RESUMEN
This case study focuses on a video telehealth consult to discuss genetic testing results. Participants include a Genetic Counselor (GC) and a Patient (P) previously diagnosed with ovarian cancer who is currently undergoing chemotherapy treatments. Utilizing conversation analysis (CA), attention is first given to a series of interactional dilemmas as GC delivers and P responds to negative, uncertain, and complex test results. Specific findings address practices employed by GC to structure the encounter and establish authority, impacts on P's participation and understandings, recurring and at times problematic orientations to "negative" findings, and inherent ambiguities faced by GC and P when attempting to discern good and bad news. Close examination of these moments provides a unique opportunity to identify, describe, and explain genetic counseling as a co-produced, interactional achievement. These findings are then integrated with patient's post-counseling survey (susceptibility, anxiety, uncertainty, fear, and hope), including reported experiences which broaden understandings of the interactional environment. Specific recommendations are raised for improving counseling skills, enhancing patients' understandings, and building therapeutic alliances addressing both patients' emotional circumstances and the complexities of genetic test results.
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Asesoramiento Genético , Telemedicina , Humanos , Incertidumbre , Consejo , ComunicaciónRESUMEN
The COVID-19 pandemic represented a unique information seeking and sharing context for billions of Internet users across the globe. Although previous research has established that people often seek health information on the Internet, including through social media platforms, there was a political element to pandemic responses that is not typical of health issues such as seasonal influenza or heart conditions. This unique context, in conjunction with the public posting of the novel coronavirus DNA by Chinese scientists in January 2020, begs for analysis of how people used social media in the early phase of the pandemic to make sense of the role of genetics in COVID-19. This study represents such an analysis as a qualitative content analysis of Facebook posts concerning genetics and COVID-19. Data were collected from March through August of 2020 to identify how genetics issues were being shared on Facebook and the types of accounts that were sharing that information. Through analysis, four themes emerged representing Facebook posts about genetics and COVID-19: disease risk, testing, vaccines, and virus characteristics. These posts appeared on eight types of accounts, with five of those representing 88% of the data: education, health, lifestyle, news, and political. Results are interpreted with constructs from media dependency theory and implications for future research are presented.
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COVID-19 , Medios de Comunicación Sociales , Humanos , COVID-19/epidemiología , Pandemias/prevención & control , SARS-CoV-2RESUMEN
PURPOSE: To explore the processes of community reintegration of children and families at least one year following a paediatric brain injury from the perspective of caregivers and outpatient/community service providers. MATERIALS AND METHODS: A qualitative analysis of semi-structured interviews from outpatient or community service providers (N = 14; occupational, physical, and speech and language therapists, neuropsychologists, school counsellors, recreational providers) and caregivers of six children (N = 8) at least one year after their injury. Interviews were transcribed and thematically coded using deductive (employing Bronfenbrenner's ecological systems theory) and inductive approaches. RESULTS: Themes from both providers and caregivers indicated additional supports needed at all levels of Bronfenbrenner's ecological systems theory (i.e., individual, microsystem, mesosystem/exosystem, macrosystem, chronosystem). Participants felt that several characteristics would be needed in an ideal service system following paediatric brain injury including: community solutions ("it takes a village"), long-term approaches to care, and new financial approaches. CONCLUSIONS: The results suggest that children and families have substantial community reintegration needs following paediatric brain injury. Multi-system interventions are needed to support long-term community reintegration, especially those that increase communication and support transitions. There is also a strong need for alternative funding to support these efforts.Implications for RehabilitationFamilies with a child with a moderate to severe brain injury face challenges with community reintegration a year or more after their child's injury.Effort should be put into helping families navigate the complex medical, insurance, and school systems with a navigator service and step-down care to ensure a continuum of care and to support community reintegration.Special support should be provided during transitions, such as transitions from hospital care to outpatient care, and across school transitions.
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Lesiones Encefálicas , Cuidadores , Niño , Comunicación , Familia , Necesidades y Demandas de Servicios de Salud , Humanos , Investigación CualitativaRESUMEN
Recent research of healthcare providers identifies the critical role that professional identity plays in the provision of healthcare, interactions within healthcare teams, and healthcare provider perceptions of their work. However, much remains to be known regarding the role of professional identity in routine interactions for emerging healthcare professionals. This study enriches understandings of this particular issue by exploring pediatric residents' experiences with a structured hand-off tool at a children's hospital in the western United States. This study employed qualitative interview methods and iterative interpretive qualitative data analysis. Participants were 20 residents in a children's hospital. Data analysis indicated that the discourses that disseminate negotiations of face can, and often do, take place during patient hand-off, as the statements exchanged between team members can maintain or threaten face and professional identity. We suggest that shifts in organizational culture and training are necessary to optimize the environment in which residents use structured hand-off. Further, the culture and practice of training emerging physicians should include attention to the important role of hand-off as a critical site of professional identity construction and negotiation.
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Pase de Guardia , Médicos , Niño , Atención a la Salud , Personal de Salud , Humanos , Grupo de Atención al Paciente , Investigación CualitativaRESUMEN
The script of parenting shifts when parents learn of their child's Down syndrome diagnosis. To build a theory of the diagnostic experience and early family sense-making process, we interviewed 33 parents and nine grandparents living in the United States who learned prenatally or neonatally of their child's diagnosis. The core category of rescuing hope for the future encompassed the social process of sense-making over time as parents managed their sorrow, shock, and grief and amassed meaningful messages that anchored them as they looked toward the future. Application of the theory to practice underscores the import of early professional support offered to parents at key points in the sense-making process: Early as they disclose the news of the diagnosis to family and friends, and later close friends and kin assimilate meaningful messages about what the diagnosis means as they recalibrate expectations for a hopeful future.
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Síndrome de Down , Responsabilidad Parental , Padres , Niño , Preescolar , Síndrome de Down/diagnóstico , Femenino , Pesar , Humanos , Lactante , Recién Nacido , Masculino , Madres , Embarazo , Estados UnidosRESUMEN
Family communication about health is critical for the dissemination of information that may improve health management of all family members. Communication about health issues, attitudes, and behaviors in families is associated with life expectancy as well as quality of life for family members. This study addresses family communication about health by examining individual roles for family health communication and factors related to these roles, among families of three different racial/ethnic groups: Caucasians, Latinos, and Pacific Islanders. Data were collected from 60 participants recruited as 30 family dyads, 10 from each group, through qualitative semistructured interviews. Interviews were conducted with each participant separately and then together in a dyadic interview. Two coders independently coded interview transcripts using NVivo 11. Results identified the family health communication roles of collector, disseminator, health educator, and researcher. We also identified several factors related to these roles using the lens of family systems theory-the presence of chronic conditions in the family, previous experience, medical education, and family hierarchy. Findings demonstrate many similarities and relatively few differences in the family health communication roles and the related factors among the families of different race/ethnicity. Conclusions highlight implications for future research and intervention development.
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Comunicación en Salud , Hispánicos o Latinos , Nativos de Hawái y Otras Islas del Pacífico , Población Blanca , Familia , Femenino , Humanos , Masculino , Investigación Cualitativa , Calidad de Vida , RolRESUMEN
Expanded carrier screening (ECS) is a genetic test that is designed to assess the risk of a healthy person passing down a genetic disorder, such as spinal muscular atrophy, to future children. ECS screens for up to several hundred disorders in one test, expanding on traditional carrier screening tests that target one or a few genetic disorders. However, little is known about how this health technology is being presented to the public in media coverage. Accordingly, this study is a qualitative content analysis of online news and information of ECS over a 6-year period, beginning in 2010 when the technology was publicly available. Results indicate that major coverage themes were consistent across the years included, although content within those themes changed over time. Using structuration theory to guide analysis, results reveal that online news and information from 2010 to 2015 structurated ECS as a health technology innovation, an opportunity for business and investment, and a tool for family planning. Results are discussed in terms of implications for future research, for health journalism practice, and for clinical interactions.
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Tamización de Portadores Genéticos , Internet , Medios de Comunicación de Masas , Humanos , Estudios Longitudinales , Investigación CualitativaRESUMEN
Hospital discharge processes are complex and confusing, and can detrimentally affect patients, families, and providers. This qualitative study investigated pediatric hospital discharge experiences from the perspectives of parents of children with acute and chronic health conditions, primary care providers, and hospitalists. Focus groups and interviews with parents, primary care providers, and hospitalists were used to explore discharge experiences and ideas for improvement offered by participants. Using an iterative approach to analyze data resulted in five major themes for discharge experiences: (a) discharge problems, (b) teamwork, (c) ideal discharge, (d) care chasm, and (e) discharge paradox. The first three themes concern practical issues, whereas the last two themes reflect negative emotional experiences as well as practical problems encountered in the discharge process. Improvements in communication were viewed as a primary strategy for improving the discharge process for better outcomes for patients, their families, and providers.
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Niño Hospitalizado/psicología , Continuidad de la Atención al Paciente/organización & administración , Alta del Paciente , Mejoramiento de la Calidad/organización & administración , Niño , Comunicación , Femenino , Grupos Focales , Médicos Hospitalarios/organización & administración , Humanos , Entrevistas como Asunto , Masculino , Afecciones Crónicas Múltiples/psicología , Afecciones Crónicas Múltiples/terapia , Grupo de Atención al Paciente/organización & administración , Relaciones Profesional-Familia , Investigación CualitativaRESUMEN
This study offers an initial theoretical understanding of nurse-CNA communication processes from the perspectives of nurses and CNAs who are providing direct care to residents in nursing homes. A grounded theory approach provided an understanding of nurse-CNA communication process within the complexities of the nursing home setting. Four themes (maintaining information flow, following procedure, fostering collegiality, and showing respect) describe the "rules of performance" that intertwine in nuanced relationships to guide nurse-CNA communication processes. Understanding how these rules of performance guide nurse-CNA communication processes, and how they are positively and negatively influenced, suggests that nurse-CNA communication during direct care of nursing home residents could be improved through policy and education that is specifically designed to be relevant and applicable to direct care providers in the nursing home environment.
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Comunicación , Asistentes de Enfermería/psicología , Casas de Salud , Personal de Enfermería/psicología , Teoría Fundamentada , Humanos , Atención Dirigida al Paciente/normasRESUMEN
A growing body of research has given attention to issues surrounding genetic testing, including expanded carrier screening (ECS), an elective medical test that allows planning or expecting parents to consider the potential occurrence of genetic diseases and disorders in their children. These studies have noted the role of the mass media in driving public perceptions about such testing, giving particular attention to ways in which coverage of genetics and genetic testing broadly may drive public attitudes and choices concerning the morality, legality, ethics, and parental well-being involved in genetic technologies. However, few studies have explored how mass media are covering the newer test, ECS. Drawing on health-related framing studies that have shown in varying degrees the impact particular frames such as gain/loss and thematic/episodic can have on the public, this study examines the frame selection employed by online media in its coverage of ECS. This analysis-combined with an analysis of the sources and topics used in such coverage and how they relate to selected frames-helps to clarify how mass media are covering an increasingly important medical test and offers considerations of how such coverage may inform mass media scholarship as well as health-related practices.
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Comercio/tendencias , Tamización de Portadores Genéticos/métodos , Asesoramiento Genético/métodos , Medios de Comunicación de Masas/tendencias , Femenino , Humanos , MasculinoRESUMEN
This study used structurating activity theory to analyze 21 conversations between genetic counselors and individuals at increased risk for familial colorectal cancer (CRC). The qualitative analysis revealed ways elements of family, primary healthcare, cancer prevention and treatment, and other systems emerged in intervention conversations as shaping CRC screening attitudes and behaviors. Results indicate that family stories, norms, and roles are resources for enacting health practices in families and that the authority of healthcare providers is a resource for making screening decisions. Conclusions include practical implications for using findings in clinical applications as well as future research directions to build on this exploratory study.
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Communication plays an important role in all aspects of the development and use of policy. We present a communication-centered perspective on the processes of enacting public health policies. Our proposed conceptual framework comprises 4 communication frames: orientation, amplification, implementation, and integration. Empirical examples from 2 longitudinal studies of school-based health policies show how each frame includes different communication processes that enable sustainable public health policy practices in school-based health initiatives. These 4 frames provide unique insight into the capacity of school-based public health policy to engage youths, parents, and a broader community of stakeholders. Communication is often included as an element of health policy; however, our framework demonstrates the importance of communication as a pivotal resource in sustaining changes in public health practices.
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Comunicación , Niños con Discapacidad/legislación & jurisprudencia , Servicios de Alimentación/organización & administración , Política Pública , Servicios de Salud Escolar/organización & administración , Niño , Humanos , Estudios Longitudinales , Sudoeste de Estados UnidosRESUMEN
Raising a child with disabilities involves balancing a number of challenges, including seeking and gaining support. A synthesis of past research on support for families is needed to map directions for future research. This article reviews the past 10 years of empirical research on formal and informal support for families of children with disabilities. The review includes quantitative and qualitative studies representing several disciplines. Nine focus areas are identified: well-being, resources and socioeconomic factors, culture and minorities, intervention, extended families, siblings, professional support relationships, religion, and policy. Research is synthesized within each of the focus areas and suggestions are provided for future communication research. Dominant theories in existing studies are reviewed with directions for future theory-driven communication research.