Nulliparous women's lived experiences of the prolonged passive stage of labour: A thematic analysis based on descriptive phenomenology.

INTRODUCTION: Prolonged progress can occur in the first and second stages of labour and may contribute to a negative birth experience. However, previous studies have mainly focused on quantitative aspects or overall birth experience, and little is known about women's experiences of a prolonged passive second stage. OBJECTIVE: To describe the lived experiences of a prolonged passive second stage of labour in nulliparous women. METHODS: A qualitative study was conducted with 15 nulliparous women with a passive second stage lasting three hours or more. Data were analysed using thematic analysis based on descriptive phenomenology. RESULTS: The analysis resulted in four themes: "An unknown phase" that entailed remaining in a phase that the women lacked an awareness of. "Trust and mistrust in the body's ability" represents the mindset for vaginal birth as well as feelings of powerlessness and self-guilt. The theme "Loss of control" included experiences of frustration, fatigue, and having to deny bodily instincts. "Support through presence and involvement" signifies support through the midwife's presence in the birthing room, although there were also descriptions of emotional or physical absence. CONCLUSIONS: The findings contribute to the understanding of prolonged labour based on women's lived experiences and add to the body of knowledge about the prolonged passive second stage. This study highlights that women need support through information, presence, and encouragement to remain in control. It can be beneficial during birth preparation to include knowledge about the passive second stage together with unexpected or complicated situations during birth, such as prolonged labour.

A qualitative study of Black breast cancer previvors' and survivors' experiences after positive genetic testing.

Black women have a disproportionately high mortality rate from breast cancer, which is likely influenced by an intersection of environmental, cultural, economic, and social factors. Few published studies capture the experiences of Black women after a genetic diagnosis associated with increased risk for breast cancer. This study aims to explore the perspectives and experiences of Black women who carry a pathogenic variant associated with increased breast cancer risk and identify barriers to care for this population. We conducted semi-structured interviews with 16 participants with and without histories of breast cancer. The sample included representation across a range of demographic groups (e.g., income level, employment status, insurance status, and education level). Reflexive thematic analysis was the methodology used to analyze data. Five major themes emerged from participants' descriptions of their experiences during and after genetic testing: (1) searching for representation; (2) information enabling agency; (3) healthcare providers as facilitators or barriers to care; (4) self-identity impacting disclosure; and (5) evolving mental health and coping strategies. Participants identified barriers to care including challenging or misinformed healthcare providers, medical racism, and a lack of Black representation in the cancer community. This work deepens our understanding of the nuanced experiences of Black women across the continuum of cancer care, illustrates unmet needs, and provides a foundation for future research that includes the perspectives of Black women.

Talking about borderline personality disorder, shaping care: The multiple doings of narratives.

This article focuses on the narratives that circulate about borderline personality disorder (BPD) in health-care settings in Australia and the effects such narratives can have on how people practice and seek out care. People with a BPD diagnosis frequently access health-care services, often encountering stigma and discrimination. Drawing on narrative theory, we critically unpack the circulation and capacities of BPD narratives and the ways they can often contribute to poor and troubling experiences. This article is based on qualitative interviews with people living with a BPD diagnosis, as well as health practitioners who work with people with a BPD diagnosis. Our findings identified insidious and powerful BPD narratives that circulate in health-care settings, particularly in short-term, acute, or non-specialist contexts, such as emergency departments and in-patient units. These narratives influenced the ways that participants both practiced and sought out care. To improve health service quality for people with a BPD diagnosis, or those experiencing mental distress, it is important to challenge the sociocultural-political norms and relations that can influence approaches to care and practice. Disrupting and reframing negative BPD narratives and raising awareness about the impact of stories that are told about BPD have the potential to generate social change.

Discordant conceptualisations of eating disorder recovery and their influence on the construct of terminality.

Eating disorders (EDs) are complex, multifaceted conditions that significantly impact quality-of-life, often co-occur with multiple medical and psychiatric diagnoses, and are associated with a high risk of medical sequelae and mortality. Fortunately, many people recover even after decades of illness, although there are different conceptualisations of recovery and understandings of how recovery is experienced. Differences in these conceptualisations influence categorisations of ED experiences (e.g., longstanding vs. short-duration EDs), prognoses, recommended treatment pathways, and research into treatment outcomes. Within recent years, the proposal of a 'terminal' illness stage for a subset of individuals with anorexia nervosa and arguments for the prescription of end-of-life pathways for such individuals has ignited debate. Semantic choices are influential in ED care, and it is critical to consider how conceptualisations of illness and recovery and power dynamics influence outcomes and the ED 'staging' discourse. Conceptually, 'terminality' interrelates with understandings of recovery, efficacy of available treatments, iatrogenic harm, and complex co-occurring diagnoses, as well as the functions of an individual's eating disorder, and the personal and symbolic meanings an individual may hold regarding suffering, self-starvation, death, health and life. Our authorship represents a wide range of lived and living experiences of EDs, treatment, and recovery, ranging from longstanding and severe EDs that may meet descriptors of a 'terminal' ED to a variety of definitions of 'recovery'. Our experiences have given rise to a shared motivation to analyse how existing discourses of terminality and recovery, as found in existing research literature and policy, may shape the conceptualisations, beliefs, and actions of individuals with EDs and the healthcare systems that seek to serve them.

'Whatever we have is what we eat': How marginalised urban populations in the Philippines and Thailand experienced their food environments, food security and diets through COVID-19.

This qualitative cross-country comparative study investigated the lived experience of marginalised urban populations (unemployed, daily wage earners/street vendors, and internal/external migrants) in Manila (Philippines) and Bangkok (Thailand) on food environments, food security and diets during COVID-19. Semi-structured interviews were conducted with individuals (n = 59) in April-May 2022. Thematic analysis revealed loss of income and strict mobility restrictions (Philippines) as key drivers of dietary changes and hunger. Common narratives included financial hardship, loss of personal agency, and daily survival. Coping strategies included drawing on social networks, cash and food aid, and 'scheming' around restrictions. Contextualised crisis policy planning should explicitly consider the lived experience of marginalised populations for future shocks.

'It was like coming back from the clouds': a qualitative analysis of the lived experience of overdose consequent to drug use among a cohort of people who use drugs in Scotland.

BACKGROUND: Globally, non-fatal overdose (NFOD) rates consequent to drug use, typically opioids, continue increasing at a startling rate. Existing quantitative research has revealed myriad factors and characteristics linked to experiencing NFOD, but it is critically important to explore the lived context underlying these associations. In this qualitative study, we sought to understand the experiences of NFOD among people who use drugs in a Scottish region in order to: enhance public policy responses; inform potential intervention development to mitigate risk; and contribute to the literature documenting the lived experience of NFOD. METHODS: From June to July 2021, two peer researchers conducted face-to-face semi-structured interviews with people who use drugs who had experienced recent NFOD attending harm reduction services in Tayside, Scotland. These were transcribed verbatim and evaluated using thematic analysis with an inductive approach which had an experiential and essentialist orientation. RESULTS: Twenty people were interviewed across two sites. Of those, 15 (75%) were male and mean age was 38.2 (7.7) years. All had experienced at least one NFOD in the prior six months, and all reported polydrug use. Five themes were identified, within which 12 subthemes were situated. The themes were: social context; personal risk-taking triggers; planned and impulsive consumption; risk perception; and overdose reversal. The results spoke to the environmental, behavioural, cognitive, economic, and marketplace, factors which influence the context of NFOD in the region. CONCLUSIONS: A complex interplay of behavioural, psychological, and situational factors were found to impact the likelihood of experiencing NFOD. Structural inequities which policy professionals and civic leaders should seek to remedy were identified, while service providers may seek to reconfigure healthcare provision for people who use drugs to account for the interpersonal, psychological, and social factors identified, which appear to precipitate NFOD. TRIAL REGISTRATION: Not applicable.

The experiences of individuals who have had gestational diabetes: A qualitative exploration.

AIM: To qualitatively explore the experiences of individuals with Gestational Diabetes Mellitus (GDM) in Australia, and to recognise opportunities for leveraging digital health to enhance the support of GDM management. METHOD: A cross sectional online survey assessed the experiences of individuals with GDM, the healthcare system and their digital health usage. Respondents (recruited via a national diabetes registry or social media) were adults receiving GDM care within Australia in the last 5 years, who responded to any of three open-ended questions (n = 815) exploring positive, negative and other GDM experiences. Thematic analysis was utilised, and themes were mapped to the socio-ecological systems framework. RESULTS: At a system level, themes related to (1) accessibility of care including the value of digital health and the inflexible or inconsistent perception of the (2) implementation of guidelines. At an interpersonal level, themes covered the need for adequate (3) health information provision, and (4) supportive care, as well as highlighting (5) experiences of stigma including a desire for greater awareness of GDM. Individual-level themes included: (6) differential barriers to accessing care; (7) negative emotional burden; (8) internalisation of stigma; (9) dietary freedom and social impact and (10) opportunity for change derived from having GDM. CONCLUSION: Findings suggest a demand for more supportive, person-centred GDM care, improved information provision and individualised implementation of clinical guidelines. Such mechanisms may support reduced barriers to accessing care or negative psychosocial impacts of GDM. Though not central to the identified experiences, digital health tools may help address the need for optimised GDM care.

Two people making sense of a story: narrative exposure therapy as a trauma intervention in early intervention in psychosis.

Background: Narrative exposure therapy (NET) is a recommended intervention for people with multiple trauma histories; however, research is lacking into its use with people experiencing psychosis, many of whom report multiple trauma histories.Objective: This study aimed to explore experiences of NET in early intervention in psychosis (EIP) services.Method: Eight clinicians and four experts with lived experience (experts by experience) of psychosis and multiple trauma were interviewed on a single occasion using two versions (clinician and expert by experience) of a semi-structured interview schedule. Data was analysed using thematic analysis.Results: Five overarching themes were generated, relating to fear and avoidance of memories, importance of trust, organizing memories and making new meaning, reconnecting with emotions, and considerations when delivering NET in EIP.Conclusions: Directly addressing the impact of multiple trauma in people experiencing first episode psychosis is frightening and emotive, but helps to address painful memories and organize them into a personal narrative. Increases in distress and anomalous experiences were carefully considered by clinicians, but typically outweighed by the benefits of NET. Challenges were comparable to those described in non-psychosis research. Implications for clinical practice and future research are outlined.

Many people experiencing psychosis report multiple trauma histories. Narrative exposure therapy (NET) is a recommended intervention for people with multiple trauma histories, but research into its use with people experiencing psychosis is limited.This qualitative study found that clinicians and experts by experience in early intervention in psychosis services valued NET for its effect on organizing memories, reducing their emotional impact, and making new meaning around experiences, and that challenges of NET were similar to those described in non-psychosis research.Some participants described experiencing distress and dysregulation during NET, including an increase in anomalous experiences. Although this was typically temporary and outweighed by NET's benefits, careful assessment before and flexibility during the intervention are considered important for building engagement and trust.

Co-production in the Lost Mothers Project: transforming criminal justice narratives through Lived experience engagement.

The Lost Mothers Project researches the repercussions of mandatory separation between newborns and women in the Criminal Justice System (CJS), aiming to address gaps in evidence and decision-making for pregnant women within the CJS. Co-production with Birth Companions and their Lived Experience Team (LET) is integral, involving substantial input from the LET in various aspects. This paper, written collaboratively, explores the success stories, challenges, and impact of co-production on The Lost Mothers Project, emphasising the profound role of the LET in reshaping the criminal justice landscape for mothers within the system.The LET, comprised of mothers with direct CJS experience, assumes a central role as co-creators and decision-makers, providing invaluable insights into systemic issues. The co-design process, exemplified by refining the project's title and logo, showcases collaborative efforts to reduce isolation and emphasise the transformative power of co-production. Challenges in co-production, such as power dynamics and language barriers, are acknowledged, with strategies for overcoming them discussed. The project's commitment to non-hierarchical co-production ensures equal partnership among all stakeholders. Remuneration for the LET is prioritised, avoiding tokenistic engagement.The co-production paradigm in The Lost Mothers Project contributes to a more compassionate, equitable, and effective criminal justice system. This article concludes that co-production is not just a slogan but a cornerstone for empowering sometimes disempowered populations and fostering positive change in the criminal justice landscape. The transformative impact of the LET in actively shaping the research, coupled with their role as decision-makers, highlights the significance of lived experience engagement in reshaping narratives and creating inclusive research practices within criminal justice studies.

The Lost Mothers Project looks into how separating newborns from mothers in the Criminal Justice System affects women and staff. The research is trying to fill in the missing information and improve how decisions are made. This research, in partnership with Birth Companions and their Lived Experience Team (LET), focuses on getting direct input from mothers who have been in the justice system.The LET, made up of mothers with their own experiences of the system, is crucial in shaping the research. They actively contribute to decisions, like refining the project's title and logo. This involvement aims to make sure the research is not just about them but includes their perspectives, reducing feelings of isolation.Challenges in this collaborative process, such as power dynamics and language barriers, are recognised and strategies to overcome them are discussed. The project commits to a fair and equal partnership among everyone involved, and the LET is compensated for their time.The co-production approach in The Lost Mothers Project is seen as a way to create more understanding, and equality when undertaking research. The article stresses that co-production is not just a trendy idea but a crucial part of making positive changes in how we understand and address issues in the criminal justice system. The LET's active role, both in shaping the research and making decisions, shows the real impact of always including the viewpoints of people who have personally been through the prison system.This collaboratively written article is interwoven with quotations from members of the LET, utilising pseudonyms in certain instances. The paper was initially discussed with the team at one of our regular meetings, where volunteers were invited to contribute; consent was always sought for quotes and contributions. Iterations of the paper have been exchanged back and forth, ensuring accuracy, and relevant papers used as references were collectively read, reviewed and agreed upon.

Treatment trajectories of individuals diagnosed with rectal cancer: an interpretative phenomenological study.

Rectal cancer affects almost every aspect of an individual's daily life. However, there are gaps in understanding the complete spectrum of experiences spanning from diagnosis to recovery. Therefore, the aim of this study was to explore the treatment trajectories of individuals diagnosed with rectal cancer. Adopting an interpretative phenomenological approach, seven participants were recruited using purposive sampling. Data were collected using semi-structured, in-depth interviews that were digitally recorded, transcribed and analysed using thematic analysis. Study rigour was established following the four-dimension criteria of credibility, dependability, transferability and confirmability. Four prominent themes emerged from the participants' experiences of undergoing rectal cancer treatment: uncovering the inner battles; navigating the physical challenges; anchors of support and conquering the summit. These findings contribute to knowledge and practice by highlighting the importance of providing a comprehensive and individualised treatment plan for individuals that takes account of the physical and psycho-emotional implications of rectal cancer treatment.

Women's Lived Experience of Fetal Death: A Descriptive Phenomenological.

Pregnancy can be associated with risk factors that may lead to fetal loss, which is a profoundly distressing event impacting the psychological well-being, family dynamics, and overall quality of life of women. The present study aimed to explore women's lived experiences of fetal death. Conducted in 2023, this study employed a descriptive phenomenological approach, utilizing purposeful sampling to interview 12 pregnant women with a history of fetal loss. Data analysis was conducted using the seven-step method of Colaizzi. The study identified five main themes and fifteen sub-themes capturing women's experiences of fetal death. These themes include unfulfilled dreams, transitioning from happiness to grief, varied reactions among individuals, viewing a new healthy baby as a source of renewed hope, and the enduring long-term effects of fetal loss. Fetal death emerges as a deeply painful experience fraught with challenges for affected women. As such, these women require specialized attention from healthcare professionals, particularly midwives, gynecologists, and family specialists.

Ethical implications of defining longstanding anorexia nervosa.

The label severe and enduring anorexia nervosa (SE-AN) is widely used in the literature on longstanding anorexia nervosa (AN). However, the process of constructing the criteria and the use of the label SE-AN has ethical implications that have not been taken into account. Through combining existing literature and lived experience perspective, this paper addresses to what extent the current criteria do and do not reflect the lived experience. Arguments are presented on why the process of constructing the criteria for SE-AN and the application of the label can be both identified as, and give rise to, epistemic injustice. Epistemic injustice is an injustice that is done to a person as an individual with the capacity of acquiring and sharing knowledge. This type of injustice can occur at any stage of an interaction between people in which knowledge is shared with one another. The paper concludes by giving suggestions on how to pursue epistemic justice in the process of defining longstanding AN.

Some patients with anorexia nervosa (AN) develop a longstanding eating disorder. Over the years different labels, such as 'chronic AN' or 'treatment resistant AN', have been used to describe longstanding AN. Currently, the label that is used most often in scientific literature is 'severe and enduring AN' (SE-AN) and criteria for what entails SE-AN have been proposed. This paper looks at the possible ethical issues that have arisen in the process of constructing the criteria and possible ethical problems that may result from using the label SE-AN. The paper focuses on injustice that may arise when people with specific experiences, such as lived experience of longstanding AN, are not acknowledged as people with important knowledge to share. The paper concludes by giving suggestions on how to overcome this type of injustice.

What do you think caused your ALS? An analysis of the CDC national amyotrophic lateral sclerosis patient registry qualitative risk factor data using artificial intelligence and qualitative methodology.

Objective: Amyotrophic lateral sclerosis (ALS) is an incurable, progressive neurodegenerative disease with a significant health burden and poorly understood etiology. This analysis assessed the narrative responses from 3,061 participants in the Centers for Disease Control and Prevention's National ALS Registry who answered the question, "What do you think caused your ALS?" Methods: Data analysis used qualitative methods and artificial intelligence (AI) using natural language processing (NLP), specifically, Bidirectional Encoder Representations from Transformers (BERT) to explore responses regarding participants' perceptions of the cause of their disease. Results: Both qualitative and AI analysis methods revealed several, often aligned themes, which pointed to perceived causes including genetic, environmental, and military exposures. However, the qualitative analysis revealed detailed themes and subthemes, providing a more comprehensive understanding of participants' perceptions. Although there were areas of alignment between AI and qualitative analysis, AI's broader categories did not capture the nuances discovered using the more traditional, qualitative approach. The qualitative analysis also revealed that the potential causes of ALS were described within narratives that sometimes indicate self-blame and other maladaptive coping mechanisms. Conclusions: This analysis highlights the diverse range of factors that individuals with ALS consider as perceived causes for their disease. Understanding these perceptions can help clinicians to better support people living with ALS (PLWALS). The analysis highlights the benefits of using traditional qualitative methods to supplement or improve upon AI-based approaches. This rapidly evolving area of data science has the potential to remove barriers to accessing the rich narratives of people with lived experience.

COVID-19 experience of people with severe mental health conditions and families in South Africa.

Background: People with severe mental health conditions, such as schizophrenia, and their family caregivers are underserved in low- and middle-income countries where structured psychosocial support in the community is often lacking. This can present challenges to recovery and for coping with additional strains, such as a pandemic. Aim: This study explored the experiences and coping strategies of people with lived experience of a severe mental health condition, and family caregivers, in South Africa during the initial stages of the coronavirus disease 2019 (COVID-19) pandemic. Setting: This qualitative study was conducted in the Nelson Mandela Bay District, Eastern Cape, South Africa, in the most restrictive period of the COVID-19 lockdown. Methods: Telephonic qualitative interviews were conducted with people with lived experience (n = 14) and caregivers (n = 15). Audio recordings were transcribed and translated to English from isiXhosa. Thematic analysis was conducted with NVivo 12. Results: Participants described negative impacts including increased material hardship, intensified social isolation and heightened anxiety, particularly among caregivers who had multiple caregiving responsibilities. Coping strategies included finding ways to not only get support from others but also give support, engaging in productive activities and taking care of physical health. The main limitation was inclusion only of people with access to a telephone. Conclusion: Support needs for people with severe mental health conditions and their families should include opportunities for social interaction and sharing coping strategies as well as bolstering financial security. Contribution: These findings indicate that current support for this vulnerable group is inadequate, and resource allocation for implementation of additional community-based, recovery-focused services for families must be prioritised.

Perspectives and Experiences of Stakeholders on Self-Disclosure of Peers in Mental Health Services.

With the movement towards recovery-oriented mental health (MH) services, individuals with MH lived-experience are increasingly employed as peer providers (peers). Peers are unique in that they bring knowledge from experience and eye-level connection to service users that enhance the quality of services and humanize MH systems' culture. In Israel, hundreds of peers are employed in various roles and settings across the MH system. However, peer integration into MH services faces challenges. One issue involves the use of self-disclosure (SD) in MH services which varies with explicitness across roles and settings. This study sought to understand perspectives and experiences regarding peers' SD (use & sharing of knowledge from experience) among different stakeholders in MH health services. Six focus groups and 4 semi-structured interviews (N = 42) were conducted as a part of a larger international project (UPSIDES; ERC Horizon 2020, Moran et al., Trials 21:371, 2020). Data was transcribed verbatim and analyzed using thematic analysis. Four categories and 7 themes were identified regarding current perspectives and experiences with peers' SD in MH organizations: (i) Restrained or cautious organizational approach to SD; (ii) Attitudes of peers to SD approach; (iii) The influence of designated peer roles on SD; and (iv) Unwarranted SD of peers working in traditional roles. The findings reveal that peers' SD in MH services is a complex process. Organizational approaches were often controlling of non-designated peers' SD practices; participants had diverse attitudes for and against peers' SD; SD occurred according to personal preferences, specific peer role and the director's approach to peers' SD; Conflictual SD dilemmas emerged in relation to service users and staff. SD sometimes occurs unwarrantely due to ill mental health. The presence of peer-designated roles positively impacts peers' SD. We interpret the current mix of views and general conduct of peer SD practice in statutory MH services as related to three aspects: 1. The presence of a traditional therapeutic SD model vs. a peer SD model - with the former currently being dominant. 2. Insufficient proficiency and skill development in peers' SD. 3. Stigmatic notions about peer SD among service users and staff. Together, these aspects interrelate and sometimes create a negative cycle create tension and confusion.A need to develop professionalism of peer SD in statutory services is highlighted alongside enhancing staff and service user acknowledgement of the value of peer SD. Developing peer-designated roles can positively impacts peer SD in MH statutory services. Training, support, and organizational interventions are required to further support for peer-oriented SD and the enhancement of a person-centered and recovery orientation of MH services.

The lived experience of mental disorders in adolescents: a bottom-up review co-designed, co-conducted and co-written by experts by experience and academics.

We provide here the first bottom-up review of the lived experience of mental disorders in adolescents co-designed, co-conducted and co-written by experts by experience and academics. We screened first-person accounts within and outside the medical field, and discussed them in collaborative workshops involving numerous experts by experience - representing different genders, ethnic and cultural backgrounds, and continents - and their family members and carers. Subsequently, the material was enriched by phenomenologically informed perspectives and shared with all collaborators. The inner subjective experience of adolescents is described for mood disorders, psychotic disorders, attention-deficit/hyperactivity disorder, autism spectrum disorders, anxiety disorders, eating disorders, externalizing disorders, and self-harm behaviors. The recollection of individuals' past histories also indexes the prodromal (often transdiagnostic) features predating the psychiatric diagnosis. The experience of adolescents with mental disorders in the wider society is described with respect to their family, their school and peers, and the social and cultural context. Furthermore, their lived experience of mental health care is described with respect to receiving a diagnosis of mental disorder, accessing mental health support, receiving psychopharmacological treatment, receiving psychotherapy, experiencing peer support and mental health activism, and achieving recovery. These findings can impact clinical practice, research, and the whole society. We hope that this co-designed, co-conducted and co-written journey can help us maintain our commitment to protecting adolescents' fragile mental health, and can help them develop into a healthy, fulfilling and contributing adult life.

Community-based participatory-research through co-design: supporting collaboration from all sides of disability.

BACKGROUND: As co-design and community-based participatory research gain traction in health and disability, the challenges and benefits of collaboratively conducting research need to be considered. Current literature supports using co-design to improve service quality and create more satisfactory services. However, while the 'why' of using co-design is well understood, there is limited literature on 'how' to co-design. We aimed to describe the application of co-design from start to finish within a specific case study and to reflect on the challenges and benefits created by specific process design choices. METHODS: A telepractice re-design project has been a case study example of co-design. The co-design was co-facilitated by an embedded researcher and a peer researcher with lived experience of disability. Embedded in a Western Australian disability organisation, the co-design process included five workshops and a reflection session with a team of 10 lived experience and staff participants (referred to as co-designers) to produce a prototype telepractice model for testing. RESULTS: The findings are divided into two components. The first describes the process design choices made throughout the co-design implementation case study. This is followed by a reflection on the benefits and challenges resulting from specific process design choices. The reflective process describes the co-designers' perspective and the researcher's and organisational experiences. Reflections of the co-designers include balancing idealism and realism, the value of small groups, ensuring accessibility and choice, and learning new skills and gaining new insights. The organisational and research-focused reflections included challenges between time for building relationships and the schedules of academic and organisational decision-making, the messiness of co-design juxtaposed with the processes of ethics applications, and the need for inclusive dissemination of findings. CONCLUSIONS: The authors advocate that co-design is a useful and outcome-generating methodology that proactively enables the inclusion of people with disability and service providers through community-based participatory research and action. Through our experiences, we recommend community-based participatory research, specifically co-design, to generate creative thinking and service design.

Living with diabetes in Northeast India: An exploration of psychosocial factors in management.

Purpose: India is the 'Diabetes Capital of the World' and accounts for one in seven adults living with diabetes worldwide. Psychosocial, economic, and cultural correlates of disease have important implications for disease management but are rarely explored in India. The purpose of this study is to address psychosocial and cultural factors in diabetes management in the northeastern region of India which has a high disease burden. Methods: This study attempts to explore the psychosocial and lived experience of diabetes in the northeastern state of Meghalaya. The sample was selected from individuals attending an outpatient facility of a multi-speciality clinic. Semi-structured interviews were conducted with 25 individuals (13 women and 12 men), above the age of 40 years, who had been diagnosed with diabetes for at least 6 months. The narratives were analysed using thematic analysis. Results: Using the social cognitive framework, themes were organized in terms of a thematic map linking knowledge of diabetes to the perception of diabetes as 'a silent killer', to coping, leading to self-efficacy. However high self-efficacy, over time, may lead to complacency, disrupting health behaviours and requiring re-establishment of those behaviours. Adequate knowledge along with cognitive adaptation and self-efficacy were important constructs that contributed to behaviour change and maintenance. Elements of the cultural context were observed in the spiritual aspects of adaptation, the socially isolating consequences of diabetes, as well as gender differences in social support and management. Conclusion: Understanding the lived experiences of patients contributes to planning more effective interventions keeping the social and cultural context in mind for more effective management of diabetes. Additionally, acknowledging and supporting women's needs in diabetes management is called for.

Stigma by association among alcohol and other drug and harm reduction workers: Implications for workplace outcomes.

INTRODUCTION: The negative attitudes people hold towards those who use alcohol or other drugs (AOD) can also affect the people who work with this community, leading to lowered productivity and wellbeing. The impact of this stigma by association in the AOD and harm reduction sector is particularly significant because workers may have lived experience of AOD use and identify strongly with their client group. This study aimed to examine how stigma by association among health workers in the AOD/harm reduction sector relates to workplace outcomes. A secondary aim was to explore how lived experience influences experiences of stigma by association. METHODS: The research used a cross-sectional survey design and data collection occurred in 2023. Australian AOD/harm reduction workers (n = 228) completed an online survey assessing stigma by association as well as various workplace outcomes measures. RESULTS: Participants who reported experiencing more stigma by association experienced poorer workplace wellbeing, higher burnout and greater intentions to leave the AOD/harm reduction field. Experiences of stigma by association were unrelated to job satisfaction. Additional analyses revealed that participants with lived experience reported higher levels of job satisfaction and lowered intentions to leave the sector, but findings of stigma by association and its impacts on workplace outcomes did not differ from those without lived experience. DISCUSSION AND CONCLUSIONS: Identifying staff experiences of stigma by association and developing support and advocacy mechanisms to address this is likely to be key to reducing these experiences and ultimately to increasing positive workplace outcomes for AOD and harm reduction staff.

The Publishing Dilemmas of Authors Who Have Lived Experience With Mental Illness.

This column details some of the ways in which psychiatric survivors or those writing about their lived experience with mental illness are disadvantaged and devalued in mainstream academic publishing. This devaluation stems from structural issues involving various organizations, persons, and practices. Breaking the constraints of this structure is extremely difficult, but the author proposes some ways of doing so.