Disruption and Improvisation: Experiences of Loneliness for People With Chronic Illness.

Chronic illness can disrupt many aspects of life, including identity, social relationships, and anticipated life trajectories. Despite significant scholarship on chronic illness, we know less about the ways in which chronic illness impacts feelings of loneliness and how people with chronic illness deal with loneliness. Drawing on concepts of biographical disruption and liminality and data from walking and photo-elicitation interviews with 14 people, we aimed to explore how people with chronic illness experience loneliness in their everyday lives. Tracing how past and present illness experiences are implicated in the lived experience of loneliness and the strategies people use to manage loneliness, our findings illustrated that being caught in a liminal state where participants struggled to maintain and adapt to a new normality in life with chronic illness was a central thread woven throughout their experience of loneliness. Although participants drew on their personal agency and adopted strategies to account for, manage, and limit disruptions from chronic illness and loneliness, they found that their strategies were not completely effective or satisfactory. Chronic illness and loneliness continue to be largely considered as an individual's problem, limiting opportunities for people with chronic illness who experience loneliness to seek support and social connection. Our research highlighted that chronic illness and loneliness need to be acknowledged as both a personal and collective problem, with multi-level responses that involve individuals, communities, and society.

"The Rest of my Childhood was Lost": Canadian Children and Adolescents' Experiences Navigating Inflammatory Bowel Disease.

Children and adolescents with Inflammatory Bowel Disease (IBD) face significant and unique challenges related to their condition. The aim of this study was to better understand some of these challenges, and to explore how Canadian youth respond to them. We interviewed 25 pediatric patients with IBD, ranging in age from 10-17, to find out about their illness experiences. Using a thematic analysis, we discerned three themes: challenges related to diagnosis, making sense of change, and navigating sociability. Taken together, they paint a picture of young people facing great uncertainty prior to diagnosis, pronounced changes to selfhood as they make lifestyle adjustments, and facing difficulties with the implications of reduced sociability because of their disease. We conclude by providing recommendations for the development of resources aimed at helping newly diagnosed pediatric patients navigate these issues.

The Lived Experience of Patients and Family Caregivers in Managing Pneumoconiosis.

The daily challenges of patients with pneumoconiosis and their caregivers in living with and providing care for this disease remain unexplored. As guided by the interpretive description, we found that pneumoconiosis patients suffered from highly anxiety-provoking symptoms and physical debilitation, which evoked high levels of distress and sense of impending death. The reduced functional capacity disrupted patients' role functioning and self-esteem. The perceived stigma of the embarrassing symptoms and treatments further disrupted their self-concept and social lives. Providing care for pneumoconiosis patients was demanding and burdensome, which jeopardized family caregivers' physical, emotional, and social well-being, and the relationship strain with the patients added further frustration to them. The perceived caregiving gain supported them to fully engage in daily caregiving. To improve the well-being of pneumoconiosis patients, a comprehensive empowerment-based dyadic care model is required to optimize adaptive behavioral changes and self-esteem, and improve self-efficacy in disease management for this cohort.

Using Liminality and Subjunctivity to Better Understand How Patients With Cancer Experience Uncertainty Throughout Their Illness Trajectory.

Uncertainty is a central theme in the illness experiences of older cancer patients throughout their illness trajectory. Mishel's popular theory on uncertainty during illness approaches uncertainty as an outcome and is characterized by the patient's inability to find meaning in illness events. This study used the concepts of liminality and subjunctivity to explore uncertainty throughout the illness trajectory of cancer patients. We interviewed 18 older (age range = 57-92 years) patients with breast cancer or gastro-intestinal cancer 3 to 4 years post diagnosis. Our analysis is based on the QUAGOL guide that draws on elements of grounded theory such as constant comparison. We found that liminality and subjunctivity provide a useful frame for understanding uncertainty with a specific focus on its productive potential and meaning making. Health care professionals should be open to acquiring a complete picture of patients' diverse and dynamic experiences of uncertainty in the different stages of their illness trajectory.

Sharing lives, sharing bodies: partners negotiating breast cancer experiences.

By drawing on Jean-Luc Nancy's philosophy of ontological relationality, this article explores what it means to be a 'we' in breast cancer. What are the characteristics-the extent and diversity-of couples' relationally lived experiences of bodily changes in breast cancer? Through analyzing duo interviews with diagnosed women and their partners, four ways of sharing an embodied life are identified. (1) While 'being different together', partners have different, albeit connected kinds of experiences of breast cancer. (2) While 'being there for you', partners take care of each other in mutually dependent ways. (3) While 'being reconnected to you', partners (re-)relate to each other through intimacy and sexuality. (4) While 'being like you', partners synchronize their embodied daily lives to one another, sometimes up to the point that the self cannot be distinguished from the other anymore. These ways reveal that being a 'we' involves complex affective, bodily encounters in which the many fault lines that both separate partners into individual selves and join them together as a unity are continuously reshaped and negotiated. Being a 'we' may be understood as something we have to do. Therefore, in being true to the legacy of Nancy, we argue at the end of this article for a sensible praxis of sharing a life and body, particularly in breast cancer.

Patients' perspectives on hemodialysis vascular access: a systematic review of qualitative studies.

BACKGROUND: Delayed creation of vascular access may be due in part to patient refusal and is associated with adverse outcomes. Concerns about vascular access are prevailing treatment-related stressors for patients on hemodialysis therapy. This study aims to describe patients' perspectives on vascular access initiation and maintenance in hemodialysis. STUDY DESIGN: Systematic review and thematic synthesis of qualitative studies. SETTING & POPULATION: Patients with chronic kidney disease who express opinions about vascular access for hemodialysis. SEARCH STRATEGY & SOURCES: MEDLINE, EMBASE, PsycINFO, CINAHL, reference lists, and PhD dissertations were searched to October 2013. ANALYTICAL APPROACH: Thematic synthesis was used to analyze the findings. RESULTS: From 46 studies involving 1,034 patients, we identified 6 themes: heightened vulnerability (bodily intrusion, fear of cannulation, threat of complications and failure, unpreparedness, dependence on a lifeline, and wary of unfamiliar providers), disfigurement (preserving normal appearance, visual reminder of disease, and avoiding stigma), mechanization of the body (bonded to a machine, internal abnormality, and constant maintenance), impinging on way of life (physical incapacitation, instigating family tension, wasting time, and added expense), self-preservation and ownership (task-focused control, advocating for protection, and acceptance), and confronting decisions and consequences (imminence of dialysis therapy and existential thoughts). LIMITATIONS: Non-English articles were excluded. CONCLUSIONS: Vascular access is more than a surgical intervention. Initiation of vascular access signifies kidney failure and imminent dialysis, which is emotionally confronting. Patients strive to preserve their vascular access for survival, but at the same time describe it as an agonizing reminder of their body's failings and "abnormality" of being amalgamated with a machine disrupting their identity and lifestyle. Timely education and counseling about vascular access and building patients' trust in health care providers may improve the quality of dialysis and lead to better outcomes for patients with chronic kidney disease requiring hemodialysis.

The illness experience of middle-aged men with oral cancer.

AIMS AND OBJECTIVES: To explore the essence of the illness experiences of middle-aged men with oral cancer. BACKGROUND: Having oral cancer creates great challenges in the lives of middle-aged men and their families. Understanding patients' experiences provides a sound basis for patient-centred and individualised care. Research is limited regarding the illness experience of middle-aged men with oral cancer with regard to facing both the invasion of disease and the responsibilities of middle age. DESIGN: A phenomenology approach was used. METHODS: Nine men diagnosed with oral cancer within one year were recruited during 2009 and 2010. Data were collected through individual in-depth interviews and analysed using Colaizzi's phenomenological analysis procedures. RESULTS: The following five themes emerged from the patterns of categorised interview data: the psychological journey in facing oral cancer, the question of how patients can control their disease as well as the sequelae of cancer treatment, the continuous disturbance and turmoil resulting from the disease, the appreciation of the support from family and friends, and the ability to learn to actively face the future. CONCLUSIONS: Patients with oral cancer experienced tremendous physical, psychosocial and financial challenges. Although burdened with multiple stressors, these middle-aged men were able to learn from their experiences and exhibit positive growth in life. RELEVANCE TO CLINICAL PRACTICE: Patients with oral cancer have to constantly adjust to the impact of their disease. The study results may serve as a reference for improving clinical practice and the quality of care among patients with oral cancer. Cancer care is multidimensional and holistic. Healthcare professionals should develop a set of plans by which patients receive complete medical care and support, as well as assistance from professionals and family members, as their treatment progresses to help patients face the challenges of cancer.

Contesting misrecognition online: Experiences of epistemic in/justice by vloggers with contested illnesses.

Contested illnesses, such as fibromyalgia, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and chronic Lyme disease (CLD), are surrounded by polemic debates regarding their etiology, symptomology, treatment, and even their existence. People who suffer from these contested illnesses arguably also suffer from "epistemic injustice." This concept, coined by the philosopher Miranda Fricker, captures how people's knowledge may be discredited because of identity prejudices. In our paper, this concept is used to understand how seven Dutch women with contested illnesses experience the emancipatory potential of their vlogging practices. Our findings show how these women understood their vlogging as a means to break with epistemic smothering, understood as the propensity to cater ones testimony to one's audience (Dotson, 2011), and as a means to attain and enhance epistemic justice. However, our findings also show how vlogging about contested illnesses did not seem to allow these women to fully break with their epistemic smothering practices, and that the ableist design and gendered norms of YouTube were experienced as obstacles to attaining epistemic justice. We conclude that, even though social media do seem to hold emancipatory potential for these women, the experiences of individual users are diverse and ambiguous.

The diagnostic odyssey: insights from parents of children living with an undiagnosed condition.

BACKGROUND: People living with rare disease often have protracted journeys towards diagnosis. In the last decade, programs have arisen around the world that are dedicated to ending this 'diagnostic odyssey', including the Undiagnosed Diseases Program Western Australia (UDP-WA), which has a focus on finding diagnoses for children and young adults. To explore the lived experience of the diagnostic journey semi-structured interviews were conducted with parents of 11 children at commencement of their involvement in the UDP-WA. RESULTS: Thematic analysis revealed three main themes that captured parents' experiences and perspectives. Parents reported (i) the need to respond to significant care needs of their children, which span not only the health system but other systems such as education and disability services. In doing so, parents become the navigator, expert and advocate for their children. Meanwhile, parents are on (ii) the diagnostic odyssey-the rollercoaster of their journey towards diagnosis, which includes various names applied to their child's condition, and the impact of no diagnosis. Parents described their views on (iii) the value of a diagnosis and the outcomes they expect to be associated with a diagnosis. CONCLUSION: Analysis showed an overall significant perceived value of a diagnosis. Our study provides new perspectives on the concept of diagnosis and indicates that parents may benefit from supports for their child's care needs that are beyond the scope of the UDP-WA.

Qualitative content analysis of cultural formulations of clients suffering from conversion disorder in North India.

Introduction: Conversion disorder is easily one of the least understood neuropsychiatric disorders. There is a great deal of ambiguity with respect to symptom presentation, assessment, etiology, diagnosis, and treatment. However, a common clinical practice associated with the assessment and management of the conversion disorder is the evaluation of a stressor. Recent studies in India have indicated that family stressors are the most frequent. Sociocultural aspects of the client's environment and the illness experience thus form an important part of the client's diagnostic formulation. These aspects also determine help-seeking, treatment adherence, and thus, the outcomes. Materials and Methods: Fifteen clients suffering from conversion disorder in a tertiary mental health setting in North India, recruited through purposive sampling, were interviewed in-depth. Data were elicited using the cultural formulation interview (CFI). Qualitative content analysis was carried out. Results: The content analyses summarized the cultural experiences of clients suffering from conversion disorder under structured domains of the CFI. The results are presented in tables along with content examples and represent individual client experiences and conceptualizations of diagnosis, treatment, and implications of suffering from conversion disorder. The findings of this study aim to describe and highlight the cultural experiences of clients with respect to their psychopathology. The most striking recurrent theme in the cultural formulations were the lack of understanding of the nature and cause of illness both in the client as well as the clinician, and therefore a lack of trust and hope in the treatment. Conclusion: The findings of the current study shed light on the cultural experiences of clients with conversion disorder. These findings emphasize the need for clinicians to incorporate the individual and collective cultural experiences of clients and cultural sensitivity in addition to the clinical diagnoses. The Cultural Formulation Interview of the DSM-5 was found to be very helpful in this regard and we encourage its use by clinicians, especially with clients suffering from conversion disorder, given the strong influences of socio-cultural experiences on psychopathology as well as the intervention.

'Walking in the shoes of our patients': a scoping review of healthcare professionals learning from the simulation of patient illness experiences.

BACKGROUND: Health professionals who have experienced ill-health appear to demonstrate greater empathy towards their patients. Simulation can afford learners opportunities to experience aspects of illness, but to date, there has been no overarching review of the extent of this practice or the impact on empathic skills. OBJECTIVE: To determine from the evidence-what is known about simulation-based learning methods of creating illness experiences for health professions and the impact on their empathic skills. STUDY SELECTION: Arksey and O'Malley's methodological framework informed our scoping review of articles relevant to our research question. Three databases (MEDLINE, Embase and Web of Science) were searched, and a sample of 516 citations was screened. Following review and application of our exclusion criteria, 77 articles were selected to be included in this review. FINDINGS: Of the 77 articles, 52 (68%) originated from the USA, 37 (48%) of studies were qualitative based and 17 (22%) used a mixed-methods model. Of all the articles in our scope, the majority (87%) reported a positive impact and range of emotions evoked on learners. However, some studies observed more negative effects and additional debriefing was required post-simulation. Learners were noted to internalise perceived experiences of illness and to critically reflect on their empathic role as healthcare providers. CONCLUSIONS: A diverse range of simulation methods and techniques, evoking an emotional and embodied experience, appear to have a positive impact on empathy and could be argued as offering a complementary approach in healthcare education; however, the long-term impact remains largely unknown.

Experience and knowledge of Lyme disease: A scoping review of patient-provider communication.

There has been limited research on patient-provider communication dynamics regarding Lyme disease (LD) diagnosis and treatment. Evidence suggests communication in the clinical encounter improves when both patient and healthcare provider (HCP) have concordant orientations (or beliefs) on discussed topics, resulting in higher patient satisfaction and care outcomes. The purpose of this scoping review was to characterize and summarize current research findings on patient and provider knowledge and experiences regarding LD - two factors that may influence the orientation of both patients and providers toward LD in the clinical setting. None of the articles included in the review specifically addressed patient-provider interaction and relationships as the main objective. However, the existing literature indicates notable HCP uncertainty regarding LD diagnosis, treatment, and applied practice patterns. Current research also describes limited knowledge of LD among patient populations and a high prevalence of negative perceptions of care received in mainstream healthcare settings among individuals with persistent symptoms. We identified a critical gap in research that seeks to understand the dynamic of patients and HCPs communicating on the topic of LD in the clinical setting. Future research may identify opportunities where the patient-provider communication dynamic can be improved.

Maternal Mental Health under COVID-19 Pandemic in Thailand.

Numerous nations have implemented lockdown measures in response to the COVID-19 pandemic. As a consequence of the lockdown on daily living, social participation, and health service accessibility, vulnerable people, for example, new mothers, may experience an increase in mental health problems. This cross-sectional survey was conducted to investigate the impact of the COVID-19 pandemic lockdown on Thai new mothers and the variables affecting their mental health. The survey data were collected from 903 Thai mothers with infants aged 0-12 months using an online platform and a face-to-face interview questionnaire survey between 17 July and 17 October 2020, during the first nationwide COVID-19 lockdown period. For the final analysis, there were 862 participants who completed all of the questions. The full exploratory analysis was performed by multivariable linear regression to identify the variables influencing maternal mental health. Our study demonstrated that new mothers reported feeling a high extent to some extent of worry (44.9%), increased appetite (40.4%), becoming easily annoyed or irritable (39.1%), and feeling down (33.5%), whereas 82.7% felt able to cope with the first lockdown situation. Practiced relaxation techniques were associated with positive maternal mental health (adjusted ß = 1.05, 95% CI 0.57 to 1.52, p < 0.001). The perceived impact of the COVID-19 lockdown was on the household's ability to pay for rent, to make mortgage payments (adjusted ß = -1.59, 95% CI -2.87 to -0.36, p = 0.011), the household's ability to pay for other essentials, such as utilities and medication (adjusted ß = -1.99, 95% CI -3.16 to -0.81, p = 0.001), household crowding after lockdown (adjusted ß = -3.46, 95% CI -4.86 to -2.06, p < 0.001), and not going outside or doing outdoor activities (adjusted ß = -2.22, 95% CI -3.35 to -1.08, p < 0.001). These impacts were significantly associated with negative mental health. In conclusion, our results emphasize the critical need for continuous monitoring of maternal mental health and developing an effective response strategy and activity for promoting maternal mental health under the stress of repetitive lockdowns and increased economic pressures.

Regaining normality: A grounded theory study of the illness experiences of Chinese patients living with Crohn's disease.

BACKGROUND: Crohn's disease is a chronic condition causing inflammation of the lining of the digestive system. Individuals suffering from this illness encounter various challenges and problems, but studies investigating the illness experiences of patients with Crohn's disease in East Asian countries are scarce. OBJECTIVES: The objective of this study was to explore the illness experiences of patients with Crohn's disease in China and construct an interpretive understanding of these experiences from the perspective of the patients. DESIGN: A constructivist grounded theory approach was used to develop a theoretical understanding of illness experiences. SETTINGS: This study included participants from the following four provincial capital cities in China: Hangzhou, Nanjing, Guangzhou, and Wuhan. PARTICIPANTS: Purposive sampling and theoretical sampling were used to select Chinese patients living with Crohn's disease. METHOD: Between February 2015 and January 2018, audio-recorded interviews were conducted. The data analysis included initial coding, focused coding, and theoretical coding using the constant comparative method and memo writing. RESULTS: Thirty-one participants were included in the study. "Regaining normality" was identified as the core category. The following four categories were conceptualized: comparing, struggling, reflecting, and realizing. Comparing refers to distinguishing the similarities and differences or evaluating the superiority and inferiority of similar things. Comparisons could occur between patients with Crohn's disease and healthy individuals or between patients and people in similar or more unfortunate situations. Struggling reflects the dilemmas experienced by patients with Crohn's disease in acknowledging their patient identity and informing others of this identity. Reflecting refers to the consideration of the values and life attitudes held by patients before and after the diagnosis of Crohn's disease. Realizing involves patients gaining a deeper understanding of the suffering associated with Crohn's disease after experiencing the illness. CONCLUSION: This study offers an interpretive understanding of the illness experiences of patients with Crohn's disease. Regaining normality represents the basic social psychological process. Regaining normality is related to reassessing and reconstructing the self after receiving a Crohn's disease diagnosis. This paper provides new insight into patients' lives and describes the strategies patients use to cope with the challenges and problems caused by the illness. These study findings can be used to develop future complex interventions and studies.

It's not just physical: a qualitative study regarding the illness experiences of people with facioscapulohumeral muscular dystrophy.

PURPOSE: Little is known about the illness experiences of people with Facioscapulohumeral Muscular Dystrophy (FSHD). The aim of this study was to provide insight into the illness experiences of people with FSHD in order to tailor rehabilitation programs to individual needs and expectations. METHODS: Twenty-five semi-structured interviews were conducted with people with FSHD. The interviews were audiotaped, transcribed and member checked. Computerized (MAXqda) and manual techniques were used for thematic data analysis. RESULTS: Intra- as well as extra-individual aspects play a role in the illness experiences of people with FSHD. Integrating the consequences of the diagnosis and symptoms, coping with heredity and progenity, adjusting to a decreasing independence, and the accompanying changing relationship with one's partner, are mentioned as intra-individual aspects. As extra-individual factors are the responses of the social environment, which was mentioned as well as used assistive devices, and maintaining or giving up work. CONCLUSIONS: Better understanding of the individual illness experiences, cognitions, and social context of people with FSHD can give health professionals tools to improve their care and give researchers direction for future studies to evaluate healthcare improvements from a holistic, patient-centred perspective. Implications for Rehabilitation FSHD has a major impact on people's lives. Besides the physical consequences, issues such as heredity, progenity, changing (intimate) relationships, social interactions and work should be addressed by rehabilitation professionals. Dependent on the timing of the diagnosis (early or later in life) people with FSHD could, in addition to medical consultation and physical therapy, profit from support by a social worker, occupational therapist and/or genetic Counselor for the above-mentioned themes to be addressed more extensively. It is relevant for rehabilitation professionals to become familiar with the personal characteristics and social circumstances of the patient before communicating the diagnosis and prognosis in order to individually tailor the content of the communication.

'It's definitely not Alzheimer's': Perceived benefits and drawbacks of a mild cognitive impairment diagnosis.

OBJECTIVES: To understand the perceived benefits and drawbacks of a mild cognitive impairment (MCI) diagnosis from the perspective of those living with the label. METHODS: Participants were included if they had recently (within 6 months) received a MCI diagnosis. We also recruited close family members to gain their perspectives. Each was interviewed separately with a semi-structured topic guide covering three areas: (1) experience of cognitive impairments and changes in the individual; (2) impact of cognitive impairment(s) on daily activities and social relationships; and (3) experience of the diagnosis process and living with the label. Transcribed interviews were stored in Nvivo® . Grounded theory procedures of memo writing, open coding, constant comparison, and focused coding were used to derive conceptual themes. RESULTS: Eighteen dyads were interviewed. The overarching themes surrounding diagnosis benefits and drawbacks were as follows: (1) emotional impact of the diagnosis; (2) practical benefits and limitations of the diagnosis, in terms of (a) understanding one's symptoms and (b) access to clinical support. Although participants were glad to have clinical support in place, they expressed frustration at the lack of clarity, and the lack of available treatments for MCI. Consequently, living with MCI can be characterized as an ambivalent experience. CONCLUSION: As a clinical label, MCI appears to have little explanatory power for people living with cognitive difficulties. Work is needed to clarify how clinicians and patients communicate about MCI, and how people can be helped to live well with the label. Despite an emerging body of prognostic studies, people with MCI are likely to continue living with significant uncertainty. Statement of contribution What is already known on this subject? Mild cognitive impairment is a state of cognitive decline between normal cognitive ageing and dementia. This clinical category has been an important domain of academic debate over recent years. From a clinical perspective, diagnosing MCI is a helpful way to enable communication between health professionals, and a diagnosis can be important for patients in need of support and education. However, diagnosis can be fraught with difficulties, while patients have reported significant uncertainty about the label. This study aimed to examine the perceived benefits and drawbacks of receiving a MCI diagnosis. What does this study add? The emotional impact of a MCI diagnosis is complex and raised conflicting and fluctuating emotions in our participants' accounts - most notably worry and relief. Participants were glad to have clinical support available to call on; however, they were frustrated at the lack of 'treatments' available for MCI and were often anxious to slow any cognitive decline down Health psychologists will have an important role to play in understanding and improving clinical communication about MCI.

Using others' experiences. Cancer patients' expectations and navigation of a website providing narratives on prostate, breast and colorectal cancer.

OBJECTIVE: To understand what cancer patients expect and may learn from other patients' experiences, as analyzed and sorted for presentation on a website called krankheitserfahrungen.de (meaning "illness experiences"). METHODS: Mixed methods approach including log file analyses, survey data analyses and thematic analysis of focus group discussions. RESULTS: Users highly valued the wide range of patient experiences presented. The academic leadership of krankheitserfahrungen.de made them trust the information quality. Reading, watching and listening to other cancer patients' experiences gave users a feeling of hope and confidence. Searching for persons with similar experiences was a major way of navigating the website. CONCLUSION: Patient narratives as presented on krankheitserfahrungen.de provide a helpful resource, supporting cancer patients' engagement with their disease. Having access to such research-informed accounts of everyday cancer experiences was seen as a great contribution to existing available patient information. PRACTICE IMPLICATIONS: When health information websites include experiences, they should adhere to quality standards of qualitative research and encompass a wide range, so that users are able to find patients similar to themselves. Filter options are a helpful tool. A mix of written text and videos is beneficial, as users have different preferences. The inclusion of patient photographs and video interviews facilitates authenticity and closeness.

Contrasting stories of life-threatening illness: a narrative inquiry.

BACKGROUND: Advances in science and technology have resulted in longer lives for people with life-threatening illnesses. However, little research compares the stories of people with different life-threatening illnesses. OBJECTIVES: The objectives of this study were to explore and contrast how people story and re-story life-threatening illness specifically cancer, chronic kidney disease (CKD) and HIV. DESIGN: Narrative inquiry within a social constructionist perspective was used. METHODS: A total of 113 in-depth interviews were conducted with 32 participants over a period of three years. PARTICIPANTS: Study participants included 32 people: 10 with cancer, 14 with CKD and 8 with HIV/AIDS. Participants varied in age (37-83 years old, mean=61.2 years), gender (17 men and 14 women), location (urban and rural), time post-diagnosis (median=8 years), intensity or invasiveness of treatment, and prognosis (continuous treatment, remission, cure, palliative). RESULTS: Participants described living with a life-threatening illness as a delicate balance. They focused on living their lives yet were fully and acutely aware of their own mortality. There was an undercurrent of sustained uncertainty that permeated their lives. Stories of life-threatening illness differed across the three illness groups and shifted over time as disease trajectories changed. Each disease brought specific challenges. With cancer, turning points and uncertainty were prominent. With CKD, a stealthy beginning to life-extending treatment through dialysis or transplant was evident, and with HIV, a shift from a perceived death sentence to a focus on hope and living was notable. CONCLUSIONS: Findings revealed that trajectories of illness for participants living with cancer, CKD and HIV are complex and differ markedly across the groups. Narratives shifted across all of the illness groups as participants navigated and re-storied the terrains of their life-threatening illness. Findings illuminated the need for health care providers to focus on person specific and contextualized aspects of the illness experience.

Patients' experiences of changes in health complaints before, during, and after removal of dental amalgam.

In this article, we explore how patients with health complaints attributed to dental amalgam experienced and gave meaning to changes in health complaints before, during, and after removal of all amalgam fillings. We conducted semistructured qualitative interviews with 12 participants from the treatment group in a Norwegian amalgam removal trial. Interviews took place within a couple months of the final follow-up 5 years after amalgam removal. Using the NVivo9 software, we conducted an explorative and reflective thematic analysis and identified the following themes: Something is not working: betrayed by the body, You are out there on your own, Not being sure of the importance of amalgam removal, The relief experienced after amalgam removal, and To accept, to give up, or to continue the search. We discuss the findings in the context of patients' assigning meaning to illness experiences.

"Mas não tive coragem de contar": a revelação da condição sorológica na experiência amorosa de pessoas que vivem com HIV / "But I didn't have the courage to tell": disclosure of serostatus in the love/sex life of people living with HIV

Resumo Estudo socioantropológico de abordagem qualitativa que aborda os relacionamentos amorosos de pessoas que vivem com HIV/aids (PVHA) no atual contexto de cronicidade da infecção e de restrição discursiva sobre a epidemia. A partir de narrativas breves em forma de comentários às postagens sobre experiências amorosas de PVHA publicadas em um blog pessoal, este artigo objetiva compreender os significados atribuídos às estratégias para revelação da condição sorológica e as formas de enfrentamento das reações dos parceiros amorosos diante dessa atitude. Da análise temática do material empírico emergiram duas categorias: "mas não tive coragem de contar" - o desvelar da condição sorológica; e "e do nada sumiu" - as (re)ações do outro da relação. As narrativas evidenciaram as experiências na convivência com o segredo em torno de suas condições sorológicas e os sentimentos envolvidos em sua revelação, diante da possibilidade de um relacionamento amoroso. Nesse sentido, o segredo se expressou pela inexistência da "coragem de contar" ao(à) parceiro(a). Além disso, destaca-se o significado atribuído às reações do outro perante o conhecimento da condição sorológica, apontado, principalmente, como uma "porta" que se abre e permite (ou não) a experiência amorosa.

Abstract This article presents a socio-anthropological study, of qualitative approach, that addresses love relationships of people living with HIV/aids (PLWHA) in the current context of infection's chronicity and discursive restraint on the epidemic. From brief narratives, comments on posts about loving experiences of PLWHA in a personal blog, this study aims to understand the meanings attributed to strategies for serostatus disclosure and the ways of coping with love partners' reactions facing this attitude. From the thematic analysis of the empirical material, two categories emerged: "but I didn't have the courage to tell": the unveiling of the serostatus; and "and all of a sudden disappeared": the other's (re)actions in the relationship. The narratives showed the experiences of living with the secret about the own serostatus, and the feelings involved in revealing it when dealing with the possibility of a love relationship. In this sense, the secret is expressed by the lack of "courage to tell" the partner. Moreover, we highlight the meaning attributed to the other's reaction on knowing about the serostatus, which is mainly distinguished as a "door" that opens up and allows (or not) the love experience.