsibilities for providing patient care. Further research into developing longitudinal placements that support trainee healthcare professionals to acquire membership within communities of practice is warranted. This paper highlights the importance of healthcare trainees acquiring membership within healthcare teams to enhance their learning experience, advance their professional development and improve patient care. [ABSTRACT FROM AUTHOR]

Positioning the individual at the centre of care (person‐centred care [PCC]) is essential to improving outcomes for people living with multiple chronic conditions. However, research also suggests that this is structurally challenging because health systems continue to adopt long‐standing, episodic care encounters. One strategy to provide a more cohesive, individualised approach to care is the implementation of the nurse navigator role. Current research shows that although PCC is a focus of navigation, such care may be hindered by the rigid, systematised health services providing siloed specialist care. In this paper, we utilised a case study method to investigate the experiences of a nurse navigator and patient. The nurse navigator and the patient participated in individual interviews, the transcripts of which were analysed using critical discourse analysis. Findings from a larger research project suggest that traditional measures (hospital avoidance, emergency department usage) which work as the service objectives of the nurse navigator service have the potential to stifle the delivery of PCC. The analysis from this case study supports the broader findings and further highlights the need for improved alignment between service objectives and the health and well‐being of the individuals utilising the services. [ABSTRACT FROM AUTHOR]

Australia is undergoing major aged care reforms, changing from the previous service provider‐driven approach to consumer‐directed care principles. In residential aged care, this has resulted in a significant reduction in government funding in order to support reform initiatives in home and community‐based care. There has been limited research on the impact of structural aspects of the reforms such as the effect of changes in funding focus. Using a qualitative descriptive research methodology, this study explores the impact of the reforms on staff at various levels of operational responsibility in residential aged care. Issues identified by participants centered on the capacity to deliver care in three areas, the impact of funding reduction, challenges in meeting increasingly complex needs of residents and their families, and new requirements for care roles within current limitations. This paper provides an insight into how and why operational issues have informed the findings of the current Australian Royal Commission into Aged Care Quality and Safety. It identifies areas of support for the aged care workforce that are crucial in fulfilling consumer‐focused care delivery. [ABSTRACT FROM AUTHOR]

Genomic medicine has captured the imaginations of policymakers and medical scientists keen to harness its health and economic potentials. In 2012, the UK government launched the 100,000 Genomes Project to sequence the genomes of British National Health Service (NHS) patients, laying the ground for mainstreaming genomic medicine in the NHS and developing the UK's genomics industry. However, the recent research and reports from national bodies monitoring genomic medicine's roll‐out suggest both ethical and practical challenges for health‐care professionals. Against this backdrop, this paper, drawing on qualitative research interviews with general practitioners (GPs) and documentary analysis of policy, explores GPs' views on mainstreaming genomic medicine in the NHS and implications for their practice. Analysing the NHS's genomic medicine agenda as a 'sociotechnical imaginary', we demonstrate that whilst sociotechnical imaginaries are construed as collectively shared understandings of the future, official visions of genomic medicine diverge from those at the forefront of health‐care service delivery. Whilst policy discourse evokes hope and transformation of health care, some GPs see technology in formation, an unattainable 'utopia', with no relevance to their everyday clinical practice. Finding space for genomics requires bridging the gap between 'work as imagined' at the policy level and 'work as done' in health‐care delivery. [ABSTRACT FROM AUTHOR]

Background: As the prevalence of paediatric dysphagia increases, the need for long‐term non‐oral feeding has also increased. Despite these developments, little is known about caregiver experiences of transitioning a child onto long‐term non‐oral feeds, and the factors which influence the process of decision‐making and the provision of consent to do so. This paper aims to explore these factors. Methods: Semi‐structured interviews were conducted with nine participants recruited from the multidisciplinary out‐patient non‐oral feeding clinic at a hospital. Interviews explored caregiver experiences of decision‐making and the process of providing consent when transitioning their child to non‐oral feeds, as well as the support structures available to the caregivers. Interviews were audio recorded and transcribed, then analyzed using thematic analysis (Braun & Clarke, 2013) and content analysis (Neuendorf, 2016). Results: Challenges to care and quality of life, access to information and culturally relevant counselling, and the involvement of family members and significant others emerged as prominent themes. Findings suggest that quality of life was the most common motivating factor for transitioning a child to non‐oral feeding methods. Several participants suggested that support and information sharing via digital platforms were both useful and effective. Implications: The findings highlight caregivers' needs for improved access to information and social support. The findings hold implications for training of healthcare providers working in similar contexts and for models of service delivery which ensure that family‐centred intervention can be delivered in culturally and contextually relevant ways. With widespread access to smartphones, counselling should include digital messaging as a way of providing support and information sharing. Future research should focus on the complexities of counselling and the process of informed consent in settings impacted by diverse cultural, contextual and linguistic barriers, as well as the potential value of mobile health (mhealth) in ensuring improved health outcomes. [ABSTRACT FROM AUTHOR]

Children and young people living in residential care are vulnerable to sexual abuse, and there is scant evidence about what sexuality education could help address this vulnerability. This paper explores the impact of the Power to Kids: Respecting Sexual Safety programme, which involved capacity-building workers to have 'brave conversations' with children and young people in residential care. The aim of the study was to capture the perceptions of workers about changes in their skill and confidence levels in relation to having brave conversations with children and young people and the impact of those conversations on children and young people. A mixed-methods study was undertaken, involving multiple sets of interviews with 27 workers associated with four residential houses. The qualitative and quantitative data analysis showed that workers perceived the impact of the capacity building and brave conversations as strengthening protective factors available to children and young people vulnerable to sexual abuse. The research revealed the 'LINC model' as a viable approach to capacity-building workers to educate children and young people in residential care about sexual health and safety. Workers perceived the enhancement of the following protective factors: stronger safe relationships, greater comfort disclosing abuse and improved knowledge of normal versus harmful sexual behaviour. [ABSTRACT FROM AUTHOR]

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

Background: Families and professionals caring for a child without a definitive diagnosis face unique challenges, particularly in relation to managing uncertainty; access to healthcare; obtaining relevant information and support; and trying to navigate a healthcare system that is often fragmented. We used co‐design to inform the establishment of the first UK specialist nursing post dedicated to working with children with undiagnosed genetic conditions and their families. Objectives: (1) To understand what families and hospital staff want from the service; (2) To understand how the post should be operationalized in practice; (3) To develop the job description and person specification for the postholder. Methods: A range of approaches were used to collect data: interviews (nine parents and 10 hospital staff); a focus group (three parents); a creative workshop (six patients and siblings); and an online forum (81 parents). Data were analyzed using framework and thematic analysis. The strands of data were brought together and reviewed as a whole to formulate the postholder's job description and person specification. Results: Stakeholders identified nine key elements to the role which were incorporated into the job description: practical support; point of contact; community liaison; signposting to other services; care coordination; supporting families; advocacy; raising awareness; and emotional support. Conclusions: Highlighted in this paper are the practical aspects of engaging and involving all relevant stakeholders in the process of co‐designing a new post and subsequent staff recruitment. The flexibility employed in the setting and methods of data collection were instrumental in ensuring that the views of a diverse range of participants were ascertained. A major consideration is the resources required to undertake co‐design, in terms of time and finances. We believe that the resources required for the co‐design are offset by the advantages of having the right person in the right post, doing the right job. [ABSTRACT FROM AUTHOR]

This paper explores essential characteristics of current nursing practice from the perspectives of clinically experienced registered nurses in various fields of health care in Sweden. Nursing practice has been the subject of much debate in the past and because of its complexity as well as continuous changes in society it is important to continue the debate. A qualitative study, including 16 group interviews with altogether 74 participants, was conducted. Nursing practice was viewed as a multifaceted field. The participants struggled to define nursing but were able to describe it using concrete examples. The analysis, using interpretive description, identified current practice as essentially consisting of: 'A practice pervaded by comprehensive responsibility', 'A practice that recognises a patient's unique needs', 'A practice based on multifaceted knowledge' and 'A practice that mediates between traditional values and changing demands'. Current nursing practice can be understood as striving to be in close proximity to the patient, but in tension with pervasive requirements and societal changes. Going forward, it is necessary to continue to reflect on and discuss the nature of nursing practice in an interprofessional context. Studies from primary and home care are also needed to broaden the understanding of nursing practice. [ABSTRACT FROM AUTHOR]

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

Context Few qualitative findings have been published that explore and identify the challenges experienced by independent abortion providers during the COVID‐19 pandemic in the United States (US). In this paper, we explore these themes while expanding the concept of "abortion exceptionalism" beyond its original legal meaning to address the impact of abortion stigma. Methods: Twenty abortion providers from independent abortion clinics throughout the US South and Midwest participated in semi‐structured interviews in June and July 2020. Interviews explored the challenges of providing abortion care in the wake of the COVID‐19 pandemic and sought to identify how clinics strategized and amended their clinical practices to continue providing abortion care during this time. Results: All providers we spoke to noted significant challenges to providing abortion care in the early days of COVID‐19. In addition to experiencing the same concerns as other health care institutions, abortion clinics also faced additional, unique burdens that can only be attributed to the politics of abortion exceptionalism. Examples of this abortion exceptionalism include abrupt orders to close clinics, the need to rely on traveling physicians, legislature‐imposed limits on telemedicine, heightened activities of protesters, and non‐evidence‐based regulation of medication abortion. Conclusion: Despite major challenges and differential treatment, independent abortion clinics in the US persevered to continue to provide abortion care throughout the COVID‐19 pandemic. [ABSTRACT FROM AUTHOR]

Context: Transitions of patient care responsibility occur frequently between physicians. Resultant discontinuities make it difficult for physicians to observe clinical outcomes. Little is known about what physicians do to overcome the practical challenges to learning these discontinuities create. This study explored physicians’ activities in practice as they sought follow‐up information about patients. Methods: Using a constructivist grounded theory approach, semi‐structured interviews with 18 internal medicine hospitalist and resident physicians at a single tertiary care academic medical center explored participants’ strategies when deliberately conducting follow‐up after they transitioned responsibility for patients to other physicians. Following open coding, the authors used activity theory (AT) to explore interactions among the social, cultural and material influences related to follow‐up. Results: The authors identified three themes related to follow‐up: (i) keeping lists to track patients, (ii) learning to create tracking systems and (iii) conducting follow‐up. Analysis of participants' follow‐up processes as an activity system highlighted key tensions in the system and participants’ work adaptations. Tension within functionality of electronic health records for keeping lists (tools) to find information about patients’ outcomes (object) resulted in using paper lists as workarounds. Tension between paper lists (tools) and protecting patients’ health information (rules) led to rule‐breaking or abandoning activities of locating information. Finding time to conduct desired follow‐up produced tension between this and other activity systems. Conclusion: In clinical environments characterised by discontinuity, lists of patients served as tools for guiding patient care follow‐up. The authors offer four recommendations to address the tensions identified through AT: (i) optimise electronic health record tracking systems to eliminate the need for paper lists; (ii) support physicians’ skill development in developing and maintaining tracking systems for follow‐up; (iii) dedicate time in physicians’ work schedules for conducting follow‐up; and (iv) engage physicians and patients in determining guidelines for longitudinal tracking that optimise physicians’ learning and respect patients’ privacy. [ABSTRACT FROM AUTHOR]

Background: Trans‐identifying individuals experience unique barriers and challenges in negotiating health‐care systems due to the cisnormative attitudes and practices which obstruct the receipt of trans‐inclusive care. To date, there has been little exploration of older trans consumers' experiences of contemporary health‐care services when seeking to transition medically in later life. Objectives: Qualitative findings are presented from a study of trans ageing and trans‐related health and social care needs in Wales, UK (2016‐18). The objectives are to (1) examine supportive and obstructive points of interaction with health‐care professionals, and (2) identify key learning messages for improving trans‐related health care from the perspectives of trans‐identifying adults in later life. Design: Trans‐identifying participants self‐selected to take part in two interviews—a life‐history interview and a semi‐structured interview. Interview data were analysed thematically using the framework method approach. Setting and participants: This paper focuses on the accounts of 19 participants (50‐74 years of age) who identified as trans and were seeking to transition medically in mid‐ to later life. Results: Findings indicate how older trans patients are positioned as reluctant educators for GPs in primary care settings and illustrate the transphobic practices and cisnormative assumptions encountered across health‐care interactions and systems that impede their journey of transitioning in later life. Discussion and conclusions: Messages from this study speak to the importance of improving professionals' knowledge of gender identity diversity across the life course and making changes at a systemic level in redressing cisnormative assumptions and systems that reinforce inequities on the basis of gender identity. [ABSTRACT FROM AUTHOR]

Background: Opioids are one of the most prescribed treatments for chronic pain (CP). However, their long‐term use (>3 months) has been surrounded by controversy, due to loss of beneficial effects. Objective: To explore the experiences of people with chronic non‐malignant low back pain in Spain undergoing long‐term treatment with opioids. Design: Qualitative study. Setting and participants: We conducted 15 semi‐structured interviews at the Pain Clinic with persons taking opioid treatment. Methods: The interviews were analysed by qualitative content analysis as described by Graneheim and Lundman, and developed categories and themes discussed in light of a biomedicalization framework. Main results: We developed one overarching theme—Living with opioids: dependence and autonomy while seeking relief—and three categories: The long pathway to opioids due to the invisibility of pain; Opioids: from blind date to a long‐term relationship; and What opioids cannot fix. Discussion: The long and difficult road to find effective treatments was a fundamental part of coping with pain, involving long‐term relationships with the health system. This study reflects the benefits, and drawbacks of opioids, along with struggles to maintain autonomy and make decisions while undergoing long‐term treatment with opioids. The paper also highlights the consequences of pain in the economy, family and social life of patients. Conclusions: Patients' experiences should be considered to a greater extent by health‐care professionals when giving information about opioids and setting treatment goals. Greater consideration of the social determinants of health that affect CP experiences might lead to more effective solutions to CP. [ABSTRACT FROM AUTHOR]

Introduction: Employment of occupational therapists in generic roles in public mental health services (PMHSs) constrains capacity to undertake discipline‐specific activity meaning consumers may be unable to access valuable occupational therapy assessments and interventions that could promote recovery. Establishing a dedicated occupational therapy clinic has been identified as one way of improving care provided and outcomes for organisations, therapists, and consumers. To inform such developments, this paper reports evaluation of feasibility, acceptability, and sustainability of a pilot clinic established within a PMHS. Methods: An observational evaluation was used combining quantitative and qualitative data collected from service documents, clinic records, and in semi‐structured interviews with 42 stakeholders. Quantitative data were used to describe referrals and flow through the clinic. Framework analysis of qualitative data examined the process and outcomes of referrals and enabled understanding of acceptability, perceived impact and areas for improvement. Results: Substantial ground work, particularly stakeholder engagement, and redistribution of resources enabled establishment and successful operation of an assessment clinic for 12 months. Assessments were completed for 68% of the 100 accepted referrals, with the remainder in process or unable to be completed. Stakeholders agreed that the clinic enabled clinicians' timely access to specialist assessment, improving care for consumers. Occupational therapists valued the opportunity to deploy and develop discipline‐specific skills and when there was some impact on work flow of occupational therapists' 'home teams', team managers judged the investment worthwhile. Strong leadership by the discipline lead and support from team managers who enabled allocation of occupational therapists to the clinic were critical to success. Conclusion: An occupational therapy assessment clinic can be established and operate successfully within a public mental health setting. Redistribution of resources supported increased efficiency and consumer access to specialist interventions that support their recovery. [ABSTRACT FROM AUTHOR]

Research has demonstrated the benefits of mental healthcare interventions that ensure a safe transition of clients throughout the discharge and community integration process. This paper reports on qualitative data from focus groups with health professionals collected as part of a larger a mixed method study designed to examine the effectiveness and sustainability of implementing the transitional discharge model. Data collection involved two sets of focus groups, which were held at six months and one‐year post‐implementation. There were 216 health professional participants from nine (9) hospitals across the Province of Ontario, Canada. Data analysis used a four‐step ethnographic framework by Leininger (1985) to identify descriptors and recurrent and major themes. The study identified four major themes, including healthcare professionals' roles and positive experiences in implementing the transitional discharge model; perceived benefits of the model; challenges to implementing the model; and suggestions for sustaining the model's implementation. Healthcare professionals felt that the implementation of the transitional discharge model has the potential for increasing their awareness of the process of clients' integration, serving as a framework for discharge planning, and reducing hospital readmissions. The study findings may provide healthcare providers with information on pragmatic ways to plan clients' discharge, to bridge the gap between hospital and community care, and to positively impact client health outcomes. [ABSTRACT FROM AUTHOR]

This paper draws on the work of Giorgio Agamben to understand how the social organisation of care transitions can reduce people to their 'bare' life thereby making harmful and degrading treatment seemingly legitimate. The findings of a 2‐year ethnographic study show how some people experience hospital discharge as undignified, inhumane and unsafe process, expressed through their lack of involvement in care planning, delayed discharge from hospital and poorly coordinated care. Our analysis explores how these experiences stem from the way patients are constituted as 'unknown' and 'ineligible' subjects and, in turn, how professionals become 'not responsible' for their care. The result being that the person is reduced to their 'bare' life with limited value within the care system. We suggest that the social production of 'bare life' is an inadvertent consequence of reconciling and aligning multiple disciplines within a complex care system. [ABSTRACT FROM AUTHOR]

Moving away from paternalism to more equal forms of interaction in the patient–doctor relationship has been seen in positive light by policymakers, patients' rights advocates and scholars alike. Nonetheless, against the background of commercialisation and consumerism, empirical research showcases how reduced asymmetries bring in tensions and friction between patients and doctors (Greenfield et al. 2012). This paper contributes to the discussion through the examination of the patient–doctor relationship in the niche setting of private transnational healthcare markets which involve patients travelling overseas for care and where commodification, consumerism and care go hand‐in‐hand. It is geographically focused on two large cities in South‐Eastern Europe as settings where health care is provided to foreign patients – Athens and Istanbul – and empirically draws on qualitative interviews with doctors who run small/medium practices. The findings highlight that, despite excessive consumerism, power asymmetries are not mitigated but patient vulnerability shapes the patient–doctor relationship. In the transnational context, the patient faces an additional source of vulnerability: a condition of foreignness. As such, the findings stress that one relationship model (the consumerist) does not, per se, replace an older one (e.g. the Parsonian). Instead, the consumer–provider dimension co‐exists with the client–expert, patient–doctor and, finally, host–guest relation. [ABSTRACT FROM AUTHOR]

This paper is based on Rachel Butler's dissertation carried out at the University of Sheffield as part of the MA Library and Information Services Management. The study examines people's online health information seeking skills, with the specific aim to identify how libraries and health services can work together in supporting digital and health literacy. A survey approach is used to explore online searching habits as well as librarian and health professionals' views on health literacy. The key findings indicate that whilst the majority of respondents consider themselves to be health literate, there was an overall agreement that effective education and support could be achieved through the collaboration between libraries and health services, and specifically to signpost information and to provide targeted education. The limitations of the research for dissertation are recognised leading to recommendations that further study focuses on the impact of signposting and education on health literacy.F.J. [ABSTRACT FROM AUTHOR]

Reducing and eliminating the use of restrictive practices, such as seclusion and restraint, is a national priority for Australia's mental health services. Whilst legislation, organization and practice changes have all contributed to a reduction in these practices, forensic mental health services continue to report high rates. This paper details the findings of research that examined the experiences of nurses working in the inpatient forensic mental health setting. The research aimed to (i) document the experiences of nurses working in the forensic mental health setting, (ii) articulate their perceived unique skill set to manage challenging patient behaviours, and (iii) determine how their experiences and skill set can inform practice changes to reduce the use of restrictive practices. Thirty‐two nurses were recruited from one Australian forensic mental health service. Data were collected using semi‐structured interviews and analysed using inductive content analysis. Four categories were identified that influenced practice experiences: (i) working in a challenging but interesting environment, (ii) specialty expertize, (iii) exposure to aggression and resilience as a protective factor, and (iv) the importance of effective teamwork and leadership. Forensic mental health care is complex, highly specialized, and often delivered in an unpredictable environment. Whilst high rates of restrictive practices may be linked to the unique characteristics of forensic patients, training, teamwork, and leadership are critical factors influencing their use in this setting. Nurses working in this area need to be educated and supported to work confidently and safely with this high‐risk patient cohort. [ABSTRACT FROM AUTHOR]

Background: Childhood long‐term conditions are usually diagnosed in infancy or early childhood. Little is known about the particular experiences and needs of young people who receive a chronic illness diagnosis during adolescence or late childhood. This paper will examine this experience in relation to multiple sclerosis (MS), which is increasingly being diagnosed before adulthood. Aims: To explore how young people experience an MS diagnosis. Methods: Qualitative study using a grounded theory approach. In‐depth interviews were conducted with 21 young people diagnosed with MS. Participants were recruited through health service and voluntary sector organizations in the United Kingdom. Results: Young people's pre‐illness normality was disrupted by the diagnosis of a chronic illness (MS). Participants experienced their body as changed physically, cognitively, and emotionally and as changeable due to symptom unpredictability. This influenced how participants perceived and presented their identity, disrupted their relationships, and altered their future biography. Young people developed strategies to manage their condition and identities in order to incorporate MS into their current and future lives, which required continual illness and identity work in response to changing symptoms, social contexts, and relationships. Conclusions: Although young peoples' experience of living with chronic illness has been widely explored, the aftermath of diagnosis has been underresearched from their perspective. This study contributes to this knowledge gap by illuminating how young people experience a chronic illness diagnosis and negotiate the resulting changes to their identity, relationships, and future. The findings suggest that young people need preparation and support in disclosing their diagnosis to others. Professionals supporting young people with long‐term conditions need to work closely with specialist mental health services to ensure that they receive appropriate emotional support. Schools have an important role in ensuring young people with long‐term conditions achieve their academic potential and receive appropriate careers advice. [ABSTRACT FROM AUTHOR]