How Do People With COPD Value Different Activities? An Adapted Meta-Ethnography of Qualitative Research.

Chronic Obstructive Pulmonary Disease (COPD) is a long-term condition where activities of daily living (ADLs) may be very restricted; people with COPD need to prioritize what is important to them. We conducted a meta-ethnography to understand which ADLs are valued and why, systematically searching for articles including experiences of ADLs and organizing themes from the articles into five linked concepts: (a) caring for the body, (b) caring for the personal environment, (c) moving between spaces, (d) interacting with others, and (e) selfhood across time. In addition, we identified three key aspects of personal integrity: effectiveness, connectedness, and control. We found that ADLs were valued if they increased integrity; however, this process was also informed by gendered roles and social values. People whose sense of control depended on effectiveness often found accepting help very difficult to bear; therefore, redefining control as situational and relational may help enjoyment of activities that are possible.

Living With Prophylactic ICD Therapy and the Risk of Sudden Cardiac Death: How Patients Negotiate Solutions and Problems.

Prophylactic implantable cardioverter defibrillator (ICD) therapy treats potentially lethal cardiac arrhythmias in patients who have not previously experienced such but are at considerable risk due to underlying heart disease. Most patients are unaware of their risk of sudden cardiac death (SCD) until the ICD is introduced to them. Thus, the problem of risk of death and the solution of ICD therapy are presented simultaneously. Based on ethnographic fieldwork in Danish hospitals, this article illustrates how clinicians narrate prophylactic ICD therapy as a benign therapy preventing risk of death and providing the good life. However, risk of SCD is not the most pressing problem for the patients. The article argues that the solution of ICD therapy ignores patients' experience of living with severe heart disease and introduces the risk of shock therapy. For patients, a good life does not equal absence of risk of death but a life without heart disease.

Psychosocial Response to New-Onset Diabetes as a Long-Term Effect of Allogeneic Hematopoietic Stem Cell Transplantation.

Currently, little information is available to guide health care practitioners on how to facilitate positive outcomes in individuals who develop new-onset diabetes after allogeneic hematopoietic stem cell transplantation (allo HSCT) for treatment of hematological cancers. Results from this constructivist grounded theory study provide a theoretical framework explaining the psychosocial process of change that middle-age and older adults experience when developing new-onset diabetes in this context. Two predominant factors influenced this change: treatment burden and perception of diabetes. Key findings were that participants with ongoing complications, primarily graft-versus-host disease, experienced a high degree of treatment-related burden and unclear perceptions of diabetes when compared with those with no or few post-allo-HSCT complications. These factors limited their capacity to positively respond to and self-manage their condition. Implications for practice are to thoroughly consider these two factors when developing patient-centered interventions for middle-age and older adults with new-onset diabetes after allo HSCT.

Living in Limbo: Contested Narratives of Patients With Chronic Symptoms Following Lyme Disease.

Persistent, subjective symptoms of unknown etiology following treatment for Lyme disease have been termed post- treatment Lyme disease syndrome or chronic Lyme disease (PTLDS/CLD). The objective of this study was to give primacy to the patient experience of this medically contested condition by eliciting patient illness narratives and identifying emergent issues through semistructured interviews conducted among 29 participants. We used thematic narrative analysis to identify three predominant themes: (a) Physical and social limitations lead to a "new normal" characterized by fundamental shifts of ways of being in the world, (b) disease-specific factors contribute to symptom and illness invisibility that affects social support in nuanced ways, and (c) pervasive medical uncertainty regarding PTLDS/CLD promotes an increased sense of personal responsibility for care. Similar to other contested or medically unexplained syndromes, our findings suggest that the social sequelae of PTLDS/CLD can be equally protracted as the physical effects of this illness.

Unexplained Chest Pain and Physical Activity: Balancing Between Existential Uncertainty and Certainty.

Chest pain is one of the most common complaints in medical settings, but the majority of cases have no detectable cause. Physical activity is recommended, but is one of the major avoidance behaviors in patients with coronary heart disease. The article aims at achieving an understanding of the meaning of physical activity for people with unexplained chest pain. Fifteen people were interviewed using a phenomenological hermeneutic approach, with the results revealing four themes: "awareness of the influence of previous life experiences on the decision to be physically active," "unanswered questions related to physical activity and unexplained chest pain," "intertwinement of body and mind," and "physical activity as a source of personal growth." Comprehensive understanding was formulated as "Being physically active while living with unexplained chest pain means balancing between existential uncertainty and certainty." The results are discussed in relation to capability. It is suggested that health professionals adopt a person-centered approach.

Transplant Trajectory and Relational Experience Within Living Kidney Dyads.

Living kidney donation is considered common practice across most Westernized countries. While extensive research has documented the experience of living donors, few studies have addressed the perspective of recipients, and even fewer have examined the experience of donor and recipient as an interactive dyad. In this study, our aim was to examine the reciprocal influence between donors and recipients across the transplantation process. We recruited a homogeneous sample of 10 donors and recipients, who were interviewed individually. Data were analyzed using interpretative phenomenological analysis. The presentation of results follows the stages of the transplantation process: the disease experience, the experience of offering and accepting a kidney, the screening period, the surgery, and the post-transplantation period. Results are discussed within the framework of Mauss's gift exchange theory, social roles, and altruism. This comprehensive description of the dyadic experience provides a way to frame and understand psychosocial aspects and relational implications of living renal transplantation.

Women's Construction of Embodiment and the Abject Sexual Body After Cancer.

Cancer and cancer treatments can cause significant changes to women's sexual well-being. We explored how women construct a sense of their bodies and sexual "selves" in the context of cancer. Sixteen women, across a range of ages (20-71 years), cancer types, and cancer stages, took part in in-depth semistructured interviews. We conducted a thematic discourse analysis, drawing on feminist poststructuralist theory, identifying "the abject body" as a dominant theme. Participants constructed abject bodies as being "beyond abnormality," "outside idealized discourses of embodied femininity," and "out of control." The women's accounts varied in management and resistance of the abject body discourse, through bodily practices of concealment, resisting discourses of feminine beauty, and repositioning the body as a site of personal transformation. The corporeality of the cancerous body can be seen to disrupt hegemonic discourses of femininity and sexuality, with implications for how women practice and make meaning of embodied sexual subjectivity.

Investigating the Lived Experience of Recovery in People Who Hear Voices.

Although there is evidence of both clinical and personal recovery from distressing voices, the process of recovery over time is unclear. Narrative inquiry was used to investigate 11 voice-hearers' lived experience of recovery. After a period of despair/exhaustion, two recovery typologies emerged: (a) turning toward/empowerment, which involved developing a normalized account of voices, building voice-specific skills, integration of voices into daily life, and a transformation of identity, and (b) turning away/protective hibernation, which involved harnessing all available resources to survive the experience, with the importance of medication in recovery being emphasized. Results indicated the importance of services being sensitive and responsive to a person's recovery style at any given time and their readiness for change. Coming to hold a normalized account of voice-hearing and the self and witnessing of preferred narratives by others were essential in the more robust turning toward recovery typology.

The Framing and Fashioning of Therapeutic Citizenship Among People Living With HIV Taking Antiretroviral Therapy in Uganda.

In this article, we examine how people living with HIV (PLWH) were able to reconceptualize or "reframe" their understanding of HIV and enhance their capacity to self-manage the condition. Two in-depth interviews were held with 38 PLWH (20 women, 18 men) selected from three government and nongovernment antiretroviral therapy (ART) delivery sites in Wakiso District, and the narratives analyzed. ART providers played an important role in shaping participants' HIV self-management processes. Health workers helped PLWH realize that they could control their condition, provided useful concepts and language for emotional coping, and gave advice about practical self-management tasks, although this could not always be put into practice. ART providers in this setting were spaces for the development of a collective identity and a particular form of therapeutic citizenship that encouraged self-management, including adherence to ART. Positive framing institutions are important for many PLWH in resource-limited settings and the success of ART programs.

What Brings You Here? Exploring Why Young Adults Seek Help for Social Anxiety.

Social anxiety disorder typically manifests in young adulthood, but there is an absence of qualitative research on the actual experiences of young adults suffering with this disorder. The aim of the present study was to investigate the lived experiences of 29 Norwegian university students who were seeking professional help for symptoms of social anxiety. We conducted in-depth interviews prior to a clinical trial. The interviews were transcribed and analyzed using a team-based thematic analysis method based on a hermeneutic-phenomenological epistemology. We identified five themes: (a) from being shy to interpreting anxiety as a mental health problem, (b) experiencing emotions as threatening and uncontrollable, (c) encountering loneliness as relationships fall away, (d) hiding the vulnerable self from others, and (e) deciding to face social fears in the future. We relate our findings to existing theory and research, discuss our process of reflexivity, highlight study limitations, and suggest implications for future research.

Researching Reflexively With Patients and Families: Two Studies Using Video-Reflexive Ethnography to Collaborate With Patients and Families in Patient Safety Research.

Patient safety research has to date offered few opportunities for patients and families to be actively involved in the research process. This article describes our collaboration with patients and families in two separate studies, involving end-of-life care and infection control in acute care. We used the collaborative methodology of video-reflexive ethnography, which has been primarily used with clinicians, to involve patients and families as active participants and collaborators in our research. The purpose of this article is to share our experiences and findings that iterative researcher reflexivity in the field was critical to the progress and success of each study. We present and analyze the complexities of reflexivity-in-the-field through a framework of multilayered reflexivity. We share our lessons here for other researchers seeking to actively involve patients and families in patient safety research using collaborative visual methods.

Dual, Yet Dueling Illnesses: Multiple Chronic Illness Experience at Midlife.

The prevalence of multiple chronic illnesses is increasing dramatically, especially among those in middle adulthood, yet much prior research has focused on the experience of multiple morbidity among older adults. We examined the online illness narratives (blogs) of 10 men and women aged 36 to 59 to better understand the experience of living with multiple chronic illnesses at midlife. Multiple morbidity presents distinct challenges to those at midlife: (a) diagnosis and management of multiple illnesses, (b) need for information, (c) identity dilemmas and threats to self-image, and (d) stigma and social rejection. Relinquishing the work identity was especially difficult for participants because it threatened to foreshorten middle adulthood and push them prematurely into late adulthood. Participants used their blogs to revise their identities, alleviate isolation, and inform and guide others.

Help yourself: perspectives on self-management from people with dementia and their caregivers.

Self-management interventions are increasingly offered to people with chronic health conditions. However, there has been limited exploration of how applicable such an approach is in early stage dementia. In this study we explored the views of people with dementia and family caregivers on the use of self-management in dementia. We conducted semistructured interviews with 13 people with early stage dementia and 11 caregivers. We analyzed transcripts using thematic analysis. We found eight themes in the analysis, and they indicated that self-management occurs in the context of peoples' family and social relationships as well as relationships with professional services. Six of the themes involved barriers to and facilitators of self-management. It is evident from these findings that people with dementia and caregivers use self-management techniques. Their use of such techniques could be enhanced by the development of interventions designed to help people with dementia to develop their self-management skills.

Diagnostic technologies in practice: gay men's narratives of acute or recent HIV infection diagnosis.

Diagnosing HIV-positive gay men through enhanced testing technologies that detect acute HIV infection (AHI) or recent HIV infection provides opportunities for individual and population health benefits. We recruited 25 men in British Columbia who received an acute (n = 13) or recent (n = 12) HIV diagnosis to engage in a longitudinal multiple-methods study over one year or longer. Our thematic analysis of baseline qualitative interviews revealed insights within men's accounts of technologically mediated processes of HIV discovery and diagnosis. Our analysis illuminated the dialectic of new HIV technologies in practice by considering the relationship between advances in diagnostics (e.g., nucleic acid amplification tests) and the users of these medical technologies in clinical settings (e.g., clients and practitioners). Technological innovations and testing protocols have shifted experiences of learning of one's HIV-positive status; these innovations have created new diagnostic categories that require successful interpretation and translation to be rendered meaningful, to alleviate uncertainty, and to support public health objectives.

Preparing Heart and Mind for Becoming a Parent Following a Diagnosis of Fetal Anomaly.

Using a cross-sectional, grounded dimensional analysis study design, we collected demographic and health information and conducted telephone interviews with 37 expectant parents of 26 fetuses within 25 families. We describe a theoretical model with a core process of preparing heart and mind for becoming a parent following a diagnosis of fetal anomaly. The process of preparing was influenced by fetal and future child health, experiences of previous loss, and social interactions within both new and familiar settings. Expectant parents reported varying turning points and strategies associated with three distinct trajectories of relating to the fetus or "baby" yet to be born. These relational trajectories include claiming the child as one's own, delaying the connection to the fetus, and doing the routine of pregnancy. With the findings presented in this article, we extend the understanding of how parenting develops during pregnancy in the context of a fetal anomaly.

Experiences of cancer caregiving in socioeconomically deprived areas of Attica, Greece.

The shift of the majority of cancer care from inpatient to outpatient settings has given rise to a number of issues that have not yet been adequately addressed. This is especially true in countries undergoing rapid and profound socioeconomic changes that have substantially affected the health care sector. We conducted 12 in-depth interviews with family cancer caregivers residing in socioeconomically deprived areas of Attica, Greece. Using an inductive thematic approach, we identified three major themes: (a) the truth within boundaries, focusing on the flow of information in the triad doctor-caregiver-patient; (b) the evil called "cancer," reflecting caregivers' perceptions of the illness; and (c) being left "high and dry," reflecting participant experiences of home-based care. Against a background of financial crisis, this study underlines the need for safeguarding the rights of chronically ill patients and ensuring that informal cancer care, apart from a cost-effective solution, will also be an efficient one.

The Nature of Fatigue in Chronic Fatigue Syndrome.

In this article, we report the findings of our study on the nature of fatigue in patients diagnosed with chronic fatigue syndrome. Using ethnoscience as a design, we conducted a series of unstructured interviews and card sorts to learn more about how people with chronic fatigue syndrome describe fatigue. Participants (N = 14) described three distinct domains: tiredness, fatigue, and exhaustion. Most participants experienced tiredness prior to diagnosis, fatigue during daily life, and exhaustion after overexertion. We also discuss participants' ability to adapt to a variety of stressors and prevent shifts to exhaustion, and relate our findings to stress theory and other current research. Primary strategies that promoted adaptation to stressors included pacing and extended rest periods. These findings can aid health care professionals in detecting impending shifts between tiredness, fatigue, and exhaustion and in improving adaptive strategies, thereby improving quality of life.

Existential Absence: The Lived Experience of Family Members During Their Older Loved One's Delirium.

When older people develop delirium, their demeanor changes; they often behave in ways that are out of character and seem to inhabit another world. Despite this, little is known about the experiences of family members who are with their older loved one at this time. This article reports a phenomenological study that involved in-depth interviews with 14 women whose older loved one had delirium. Analysis and interpretation of the data depict the women's experiences as "Changing family portraits: Sudden existential absence during delirium," capturing the way family members lose the taken-for-granted presence of their familiar older loved one and confront a stranger during delirium.

Health and writing: meaning-making processes in the narratives of parents of children with leukemia.

There is literary evidence stating that expressive writing affects health outcomes. Nevertheless, the processes underlying its benefits remain unclear. In our previous article, we described the benefits of writing; in this article, we investigate the meaning-making processes underlying the traumatic experiences of parents of children with leukemia in off-therapy. We collected the writings of 23 parents and grouped them according to the parents' psychological outcome (low/good/high) with respect to anxiety, as assessed during a follow-up. We qualitatively analyzed the texts written by parents with good psychological outcomes to highlight their main meaning-making processes, that is, how they put into words the shattering experience, reordered the events, connected their emotions and the events, reevaluated the event, and reconstructed the time process. We found that parents with low/high outcomes articulated these processes differently. Furthermore, we discussed the uses and functions of written narration for each group.

Exploring the experiences of people with hypo- and hyperthyroidism.

Thyroid diseases evoke a complex range of psychological and physical symptoms. The psychosocial aspects of living with diseases causing hypo- or hyperthyroidism are poorly understood. In this article, we report the findings of a qualitative interview study in which we explored the lived experiences of 16 people with hypo- or hyperthyroidism. We purposefully selected participants from Danish outpatient clinics according to their diagnosis (Hashimoto's thyroiditis or Graves' disease with or without orbitopathy), age (18 to 65 years), and duration of treatment (more than 6 months). We used interpretative phenomenological analysis (IPA) as a theoretical frame and analytical approach and identified three superordinate themes: losing control over mental and physical states, ambiguous signs of disease, and negotiating sickness. We discuss the findings in the context of the recent literature on chronic illness and argue that these themes play an important role in the conceptualization and management of thyroid diseases.