Personal Experience Of Illness Research Articles

Samostigma med strokovnjaki na področju duševnega zdravja v Sloveniji

Public and self-stigma substantially hinder seeking of help during times of psychological distress. Stigma can occur during mental illness or be anticipated when mental illness is not yet present. An important and vulnerable group, but one that is often neglected, are professionals working in mental health field. Using a sample of mental health professionals from Slovenia (N = 93), we focused on the relationship between personal experiences of mental disorders and suicidal behavior and different types of anticipated self-stigma (mental illness and help-seeking self-stigma). About half of the participants (49%) had past or current experience of mental illness, and 56% of them sought help. One sixth of participants (16%) reported having had suicidal ideation in the past or currently, but only 20% sought help for this. Gender was not significantly related to any type of stigma. Age was negatively correlated with personal experience of mental illness and anticipated self-stigma of mental illness. Individuals with personal experiences of mental illness showed higher self-stigma of mental illness than individuals without such experiences. Self-stigma of mental illness correlated slightly with self-stigma in help-seeking. Based on the results we conclude that in mental health professionals, experiences with one’s own mental health issues are related to higher self-stigma of mental illness and this is related to higher self-stigma in help-seeking. Hence, specific interventions should be developed to destigmatize mental illness among professionals and promote help-seeking in this group. Further research is warranted.

Nurses' career choice and satisfaction with mental health transition-to-practice programs: A cross sectional study.

INTRODUCTION: Globally, there are consistent issues recruiting staff into the mental health nursing workforce. In Australia, recent efforts to expand the workforce include recruitment of a wider range of nurses in addition to new graduates into mental health transition-to-practice programs. Understanding the career motivations of nurses entering the field is an important element of recruitment and retention. To describe nurses' satisfaction with their mental health transition program and identify factors influencing their choice of mental health as a career. An online cross-sectional survey with questions on program satisfaction and career choice was responded to by n = 55 enrolled and registered nurses in a mental health transition program. Nurses reported overall high satisfaction with their program and identified increased time release for professional development and being supernumerary as necessary to support role development. Almost 25% of nurses reported personal experience of mental illness as an influence in choosing a mental health career. Mental health transition programs are important in recruitment and retention and need to be tailored to the needs of a wide range of nurses and include support for staff wellbeing. Tailored transition programs can help strengthen role clarity, and support staff retention.

Trajectories of sentiment in 11,816 psychoactive narratives.

Can machine learning (ML) enable data-driven discovery of how changes in sentiment correlate with different psychoactive experiences? We investigate by training models directly on text testimonials from a diverse 52-drug pharmacopeia. Using large language models (i.e. BERT) and 11,816 publicly-available testimonials, we predicted 28-dimensions of sentiment across each narrative, and then validated these predictions with adjudication by a clinical psychiatrist. BERT was then fine-tuned to predict biochemical and demographic information from these narratives. Lastly, canonical correlation analysis linked the drugs' receptor affinities with word usage, revealing 11 statistically-significant latent receptor-experience factors, each mapped to a 3D cortical Atlas. These methods elucidate a neurobiologically-informed, sequence-sensitive portrait of drug-induced subjective experiences. The models' results converged, revealing a pervasive distinction between the universal psychedelic heights of feeling in contrast to the grim, mundane, and personal experiences of addiction and mental illness. Notably, MDMA was linked to "Love", DMT and 5-MeO-DMT to "Mystical Experiences" and "Entities and Beings", and other tryptamines to "Surprise", "Curiosity" and "Realization". ML methods can create unified and robust quantifications of subjective experiences with many different psychoactive substances and timescales. The representations learned are evocative and mutually confirmatory, indicating great potential for ML in characterizing psychoactivity.

Learner Experiences of Preceptor Self-Disclosure of Personal Illness in Medical Education.

The notion of physician invulnerability to illness contributes to the ongoing marginalization of physicians with personal experiences of illness and complicates professional identity development in medical learners. As such, physician self-disclosure of lived experiences as patients has seen an increasing role in medical education. Existing literature, centered on mental health, has characterized the positive effect of physician discussion of experience with mental illness on medical students and residents. However, the ways learners process and understand physician illness stories beyond this context and their use in education remain unclear. This study aimed to explore undergraduate medical students' perspectives on physician illness discussions of both physical and mental illness, including their perceptions of its use as a pedagogical tool. This qualitative study followed an interpretive descriptive design using activity theory as a sensitizing concept. Semistructured interviews with medical students were conducted between January and April 2022 at McMaster University in Hamilton, Ontario, Canada. The authors analyzed transcripts using reflexive thematic analysis. Twenty-one medical students participated in interviews. Although rare, self-disclosure conversations occurred across varied settings and addressed diverse aspects of illness experiences. Discussions involved teaching of pathophysiology, career advice, and wellness guidance. Five themes were developed: the opposition of physicianhood, patienthood, and situating the learner identity; invisibility and stigmatization of physician illness; impact of preceptor stories on learners' relationship with medicine; challenging the "rules" of physicianhood; and situating self-disclosure in medical education. Students strongly appreciated physician self-disclosure conversations. Self-disclosure can act as an effective pedagogical tool by fostering expansive learning among medical students. Further research is necessary to explore physician perspectives and supports for self-disclosure in education.

Structural and Psychosocial Challenges Among Underserved Patients Receiving Hemodialysis During and Beyond the COVID-19 Pandemic: A Qualitative Study

Racial and ethnic minority groups in the United States are disproportionately affected by chronic kidney disease and progressive kidney failure and face significantly more socioeconomic and psychosocial challenges. However, how such patients' social environment and stigmatization shape their illness experiences and abilities to cope before and during the coronavirus disease 2019 (COVID-19) pandemic has not been well documented, even as social scientific research predicts these groups' exponential vulnerability. Qualitative study using semistructured interviews to elicit individual patient narratives about their personal illness experiences before and during the COVID-19 pandemic, any challenges they faced, and their sources of support. Using purposive sampling, we recruited 20 adult patients receiving maintenance hemodialysis from centers affiliated with a safety-net hospital in Boston, Massachusetts. Interviews were audiotaped, transcribed, and analyzed using thematic content analysis to identify patients' challenges and supports before and during the pandemic. Of the 20 patients in the study, 9 were women, and 18 self-identified as Black or African American. Three main themes emerged, whereby most patients described: (1) stigma and stigmatization as a central element of their life experience; (2) the pandemic as a difficult experience but not a complete rupture from their prepandemic life; and (3) social networks, particularly family, friends, and religious communities, as sources of support crucial to coping with their debilitating illness. Whether the findings apply to other settings is unknown, as participants were recruited from centers in a single safety-net urban hospital setting. Psychosocial and environmental factors, including institutional racism and stigmatization, play significant roles in amplifying the burdens shouldered by racial and ethnic minority individuals with kidney disease who now also face the COVID-19 pandemic that has since turned endemic. The results of this study can inform the development of policy interventions aimed at alleviating tensions and structural conditions that impinge on kidney disease patients' wellbeing and health outcomes. Members of racial and ethnic minority groups in the United States experience the highest rates of progressive kidney failure and face significantly more socioeconomic and psychosocial challenges. We interviewed 20 patients who receive maintenance hemodialysis treatment from centers affiliated with a safety-net hospital. Patients described stigmatization as a central element of their life experience and the pandemic as a difficult challenge (but not a complete rupture) that added to their struggles with illness-related, race-related, and class-related stigmas. Social networks, particularly family, friends, and religious communities, are key sources of support crucial to coping with illness. Findings from this study can inform health care providers and community workers and guide the development of policy interventions to provide better support for these patients.

Research Directions for Leveraging and Supporting the Lived Experience of Mental Illness within Psychology.

This paper explores the lived experience of mental illness within the field of psychology across higher education and the mental health workforce. There is a high prevalence of mental health issues among psychology students and practitioners, and it is critical not only to provide support for these populations, but also to acknowledge the value of leveraging their lived experience within their education and practice. There has been increased interest in and advocacy for the involvement of those with lived experience of mental illness within mental healthcare service provision to improve patient experiences and outcomes. However, there have been limited acknowledgement and research regarding the role of psychologists with personal lived experiences of mental illness, and how to leverage this experience. Further, there are challenges faced by both psychology students and practising psychologists with lived experience that act as barriers to leveraging their unique skills and experiences. Psychology students with lived experience face stigma, inadequate support, and incongruence between the course material and their personal experiences. Similarly, practising psychologists with lived experience encounter stigma and isolation, indicating the need for a culture change that promotes transparency and understanding. The paper calls for research in five key directions to provide evidence that can be used to support and leverage lived experience in psychology.

A Market of Lived Experience-User Involvement and the Commodification of Personal Experiences of Mental Illness.

Working actively to engage service users in participatory practices is both a policy expectation and a moral imperative for mental health social workers in contemporary Western mental health care. Recent research suggests that such practices of service user involvement are becoming increasingly individualised and driven by market logic. Based on an ethnographic study within a Swedish public psychiatric organisation, this article applies the concept of commodification to examine this trend. By showing how the practice of user involvement takes the form of a market where personal narratives and experiences of mental health problems are bought and sold as commodities, the analysis illuminates how market logic permeates the everyday practice of user involvement. One consequence of this commodification is that user organisations, as well as individual service users, are restricted in their role as independent actors pursuing their own agenda, and instead increasingly act on behalf of the public and as providers of personal experiences. While it is vital that service user perspectives are heard and recognised within mental health services, mental health social workers need to be aware of the risks of commodifying lived experience. When attention is directed to individual experiences and narratives, there is a risk that opportunities to advocate on behalf of the user collective as a whole and speak from a more principled and socio-political standpoint are lost. In addition, the commodification of personal experience tends to rationalise and privilege user narratives that conform to the dominant institutional logic of the mental health organisation, while excluding more uncomfortable and challenging voices, thereby undermining the ability of service users to raise critical issues that do not align with the interests of the mental health organisation.

A scoping review of studies examining mental health literacy among Arabs worldwide.

There is growing interest in Mental health literacy (MHL) worldwide, given its important role in overcoming barriers to service use and reducing mental health disparities. However, little is known about MHL among Arabs. We conducted a scoping review to examine MHL levels and correlates among Arabs in both Arab and non-Arab countries, based on Jorm's MHL framework. We conducted a scoping review based on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, using six electronic databases: PubMed, PsycINFO, CINAHL, Soc Index, Web of Science, and Scopus. Data were summarized and synthesized. Nine studies examining MHL among Arabs met our inclusion criteria. Seven of them used a quantitative cross-sectional design. Four studies were conducted in Arab, and five were in non-Arab countries. Five studies were conducted among university students. The studies included indicate moderate to high levels of MHL. Higher MHL was associated with female gender, personal experience of mental health illness, and with help-seeking behaviours. Our review shows a significant lack of empirical studies on Arabs' MHL. These findings should be considered as a call for action for public health researchers, mental health workers, and policymakers to prioritize research in this field.

Patient identity narratives through the cultural formulation interview in a New York City outpatient clinic.

Anthropologists have critiqued cultural competence programs in medical settings while introducing mental health clinicians to social theories on culture for practice. We explore how patients articulated narratives about themselves and how clinicians responded to such narratives through an intervention known as the Cultural Formulation Interview that anthropologists have helped develop. We conducted over 500 hours of fieldwork from 2014 to 2019 at an outpatient clinic in New York, analyzing multiple data (participant observation, medical records, patient-clinician sessions, and individual debriefing interviews) in a trial joining clinical and ethnographic methods. Our study enrolled 45 patients and six clinicians, yielding 117 patient-clinician appointments and 98 debriefing interviews. Most patients differed in how they presented their identities through demographic forms and discussed them in sessions with their clinicians. Two-thirds of the patients drew connections between their personal identities and experiences of mental illness. These results reveal why cultural identities should not be taken for granted in clinical settings.

Personal experience of mental illness and stigma

Personal experience of mental illness and stigma

The relationship between personal and interpersonal mental health experiences and stigma-related outcomes in Hong Kong

Previous research indicates that personal mental health experiences (e.g. one's current mental health status) and interpersonal mental health experiences (e.g. one's familiarity with someone with mental illness) are associated with stigma-related outcomes. These outcomes include knowledge, attitudes and desire for social distance from people with mental illness. To explore the extent to which current personal mental health status and familiarity with mental illness predict stigma-related outcomes in Hong Kong. Data were drawn from a larger research project examining mental well-being in Hong Kong citizens. Citizens (N = 1010) aged ≥18 years were surveyed between August and September 2021. Multiple regression analyses revealed that immediate family and friends showed better attitudinal outcomes and lower desire for social distance compared with people who did not know anyone with mental illness (all β > 1.00, all P < 0.05), whereas people with personal experience of mental illness showed higher prejudicial attitudes compared with people who did not know anyone with mental illness (β = -0.744, P = 0.016). Better current personal mental health predicted lower prejudicial attitudes (β = 0.488, P < 0.001) and mixed outcomes on different realms of mental health knowledge. Cultural concerns surrounding 'saving face' and emphasis on collectivistic values may explain the nonlinear relationship between personal and interpersonal mental health experiences and stigma-related outcomes. Future anti-stigma interventions should tailor their approaches to the needs of people with different levels of familiarity with mental illness and include efforts to support the mental health of the overall population.

Biographical dialectics: The ongoing and creative problem solving required to negotiate the biographical disruption of chronic illness

Here we propose the term ‘biographical dialectics’ as a sister term to ‘biographical disruption’ to capture the ongoing problem solving that characterises the lives of many people living with life limiting chronic illnesses. The paper is based on the experiences of 35 adults with end-stage kidney disease (ESKD) in receipt of haemodialysis. Photovoice and semi-structured interviews showed that ESKD and the use of haemodialysis was widely agreed to be biographically disruptive. In talking about and showing disruption through photographs the participants' ongoing problem solving was universal across their diverse experiences. ‘Biographical disruption’ and Hegalian dialectical logic, are drawn on to make sense of these actions and to further understand the personal and disruptive experience of chronic illness. Based on this, ‘biographical dialectics’ captures the work that is required to account for and manage the enduring and biographical impact of chronic illness that follows the initial disruption of diagnosis and continues as life progresses.

Who am I? The identity crisis of mental health professionals living with mental illness.

WHAT IS KNOWN ON THE SUBJECT?: Large numbers of mental health professionals live with their own mental health challenges. Despite working in mental health care, they can experience stigma in the workplace. Mental health professionals with lived experience of mental illness can find it a challenge to integrate their identities as both mental health professional and mental health service user. There are currently limited options available to them. WHAT THE PAPER ADDS TO EXISTING KNOWLEDGE?: This is a personal reflection from a mental health nurse and lecturer, who lives with a severe and enduring mental illness. It offers a lived experience account of the identity struggles of a mental health professional living with a mental illness. This article attempts to redefine the identity of professionals with personal lived experience in a more positive manner. They can be valued and celebrated for their unique perspective on mental illness and mental health care. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: There remains a stigma attached to people living with mental health conditions. This article challenges some of this stigma. It will empower and encourage other health professionals with lived experience to embrace all aspects of their identity with authenticity and courage. ABSTRACT: There are growing numbers of mental health professionals with their own lived experience of mental illness. This is both in part due to increased visibility and openness, and students embarking on professional courses motivated by their own personal mental health history. The somewhat limited research in this area highlights the difficulty practitioners have in navigating this distinct identity. There are limited options, including a wounded healer, an impaired professional and professional survivor. All have their limitations. We need to revise the conceptualisation of mental health professionals with personal lived experience of mental illness. Our identity needs to be celebrated and valued, as are the roles of peer support worker and expert by experience. Through personal reflection, I describe my own challenges in negotiating my identity as a mental health nurse, lecturer, and service user. My solution is to embrace authenticity and havethe courage to stand in vulnerability and strength, embracing all aspects of myself. I call for others to do the same.

Stigma towards patients with mental illness: An online survey of United States nurses.

People with mental illness experience significant health disparities, including morbidity and premature mortality. Evidence suggests that stigma is a contributing factor to these observed inequities. The tripartite conceptualization of stigma proposes that three problems underlie stigma: problems of knowledge (ignorance), attitudes (prejudice) and behaviour (discrimination). There is limited prior research concerning stigma towards mental illness among nurses in the United States (US). The aims of this study were to assess stigma among US nurses towards patients with mental illness, compare the stigma expressed by nurses working in medical/surgical settings with mental health settings, and identify factors associated with stigma. Participants were recruited online from national professional nursing organizations in the US. We collected demographic data and administered measures of mental health stigma and stigma-related mental health knowledge. Mental health nurses demonstrated comparatively lower levels of stigma and higher levels of knowledge than the medical/surgical nurses. Nursing speciality and personal contact with mental illness were the most significant predictors of stigma and knowledge. Knowledge was found to partially mediate the relationship between nursing speciality and stigma. We found support for the 'contact hypothesis', that is, having a personal experience of mental illness or a friend or family member who has a mental illness is associated with lower stigma towards mental illness. These findings support the development of contact-based and educational anti-stigma interventions for nurses in order to reduce stigma towards mental illness.

Why do many children who are hard of hearing not use remote microphones to compensate for their hearing loss?

ObjectivesThe aim of the study is to explore parents' reasons for not acquiring remote microphones that would compensate for their child's hearing loss and why some children do not use these devices even after they are purchased. BackgroundThe benefit of remote microphones for better understanding speech has been proven by multiple studies. Consistent with the research, there is an official recommendation that all children who are hard of hearing should be considered as potential candidates for remote microphone systems in classrooms in Western countries, but in the Czech Republic, only a relatively small number of children use them. Therefore, it is important to focus on the reasons why parents do not buy such devices for their child and why some children do not use an already acquired device. MethodsData from 41 semi-structured interviews were collected and analysed using the DIPEx methodology (personal experiences of health and illness), which involves rigorous analysis of narrative interviews of people with particular conditions chosen to represent the widest practicable range of experiences. ResultsParents report multiple barriers to buying remote microphones: insecurity about the right moment, financial reasons, a lack of information and the child's refusal to use them. The reasons why children do not use such devices despite their being purchased are the reluctance of children and teachers and the low perceived benefit of remote microphones. ConclusionsThese barriers have to be taken into consideration by audiologists, policymakers and other stakeholders when addressing medical, educational and social systems supporting children who are hard of hearing as well as their families. Socio-political measures, improved systems of support for children who are hard of hearing and direct work with families can reduce these barriers.

Investing in a Research Workforce With Personal Experience of Serious Mental Illness

This Viewpoint argues that the involvement of individuals with lived experiences of psychosis in research leadership positions has the potential to innovate and advance the treatment of individuals with serious mental illness.

“The chip in a perfect piece of pottery”: An ethnographic study of parents’ online narratives when a child has cancer

In recent years, the Internet has increasingly been used to communicate about personal health, illness, and caregiving experiences. For instance, parents of children with cancer share personal accounts online describing their family experiences and emotions as they navigate childhood cancer. These online accounts offer insight into the nature of parents’ experiences and narrative structures adopted to communicate and find meaning. Using a narrative methodology and virtual ethnographic methods grounded in interpretivist and constructivist principles, we examined 23 online accounts of varying lengths shared publicly by Canadian parents of children with cancer. Analysis focused on the content and structure of accounts, identifying common experiences and forms of narration. Three dominant narrative types emerged related to the Idealized Child, Faith, and Failure. To meaningfully convey commonalities across the sample and uphold confidentiality, a Fabrication approach (Markham, 2012) was adopted to develop composites representing the three narrative types, which illuminate family experiences and meaning-making processes. The findings can enhance understanding of family experiences of childhood cancer and inform psychosocial interventions that assist healthcare teams with supporting families of children with cancer more effectively.

Anticipated Self and Public Stigma in Suicide Prevention Professionals.

BackgroundStigma about mental illness—both public and self—is one of the most important factors hindering help-seeking. Stigma can occur during an acute episode of mental illness or be anticipatory. One group affected by stigma, but often neglected, is mental health professionals. This study examined the anticipated form of mental-illness and help-seeking self-stigma and the anticipated form of public stigma of suicidal behavior among members of the International Association for Suicide Prevention. We hypothesized that suicidologists with a history of suicidality or mental illness would anticipate greater stigma from the public and self.MethodsThe study received ethical approval from the Commission for Medical Ethics of the Republic of Slovenia. Data from 83 participants who completed an online survey (February to May 2020) with informed consent were analyzed using path analysis. We tested a model predicting help-seeking self-stigma based on (i) personal experience of mental illness using anticipated self-stigma of mental illness as a mediating variable and (ii) history of suicidal behavior using anticipated public stigma of suicidal behavior as a mediating variable.ResultsPersonal experience of mental illness predicted anticipation of self-stigma of mental illness (β = 0.26). History of suicidality predicted anticipation of public stigma of suicidal behavior (β = 0.29). Anticipated self-stigma of mental illness proved to be a stronger predictor of help-seeking self-stigma (β = 0.40) than anticipated public stigma of suicidal behavior (β = 0.07).ConclusionsIt is important to intentionally support the mental health of suicide prevention professionals, as they are not immune to mental illness or various types of stigma. Because our sample was small and diverse, further research to better understand stigma concepts in this population is warranted.

A Good Time to Be Born

A Good Time to Be Born

Multiplicity and dynamics of social representations of the COVID-19 pandemic on Chinese social media from 2019 to 2020

Documenting the emergent social representations of COVID-19 in public communication is necessary for critically reflecting on pandemic responses and providing guidance for global pandemic recovery policies and practices. This study documents the dynamics of changing social representations of the COVID-19 pandemic on one of the largest Chinese social media, Weibo, from December 2019 to April 2020. We draw on the social representation theory (SRT) and conceptualize topics and topic networks as a form of social representation. We analyzed a dataset of 40 million COVID-19 related posts from 9.7 million users (including the general public, opinion leaders, and organizations) using machine learning methods. We identified 12 topics and found an expansion in social representations of COVID-19 from a clinical and epidemiological perspective to a broader perspective that integrated personal illness experiences with economic and sociopolitical discourses. Discussions about COVID-19 science did not take a prominent position in the representations, suggesting a lack of effective science and risk communication. Further, we found the strongest association of social representations existed between the public and opinion leaders and the organizations’ representations did not align much with the other two groups, suggesting a lack of organizations’ influence in public representations of COVID-19 on social media in China.