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Background: Despite increasing support for stakeholder inclusion in research, there is limited evaluative research to guide safe (i.e., youth‐friendly) and meaningful (i.e., non‐tokenistic) partnerships with young people with lived experience of mental ill‐health in research. This paper describes a pilot evaluation and iterative design of a Youth Lived Experience Working Group (LEWG) protocol that was established by the Youth Mental Health and Technology team at The University of Sydney's Brain and Mind Centre, based on the results of two studies. Methods: Study one consisted of a pilot evaluation of the extent to which youth partners felt empowered to contribute, to qualitatively explore how LEWG processes could be improved. Youth partners completed online surveys, and results were shared over two LEWG meetings in 2021 to empower youth partners to collectively identify actions of positive change regarding LEWG processes. These meetings were audio‐recorded and transcripts were subsequently coded using thematic analysis. Study two assessed whether LEWG processes and proposed improvements were acceptable and feasible from the perspective of academic researchers via an online survey in 2022. Results: Quantitative and qualitative data collected from nine youth partners and 42 academic researchers uncovered initial learnings regarding facilitators, motivators, and barriers to partnering with young people with lived experience in research. Implementing clear processes for youth partners and academic researchers on effective partnership strategies, providing training opportunities for youth partners to develop research skills, and providing regular updates on how youth partner contributions led to research outcomes were identified as key facilitators. Conclusions: This pilot study provides insight into a growing international field on how to optimise participatory processes so that researchers and young people with lived experience can be better supported and engaged to make meaningful contributions to mental health research. We argue that more transparency is needed around participatory research processes so that partnerships with young people with lived experience are not merely tokenistic. Consumer Contributions: Our study has also been approved by and reflects the concepts and priorities of our youth lived experience partners and lived experience researchers, all of whom are authors of this paper. [ABSTRACT FROM AUTHOR]

Background: Historically, researchers have been apt at conducting research on, rather than with, the people who are the focus of their efforts. Such approaches often fail to effectively support and benefit the populations they are intended to. This study aimed to explore the preferences of people with lived experience for engagement with research either as research participants within studies, or through active involvement in mental health research. Methods: Data for this paper were collected in three separate lived experience agenda‐setting studies conducted over a 9‐year period from 2013 to 2022; two group discussions and an open‐ended online survey. Data were combined and thematic analysis undertaken. Results: Participants described the inclusion of lived experience as a critical ingredient and the highest level of knowledge and expertise in mental health research that should lead to knowledge generation and research agendas. Participants discussed the importance and value of research that enables sharing experiences and stories, expressed a need for flexibility in research methods for choice and agency, and support for greater active involvement of people with lived experience across all stages of research. Participants also spoke to the need for perspective and knowledge generated from people with lived experience to have equal power in research, making space for lived experience voices across multiple aspects of research, and greater respect and recognition of the value of lived experience. Conclusion: Lived experience in mental health research is coming of age, but dedicated, cocreated development is needed to get it right. People with lived experience increasingly understand the value their experiential knowledge brings to the mental health research effort, and describe a wide range of ways that researchers can support them to be research participants, and to get actively involved. Power‐sharing, respect and recognition of lived experience as central to effective mental health research are the keys to 'keeping it real'. Patient or Public Contribution: People with lived experience of mental health problems or distress either personally, and/or as carers, family and kinship group members, were involved in the coideation and codesign of this research. All authors identify as people with lived experience. [ABSTRACT FROM AUTHOR]

Digital mental health technologies and services are here. More are coming. Such technologies and services present both risks and opportunities. At their best, they may enhance the most humane, communal and caring parts of our social systems and communities. At their worst, they may reinforce reductionist approaches to distress and crisis, increase surveillance and control, as well as extracting data and wealth from people seeking care. In this paper, we argue that lived experience‐led governance and collaborative development of these technologies and services will enhance the best opportunities and mitigate against the biggest risks. This paper provides a commentary emerging from work by authors with lived experience, and those without, that explored accountability in digital mental health technologies and services. The commentary offers guidance to anyone interested in supporting lived experience‐led, and collaborative governance of, digital mental health technologies. This guidance, drawing on interdisciplinary and lived experience‐led research and grey literature, assists readers in understanding why collaboration should take place, when, where and with whom, on what issues this could start, and how collaborators should approach this. [ABSTRACT FROM AUTHOR]

This paper aims to discern, clarify, criticise, and advocate some uses of phenomenology in sociological research. Phenomenology is increasingly evoked or implicitly employed in sociological endeavours. Little attention, however, is paid to what is entailed in taking a phenomenological approach, and whether it is employed to advance empirical or theoretical knowledge. I build an analytic typology of different empirical and theoretical uses of phenomenology, criticise a range of these uses, and argue that other uses bear significant potential for the advancement of theoretical and empirical knowledge. The paper's main contribution lies in comparing and contrasting the many invocations of phenomenology in contemporary social scientific research to discern their benefits and shortcomings. [ABSTRACT FROM AUTHOR]

Engaging people with lived experience of mental health system encounters in the design and actualization of continuing professional development initiatives for mental health professionals can have transformative systemic impacts. Yet, despite evidence that involving people with lived experience benefits mental health professional education, far less focus has been placed on how to engage people with lived experience in continuing professional development initiatives. Tensions persist regarding the role of lived experience perspectives in continuing professional development, as well as how to establish people with lived experience as partners, educators and leaders in a thoughtful way. We propose that meaningful and equitable partnerships with people with lived experience can be realized by engaging in critical reflexivity and by systematically challenging assumptions. This paper explores three topics: (1) the current state of engagement with people with lived experience in continuing professional development initiatives; (2) barriers to meaningful engagement and (3) recommendations for using critical reflexivity to support the involvement and leadership of people with lived experience in continuing professional development for mental health professionals. Patient or Public Involvement: This viewpoint manuscript was co‐designed and co‐written by people with diverse lived and learned experiences. Each author's professional roles involve meaningfully and equitably partnering with and centring the perspectives of those with lived experience of mental health system encounters. In addition, approximately half of the authorship team identifies as having lived experience of accessing the psychiatric system and/or supporting family members who are navigating challenges related to mental health. These lived and learned experiences informed the conception and writing of this article. [ABSTRACT FROM AUTHOR]

Inclusion of service users in the design and delivery of mental health services is clearly articulated throughout Australian mental health action plans and stated as an expectation within contemporary mental health policy. International and local Australian research demonstrates benefits for the inclusion of lived experience workers in service users' recovery journey; however, persistent challenges and barriers limit their effective integration into transdisciplinary mental health service teams. Non‐lived experience workers who actively advocate and champion the inclusion of lived experience or peer workers, known as allies, are acknowledged and recognised as enablers for effective integration of peer workers to service teams. In this discursive paper, authors present recommendations for further development of allyship roles within leadership positions of mental health organisations in Australia. Leaders are in a position to influence the allocation of resources, redress power inequalities and facilitate opportunities for the inclusion of lived experience expertise across all levels of mental health organisations. This paper makes recommendations for areas of learning and unlearning ingrained bias and assumptions which may be detrimental to integration of lived experience workforces and hinder movement toward greater adoption of recovery‐orientated service delivery. [ABSTRACT FROM AUTHOR]

Background: Negative attitudes remain a major barrier to the equality of people with disability, especially when coupled with the lack of autonomy imposed on many people. This paper analyses how disability self‐advocacy groups seek to change community attitudes and work towards systemic change by mobilising knowledge from their lived experience. Methods: The paper applies a cycle of praxis community development approach (a cycle of experience, learning and reflection, synthesis and planning, and implementation and review) to conceptualise and analyse their activities. The methods were a desktop document search, focus groups and reflective analysis with members of two self‐advocacy groups. Findings: A synthesised data analysis found that applying the four‐part community development framework was useful to understand the practice and the purpose of work by self‐advocacy groups to change attitudes. The analysis also demonstrates the benefits for advocates and codesigned activities to intentionally apply the cycle of praxis model to guide their future efforts to change attitudes. Conclusions: The research provides evidence that self‐advocacy groups achieve sustained impacts on attitudes in the community, beyond the direct benefit to their members. Government investment in self‐advocacy has potential to leverage wider system change in attitudes to achieve policy goals for the rights of people with disability. Methodologically, the research also has implications for the benefit of inclusive roles in reflective analysis to understand the lived experience of how practices contribute to system change. The design is an opportunity for inclusive researchers to intentionally incorporate reflective analysis into research processes. Accessible summary: Bad attitudes towards people with disability are a hard problem to fix.People with disability are more involved in changing community attitudes than they used to be.This paper talks about how the work of self‐advocacy groups changes attitudes.By working with self‐advocates, we learned that they used their own experiences in an organised way to change community attitudes.It would be good to share this success more widely. [ABSTRACT FROM AUTHOR]

Plastic is a persistent problem in westernised cities. Yet it is also a key mediator, affording and assisting the everyday. In small apartments, it supports daily life by assisting with waste management, storage, and provisioning of affordable ornaments and furniture. Plastic, in this context, is a mundane and utilitarian substrate to apartment life, as well as being a problematic potential pollutant. Recognising the diverse contributions to research on high‐density living, this paper draws on vertical urbanism and relational ideas of home. It explores the socio‐material entanglements of plastic in apartments through household interviews across Melbourne, London, Barcelona, and Perth. The research reveals ways in which plastic mediates the material inequalities of high‐rise living, typified by entanglements of space constraint, transience, and waste management. The contribution is twofold. Theoretically, our work suggests a direction for socio‐materialities research in reframing ideas of home as a static, physical site, to one that is more contingent materially and spatially. As various households adapt and make do, their refuges in the sky are being reconfigured physically and symbolically by and through plastic. Relational approaches can help to reveal the mundane but critical entanglements of plastic and everyday life in apartments. Second, empirically, we show that mundane infrastructures matter; they shape the spaces and places of plastic and apartment inequalities. Thus, policy interventions that target household behaviours can only have a marginal impact on plastic consumption where uneven infrastructures remain. Moreover, they may direct attention away from where change might be more promising, such as wider social rules and meanings around plastic, and the materialities of building design/management for waste infrastructures both inside and outside the apartment. As a problem material, the elimination of plastic waste globally presents a particular challenge to ordinary and lower income apartment households that "make do" with the use of plastic. From a large empirical study, this paper analyses households' own accounts, revealing the socio‐material entanglements of plastic with waste, space, and time management. The authors point to the importance of spatial dimensions of domestic practices and the ways in which transience entangles with practice, influencing the meanings and logics of home. [ABSTRACT FROM AUTHOR]

In this paper, a phenomenological hermeneutical method for interpreting narrative texts is proposed. Interviewees are asked to tell from their lived experience of participating in life world phenomena. The interview texts are written down and analysed, inspired by the theory of interpretation of Paul Ricoeur, in three steps: a first, naïve reading, structural analysis and comprehensive understanding. The method was presented the first time in 2004. In this paper, the theory behind it is elaborated. Basic concepts like phenomenon, meaning, life world, lived experience and concrete reflection are clarified, and the historical background of the method and its ontology, epistemology and methodology are explained. [ABSTRACT FROM AUTHOR]

Literature regarding trans and gender diverse (TGD) prisoners’ experiences of prison custody is limited. Reviewing international literature enables a better understanding of these experiences and how effectively TGD policies are implemented. This systematic review employed PRISMA and ENTREQ guidelines to enhance transparency in reporting the synthesis of qualitative and mixed‐methods research. Seventeen papers were included and through meta‐ethnographic synthesis three overarching themes emerged: structural, interpersonal and intrapersonal. Recommendations include reducing reliance on survival strategies by TGD prisoners through implementation of policies which meet TGD prisoners’ needs and to enabling better informed decision making regarding housing. Further research into lived experiences would allow for a better understanding of what currently works, how services could be improved, and identify potential training needs. [ABSTRACT FROM AUTHOR]

Background: Documented inequalities in access to eye care for people with learning disabilities and/or autism are caused by poor uptake of primary eye care services, poor identification of eye problems, lack of signposting and reasonable adjustments of existing services, concerns about costs of care and the low priority historically given to these issues in eye care policy at a regional and national level. In 2019, the charity SeeAbility employed four eye care champions (ECCs) with lived experience of learning disability and/or autism to work in local communities in London and the Northwest of England. They provided peer‐to‐peer support on understanding the need for good eye health and engaged with policy makers, and learning disability, autism and eye care professionals at the local, regional and national levels to influence both the clinical practice of individual practitioners (within existing service/pathway models) and more widely to influence the commissioning of the Easy Eye Care pathway. This study explores the experiences of these ECCs. Methods: The study was conducted in April and May 2023. A case study approach was used to describe the experiences of the ECCs from March 2019 to March 2023. Data from structured interviews with the four ECCs and workload analysis were triangulated to provide a multifaceted understanding of this novel health promotion project. Findings: The ECCs found the role useful and reported that confidence in their practice and impact grew with time but they required ongoing support in the role. A good understanding of the promotional messages was reported. Developing a good network of contacts at an early stage, both people with learning disabilities and healthcare professionals, was key. Relationships with professionals were supportive and positive and a positive emotive response to their lived experience was reported in these interactions. Conclusions: From the perspective of the ECCs, the role is useful and beneficial. The work suggests some key recommendations for future development which include planning to build networks, support in presentation and communications skills and defining key messages and knowledge. Confidence of the ECCs builds with time in the role but also needs support the emotive impact of their lived experiences on audiences is highlighted. There is a need to evaluate how the programme is perceived by those who interact with it and how it changes behaviours which leads to better health outcomes. Accessible Summaries: People with learning disabilities are 10 times more likely than other people to have a problem with their eyes but less likely to get the eye care they need.This paper explains how people with a learning disability and/or autism are employed to tell other people with learning disabilities and/or autism, their supporters, health and care professionals and people who plan services about how important it is to get regular eye care. This job is an 'Eye Care Champion'.We share what the eye care champions did in their role, what worked well and what did not.We discuss how what we have learnt can help other people with learning disabilities and/or autism work as eye care champions and perhaps as champions for other areas of healthcare. [ABSTRACT FROM AUTHOR]

Ataxia‐telangiectasia (A‐T) is a rare, childhood‐onset, multi‐systemic, progressive condition. Parents of children with rare diseases like A‐T are emotionally, socially, and psychologically impacted by the diagnosis. To examine the parental perspective of having a child with A‐T, and to better understand how parents cope with an A‐T diagnosis, we conducted 10 semistructured interviews. Thematic analysis using a phenomenological approach resulted in five themes: (1) Parental responsibilities change as the result of an A‐T diagnosis, (2) An A‐T diagnosis brings about shifts in identity for all family members, (3) Parental coping changes over time, (4) A‐T parents experience continuous uncertainty and a lack of stability, and (5) A‐T parents receive support from various people, places, and resources. Many parents fostered resilience by adopting a present‐centered and positive mindset about the impacts of the diagnosis. Parents also became A‐T experts and used their knowledge to advocate for their children and help mentor other parents. Responses from parents indicated a need for providers to incorporate parental mental well‐being check‐ins to pediatric rare disease appointments and welcome parents as respected members of their children's care team. Genetic counselors are in a unique position to help coordinate complex care for children with A‐T (and other rare diseases) and provide support to family members using the framework of family‐centered care. This paper offers suggestions for expanding support and learning to cope with a difficult diagnosis for parents of children with rare diseases, specifically A‐T, based on stories from parents of children with A‐T. [ABSTRACT FROM AUTHOR]

Aim: The aim of this study was to explore the experiences of frontline nurses caring for patients during the first 6 months of the COVID‐19 pandemic. Design: The JBI manual for evidence synthesis and the PRISMA guidelines for reporting. Data sources CINAHL Complete, MEDLINE, PsycINFO (EBSCO) and Scopus (Elsevier). Review Methods: The JBI Mixed Methods Data Extraction Tool following a Convergent Integrated Approach. Results: Nineteen studies were included in the review, comprising eight countries and 2525 frontline nurses. Six themes emerged encompassing frontline nurses' COVID‐19 experiences including emotional experiences, physical symptoms, ethical and moral challenges, professional impact, risk factors for negative emotional experiences and protective factors for future pandemic events. Conclusion: Frontline nurses have faced numerous challenges during the COVID‐19 pandemic. Providing frontline nurses with the required resources and support to perform their roles in global healthcare crises allows for an empowered and resilient workforce ensuring nurses remain in their chosen profession. [ABSTRACT FROM AUTHOR]

Copyright of International Journal of Eating Disorders is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Anthropologists developed the lifeways construct to understand how communities make a way of life on certain landscapes. In this paper, we pair the lifeways construct with that of "lived experiences" to include processes of change in lifeways. Using a case study of farmers in Idaho's Eastern Snake Plain Aquifer region, we explore farmers' efforts to adapt to changes in agricultural water policy. Based on interviews with farmers, we identify several components of farmers' lifeways, including place‐based identity, stewardship, trust in decision‐makers, and financial well‐being. Our findings suggest that the relationships between farmers and their landscapes are shifting as a result of water governance changes. When combined with dynamic global economic factors, ever‐shifting regulatory and governance priorities and social‐ecological changes are likely to continue producing new and interacting challenges to which farmers—and their lifeways—will need to adapt to survive. [ABSTRACT FROM AUTHOR]

The term 'resilience' has become a fashionable buzzword infiltrating mental health services globally. This latest ad nauseam has become both an irritation and insult to service users and mental health professionals alike. We argue resilience is a flawed Western theory of suffering aligned with neoliberal ideology. It is a double‐edged sword indiscriminately yielded at both service users and staff. This paper examines the origins and evolution of resilience, and how mental health services have morphed resilience into a meaningless slogan, causing iatrogenic harm. We call for mental health professionals to consider their use of language and the intended or unintentional meaning behind their choice of words. [ABSTRACT FROM AUTHOR]

Background: People with learning disabilities are often left behind and ostracised in life, education, employment and in research. This article describes the importance and value that people with learning disabilities can bring when participating in co‐production and lived experience research. The article reports on the inequalities and barriers that people living with learning disabilities have in accessing health and social care services and hospitals and makes recommendations for improving services and people's experiences of services. The intertwining of subject (inequalities and barriers of access) and process (lived experience research and co‐production) leads to more comprehensive knowledge and understanding of learning disabilities. Methods: Co‐production events were held with people with learning disabilities, facilitated by the co‐author (Tom Kerridge). Tom and a service user researcher (Ben Gray) with Asperger's syndrome and schizophrenia thematised transcripts and made recommendations, in Ben's case with the insight of lived experience of learning disabilities and mental health problems. Findings: A series of recommendations are made based on the insight of a lived experience perspective. For example: to have a grass roots learning disabilities champion, lived experience peer mentors and supporters, training via a film made by people with learning disabilities, the involvement of Learning Disabilities Research Ambassadors to conduct phase two of the research as well as other recommendations. Conclusions: Lived experience research and co‐production are at the heart and centre of contemporary research in health and social care. Participation can change feelings of exclusion and stigma into feelings of being valued, accepted and being able to make a difference. Accessible summary: People with learning disabilities and mental health problems (like Ben), can feel left behind, like they do not fit in, do not belong and that their chances in life are limited.People can feel that they do not matter, have no voice or say, and that they are forgotten. People with learning disabilities, in Ben's own personal experience, can feel not listened to, looked down on and can face bullying.This paper is about the value that people living with learning disabilities can bring to research and help make health and social care services better. [ABSTRACT FROM AUTHOR]

Emerging adulthood, a distinct developmental period between ages 18 and 29 years, comprises five features: identity exploration, experimentation/possibilities, negativity/instability regarding one's outlook, self‐focus, and feeling in‐between adolescence and adulthood. A growing literature examines the impact of genetic conditions on individuals who chronologically fit the emerging adulthood period. This systematized literature review uses the emerging adulthood theory to determine whether individuals living with or at‐risk for a genetic condition experience the features of this period as well as similarities and differences between these two groups. A literature search yielded 1,303 peer‐reviewed papers from the 17 years since emerging adulthood theory was published. Ten papers met inclusion criteria—five for those Living With a genetic condition (e.g., cystic fibrosis) and five for those At‐Risk for a genetic condition (e.g., hereditary breast and ovarian cancer). Content analysis yielded themes consistent with the five emerging adulthood features for both individuals Living With and At‐Risk for genetic conditions. Negativity/instability was most prevalent, and feeling in‐between was least prevalent in both groups. Results further suggest unique challenges related to one's genetic conditions/risk with respect to independence (from family, healthcare providers), career/education, relationships/social life, family planning, and life perspective experiences. Salient differences were apparent between the groups in their experiences of the emerging adulthood features. For instance, Living With individuals reported challenges concerning their ongoing physical symptoms, whereas At‐Risk individuals reported challenges regarding genetic testing decisions and anticipation of physical symptoms. Thus, emerging adults Living With and At‐Risk for genetic conditions appear to experience the main emerging adulthood features, but they face unique challenges related to their genetic conditions/risk. Understanding emerging adults' experiences can aid genetic counselors in addressing their specific concerns. [ABSTRACT FROM AUTHOR]

Background: Multiple sclerosis (MS) is a chronic serious condition of uncertain course and outcome. There is relatively little literature on the experiences of people who live with a person with MS. They inhabit a locus of care that spans caring for (a relational act) and caring about (a moral stance, addressing fairness, compassion and justice) the person with MS. Methods: Using the theoretical lens of personhood, we undertook a scoping review and meta‐synthesis of the qualitative literature on the experiences of people who live with a person with MS, focusing on the nature of, and constraints upon, caring. Results: Of 330 articles, 49 were included in the review. We identified five themes. One of these—seeking information and support—reflects the political economy of care. Two are concerned with the moral domain of care: caring as labour and living with uncertainty. The final two themes—changing identities and adapting to life with a person with MS—point to the negotiation and reconstitution of personhood for both the person with MS and the people they live with. Conclusion: People with MS are embedded in relational social networks of partners, family and friends, which are fundamental in the support of their personhood; the people who live with them are 'co‐constituents of the patient's identity' assisting them to make sense of their world and self in times of disruption due to illness. Support services and health care professionals caring for people with MS are currently very much patient‐centred; young people in particular report that their roles are elided in the health system's interaction with a parent with MS. There is a need to look beyond the person with MS and recognize the relational network of people who surround them and broaden their focus to encompass this network. Patient and Public Involvement: Our research team includes four members with MS and two members with lived experience of living or working with people with MS. A third person (not a team member) who lives with a partner with MS provided feedback on the paper. [ABSTRACT FROM AUTHOR]

In a context of increasing welfare conditionality, governmental responses to homelessness in Australia continue to be influenced by neoliberal discourses of personal responsibility. This is reflected in their emphasis on individualised interventions and lack of attention to structural drivers of homelessness. Research examining these issues has primarily focused on policies and practices aiming to responsibilise individuals' conduct, and less so on how those with lived experiences view and apportion responsibility for homelessness. In recognition of this gap, this paper reports findings from a qualitative study examining the views of responsibility expressed by nine individuals with lived experiences of homelessness. Findings demonstrate that participants recognised their own responsibilities, yet also highlighted significant constraints on individual agency associated with being homeless and emphasised unmet responsibilities of governments. Our analysis demonstrates how participants' views contrast with neoliberal discourses of personal responsibility, and problematise notions of "fair reciprocity" on which they are premised. We argue their views can be interpreted as supporting alternative notions of shared responsibility for homelessness. These findings have implications for policy and practice and highlight the need to further engage with lived experience perspectives to advance more effective and socially just responses to homelessness in Australia. [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]

Introduction: Substance use is a public health issue with a greater burden in rural areas. Barriers to accessing services are exacerbated for rural substance users, with confidentiality concerns, longer travel distances, workforce issues and limited availability of services. This paper presents results from a study exploring substance users' experiences of accessing services in Western Australia's South West. Methods: This qualitative study was informed by phenomenology, and drew from social determinants and socio‐ecological theories. Data were collected through 22 semi‐structured telephone interviews with current and past substance users residing in the South West. Interviews were audio‐recorded and transcripts were subjected to thematic analysis. Results: Two themes were identified: readiness to engage as a three‐way street; and building an ecosystem of recovery networks. Effective engagement with services required multi‐level readiness. Individual readiness was strongly influenced by the social environment, while service readiness required trustworthiness and responsiveness. A number of local access barriers were identified that hindered broader system readiness. Participants experienced recovery as on‐going and require an ecosystem of support with peer support at the centre and a network of healthy relationships established through meaningful connections. Discussion and Conclusions: An effective ecosystem of support for alcohol and other drugs users in the South West should include expanded access to health, community and welfare services, with an emphasis on peer‐led support programs, and strong cross‐sector collaboration to mitigate the access barriers operating at the broader community level. Lessons from our study can inform the development of rural ecosystems of support for alcohol and other drugs users. [ABSTRACT FROM AUTHOR]

This paper explores the experience of ten individuals living in the UK who were in the pre‐manifest stage of Huntington's disease (HD), a genetic neurodegenerative condition. Data were gathered using semi‐structured interviews and analyzed using interpretative phenomenological analysis. Three themes were reported from the data: 'feeling limited by time', 'the perception of stalling time', and 'making the most of time', all highlighting the way in which time holds significant meaning when living in the pre‐manifest stage of HD. This study has highlighted the difficulties experienced by individuals when adjusting to the pre‐manifest stage of HD. Feeling able to manage their anxieties and dealing with ongoing uncertainty related to future deterioration was key to supporting their wellbeing, facilitated by factors such as positivity and hope. Individuals may benefit from counseling which supports them to develop proactive coping strategies to manage their anxieties and acceptance of an uncertain future. [ABSTRACT FROM AUTHOR]

Metaphors appear simple but are fundamental schemata allowing expression and processing of complex emotions and information. They are so embedded in language and thinking that we are often unaware of their impact, despite the crucial role of metaphors in communication, learning and creating meaning from experiences. A deeper understanding of how to recognize and work with client‐generated and counselor‐generated metaphors has great potential as an addition to the genetic counseling 'tool‐box'. Here, we draw on studies from related health and psychotherapy fields to discuss how working purposefully with metaphors may offer a powerful way to enhance communication within a reciprocally engaged client–counselor relationship. Metaphors present ways to explain complex genetic concepts in a personally meaningful form, to gain a deeper understanding of client's experiences and emotions, to assist processing of experiences, emotions, and concepts, and to assist client and counselor to access and reflect on subconscious emotions, self‐concept, and motivations. In addition, working with metaphors has been shown to facilitate coping and action. This paper sets the scene for why and how genetic counselors can utilize client‐generated and counselor‐generated metaphors purposefully in all areas of practice, including enhancing the therapeutic interaction with clients, as well as in supervision, training, cultural competence, and shaping of societal attitudes toward genetics. [ABSTRACT FROM AUTHOR]

In an era of mental health service reform, co‐design is emerging as a leading framework to guide the design and implementation of new services. Co‐design uses the expertise of clinicians, those with lived experiences of services (both consumers and carers) and provocateurs (curious questioners) to understand a 'problem' and develop innovative strategies to address it. It relies on the creation of a safe environment where power imbalances are acknowledged and mitigated, and decisions are made collaboratively. Understanding how to do this effectively within the mental health sphere, where experiences of uneven power distribution and trauma are common, can feel overwhelming. Building a shared understanding of the opportunities and limitations within co‐design is also important to establish its place within broader mental health reform. This paper uses an experiential approach to reflect on a co‐design process, offering an opportunity to learn from a specific example. Factors that enhanced co‐design included formal, remunerated roles, the allocation of time to establish and maintain an intimate, trusting team culture, and the capacity for all team members to be vulnerable. Equally important, strategies needed to be employed to mitigate the challenges inherent within the process, including the impact of power differences, a push to make fast‐paced decisions, and a sense of cynicism remaining from previous projects or experiences. When these factors are attended to, the process of co‐design can be dynamic, innovative, and transformational for the people participating in it, the project and the mental health sector. [ABSTRACT FROM AUTHOR]

This paper critiques the Safewards model through the lens of lived experiences of psychiatric hospitalization, diagnosis of mental illness, and distress. Special focus is given to the model's tested 10 interventions and to five lesser known interventions, identifying the impact they can have on hospitalized consumers. We highlight the role and prevalence of trauma, as well as the need to prevent harm in hospital settings. We draw upon notions of hospital as a sanctuary for people and the importance of providing a safe ward. 'Sanctuary harm' and 'Sanctuary trauma' are thus defined, with emphasis placed on the Safewards interventions as means by which sanctuary can be achieved. Finally, the consumer‐perspective authors propose expansions to the model, critiquing the defining literature and moving towards a consumer experience of safety that is beyond the model's original intention: to reduce seclusion and restraint practices. Throughout the paper, the term 'consumer' is used in this context to mean people who have experienced or are experiencing psychiatric inpatient care. [ABSTRACT FROM AUTHOR]

The peer workforce has increased significantly in recent years; however, structured development and support for the roles are lacking. This paper explores the role of executive and senior management understanding in the employment of peer roles. In‐depth, semi‐structured interviews and one focus group were conducted with 29 participants from a range of nongovernment and public mental health services within Queensland, Australia. Findings of this study suggest management exposure to and understanding of peer work are essential to the development of an effective peer workforce. Exposure and understanding of peer roles reportedly led to greater acceptance and commitment from management. This commitment inspired action in the form of; enhanced support including advocacy/championing, increased development of roles and influenced culture within the organization to be more accepting of peer work. There was a perception that developing an 'accepting' organizational culture supported the integrity and expansion of peer roles including designated 'peer management' positions. Development of peer management positions is suggested as an effective means of improving the impact of peer perspectives, advocating for peer work and providing ongoing and timely supervision. Recommendations include the need for training and information for management on the unique function, purpose and value of peer roles; and the development of networks, including mentoring opportunities, for organizations with limited experience to gain support and advice from those with greater experience developing peer roles. [ABSTRACT FROM AUTHOR]

We report on the lived experiences of faculty members during the early months of the COVID‐19 pandemic, exploring the broader experiences of faculty members as individuals living multifaceted lives whose homes became their offices, their students scattered geographically and their home lives upended. Using a phenomenological approach for data collection and analysis, we conducted 20 in‐depth interviews with faculty holding varied academic appointments at universities across Canada. Experiences during the early months of the pandemic were described as being overwhelming and exhausting, and participants described as being stuck in a cycle of never‐ending repetitiveness, sadness and loss, or managing life, teaching and other professional responsibilities with little sense of direction. In keeping with phenomenological methods, this research paints a visceral picture of faculty experiences, seeking to contextualize teaching and learning during this time. Its unique contribution lies in portraying emergency remote teaching as an overlapping and tumultuous world of personal, professional and day‐to‐day responsibilities. Practitioner notesWhat is already known about this topicSurveys and first‐person accounts of remote teaching paint an initial picture of experiences.During the COVID‐19 pandemic many faculty were facing various anxieties and tensions.The transition to remote teaching was uneven.What this paper addsA systematic analysis of faculty experiences during the early months of the pandemic.Evocative and vivid descriptions of academics' experiences.An explanation of what it feels like to live through this time.Implications for practice and/or policyFaculty require more support.Trauma‐aware and trauma‐informed practices can support faculty and their work.Rich descriptions can inform future policymaking and practice. [ABSTRACT FROM AUTHOR]

There is currently limited information about the impact and experiences of a suicide attempt on the well‐being of a person providing care before, during, or after the attempt. Scant evidence available suggests that providing care has a profound impact on the support person or carers' own physical and psychological health; they may experience adverse health, financial, and functional outcomes, collectively described as 'caregiver burden'. This project sought to understand insights into the experience of providing care for someone who has previously attempted suicide. The larger study was designed in three phases consisting of an online survey, semi‐structured interviews, and a follow‐up survey. This paper reports the qualitative findings of the interviews which were thematically analysed. Two symbiotic themes emerged: the lived experience of caring and the impact of engagement and support from the healthcare system. The authors concluded that that the carer position is a multidimensional role involving informal agreements and situational or time‐based support. Further, awareness of this shifting relationship needs to be embedded in the provision of care by health professionals following a suicide attempt. Recommendations for enhanced health system response are proposed. [ABSTRACT FROM AUTHOR]

Systemic lupus erythematosus (SLE) is a highly unpredictable and potentially lethal disease which ultimately challenges identity, future and the meaning of life. In a caring context, the experience of good health is perceived to be a balance between biomedical health and the existential experience of having a good life. This balance is jeopardised in the face of severe chronic illness and leads to extensive suffering if not handled carefully. Research suggests that patients suffering from severe chronic illness need support on an existential level, but also emphasises that, given its elusive nature, caring for the existential dimension is difficult to manage. This paper explores the experience of being diagnosed with SLE as an existential phenomenon. Through repeated phenomenological and hermeneutic interviews with 15 women conducted from 2013 to 2015, data concerning the diagnostic phase of SLE were analysed using Van Manen's phenomenology of practice. The essence was found to be a standstill in life comprehended through three inter‐related themes: standing in a swirl of events, standing on uneven ground and standing at a turning point with oneself and others. The paper elucidates how existential life phenomena are lived, during the course of being diagnosed. In conclusion, it provides an ethical awareness of how a standstill in life is lived and of the patients’ existential transition during the diagnostic phase. A holistic approach is recommended in caring for patients with SLE. [ABSTRACT FROM AUTHOR]

Despite substantial reorganisation of stroke unit provision in the United Kingdom, limited qualitative research has explored how stroke survivors experience the acute stroke unit. This hermeneutic phenomenological study used accounts from four stroke survivors who experienced one of two acute stroke units. Through detailed analysis, the acute stroke unit emerged as a meaningful space, in two distinct but interconnected forms. As holding space, the unit was understood to offer protection and safe haven, as the stroke survivors looked to cope and respond to the temporal, bodily, biographical disruption and significant vulnerability brought about by stroke and by being in hospital. Holding was fulfilled by different people (including their fellow stroke survivors) and reflected a human response to human need and existential vulnerability. This space, and the practices within it, functioned to hold them intimately but also at a distance from their prestroke lifeworld. As such, the acute stroke unit holding space was intertwined with how it supported, encouraged or provoked transition. In the transitional space of the acute stroke unit, stroke survivors described how they survived the hospital‐healthcare space, stroke unit and poststroke space. This paper articulates how transition was meaningfully signified through its absence or presence, as they transformed, relinquished or re‐asserted their 'self', and in one case, recovered whilst 'in there'. The findings of this study provide phenomenological insight into stroke survivors' lived experience, the meaningful holding and transitional contribution of the unit, and how these spatial forms were intertwined. These insights are discussed in relation to the existing evidence base and stroke unit provision. [ABSTRACT FROM AUTHOR]

This systematic review synthesizes existing peer reviewed evidence reporting on evaluated strategies used for enhancing communication pathways for continuity of care between the emergency department and mental health community supports. Following the PRISMA guidelines and the PICO framework, this review was conducted between January and July 2021. Included articles needed to evaluate communication pathway interventions for continuity of care between the emergency department and mental health community services which support service users with mental health and/or suicidal crisis. The seven included studies identified three support coordination interventions, two motivational interviewing interventions, an electronic record enhanced strategy and results from a phone follow‐up study. This review demonstrates that support coordination, motivational interviewing, education, or an enhanced electronic record strategy can improve continuity of care, and in some cases, reduce the need for people to re‐present to ED when they are experiencing mental health concerns or suicidal crisis. Results of this review reveal that a multipronged approach of communication pathways for continuity of care would enable more effective connections with mental health community supports and enable better outcomes for people requiring services. [ABSTRACT FROM AUTHOR]

There is a disproportionately high rate of hereditary long QT syndrome (LQTS) in Northern British Columbia First Nations people, largely due to a novel missense variant in KCNQ1 (p.V205M). The variant has been previously described predisposing those affected to syncope, arrhythmia, and sudden death. Although the biological aspects of LQTS have been explored extensively, less research has been done into the impact of living with a genetic variant that predisposes one to sudden death, and no previous studies have provided cultural insights from a First Nations community. The goal of this study was to explore what facilitates and hinders resiliency and coping for those living with LQTS. Participants were invited to partake in their choice of one‐to‐one interviews, Photovoice, and Talking Circles. This paper presents the findings from the interview portion of the study. Interviews were recorded, transcribed, and analyzed qualitatively using the systematic text condensation method. Ten women shared their personal experiences of living with LQTS through individual interviews. Half of the women had tested positive for the p.V205M variant, and the other half were awaiting results. In general, learning about a LQTS diagnosis was perceived as traumatic, with gradual acceptance that led to coping. The main factors found to facilitate resiliency and coping were positive family relationships, spirituality, and knowledge about LQTS. The main factors found to hinder resiliency and coping were a poor understanding of the biological or clinical aspects of LQTS, conflicting medical advice (especially regarding physical activity) and LQTS not being taken seriously by social contacts and healthcare providers. It appears that learning to live with LQTS is an ongoing process, requiring balance and interconnectedness between all aspects of well‐being. [ABSTRACT FROM AUTHOR]

Background: A growing body of research is addressing the process and science of engaging people with lived experience (PWLE) of mental health challenges and other psychiatric conditions, and family members, in research activities. Objective: This scoping review of reviews synthesizes literature reviews on the engagement of PWLE and family members in research across the field of psychiatry. Method: Systematic searches were conducted in seven bibliographic databases. Records were independently screened first at the title and abstract level, then at the full‐text level. Included were any literature synthesis studies published in English, French, or Spanish in any given year, focusing on the engagement of PWLE and/or family members in research within psychiatry. Twenty records were included. Data were extracted in a spreadsheet and codebook thematic analysis was used across the body of articles to synthesize the findings. Results: Aspects of PWLE engagement have been synthesized in 20 review articles reviewing 376 articles across psychiatry as a whole and several subpopulations, including youth mental health, dementia, neurodevelopmental disorders, people who use drugs, and forensic mental health. Information specific to family engagement is lacking. Barriers, facilitators, and positive impacts of PWLE engagement have been widely reported across domains of research, with a considerable degree of consensus across subpopulations. Some negative impacts and reporting challenges have also been identified. Discussion: This scoping review of reviews provides an overarching understanding of the current state of the science of PWLE and family engagement across psychiatry research. The findings can inform future research practices enriched with a genuine and effective engagement with PWLE and families. Patient or Public Contribution: The authorship team includes members with intersecting lived experience and academic identities. Additional lived experience engagement was not conducted as part of this review. [ABSTRACT FROM AUTHOR]

Objective: Despite a number of qualitative studies published from the perspective of eating disorder (ED) service users, there has been no attempt to exclusively synthesize their views to gain a fuller understanding of their ED service experiences. It is important to understand this perspective, since previous research highlights the difficulties ED healthcare professionals report when working with this client group. Method: A systematic search of the literature was conducted to identify qualitative studies focusing on experiences of ED services from the perspective of service users. Twenty‐two studies met the inclusion criteria and underwent a quality appraisal check using the Critical Appraisal Skills Programme (CASP) tool for qualitative research. These were then synthesized using a meta‐synthesis approach. Results: Four overarching themes were generated: "Treatment: Focus on physical vs. psychological symptoms"; "Service Environment: The role of control within services"; "Staff: Experiences with staff and the value of rapport"; and "Peer Influence: Camaraderie vs. comparison." Service users expressed a desire for more psychological input to tackle underlying difficulties relating to their ED. A complex relationship with feelings of control was described, with some feeling over‐controlled by service providers, while others retrospectively recognized the need for control to be taken away. Staff values, knowledge and trust played a significant role in treatment and recovery. Peers with an ED were described to be a valuable source of understanding and empathy, but some found peer influence to perpetuate comparison and competitiveness. Discussion The results portray some of the conflicts and complexities that service users encounter in ED services. A running thread throughout is the perceived importance of adopting an individualized approach within these services. [ABSTRACT FROM AUTHOR]

It is well established that connection and support are associated with supporting recovery from eating disorders whereas isolation and feeling misunderstood can be barriers to change. While the consumer and recovery movements have long advocated for treatments that go beyond symptom reduction alone to include factors such as connection with others, there are few treatments that are designed to target these directly for young people with eating disorders and their families. In 2014 the Sydney Children's Hospital Network Eating Disorder Service at The Children's Hospital at Westmead introduced multi‐family therapy (MFT), the first program of its kind in Australia, with a primary aim being to increase solidarity and support for families in addition to helping promote eating disorder recovery more broadly. Rooted in the principles of family therapy for anorexia nervosa, MFT generally brings together six to eight families for a four‐consecutive day workshop followed by six single follow‐up workshops over the course of six months. This paper reviews the current literature available on MFT, describes its introduction at a specialist tertiary eating disorder service in Australia, explores preliminary feedback from families, and discusses the importance of creating solidarity for families affected by eating disorders. [ABSTRACT FROM AUTHOR]

Abstract: In Australia and internationally, Peer Workers are increasingly being incorporated into the mental health workforce. Underpinning this trend is the conviction that the inclusion of workers with lived experience in overcoming mental health challenges is central to transforming service delivery. Given there are few identified Australian studies into the experiences of Peer Workers, this paper reports findings from qualitative interviews conducted in a Partners In Recovery programme in one regional area in Australia. The interviews formed part of a larger mixed‐method study evaluating Peer Worker roles in the programme. Thematic analysis of interview transcripts with Peer Workers and other staff employed in the programme (n = 22) was undertaken. Central to the five themes that emerged was the concept of lived experience expertise in overcoming mental health challenges. The themes were: (i) role variance, (ii) the challenges and opportunities for Peer Worker, (iii) the processes Peer Workers employed as they attempted to shape an identify and language, (iv) the inconsistencies and challenges of employing lived experience as a defining feature of the peer worker role, and (v) the nature of trust arising from lived experience relationships. From this study, it is evident that the Peer Worker role remains underdeveloped. The difficulties experienced by Peer Workers in establishing a homogenous identity and role is not unique. The process and lack of clarity around role identity revealed from the narratives, parallels the experiences of Mental Health Nursing. [ABSTRACT FROM AUTHOR]

Background: The involvement of people with lived experience (LEX) workers in the development, design, and delivery of integrated health services seeks to improve service user engagement and health outcomes and reduce healthcare gaps. Yet, LEX workers report feeling undervalued and having limited influence on service delivery. There is a need for systematic improvements in how LEX workforces are engaged and supported to ensure the LEX workforce can fully contribute to integrated systems of care. Objective: This study aimed to operationalize the Consolidated Framework for Implementation Research (CFIR) using a rigorous scoping review methodology and co‐creation process, so it could be used by health services seeking to build and strengthen their LEX workforce. Search Strategy: A systematic literature search of four databases was undertaken to identify peer‐reviewed studies published between 2016 and 2022 providing evidence of the inclusion of LEX workers in direct health service provision. Data Extraction and Synthesis: A descriptive‐analytical method was used to map current evidence of LEX workers onto the CFIR. Then, co‐creation sessions with LEX workers (n = 4) and their counterparts—nonpeer workers (n = 2)—further clarified the structural policies and strategies that allow people with LEX to actively participate in the provision and enhancement of integrated health service delivery. Main Results: Essential components underpinning the successful integration of LEX roles included: the capacity to engage in a co‐creation process with individuals with LEX before the implementation of the role or intervention; and enhanced representation of LEX across organizational structures. Discussion and Conclusion: The adapted CFIR for LEX workers (CFIR‐LEX) that was developed as a result of this work clarifies contextual components that support the successful integration of LEX roles into the development, design, and delivery of integrated health services. Further work must be done to operationalize the framework in a local context and to better understand the ongoing application of the framework in a health setting. Patient or Public Contribution: People with LEX were involved in the operationalization of the CFIR, including contributing their expertise to the domain adaptations that were relevant to the LEX workforce. [ABSTRACT FROM AUTHOR]

Scand J Caring Sci; 2011; 25; 806-817 The primacy of the good midwife in midwifery services: an evolving theory of professionalism in midwifery Theory is the acknowledged foundation to practise methodology, professional identity and growth of formalized knowledge. It has been noted that practice must not only be evidence-based but also theory-based. Hence, midwifery must be theory based because theories serve as a broad framework for practice and may also articulate the goals of a profession and core values. In this paper, an evolving theory on the empowerment of childbearing women is introduced, where the midwife's professionalism is central. The theory is synthesized from nine datasets and scholarly work, and then more than three hundred studies were reviewed for clarification and confirmation. According to the theory, the midwife's professionalism is constructed from five main aspects: The professional midwife cares for the childbearing woman and her family. This caring within the professional domain is seen as the core of midwifery. The professional midwife is professionally competent. This professional competence must always have primacy for the sake of safety of woman and child. The professional midwife has professional wisdom and knows how to apply it. Professional wisdom is a new concept used to denote the interplay of knowledge and experience. The professional midwife has interpersonal competence, is capable of empowering communication and positive partnership with the woman and her family. The professional midwife develops herself both personally and professionally, which is the prerequisite for true professionalism. This evolving theory must be regularly reconstructed in the light of current knowledge within midwifery. It is an attempt to identify and articulate the processes and components of the art and science of midwifery practice in an endeavour of continuing the discipline's development by assisting in the understanding and practice of creating further theoretical discourse, processes and products for midwifery practice. The theory has implications for midwifery education and practice. [ABSTRACT FROM AUTHOR]

Abstract Nursing theories and nursing models have a low profile within psychiatric and mental health nursing within the United Kingdom. This paper considers some of the historical, policy and rhetorical issues that may have framed nursing's relative dependency on the medical paradigm, and briefly considers some of the ethical challenges, which proposed ‘extensions’ of the nurse's role might have for a ‘caring’ discipline. The paper describes the philosophical background of the Tidal Model, which emerged from a series of studies of the ‘need for psychiatric nursing’. The Tidal Model extends and develops some of the traditional assumptions concerning the centrality of interpersonal relations within nursing practice, emphasizing in particular the importance of perceived meanings within the lived-experience of the person-in-care and the role of the narrative in the development of person-centred care plans. The model also integrates discrete processes for re-empowering the person who is in mental distress, and provides a practical template for the exploration of the spiritual dimensions of the person's lived-experience, if appropriate. [ABSTRACT FROM AUTHOR]

Mental health policy includes a clear expectation that consumers will participate in all aspects of the design and delivery of mental health services. This edict has led to employment roles for people with lived experience of significant mental health challenges and service use. Despite the proliferation of these roles, research into factors impacting their success or otherwise is limited. This paper presents findings from a grounded theory study investigating the experiences of Lived Experience Practitioners in the context of their employment. In-depth interviews were conducted with 13 Lived Experience Practitioners. Risk was identified as a core category, and included sub-categories: vulnerability, 'out and proud', fear to disclose, and self-care. Essentially participants described the unique vulnerabilities of their mental health challenges being known, and while there were many positives about disclosing there was also apprehension about personal information being so publically known. Self-care techniques were important mediators against these identified risks. The success of lived experience roles requires support and nurses can play an important role, given the size of the nursing workforce in mental health, the close relationships nurses enjoy with consumers and the contribution they have made to the development of lived experience roles within academia. [ABSTRACT FROM AUTHOR]

In the course of a phenomenological study that explored the experiences of family members during their older loved one's delirium, a range of delirium experiences depicted in artistic, creative, and linguistic media were reviewed. The search for, and compilation of, media sources for reflection during data analysis is described in this paper. In doing so, the researcher reveals how attentiveness and openness to varied depictions of lived experiences, as well as a valuing attitude toward challenging subjective perspectives, can enhance researcher reflexivity and appreciation of interpretive meanings. Turning to media depictions of delirium offered alternative perspectives on the experience. It challenged the researcher's assumptions, enhanced phenomenological reflection, promoted critique of evolving interpretations, and suggested meanings that might not have otherwise been realized. The approach used is a potent, although often overlooked, way to differentiate the nature of phenomena shared through lived experience data. Media-based methods and their use in phenomenology continue to be explored. Illustrations of how to integrate media sources, as well as discussion about the benefits and alternatives to more common uses, are needed. [ABSTRACT FROM AUTHOR]

There is a growing body of qualitative literature describing the lived experiences of people with tic disorders (TDs). The aim of this paper was to conduct a systematic review of this literature, synthesizing the perspectives of individuals on their experiences. Meta-synthesis methodology was utilized to review and draw together findings from 10 articles, from which key concepts were extracted, and over-arching themes generated. Six themes were identified to encompass the experience of TDs, including (1) cultural, semantic issues of the condition; (2) negative experiences in organizations and treatment; (3) the value and negative impact on interpersonal relationships; (4) personal identity in the constant presence of TDs; (5) concerns for the future; and (6) strategies to control and manage the observable presence of tics. Adaptive coping strategies were found to encompass continuous social adaptation, strategies to manage tics and social perceptions, self-acceptance, advocacy, and support from others. The results highlighted the significant role of social and cultural issues related to understanding and stigma, which underpinned many of the lived experiences. Implications for clinical practice in supporting individuals with TDs were also highlighted. [ABSTRACT FROM AUTHOR]

This paper starts from a care ethical perspective on care and reports on a phenomenological study into older patients' experiences of hospitalisation. Although hospital care for older patients is at the centre of attention, questions what is at stake and what defines quality of care are rarely discussed with a view to the perspective of older patients themselves. The qualitative observational method of shadowing was used. Ten patients of 75 years old or older were shadowed from admission until discharge. The reflective lifeworld approach, based on phenomenological philosophy, was used to analyse the collected data. For the older patients included in the study, the essential meaning of hospitalisation can be described as feeling an outsider left in uncertainty. The word 'left' reveals how hospitalisation is experienced as a solitary struggle with various uncertainties that are related both to the hospital environment and to the patient's personal situation. The essential meaning is composed of the following three constituents: (i) staying in an inhospitable place, (ii) feeling constrained and (iii) experiencing disruption. The busy walking back and forth of care professionals and the functional character of involvement, restrain older patients from participating and make them feel abandoned. Feeling constrained reveals the feelings brought on by the ageing body which are emphasised by hospitalisation but often neglected by hospital staff. The failure of healthcare professionals to recognise and respond to who older patients are aside from their illness exacerbate the experience of disruptions. To improve care, hospital staff must be more sensitive to older patients' uncertainties. Also, hospital staff should provide older patients with understandable information and explanation which besides offering patients the possibility to feel involved, meets their need for recognition. [ABSTRACT FROM AUTHOR]

Background: There is growing evidence demonstrating the impact of engaging people with lived experience (PWLE) in health research. However, it remains unclear what evidence is available regarding the impact of engagement specific to mental health and substance use research. Methods: A scoping review of three databases and thematic analysis were conducted. Sixty‐one articles that described the impact of engagement in mental health and substance use research on either individual experiences or the research process were included. Results: Key topics include (a) the impact of engagement on individual experiences; (b) the impact of engagement on the research process; and (c) facilitators and barriers to impactful engagement. Studies largely focused on the perceived positive impact of engagement on PWLE (e.g., personal and professional growth, empowering and rewarding experience, feeling heard and valued), researchers (e.g., rewarding experience, deeper understanding of research topic, changes to practice), and study participants (e.g., added value, fostered a safe space). Engagement activities were perceived to improve facets of the research process, such as improvements to research quality (e.g., rigour, trustworthiness, relevance to the community), research components (e.g., recruitment), and the research environment (e.g., shifted power dynamics). Facilitators and barriers were mapped onto the lived experience, researcher, team, and institutional levels. Commonly used terminologies for engagement and PWLE were discussed. Conclusion: Engaging PWLE—from consultation to co‐creation throughout the research cycle—is perceived as having a positive impact on both the research process and individual experiences. Future research is needed to bring consistency to engagement, leverage the facilitators to engagement, and address the barriers, and in turn generate research findings that have value not only to the scientific community, but also to the people impacted by the science. Patient or Public Contribution: PWLE were engaged throughout the scoping review process, including the screening phase, analysis phase, and write‐up phase. [ABSTRACT FROM AUTHOR]

The study's rationale Women's experiences regarding labour pain preparation and management have been largely neglected. Aims and objectives Explore women's experiences regarding labour pain preparation and management in normal childbirth. Methodological design and justification The Vancouver School of doing phenomenology was the methodological approach of the study since it provides inside information about the lived experience. Research methods Data were collected through in-depth interviews with 14 participants; seven primiparous and seven multiparous women. Results The women described a challenging journey of no return through labour pain, with different landmarks on the journey. They described how they prepared for the pain; the context of the pain experience; how they experienced and managed the pain with different strategies and how they saw the pain at the journey's end. The quality of the midwife's presence and professionalism was of great importance to them. The 'good midwives' they described created a special atmosphere which was warm and secure and was conducive to their managing the pain. The women also described how important it was for them to have a supportive partner, with whom they had a mutual understanding, in order to manage the pain. Conclusions In this paper, we are presenting a study within the third paradigm in labour pain preparation and management: the childbearing woman's paradigm - the first and second being the midwifery and the medical paradigm, respectively. Midwives can play a major role in working with women in their preparation and management of labour pain. In the future, more research has to be done to illuminate this essential part of the childbearing woman's paradigm. [ABSTRACT FROM AUTHOR]

The break‐up of Yugoslavia disintegrated the Yugoslav citizenship regime, and new communities of citizens and citizenship regulations were born. Since the identitarian and lived aspects of citizenship are inseparable from its formal and legal aspects, (not) having the 'right' personal documents and (not) being recognized as the 'right' kind of citizen had profound effects on the lives of many individuals. Relying on the concept of documentality and stressing the feature of documents as being constitutive of social reality, this article analyses personal narratives illustrating the lived experience of citizenship transformations after the break‐up of Yugoslavia. [ABSTRACT FROM AUTHOR]

The purpose of this research was to explore the dietary lived experiences of university-aged women suffering from inflammatory bowel disease (IBD) and irritable bowel syndrome (IBS). This paper will address the decision-making process used by these women when contemplating the consumption of dietary temptations, despite the associated negative consequences. This phenomenological study was guided by heuristic inquiry. A purposive sample of eight women, between the ages of 18 and 23 years, who were living with IBD or IBS were recruited via postings and word-of-mouth. The findings indicate that these women occasionally felt compelled to give into dietary temptations, despite the consequences to their health. The decision-making process they used when considering these negative health behaviours involved three personally controlled parameters. These three parameters included: assessing the cost–benefit relationship before engaging in these behaviours; having a physical and/or psychological reliance on medications to treat resulting symptoms; and through controlling the timing and surroundings in which they indulged in these negative dietary behaviours. The practical implications for health-care professionals treating patients with IBD or IBS are discussed. [ABSTRACT FROM AUTHOR]

The study’s rationale: Confusion is a common condition among older patients and often a fearful experience. Opinions vary as to how to communicate with and care for confused patients and professional carers often find the patients’ situation almost as distressing as the patients’ themselves do. Aims and objectives: The aim of this study was to describe professional carers’ experiences of their encounters with older confused patients. Methodological design and justification: Data was collected from interviews with 10 professional carers working on a ward specializing in the care of older confused patients. A descriptive phenomenological research approach was used to gather knowledge of professional carers’ experiences of encounters with older confused patients. Ethical issues and approval: A Regional Board of Research Ethics granted ethical permission for the study. The appropriate ethical principles were followed. The participants were contacted personally and received a letter providing information on the study. Written consent was requested before the interview . If needed, the participants were able to get in contact with the staff health service for a follow-up after the interview. Names or places have been changed in order to ensure confidentiality. Results: The encounter with the confused patient is experienced as an encounter with an unfamiliar person, where the patients’ actions and words are unforeseeable and with a lack of immediate trust. The essential meaning is further illuminated by the meaning constituents: the unforeseeable encounter, always being on guard and using oneself as a tool. Relevance to clinical practice: This paper focuses on the importance of encouraging professional carers to pay attention to the complexity of the encounter with the confused patient, reflecting upon their own behaviour within these encounters and the importance of knowledge of the patient’s preferred senses and life stories. Caring for confused patients involves a great responsibility where both the professional carers and the patients are vulnerable and exposed. [ABSTRACT FROM AUTHOR]