Capturing the emotional and social experiences of COVID-19 through journal entries: A qualitative study of COVID-19 experiences over six weeks following infection.

COVID-19's wide-ranging effects on patients' physical health are well-documented, but comparatively less research has explored the impact on patients' emotional and social experiences. We examined how patients across a multi-state health system experience the emotional and social aspects of COVID-19 during the first six weeks of recovery from infection. We leveraged the larger My COVID Diary project to capture open-ended journal data from an app-based platform available to patients who test positive for COVID-19 within the health system. Our sample was limited to participants with multiple journal entries during the first six weeks after infection, with one entry in the top 5% of all participants for word count to ensure sufficient journal content was available for analysis. We randomly selected 100 eligible participants and coded and analyzed all of their journal entries in weeks 1-6 after infection, utilizing a thematic analysis approach. Despite journal entry prompts' orientation towards physical symptoms, the majority of participants discussed emotional experiences (such as anxiety, depression, and gratitude) and social factors (such as work and family) when describing their COVID-19-related experiences. Physical, emotional, and social experiences related to COVID-19 infection and recovery were often interconnected and overlapping. These findings demonstrate that a holistic understanding of the patient experience that extends beyond physical symptoms is necessary to fully support patient care and recovery.

"Somewhere Between an Actual Disease and a Disease": A Grounded Theory Study on Diagnosing Functional Neurological Disorders From a Multi-Informant Perspective.

Functional Neurological Disorders are characterized by sensory-motor or cognitive symptoms. Recent research has revealed their complex nature involving biological, psychological, and social factors. Care requires a multidisciplinary approach, which, to date, has yet to be considered. A Constructivist Grounded Theory study was conducted to understand the reasons behind this, exploring Functional Neurological Disorders diagnosis, communication, and understanding from multiple perspectives (patients and healthcare professionals). The core category was "negotiating Functional Neurological Disorders meanings and care amid a dissatisfying dichotomy," with sub-categories: i) seeking to "word" the disease, ii) exposing reductionism, and iii) a pluralist vision emerging. Diagnosing and communicating Functional Neurological Disorders is a process of negotiating meanings and care that hinges on participants' diverse ontological perspectives regarding the condition. Results highlight the difficulty in finding common ground and achieving mutual understanding among the various viewpoints, creating a challenge in establishing a unified approach to Functional Neurological Disorders care. In this context, only a few healthcare professionals emphasized the potential benefits of increased integration. A shift is required from a reductionist to an integrated biopsychosocial perspective to develop a more cohesive approach. Defining a medical paradigm through dialogue with teams and patients is essential in addressing Functional Neurological Disorders effectively. Furthermore, the required interdisciplinary approach holds the potential to mitigate the dissatisfaction arising from fragmented and compartmentalized care (the "dissatisfying dichotomy") experienced by our participants. It signifies a comprehensive strategy that could address the concerns of all involved parties and enhance the overall quality of care provided.

Protecting Personhood: A Classic Grounded Theory.

The importance of perceiving and considering patients as healthcare partners has been increasingly promoted. Healthcare systems around the world are now highly interested in patient engagement, participation, collaboration, and partnership. Healthcare professionals are advised that patients, as autonomous beings, should be active in and responsible for a portion of their own care. The study presented here focused on patients' perceptions of interprofessional collaboration. It was conducted using the classic grounded theory methodology. The theory of protecting personhood emerged as the core concept of hospitalized patients, cared for by interprofessional healthcare teams. This theory encapsulates the process hospitalized patients go through to find balance in their sense of self, oscillating between personhood and patienthood in the unfamiliar hospital environment. The process consists of four stages: the stage of introspection, during which hospitalized patients become aware of their self as a person and as a patient; the stage of preservation, when patients find a balance between the sense of personhood and patienthood; the stage of rupture, wherein patients experience an imbalance between their sense of personhood and patienthood; and the stage of reconciliation, in which personhood is restored. The theory of protecting personhood offers insights into a better understanding of hospitalized patients' experiences and strategies, revealing the importance of relationships, and the driving force of empowerment. This study is about patients' perspectives of interprofessional healthcare teams. A grounded theory process allowed the emergence of patients' concerns and expectations, leading to a substantive theory grounded in the patients' data.

Living in Rural Areas and Receiving Cancer Treatment Away From Home: A Qualitative Study Foregrounding Temporality.

We used explorative interviews to gauge (inter)personal, physiological, and emotional challenges of seven rural cancer patients who traveled long distances to cancer treatment centers. After a thematic analysis, we foregrounded experiences of temporality by using a phenomenologically inspired approach. The analysis resulted in three themes: (a) An epiphany of "what really matters in life"-time gains new meaning, (b) Feeling out of sync with others and own body-striving for coherence and simultaneity, and (c) Being torn between benefits of home and treatments site-time and distance as a tangible aspect of traveling and being away. Under these themes, 13 meaning units were generated, which reflected changes in temporality. During treatment, life primarily revolved around repeating circles of travel arrangements, staying on top of treatment schedule, and synchronizing a home life with a life away from home. Nurses should provide comprehensive care to enhance stability in cancer patients' temporal experiences.

A Rapid Ethnographic Assessment of Cultural and Social Perceptions and Practices About COVID-19 in Bangladesh: What the Policy Makers and Program Planners Should Know.

Anthropological literature on health beliefs and practices related to COVID-19 is scarce, particularly in low and middle-income countries. We conducted a qualitative research on perceptions of COVID-19 among slum residents of Dhaka, Bangladesh from November 2020 through January, 2021. Methods included in-depth interviews and photo elicitation with community residents. Interviews were transcribed and analyzed thematically. Results show scientific explanations of COVID-19 conflicted with interviewees' cultural and spiritual beliefs such as: coronavirus is a disease of rich, sinful people; the virus is a curse from Allah to punish sinners. Interviewees rejected going to hospitals in favor of home remedies, and eschewed measures such as mask-wearing or social distancing instead preferring to follow local beliefs. We have highlighted a gap between community beliefs about the pandemic and science-led interventions proposed by health professionals. For public health policy to be more effective it requires a deeper understanding of and response to community perceptions.

Empowering Patients and Health Professionals to Address Sexual Health in the Context of Anorectal Malformations and Hirschsprung's Disease.

The aim of this study is to develop a tool that is aligned with patients' and health professionals' needs to address sexual health in the context of anorectal malformations and Hirschsprung's disease. A multiphased participatory action-research was conducted. First, an inventory of needs was made through interviews (11 patients, 11 professionals), three online focus groups (4 patients, 20 professionals), and a questionnaire (38 patients). Subsequently, four cocreation sessions with in total four patients and nine professionals were organized to translate the needs into a tool (in the form of a website). The websites' functionality was assessed via a questionnaire (n = 34). The website, directed to patients, their parents, and professionals, stimulates awareness, fills knowledge gaps, and shows possibilities for support. The website is expected to change restrictive attitudes toward sexual health and improve the legitimization of the topic needed for the allocation of resources and sexologists' involvement in current care pathways.

Why People Who Inject Drugs Voluntarily Transition Off Methadone in Ukraine.

Methadone maintenance therapy (MMT) treats opioid use disorder among people who inject drugs (PWID). To understand why PWID may voluntarily discontinue MMT, we analyzed data from 25 focus groups conducted in five Ukrainian cities from February to April 2013 with 199 participants who were currently, previously, or never on MMT. Using constant comparison method, we uncovered three themes explaining why PWID transition off MMT: (a) purposeful resistance to rigid social control associated with how MMT is delivered and to power asymmetries in provider-patient relationships, (b) self-management of a PWID's "wounded identity" that is common in socially stigmatized and physically sick persons-MMT serves as a reminder of their illness, and (c) the quest for a "normal life" uninterrupted by daily MMT site visits, harassment, and time inefficiencies, resources, and social capital. Focusing on holistic principles of recovery would improve addiction treatment and HIV prevention in Ukraine and globally.

Examining the Roles and Experiences of Fathers of Children With Chronic Kidney Disease.

This study examined roles and experiences of fathers of children with chronic kidney disease (CKD). Based on interpretive description, semistructured interviews were conducted with 22 fathers of children receiving a range of treatments (transplant, peritoneal dialysis, hemodialysis, and CKD not requiring renal replacement therapy). Fathers described various experiences and means of adjusting to shifts associated with pediatric CKD. These included loss of personal control, a sense of personal isolation, and a stance of remaining strong amidst personal suffering. Nuanced differences according to modality of CKD care were identified. Fathers engaged in strategies that fostered coping, such as remaining positive and taking charge. They conveyed deep love for their child, and demonstrated ingenuity and persistence in care. Few resources of support were accessed by fathers. Study recommendations invite holistic approaches to health care, with improved resources for families-including fathers-in addressing the needs of this population.

Living Well With a Long-Term Condition: Service Users' Perspectives of a Self-Management Intervention.

The outcomes of self-management interventions are commonly assessed using quantitative measurement tools, and few studies ask people with long-term conditions to explain, in their own words, what aspects of the intervention they valued. In this Grounded Theory study, a Health Trainers service in the north of England was evaluated based on interviews with eight service-users. Open, focused, and theoretical coding led to the development of a preliminary model explaining participants' experiences and perceived impact of the service. The model reflects the findings that living well with a long-term condition encompassed social connectedness, changed identities, acceptance, and self-care. Health trainers performed four related roles that were perceived to contribute to these outcomes: conceptualizer, connector, coach, and champion. The evaluation contributes a grounded theoretical understanding of a personalized self-management intervention that emphasizes the benefits of a holistic approach to enable cognitive, behavioral, emotional, and social adjustments.

Holistic Experiences and Strategies for Conducting Research With Couples.

In this article, we outline methodological considerations for conducting research interviews with couples. We draw from two qualitative men's health studies, both developed to explore social interactions between men and their partners of either sex in relation to their health practices. We utilized a combination of separate interviews and joint couple interviews. From these studies, we offer insight into our experiences of using both types of interview styles, addressing four key areas which span elements across the research project journey: (a) choosing a mode of interview, (b) ethical concerns in couple research,

Practices and Attitudes Concerning Endometriosis Among Nurses Specializing in Gynecology.

Endometriosis is a chronic disease affecting approximately 10% of fertile women. These women often have negative health care experiences. This study adds new knowledge about endometriosis care in a hospital setting and nurses' attitudes toward the disease. To explore how the personal attitudes of gynecological nurses, their specialized knowledge, and their clinical experiences influenced the way they conceptualized and cared for women with endometriosis, participant observations and semistructured interviews were conducted. Categorization of patients into certain kinds, with more or less legitimate needs, provided an important framework for practice. Specialized knowledge qualified the nurses' views of their patients and seemed to be conducive to sustained patient involvement. However, the organization of care based solely on medical specialization restricted a holistic approach. An important goal is, therefore, to investigate patients' perspectives of health and illness and to create participatory relationships with patients, regardless of their diagnosis.

Nursing Home Stakeholder Views of Resident Involvement in Medical Care Decisions.

Demand by nursing home residents for involvement in their medical care, or, patient-centered care, is expected to increase as baby boomers begin seeking long-term care for their chronic illnesses. To explore the needs in meeting this proposed demand, we used a qualitative descriptive method with content analysis to obtain the joint perspective of key stakeholders on the current state of person-centered medical care in the nursing home. We interviewed 31 nursing home stakeholders: 5 residents, 7 family members, 8 advanced practice registered nurses, 5 physicians, and 6 administrators. Our findings revealed constraints placed by the long-term care system limited medical involvement opportunities and created conflicting goals for patient-centered medical care. Resident participation in medical care was perceived as low, but important. The creation of supportive educational programs for all stakeholders to facilitate a common goal for nursing home admission and to provide assistance through the long-term care system was encouraged.

Serious decisions: chronic conditions and choice of provider.

People with chronic health conditions combine conventional medical care with different complementary and alternative medicine (CAM) therapies for varying reasons. The data on which we drew to elucidate this derive from a large mixed-methods study utilizing participant observation, in-depth interviews with 69 people with type 2 diabetes mellitus and/or cardiovascular disease (CVD), and interviews with 20 health care providers. Although integrative practices are increasingly common, people make clear choices about and trade-offs between conventional medical care and CAM, often using CAM and prescribed pharmaceuticals in tandem for different conditions and distinct purposes and outcomes. As we illustrate, some people perceived type 2 diabetes and CVD as "too serious" for CAM treatment, but concurrently, many turned to CAM providers in appreciation of the serious attention these providers paid to their health-related concerns.

Vaccine perceptions among Oregon health care providers.

Health care providers exert a significant influence on parental pediatric vaccination decisions. We conducted hour-long interviews with traditional and alternative health care providers in which we explored a range of associations between vaccination perceptions and practice. A key finding was that the Health Belief Model constructs of perceived susceptibility to and severity of either an illness or an adverse vaccine event partially explained health care provider (HCP) beliefs about the risks or benefits of vaccination, especially among alternative care providers. Low or high perceived susceptibility to a vaccine-preventable disease (VPD) or of the severity of a given VPD affects whether an HCP will promote or oppose pediatric vaccination recommendations. Beyond these perceptions, health and vaccination beliefs are affected by the contextual factors of personal experience, group norms, immunology beliefs, and beliefs about industry and government. Building powerful affective heuristics might be critical to balancing the forces that defeat good public health practices.

The nature of life-transforming changes among cancer survivors.

Some cancer survivors report positive subjective changes they describe as "life transforming." We used a grounded theory approach to identify the content, underlying process, and identifying characteristics of self-defined "life-transforming" changes (LTCs) reported by 9 cancer survivors. To actualize their hopes for improvement, participants used a self-guided process centered on pragmatic action: researching options, gaining experience, and frankly evaluating results. Many participants discovered unanticipated personal abilities and resources, and those became highly useful in coping with other challenges apart from cancer. This made the increased personal abilities and resources "life transforming" rather than being substantially limited to reducing cancer-related problems. The action-oriented features and processes of LTCs seemed to be more fully described by experiential learning theory than by posttraumatic growth and coping. Supportive intervention to facilitate positive change processes could decrease suffering and enhance positive psychosocial and spiritual outcomes for cancer survivors.