RESUMEN
Persistent, subjective symptoms of unknown etiology following treatment for Lyme disease have been termed post- treatment Lyme disease syndrome or chronic Lyme disease (PTLDS/CLD). The objective of this study was to give primacy to the patient experience of this medically contested condition by eliciting patient illness narratives and identifying emergent issues through semistructured interviews conducted among 29 participants. We used thematic narrative analysis to identify three predominant themes: (a) Physical and social limitations lead to a "new normal" characterized by fundamental shifts of ways of being in the world, (b) disease-specific factors contribute to symptom and illness invisibility that affects social support in nuanced ways, and (c) pervasive medical uncertainty regarding PTLDS/CLD promotes an increased sense of personal responsibility for care. Similar to other contested or medically unexplained syndromes, our findings suggest that the social sequelae of PTLDS/CLD can be equally protracted as the physical effects of this illness.
Asunto(s)
Enfermedad de Lyme/psicología , Enfermedad Crónica , Femenino , Estado de Salud , Humanos , Relaciones Interpersonales , Masculino , Salud Mental , Persona de Mediana Edad , Narración , Apoyo SocialRESUMEN
Patient safety research has to date offered few opportunities for patients and families to be actively involved in the research process. This article describes our collaboration with patients and families in two separate studies, involving end-of-life care and infection control in acute care. We used the collaborative methodology of video-reflexive ethnography, which has been primarily used with clinicians, to involve patients and families as active participants and collaborators in our research. The purpose of this article is to share our experiences and findings that iterative researcher reflexivity in the field was critical to the progress and success of each study. We present and analyze the complexities of reflexivity-in-the-field through a framework of multilayered reflexivity. We share our lessons here for other researchers seeking to actively involve patients and families in patient safety research using collaborative visual methods.
Asunto(s)
Investigación sobre Servicios de Salud , Participación del Paciente , Seguridad del Paciente , Grabación en Video , Antropología Cultural , Cuidados Críticos/métodos , Cuidados Críticos/normas , Infección Hospitalaria/prevención & control , Familia , Humanos , Cuidado Terminal/métodos , Cuidado Terminal/normasRESUMEN
Achieving equitable access to health care is an important policy goal, with access influenced by affordability, availability, and acceptability of specific services. We explore patient narratives from a 5-year program of research on health care access to examine relationships between social constructions of illness and the acceptability of health services in the context of tuberculosis treatment and antiretroviral therapy in South Africa. Acceptability of services seems particularly important to the meanings patients attach to illness and care, whereas-conversely-these constructions appear to influence what constitutes acceptability and hence affect access to care. We highlight the underestimated role of individually, socially, and politically constructed healthworlds; traditional and biomedical beliefs; and social support networks. Suggested policy implications for improving acceptability and hence overall health care access include abandoning patronizing approaches to care and refocusing from treating "disease" to responding to "illness" by acknowledging and incorporating patients' healthworlds in patient-provider interactions.
Asunto(s)
Infecciones por VIH/psicología , Conocimientos, Actitudes y Práctica en Salud , Accesibilidad a los Servicios de Salud , Tuberculosis/psicología , Adulto , Antirretrovirales/uso terapéutico , Enfermedad Crónica , Femenino , Infecciones por VIH/diagnóstico , Infecciones por VIH/tratamiento farmacológico , Política de Salud , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Narración , Política , Embarazo , Relaciones Profesional-Paciente , Sudáfrica , Tuberculosis/diagnóstico , Tuberculosis/tratamiento farmacológico , Adulto JovenRESUMEN
Health-care-associated infections (HAIs) remain a major patient safety problem even as policy and programmatic efforts designed to reduce HAIs have increased. Although information on implementing effective infection control (IC) efforts has steadily grown, knowledge gaps remain regarding the organizational elements that improve bedside practice and accommodate variations in clinical care settings. We conducted in-depth, semistructured interviews in 11 hospitals across the United States with a range of hospital personnel involved in IC (n = 116). We examined the collective nature of IC and the organizational elements that can enable disparate groups to work together to prevent HAIs. Our content analysis of participants' narratives yielded a rich description of the organizational process of implementing adherence to IC. Findings document the dynamic, fluid, interactional, and reactive nature of this process. Three themes emerged: implementing adherence efforts institution-wide, promoting an institutional culture to sustain adherence, and contending with opposition to the IC mandate.