A Qualitative Study of Aboriginal Peoples' Health Care Experiences With Chronic Obstructive Pulmonary Disease.

Aboriginal Australians experience a high prevalence of chronic obstructive pulmonary disease (COPD), with high rates of potentially preventable hospitalisations. However, little is known about Aboriginal peoples' experiences of living with COPD and how they navigate health care systems. This study used thematic analysis and Aboriginal methodology to explore Aboriginal peoples' lived experiences of COPD, their health care journey from receiving a diagnosis of COPD to the clinical management, and the impact of COPD on their daily lives. We conducted in-depth semi-structured interviews over a 6-month period with 18 Aboriginal adults diagnosed with COPD from four Aboriginal Community Controlled Health Services (ACCHS) in New South Wales, Australia. Reflexive thematic analysis was employed to ensure rigour. The findings revealed deeply personal and reflective stories shaped by historical, social, and cultural realities of Aboriginal peoples living with COPD. Four themes were identified characterising their experiences. Based on the findings, the following guidance is provided on future COPD care for Aboriginal peoples: Better alignment of existing COPD management with Aboriginal peoples' cultural contexts and perspectives to improve access to culturally safe care; Increased funding for ACCHS to enhance COPD management, such as early detection through case finding and access to ACCHS-led pulmonary rehabilitation; Engaging family members in COPD management and providing culturally centred COPD education that facilitates discussions and builds health literacy and self-management skills; Implementing health promotion initiatives to increase awareness and counteract fear and shame to improve early COPD detection.

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.

Mothering a Child With Complexity and Rarity: A Narrative Inquiry Exploring Prader-Willi Syndrome.

Daily experiences of mothers caring for children with Prader-Willi syndrome (PWS) are largely unknown and unvoiced. Knowledge of PWS has generally focused on pathology of the disorder. This emphasis overlooks the challenging moments of everyday life caring for children with PWS. Storied accounts of mothers caring for children with PWS offer expanded narratives to medicalized descriptions of experience. An understanding of everyday challenges in managing physical and mental health issues of PWS including hyperphagia and anxiety may create shifts in social and clinical perspectives. This understanding could improve practices in health and social care for families with PWS. This narrative inquiry studied everyday experience using storied accounts. Participants were mothers caring for children aged 3-17 years with genetically confirmed PWS who were experiencing hyperphagia. Four participants were recruited, and each interviewed 8-12 times over 12 months. Field texts and narrative accounts were co-composed through a collaborative process of analysis. Engaging with participants' day-to-day experiences offered insights into their work of nurturing, caring, and contributing to the care of a child with PWS. Narrative threads focused on complexity and rarity and include the desire to be normal, how ordinary becomes extraordinary, isolation, behaviors and normative standards, and alternative stories of mothering. Recommendations for practice and policy include (a) challenges of mothering a child with complexity, (b) moving beyond functionality and impairment to participation and quality of life, (c) re-storying narratives and supports for families, and (d) engaging with mothers to determine care priorities.

Factors Shaping the Implementation of Strategies to Prevent Acute Kidney Injury: A Qualitative Study.

Reducing the prevalence of acute kidney injury (AKI) is an important patient safety objective set forth by the National Quality Forum. Despite international guidelines to prevent AKI, there continues to be an inconsistent uptake of these interventions by cardiac teams across practice settings. The IMPROVE-AKI study was designed to test the effectiveness and implementation of AKI preventive strategies delivered through team-based coaching activities. Qualitative methods were used to identify factors that shaped sites' implementation of AKI prevention strategies. Semi-structured interviews were conducted with staff in a range of roles within the cardiac catheterization laboratories, including nurses, laboratory managers, and interventional cardiologists (N = 50) at multiple time points over the course of the study. Interview transcripts were qualitatively coded, and aggregated code reports were reviewed to construct main themes through memoing. In this paper, we report insights from semi-structured interviews regarding workflow, organizational culture, and leadership factors that impacted implementation of AKI prevention strategies.

A Discourse of Deviance: Blame, Shame, Stigma and the Social Construction of Head and Neck Cancer.

Cancer of the head and neck is a confronting condition, as the disease and its treatments alter the appearance and function of body organs associated with physical appearance and identity. Many of the risk factors for head and neck cancers, including tobacco, alcohol, and human papilloma virus, can also have significant negative social and moral permutations. Language and action (discourse) plays an important role in constructing disease and illness and shape the way it is managed, both institutionally and socially. This research used a critical constructionist lens to investigate how the common discourses surrounding head and neck cancer are constructed within the healthcare context and how this influences patients and healthcare professionals' responses to the illness. Data were collected through semi-structured interviews, field noting, journaling and literature reviews. Analysis was guided by a three-dimensional approach to critical discourse analysis that investigated text, discursive practices, and social context. The overarching finding was that deviance dominates the common discourse and shapes head and neck cancer and responses to it. Deviance is channelled through metaphors, adjectives, descriptors, and collective nouns and is made overt through labelling, avoidance, blaming, shame, and categorization. Discourse is contextualized by a sociocultural understanding that when someone deviates from what is perceived as normal, they are devalued. Open dialogue and reflection on head and neck cancer discourse could enable better understanding of how people experience their condition and inform more supportive responses.

"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.

Achieving Calm: A Study on the Health Care Experiences of People With Lived Experience of Homelessness in Central Texas.

The experiences of care of people with lived experience of homelessness are rarely embraced to change care delivery. We conducted qualitative group and one-on-one interviews utilizing experience group methodology with 27 people with lived experience of homelessness currently housed in one permanent housing community in central Texas. We analyzed data using an inductive thematic approach to identify shared obstacles and barriers to receiving health care. We then analyzed findings with the capability, comfort, and calm value framework to identify health outcomes that matter most to study participants. Poor access to care, discontinuities in care, distrust in providers, and confusing terminology were identified as the biggest barriers to health. The overwhelming majority of experiences reflected poor health outcomes of calm, the outcome of a health care experience that adds ease to one's life rather than logistical and administrative chaos. We propose three practical approaches to achieve calm for this population as follows: systems-level embracement of compassionate care, integration of relationship-based care navigation into all levels of care, and building efficient transportation into care design. We conclude that designing health care that works in the lives of people with lived experience of homelessness is critical to address the gaps in care that fuel the health disparity these individuals face compared to people without this lived experience.

"You Are By No Means Alone": A Netnographic Study of Self-Care Support in an Online Community for Older Adults.

Online peer-to-peer communities provide environments in which people with similar health concerns can interact and exchange information that can support self-care of long-term conditions. However, current theories have not adequately accounted for how self-care support is enacted in online communities. We conducted an observational netnography to identify and analyze posts in a publicly accessible online community (discussion forum boards) designed for older people. A Straussian grounded theory approach was used to examine 659 posts in health-related message boards. Self-care support involved the construction of three interrelated identities: (1) the support seeking self, in which members described problems and requested information; (2) the empathizing self, in which they described similar experiences and offered support; and (3) the influencing self, in which they provided information or advice. Online communities appear to be an important source of peer support and information and may be a cost-effective approach to supplement standard care.

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.

An Unexpected Journey: The Lived Experiences of Patients with Long-Term Cognitive Sequelae After Recovering from COVID-19.

This current study explored the lived experiences of patients with long-term cognitive sequelae after recovering from COVID-19. A qualitative design with in-depth interviews and an analysis inspired by Ricoeur's interpretation theory was utilised. Contracting COVID-19 and suffering long-term sequelae presented as a life-altering event with significant consequences for one's social, psychological and vocational being in the world in the months following the infection. Patients living with long-term cognitive sequelae after COVID-19 were in an unknown life situation characterised by feelings of anxiety, uncertainty and concerns about the future, significantly disrupting their life trajectory and forcing them to change their ways of life. While awaiting studies on treatment, symptom management and recovery after persistent sequelae of COVID-19, clinicians and researchers may find inspiration in experiences of other health conditions with similar phenomenology, such as ME/chronic fatigue syndrome and chronic headaches.

Identifying barriers to Irish traveller women attending breast screening.

INTRODUCTION: Breast cancer is one of the most prevalent cancers in women, however Irish Traveller women have lower breast screening rates than that of the general population. This work aims to address the gap in knowledge of Irish Traveller womens' perceptions of breast screening and the perceived barriers and enablers to attendance. METHODS: This phenomenological qualitative study involves interviews with Irish Traveller women and Health Care Professionals and discusses the incentives and barriers to attending breast screening mammography in Ireland. The work investigated attitudes and decision making amongst the Irish Traveller women across breast screening and breast health. The research investigated the participants knowledge, experience and opinions about the topic of Irish Traveller womens' attendance at BreastCheck and breast health RESULTS: Influences that create barriers to breast screening for Irish Traveller women include inequality and family/community support, fear, literacy and education, embarrassment and the health care professional, stress and appointment suitability. Findings also demonstrate inadequate data and information is available in Ireland regarding Irish Traveller women attending breast screening. CONCLUSION: Irish Traveller women face several influences when it comes to attending breast screening. The existing Irish national breast screening programme provides a health promotion service however, it is impossible to assess poor attendance at screening without the presence of an ethnic identifier. It would be very beneficial for screening promotion to record the ethnicity of attendees for statistical progress. This would benefit Irish Traveller women by recording the progress of attendance in the breast screening programme and creating a need for awareness and education within the annual reports. IMPLICATIONS FOR PRACTICE: Creating awareness and educating Irish Traveller women about the breast screening programme may remove barriers and lead to improved attendance rates.

How do Positive Deviants Overcome Health-Related Stigma? An Exploration of Development of Positive Deviance Among People With Stigmatized Health Conditions in Indonesia.

A constructivist grounded theory approach was used to understand how some people living with stigmatized health conditions develop positive deviance to overcome stigma. We examined interviews from 13 identified positive deviants living with four different stigmatized health conditions (HIV, leprosy, schizophrenia, and diabetes) in Indonesia. Positive deviance develops in the form of psychological empowerment through improvement of self-belief and perception (intrapersonal component), development of understanding and skill to exert control in life (interactional component), and self-discovery of successful behaviors and strategies to avert stigma (behavioral component). Positive deviants, after being empowered, start empowering others affected by sharing their knowledge and fostering social awareness and acceptance. The findings revealed the presence of problem-solving ability and agency within the community of stigmatized individuals in Indonesia and warrant researchers to partner with the community to expedite the diffusion of transferable positive deviant strategies within and outside the communities.

Enacting Woundedness and Compassionate Care for Recurrent Metastatic Breast Cancer.

This analysis integrates Arthur Frank's timeless revelations about woundedness within the communication context of an oncology interview. A Patient whose life is threatened by recurrent metastatic breast cancer claims personal knowledge and visibly demonstrates impacts from illness experiences. Conversation Analysis (CA) was conducted on a video recorded and transcribed case study involving a Patient, her husband, and co-present oncologists. By focusing on narratives as talk-in-interaction, grounded exemplars are provided of primary interactional achievements: How woundedness gets displayed and responded to with empathy and compassionate witnessing; Patient's flooding out with emotion and potential embarrassment; attempting to regain control and resume talking about her condition; and the serial organization of crying and laughter when managing noticeably delicate moments. In this interview, woundedness is not discounted or dismissed but recognized as legitimate suffering meriting shared commiseration. Understanding how to enact humane and communicatively competent skills during emotionally uncertain moments can enhance medical education.

Theories of self-care and self-management of long-term conditions by community-dwelling older adults: A systematic review and meta-ethnography.

RATIONALE: The proportion of older adults living with long-term conditions (LTCs) is increasing. Self-care and self-management approaches are seen as valuable in helping older people with LTCs to manage their health and care, yet the theoretical overlaps and divergences are not always clear. OBJECTIVES: The objectives of this review were to: (1) systematically identify and appraise studies of self-care or self-management of LTCs by community-dwelling older adults (aged ≥60 years) either informed by, applying, creating, or testing theory; (2) explore similarities or points of convergence between the identified theories; and (3) use a meta-ethnographic approach to synthesise the theories and group related concepts into core constructs. METHODS: We conducted a systematic theory synthesis, searching six electronic databases. Three reviewers independently screened titles and abstracts followed by full texts and two reviewers appraised study quality. Theoretical data were synthesised within and across individual theories using meta-ethnographic line-of-argument synthesis. RESULTS: A total of 141 articles (138 studies) and 76 theories were included in the review. Seven core constructs were developed: (1) temporal and spatial context; (2) stressors; (3) personal resources; (4) informal social resources; (5) formal social resources; (6) behavioural adaptations; and (7) quality of life outcomes. A line of argument was developed that conceptualised older adults' self-care and self-management as a dynamic process of behavioural adaptation, enabled by personal resources and informal and formal social resources, aimed at alleviating the impacts of stressors and maintaining quality of life. CONCLUSION: This synthesis provides an overview of theories used in research on older adults' LTC self-care and self-management. Our synthesis describes the complex interplay of intrinsic and extrinsic factors influencing self-care and self-management behaviours and provides considerations for future research, intervention design, and implementation. The utility of the constructs in research and practice requires further attention and empirical validation.

Additional Value of Peer Informants in Psychological Autopsy Studies of Youth Suicides.

In this study, we examined the feasibility and added value of including peer informants in a psychological autopsy study of youth suicides. Peer semi-structured interview data from 16 cases were analyzed qualitatively and compared to parent data. Results show that peers added information to parents' narratives in general and particularly on social relationships, bullying, school experiences, social media, and family relations. Peers also provided additional information on the presence of certain issues (such as social media contagion) as well as on the emotional impact from certain adverse events that seemed to have functioned as precipitating factors. We conclude that including peers in psychological autopsy studies of youth suicides is feasible and of added value but that more research is desirable. The results initially can be used in the design of psychological autopsies so that the maximum amount of information about each suicide will be learned.

Using the Framework Method for the Analysis of Qualitative Dyadic Data in Health Research.

There are an increasing number of qualitative studies which focus on the dyad (couples, families, caregivers-patients, health care professionals-patients). However, there is limited literature regarding qualitative methodology for dyadic analysis when members of the couple have been interviewed separately. The aim of this article is to share the knowledge we gained from undertaking a novel approach to dyadic analysis. We used an adapted version of the Framework method on data gathered in a study exploring the impact of prostate cancer on younger men and their partners. In this article, we examine and reflect on the challenges of this type of analysis and describe how we analyzed the interview data from a dyadic point of view, to share what we learned in the process.

Understanding the Impact of Initial COVID-19 Restrictions on Physical Activity, Wellbeing and Quality of Life in Shielding Adults with End-Stage Renal Disease in the United Kingdom Dialysing at Home versus In-Centre and Their Experiences with Telemedicine.

Early in the coronavirus-2019 (COVID-19) containment strategy, people with end-stage renal disease (ESRD) were identified as extremely clinically vulnerable and subsequently asked to 'shield' at home where possible. The aim of this study was to investigate how these restrictions and the transition to an increased reliance on telemedicine within clinical care of people living with kidney disease impacted the physical activity (PA), wellbeing and quality of life (QoL) of adults dialysing at home (HHD) or receiving in-centre haemodialysis (ICHD) in the UK. Individual semistructured telephone interviews were conducted with adults receiving HHD (n = 10) or ICHD (n = 10), were transcribed verbatim and, subsequently, thematically analysed. As result of the COVID-19 restrictions, PA, wellbeing and QoL of people with ESRD were found to have been hindered. However, widespread support for the continued use of telemedicine was strongly advocated and promoted independence and satisfaction in patient care. These findings highlight the need for more proactive care of people with ESRD if asked to shield again, as well as increased awareness of safe and appropriate PA resources to help with home-based PA and emotional wellbeing.

Communicating with older adults with long-term conditions about self-management goals: A systematic review and thematic synthesis.

OBJECTIVE: To synthesise a body of fine-grained observational research on communication between healthcare professionals (HCPs), older adults, and carers regarding self-management goals and actions. METHODS: We conducted a systematic review, searching nine electronic databases and the grey literature. Two reviewers independently selected for inclusion following a two-stage process and studies and discrepancies were resolved through consultation with the review team. RESULTS: 898 records were retrieved, and eight studies were included in the review. Aggregative thematic analysis resulted in 13 categories of communication practices across three decision-making domains: (1) initiating: actions occurring prior to the commitment point; (2) proposing: putting forward a course of action; and (3) committing and closing: committing (or not) to the course of action. CONCLUSIONS: Despite an increasing emphasis on the importance of personalised care planning and shared decision-making (SDM) to support older people's health and wellbeing, HCPs did not consistently practice this approach and, in some cases, worked in opposition to it. PRACTICE IMPLICATIONS: We encourage HCPs to prepare older adults to engage actively with SDM and the goal setting process by employing patient-centred communication resources. These could assist with identifying different types of goals that are realistic and relevant to patients in daily life.