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The transitional care model for people who have suffered brain injuries is a relatively recent addition to the Thai healthcare system. The aim of this study was to explore experience of Thai Isan older stroke survivors and their family caregivers across different points of transition from hospital to home. Fifteen dyads of older stroke survivors and their family caregivers were recruited following the inclusion and exclusion criteria. Data were collected through participant observations and semi-structured interviews. Forty-seven participation observation field notes and twenty-four interview transcriptions were analyzed using the Four Phases of the Data Analysis Enabler and the Leininger–Templin–Thompson Ethnoscript Coding Enabler. Three themes emerged: I feel lost with managing care at home; it has been challenging for our family to maintain continuity of care; and it is a matter of who fits in and is convenient for family care responsibilities. The findings of this study have highlighted the dispersion of care among Thai-Isan people during the patient's transition to home. Therefore, a transitional care plan should be developed that specifies who is responsible for monitoring and supporting patients and families throughout this period. [ABSTRACT FROM AUTHOR]

The National Health Service (NHS) cardiac rehabilitation patient care pathway has remained largely unchanged for many years despite, on average, half of all eligible patients declining to engage. To investigate reasons for non-engagement, we explored the experiences of ten cardiac patients who participated in cardiac rehabilitation, dropped out, or declined, as well as experiences of seven people deemed significant others by participants. Our ethnographic study involved participant observations, repeat in-depth semi-structured interviews, and reflexive journaling. Reflexive thematic analysis was conducted, focusing on participants' lived experiences. Utilising Bourdieusian concepts of habitus, capital, and field, this article highlights how personal biography, material conditions, and dispositional inclinations combine to make cardiac health care decision-making individual and complex. Despite this, health professionals were not always attuned to specific circumstances arising from differences in patients' experiences and lifeworlds. By considering service improvement recommendations that acknowledge socio-cultural influences, cardiac rehabilitation can work towards providing patients and their significant others with more appropriate, personalised, and person-centred support. [ABSTRACT FROM AUTHOR]

The popularity of engaging community members as peer researchers is growing. The existing participatory research involving older adults appears to suffer from two main issues. First, older adults are rarely positioned as equitable research partners. Second, a paradox may exist between capacity building and an authentic lay perspective of older adults. This article adopted a knowledge-matching participatory approach to address these two issues. Seven older adults and four law students were trained as peer researchers to work with two academic researchers on a project about financial well-being in retirement. This article documented the research process and reflected the benefits, challenges, and best practices associated with this approach by analyzing transcripts from three reflective meetings, written reflections, and field notes from all peer and academic researchers using a thematic analysis approach. Results outline the experiences and reflections of using knowledge-matching participatory research for academic researchers and peer researchers, as well as for research processes and outcomes. The advantages of extending methodological amplitude, leveraging older adults' capacity, partnership matching, and empowerment are shown by the knowledge-matching participatory methodology. The establishment of capacity building, partnership development, and agenda flexibility are essential elements of success. We further discussed power disparity, partnership conflicts, and ethical dilemmas. Researchers and practitioners can utilize the findings, methodological approaches, and lessons learned in their studies aiming at engaging older adults in improving health and social well-being in later life. [ABSTRACT FROM AUTHOR]

There is a strong association between social relationships and health. In this article, we ask how a view of social relationships played out in time can help to nuance the role of patients' social networks in their healthcare-seeking behavior. We investigate this link by exploring the dynamics of relatedness in socioeconomically vulnerable young families with a multimorbid parent and their extended networks. Data were generated through repeated semi-structured and open-ended interviews and participant observation. The study found that, for much of their lives, participants experienced life as a series of events that happened to them and were out of their control. This way of being-in-the-world was linked to a consistent pattern of intense and then suddenly discontinued relationships. The relevance for health professionals is that there is a growing trend in healthcare systems worldwide to involve relatives and extended networks in a patient's treatment process. Our findings indicate challenges to this approach and recommend that health professionals are aware that for socioeconomically vulnerable patients with multimorbidity, important relationships can change dramatically, quickly, and repeatedly, over short periods of time. [ABSTRACT FROM AUTHOR]

How do people who are blind or visually impaired experience learning to use a long cane? This question is of paramount importance for planning and delivering rehabilitation programs and orientation and mobility (O&M) training. Until now, research into learning to use a long cane has focused primarily on technical and professional aspects, paying little attention to the lived experience of the learning activities that are offered in the field of O&M. This extensive qualitative study adopts a lifeworld phenomenological approach and sets out to examine the pedagogical processes within rehabilitation, focusing on the learning experiences of people with impaired vision. The methods used included participant observation during O&M training sessions and recurrent narrative interviews with three research subjects. The results show that learning to use the long cane has perceptual, existential, and social dimensions which are intertwined processes that relate to mind and body, body–world relations, and human existence and society. Learning to use a long cane has in this study been interpreted as embedded with cultural meaning about disability. Further, the habitual use of the cane promotes adaptation to visual impairment but also to build new body–world relations. The lifeworld theory and its methodology have contributed to theoretical evidence and rigor throughout. The results bring new interpretations to the field of O&M and are a relevant basis and valuable for pedagogical rehabilitation as it highlights the importance of taking the individual’s lifeworld and needs into consideration when teaching someone how to use a long cane. [ABSTRACT FROM AUTHOR]

Nodding Syndrome (NS) occurs within a wide spectrum of epilepsies seen in onchocerciasis endemic areas of sub-Saharan Africa. It has debilitating consequences on affected individuals and increases the socio-economic, physical and psychological burden on care-givers and their households, diminishing their standing within the community. Social science research on the disproportionate burden of the disease on females is limited. Based on ethnographic research over 3 years in northern Uganda, we explored the burden of being ill and care-giving for persons with NS from a gendered perspective. We found that NS-affected females were at greater risk of physical and psychological abuse, sexual violence, unwanted pregnancies, sexually transmitted infections and stigma, in a context of deteriorating socio-economic conditions. Primary care-givers of the NS-affected, mostly women, struggled to make ends meet and were subjected to stigma and abandonment. Targeted interventions, including legal protection for affected females, stigma reduction, and psycho-social and financial support are needed. [ABSTRACT FROM AUTHOR]

Interviews are central to the health ethnographers’ toolkit. In this article, we offer a critical engagement with methodological literature coupled with reflective examples from our own research, in order to articulate the value of the ethnographic interview in health research. We contribute to literature on ethnographic interviews in two ways: by decoupling ethnographic interviews from the necessity of accompanying participant observation, and by outlining an ethnographic disposition towards interviewing. We define the seven key epistemic dispositions underpinning the ethnographic interview. These are humility, a readiness to revise core assumptions about a research topic, attentiveness to context, relationality, openness to complexity, an attention to ethnographic writing, and a consideration of the politics and history of the method. The strength of an epistemic understanding of the ethnographic interview is that it offers flexibility for developing a diverse array of interview techniques responsive to the needs of different research contexts and challenges. Ethnographic interviews, we show, contribute to the study of health through a richly explorative, responsive, contextualised, and reflexive approach. [ABSTRACT FROM AUTHOR]

Few addiction treatment options are available in Arctic Canada, leading many Inuit to seek treatment programs in southern cities. We conducted a case study to understand what contributes to a culturally safe experience for Inuit in a mainstream addiction rehabilitation centre in Southern Canada. We carried out more than 700 hours of participant observation, in addition to semi-structured interviews and member-checking activities with 20 Inuit residents, 18 staff and four managers. Data were analysed using an inductive interpretative process. Throughout their journey in the program, Inuit navigated through contrasting situations and feelings that we grouped under six broad themes: having Inuit peers, having limitations imposed on one's ways of being and doing, facing ignorance and misperceptions, having conversations and dialogue, facing language barriers and being in a supportive and caring environment. This study highlights how cultural safety varies according to people, context and time, and relates to developing trustful relationships. [ABSTRACT FROM AUTHOR]

The practice of qualitative research demands reflexivity throughout the entire research process, with special attention directed towards researcher positioning. In this article, I explore how aspects and characteristics of my social situation positioned me contrary to my expectations regarding researcher positioning. I draw on individual interviews, focus group discussions and field notes about community-based health promotion interventions among residents of Danish, Turkish and Pakistani origin in a deprived social housing area in Denmark. Rather than insider-outsider positioning, the concept represented by the term 'halfie' unfolds the complexity of my researcher positioning: less minority ethnic than the residents of Turkish and Pakistani origin and less Danish than the residents of Danish origin, but similar to both, being a descendant of Sri Lankan Tamil origin brought up in a Danish social housing area. Finally, I present methodological and ethical implications of being a halfie in the context of qualitative health research. [ABSTRACT FROM AUTHOR]

Approximately 10–15% of people living with HIV are also diagnosed with diabetes. To manage their two chronic conditions, people must undertake certain activities and adopt behaviors. Due to overlapping symptoms, complex medication regimens, and heavy patient workloads, implementing these self-management practices can be difficult. In this focused ethnography, data were collected from semi-structured interviews and limited participant-observation with a selected subset of participants to gain insight into self-management challenges and facilitators. We conducted interviews and multiple observations with 22 participants with HIV+T2DM over the period of 9 months. Participants experienced numerous barriers to self-management in the areas of diet, medication adherence, and mental health. Social and familial support, as well as consistent access to care, were facilitators for optimal self-management. At the same time participants' lives were in a unique flux shaped by the dual diagnoses, and therefore, required constant mental and physical adjustments, thus illustrating challenges of managing chronicity. [ABSTRACT FROM AUTHOR]

In this research, we explore and theorize on the potential of hospital outpatient rehabilitation waiting areas to respond and contribute to the health literacy needs of consumers. Constructivist grounded theory informed the sampling and analytical procedures. Thirty-three consumers attending outpatient rehabilitation for a range of health conditions were recruited to this multi-site study. Semi-structured interview and participant observation data were collected and analyzed concurrently using the constant comparison method. The substantive theory of "seeking choice to fulfill health literacy needs" and five interdependent categories were developed. Results indicated that consumers sought choice reflective of their needs; however, the waiting area offered limited choice. Consumers shared ideas to address the lack of choice. Results provide insight into the health literacy needs of consumers in hospital outpatient waiting areas and how health services can appropriately respond to these needs. Future research should investigate the effect of health service environments on health outcomes. [ABSTRACT FROM AUTHOR]

Previous research has shown social inequality in type 2 diabetes prevalence and that socially vulnerable type 2 diabetes patients benefit less than average from health services. Based on ethnographic fieldwork carried out between February 2017 and March 2018 in a Danish specialized outpatient clinic, this article focuses on patient work among socially vulnerable type 2 diabetes patients. Through attending to the border zone between formal health care and self-care, we show that patients do a lot of work requiring skills, resources, and initiative, to access and benefit from formal care. This work is complex and implicit in the organization of care. Patients' social situations, especially their employment situation, complicate getting patient work done. Attending to patient work and implicit tasks in care organization may help us to see how social inequality in type 2 diabetes outcomes develops, and may be combated. [ABSTRACT FROM AUTHOR]

Children undergoing hematopoietic stem cell transplantation (HSCT) are vulnerable to pain due to the intensity and toxicity of this treatment. An instrumental case study design of two qualitative phases was conducted to examine the pain experiences of hospitalized children during HSCT therapy and how contextual factors related to the pediatric HSCT environment influenced their experience of pain. The Social Communication Model of Pain provided the conceptual framework for the study. In Phase 1, semi-structured interviews were conducted with parents of a child undergoing HSCT therapy at two time points. Phase 2 was conducted as a naturalistic observational study of the clinical care provided to children and semi-structured interviews with health-care providers. Children experienced complex and multifaceted pain with physical, psychological, and contextual contributors. Understanding the many factors contributing to the child's pain experience can inform strategies to improve the management of pain during HSCT therapy. [ABSTRACT FROM AUTHOR]

Developing safety interventions using patient feedback is valuable for creating safer systems of health care. A qualitative process evaluation of a patient feedback on safety intervention was undertaken in six primary care practices. The purpose was to theorize factors mediating with the implementation of the intervention using existing theories. The intervention required practices to obtain patient feedback on safety using a validated tool and respond using quality improvement methods. Multiple methods of qualitative data collection were used, including interviews and overt observation. Abductive reasoning informed the iterative process of analysis that examined theories relevant to the intervention and setting. A theoretical framework was developed, which encompassed mediating factors grouped under three concepts: practice readiness, utilization of problem-solving skills, and agency. Theorizing mediating factors was necessary to understand the complexities of primary care practices, and to identify the essential components for implementation of the intervention on a larger scale. [ABSTRACT FROM AUTHOR]

In this article, we examine the participation and interactions of migrant women and experts who attended health parties. Based on data from participation observations and semi-structured interviews from participants of health parties, we examine how health parties may be considered an innovative bottom-up community program that could influence how migrant women focus, learn, and discuss health issues as well as interact with health care. Through a qualitative analysis, the article demonstrates two ways of organizing health parties and different approaches to the health expert role, and how this impacts the social setting and interactions of a health party. In the Norwegian setting, migrant women are considered by health authorities to be the most difficult group to reach due to cultural and language barriers. Health parties may represent an alternative for bridging these barriers and may create a useful context for active participation and learning about health for migrant women. [ABSTRACT FROM AUTHOR]

Targeted services are recommended to pregnant women/parents in vulnerable positions to support their well-being and improve health outcomes; however, being offered extra services is associated with feelings of fear and anxiety. Adopting an ethnographic approach, we explore what parents fear, how and why they experience fear, and how this shapes their childbearing experience and engagement with Danish maternity care services. We made field observations and conducted interviews with 39 parents in vulnerable positions, who shared multiple, ambiguous, and interrelated fears. Four main themes were constructed: fear of going back to a dark place, of having a negative impact on the baby, of being labeled, and of the consequences of service engagement and being open. We conclude that what parents fear, the intensity of these fears, and what potentially triggers it are contingent on their life story, their care pathways, and the maternity care system. [ABSTRACT FROM AUTHOR]

Research has shown that involving patients in decisions on treatment may have positive effects for patients. However, there are different understandings of what involving patients implies and different attitudes among physicians toward sharing decisions with patients. This study aimed to explore the attitude of patients with advanced prostate cancer to involvement in treatment decisions and physicians' and nurses' approach to patient involvement. Moreover, it aimed to explore whether the decision-making changes as the treatment course progresses. Data were collected through participant observations and interviews. It was found that treatment decisions are primarily considered as part of physicians' role. Physicians' attitudes to patient involvement in treatment decisions depended on the type of treatment. Among patients and health professionals, there was a lack of confidence in the ability of patients to participate in the decisions. Health professionals and patients have different attitudes toward patient involvement and different views on what it entails. [ABSTRACT FROM AUTHOR]

The objectives of this research were to extend previous research by exploring the psychosocial experiences of patients over the first year after major lower limb amputation (MLLA) and identify implications for rehabilitation practice. This research took place at a United Kingdom–based National Health Service–operated prosthetic rehabilitation center. Thirty patients were recruited who had experienced MLLA within the last year and were undertaking prosthetic rehabilitation. Data were collected through semi-structured narrative interviews, observation, and a reflexive journal and analyzed using dialogical narrative analysis. The concept of well-being was used to map patients' recovery trajectories, and five narrative typologies were identified: accelerated decline, adaptation, illusory cure, muddling along, and projection. This article advances knowledge by opening up new possibilities for anticipating patients' future needs through the stories they are telling in the present and provides the basis for additional resources supporting psychosocial recovery. [ABSTRACT FROM AUTHOR]

Interhospital intensive care unit-to-unit transfers are an increasing phenomenon, earlier mainly studied from a patient safety perspective. Using data from video recordings and participant observations, the aim was to explore and interpret the observed nature of the patient's situation during interhospital intensive care unit-to-unit transfers. Data collection from eight transfers resulted in over 7 hours of video material and field notes. Using a hermeneutical approach, three themes emerged: being visible and invisible; being in a constantly changing space; and being a fettered body in constant motion. The patient's situation can be viewed as an involuntary journey, one where the patient exists in a constantly changing space drifting in and out of the health personnel's attention and where movements from the journey become part of the patient's body. Interhospital transfers of vulnerable patients emerge as a complex task, challenging the health personnel's ability to maintain a caring atmosphere around these patients. [ABSTRACT FROM AUTHOR]

Wilderness therapy has the potential to meet the specific needs of the current adolescent population by providing a rather unique outdoor group treatment. Wilderness therapy is not a new approach to mental health treatment, but its theoretical basis is not yet clearly delineated, in part because of the diversity found across programs and contexts. This article presents a critical realist exploration of a wilderness therapy program that was recently implemented as part of adolescent mental health services in Southern Norway. In this study, we combine fieldwork and interviews for an in-depth investigation of the treatment process, where the objective was to acquire a deeper understanding of the opportunities that arise in the wilderness therapy setting. The therapeutic mechanisms and influential contextual premises found across the ecological, physical, and psychosocial factors of this multidimensional approach to treatment are presented, and their underlying conditions are briefly discussed. [ABSTRACT FROM AUTHOR]

Binge-eating disorder (BED) is a severe eating disorder strongly associated with obesity. Treatments struggle to provide safe and effective ways of addressing weight in a BED context. This study explored a two-phased treatment for BED developed at a major out-patient eating disorder service in Denmark. The study used interviews and participant observations to gain insight into experiences and processes related to weight and body issues in three treatment contexts that addressed weight stability, weight acceptance, and weight loss. Using systems theory, the study proposed a relational weight problem that embeds feelings of non-acceptance due to weight, a merge of weight and identity, and an internalized body- and weight-critical gaze of others. Contrary to critical claims that weight acceptance discourages people with obesity from engaging in weight loss efforts, this study suggests that acceptance and a disentanglement of weight and identity are prerequisites for weight loss for this group. [ABSTRACT FROM AUTHOR]

A phenomenologically derived assessment tool, Hermes, was developed in a rehabilitation setting for adopting the central ideals of person-centered care and patient participation into health-assessment practices in nursing. This focused ethnographic study aimed at exploring the feasibility of using Hermes for enabling the application of these ideals into assessment of patients with chronic pain upon admission to a rehabilitation center. Participants were patients with chronic pain, enrolled in rehabilitation, and their nurses. Data were collected by participant observation and interviews, and analyzed by thematic analysis. By the use of Hermes, the impact of illness was explored through supportive connection and dialogue with open, reflective, and interpretative features; understanding of the illness situation was enhanced; and possibilities provided in adjusting to health issues of concern. In sum, Hermes facilitated person-centered participation of patients with chronic pain in their health assessment and made a phenomenological philosophy usable in nursing-assessment practices. [ABSTRACT FROM AUTHOR]

Jeju haenyeos who enter the sea without equipment to collect seafood while holding their breath have a unique culture; however, studies of their health are limited. This study, using an ethnographic approach, explores how Jeju haenyeos have managed and maintained their health. Snowball sampling yielded 15 participants between July and October 2016. We collected data through participant observation and in-depth interviews and conducted Spradley’s research sequence. The main theme of the health-management approach of these women was “a life of listening to the body and mind, controlling greed, and adjusting work for safe diving.” However, Jeju haenyeos used preventive drugs and excessive doses of other drugs and lacked an understanding of the ways diverse drugs potentially interact. These findings suggest that community nurses should be cautious and should attempt to educate these patients. [ABSTRACT FROM AUTHOR]

This article explores how people with dementia interact and solve problems while participating in social activities. The present article highlights social participation and interaction among elderly women with mild dementia who engaged in knitting as their main activity. The data were collected through participant observation at a day center in a Norwegian city, and the analysis revealed that the social activity of knitting facilitated conversations about different topics, required various forms of memory and problem solving, and involved different participant statuses. Being part of the knitting group appeared to help the participants maintain their skills and facilitated sociability. [ABSTRACT FROM AUTHOR]

In this article, we analyze the research experiences associated with a longitudinal qualitative study of residents’ care networks in assisted living. Using data from researcher meetings, field notes, and memos, we critically examine our design and decision making and accompanying methodological implications. We focus on one complete wave of data collection involving 28 residents and 114 care network members in four diverse settings followed for 2 years. We identify study features that make our research innovative, but that also represent significant challenges. They include the focus and topic; settings and participants; scope and design complexity; nature, modes, frequency, and duration of data collection; and analytic approach. Each feature has methodological implications, including benefits and challenges pertaining to recruitment, retention, data collection, quality, and management, research team work, researcher roles, ethics, and dissemination. Our analysis demonstrates the value of our approach and of reflecting on and sharing methodological processes for cumulative knowledge building. [ABSTRACT FROM AUTHOR]

During the progression of a pilot nutrition intervention designed to teach cooking skills to young adults with autism spectrum disorder (ASD), one participant—Paul—fell in the parking lot. Prior to the accident, Paul had been making significant gains in the program and had communicated in a number of ways his enthusiasm. After his accident, which resulted in broken and dislocated bones in his ankle, his demeanor was dramatically altered, program gains were lost, and staff noted the appearance of many new challenging behaviors. This article analyzes Paul’s behavior in reference to the pain response in autism. For some time, it was believed that many individuals with ASD did not experience pain based on anecdotal reports of how individuals responded to injury with seeming indifference. This view has given way of late to a more nuanced understanding of how atypical sensory processing and stimulus over-selectivity spill over into pain pathways and pain amplification mechanisms. The consequence is not a reduction in pain sensation, but a different expression of pain, determined by that individual’s particular communicative, cognitive, or physiological challenges. From this perspective, many of the disruptive and harmful behaviors that emerged after Paul’s accident can be seen as a delayed response to the incident. This article concludes by arguing that professionals across all domains of health care need to begin to see behavior as communicative for those with ASD. This is particularly true of changes in behavior, which can be significant indicators of health care problems rather than something to be dismissed as another manifestation of the condition. [ABSTRACT FROM AUTHOR]

Effectively addressing wicked health problems, that is, those arising from complex multifactorial biological and socio-economic causes, requires transdisciplinary action. However, a significant body of research points toward substantial difficulties in cultivating transdisciplinary collaboration. Accordingly, this article presents the results of a study that adapts Systems Ethnography and Qualitative Modeling (SEQM) in response to wicked health problems. SEQM protocols were designed to catalyze transdisciplinary responses to national defense concerns. We adapted these protocols to address cancer–obesity comorbidity and risk coincidence. In so doing, we conducted participant-observations and interviews with a diverse range of health care providers, community health educators, and health advocacy professionals who target either cancer or obesity. We then convened a transdisciplinary conference designed to catalyze a coordinated response. The findings offer productive insights into effective ways of catalyzing transdisciplinarity in addressing wicked health problems action and demonstrate the promise of SEQM for continued use in health care contexts. [ABSTRACT FROM AUTHOR]

Survivors of human trafficking who return to their community of origin must cope with the trauma they experienced as victims as well as the conditions that contributed to their trafficking vulnerabilities. In this article, I examine the psychosocial adjustment process among women survivors of trafficking who returned to Vietnam. Supplemented by participation observation, thematic analysis of in-depth interviews with survivors revealed that throughout the trafficking process, the women experienced multiple abuses and changes in relationships and environments. The women coped by navigating a process of “reconstructing a sense of self,” seeking congruence between their self-understandings and the changing contextual factors while exhibiting three main coping strategies: regulating emotional expression and thought, creating opportunities within constraints, and relating to cultural schemas. The findings underscore the importance of considering contextual factors such as cultural norms and societal values in efforts to assist trafficked survivors reintegrate into their communities. [ABSTRACT FROM AUTHOR]

The ways in which social scientists conceptualize the “reflexive” human subject have important consequences for how we go about our research. Whether and how we understand human subjects to be the authors of our own actions helps to structure what we say about health, health care, and the many other topics addressed in qualitative health research. In this article, I critically discuss assumptions of human reflexivity that are built into qualitative social science of health and medicine. I describe three alternative ways of understanding reflexive thought and human action derived from the theoretical works of Pierre Bourdieu, Bruno Latour, and George Lakoff and Mark Johnson, respectively. I then apply these three different ways of thinking about reflexivity and the acting subject to the analysis of an excerpt of participant observation data from a health services research study of transitions from hospital to home, illuminating the different kinds of analyses that arise from each perspective. I conclude with a call for social scientists to commit to the search for better ways of understanding the human subject, resisting the temptation to “settle” on theoretical statements that close down the path to more sophisticated conceptualizations of human thought and action. [ABSTRACT FROM AUTHOR]

Academics and community members collaborated in research to examine how best to apply ethics guidelines for research involving Indigenous communities in a community with complex and multiple political and cultural jurisdictions. We examined issues of NunatuKavut (Southern Inuit) authority and representation in relation to governance of research in a context where community identity is complex and shifting, and new provincial legislation mandates centralized ethics review. We scrutinize the taken-for-granted assumption of research ethics that community engagement is an unquestionable “good.” We examine the question of whether and how research ethics guidelines and associated assumptions about the value of community engagement may be grounded in, and inadvertently reinforce, ongoing colonialist relations of power. We present findings that community engagement—if done uncritically and in service to ethics guidelines rather than in service to ethical research—can itself cause harm by leading to community fatigue, undermining the community’s ability to be effectively involved in the research, and restricting the community’s ability to have oversight and control over research. We conclude by suggesting that the laudable goal of engaging communities in research requires careful reflection on the appropriate use of resources to operationalize meaningful collaboration. [ABSTRACT FROM AUTHOR]

As more women become infected with HIV, the issue of childbearing becomes increasingly salient. A more nuanced understanding of women’s situations is needed to provide high-quality and relevant services and support. We examined reproductive decision making among 20 women living with HIV through in-depth interviews. These women made decisions within situations of chaos, instability, and trauma, which often limited their ability to make truly informed choices about their lives and childbearing. Despite their HIV, many of the women wanted children, but experienced stigmatization related both to their HIV and to their decisions to have children. This stigmatization came from multiple sources, including health care providers, some of whom encouraged their patients to abort pregnancies because of their HIV. Participants, however, demonstrated resistance to stigmatization, through building supportive communities and developing trusting relationships with HIV providers. These results support the need for specialized HIV care for women of childbearing age. [ABSTRACT FROM AUTHOR]

Participant observation (PO) is an important method of data collection used in a variety of research methodologies. PO can inform theory development by providing understanding of participants’ behaviors and the contexts that influence their behaviors. Because theory development is important in grounded theory studies, we emphasize theoretical contributions of PO while interrogating the challenges of using PO, in particular, attending to informed consent. We use the exemplar of a mid-range theory about nursing practice with hospitalized older adults to highlight contributions of PO to category development. While acknowledging theoretical contributions, we explore challenges entailed in observations where consenting participants interact with vulnerable patients and a changing cast of health care professionals in dynamic contexts. Reflexivity about interactions with vulnerable individuals, as well as other actions to avoid compromising voluntary consent, enhances contributions of PO. [ABSTRACT FROM AUTHOR]

In this article we describe a grounded theory study of how caregivers of school-aged children with fetal alcohol spectrum disorder (FASD) managed their children’s schooling. We completed 30 interviews with 17 caregivers residing in a western Canadian province, as well as document analysis and 25 hours of participant observation. We used constant comparative analysis to construct our substantive theory: intertwining to fit in. The core variable is an iterative cycle caregivers used to resolve their main concerns: preventing their children from failing academically and in social interactions and preventing themselves from being regarded as unacceptable parents. To intertwine to fit in, caregivers used two strategies: orchestrating schooling and keeping up appearances. They also regulated their relationships with their children. “Intertwining to fit in” contributes to the literature on attachment and parenting and extends explanations about caregivers’ advocacy for their children with FASD. The theory has implications for school personnel and practitioners, as well as researchers. [ABSTRACT FROM AUTHOR]

Breast cancer rates in Peru, as in other low- and middle-income countries, continue to rise, and survival rates are poor, in part because many women are diagnosed with late-stage disease. As part of a pilot project to improve breast cancer screening and diagnostic services in remote regions of Peru, the Program for Appropriate Technology in Health (PATH) partnered with Peruvian organizations to train community health workers in breast health promotion and providers in clinical breast exam (CBE). To inform these strategies, we undertook a qualitative study to determine factors that influence Peruvian women’s decisions to seek CBE. Anthropological approaches incorporating the PRECEDE/PROCEED public health model guided our conversations with providers and women living in the region of the pilot intervention. Grounded theory analysis helped us uncover a central theme of uncertainty, a state of doubt and insecurity that created a sense of impotent worry and impeded clinical health-seeking behaviors. [ABSTRACT FROM AUTHOR]

Our aim with this article is to develop a typology for the analysis of client–caregiver encounters in health care. We first observed client–caregiver interactions in the homes of home care clients and during the care processes of surgical patients. We then conducted a data-driven analysis to identify the clients’ initiatives and the degree of engagement in the responses they received. The clients shaped their care by commenting on, questioning, ensuring, and enriching their care. The responses from the caregivers consisted of neutral acceptance, disregard, and shared expansive development of the clients’ initiatives. The typology developed from these will be a tool to widen our understanding of the complex interactions in care delivery and of the different conceptualizations of care that actors hold. In future studies this typology will help in the analysis of the organizational dynamics of health care delivery. [ABSTRACT FROM AUTHOR]

As the U.S. population ages and becomes increasingly diverse, health care professionals need to recognize the role of culture and life course in managing chronic health conditions. Older émigrés, in particular, face daunting challenges learning to navigate a new language, country, and health care system. In this focused ethnography, data collection included 16 months of participant observation and interviews with 28 Slavic participants (older émigrés, family caregivers, and key informants). Participants shared beliefs about the causes of chronic conditions, described treatments used, identified barriers to care, and expressed their expectations of U.S. health care providers. The findings provide insight into older émigrés’ explanatory models of health, which can be used by health care providers to improve health care delivery to this underserved population. [ABSTRACT FROM PUBLISHER]