RESUMEN
BACKGROUND AND OBJECTIVE: Long COVID (LC) refers to persistent symptoms after acute COVID-19 infection, which may persist for months or years. LC affects millions of people globally, with substantial impacts on quality of life, employment, and social participation. Ensuring access to effective, patient-centered care for LC demands evidence, grounded in inclusive representation of those affected by the condition. Yet survey studies frequently under-represent people with the most disabling disease presentations and racially and socioeconomically marginalized groups. We aimed to describe a patient-engaged approach to developing a survey to inform public LC health care and to assess its implementation in terms of enabling participation by diverse LC patients in Brazil. METHODS: Survey development was iterative, achieved through an interdisciplinary collaboration among researchers including people living with LC, and grounded in 3 guiding principles: (1) evidence-based; (2) inclusive, intersectional, and patient-centered understanding of chronic illness and research participation; and (3) sensitivity to the context of health-care access. RESULTS: The product of our collaboration was a longitudinal survey using a questionnaire assessing: LC symptoms; their clinical and functional evolution; and impacts on quality of life, household income, health service access, utilization, and out-of-pocket expenses. We illustrate how we operationalized our 3 principles through survey content, instrument design, and administration. Six hundred fifty-one participants with diverse LC symptoms, demography, and socioeconomic status completed the survey. We successfully included participants experiencing disabling symptoms, Black and mixed race participants, and those with lower education and income. CONCLUSION: By centering patient experience, our novel, principles-based approach succeeded in promoting equity, diversity, and inclusion in LC survey research. These principles guiding patient-engaged collaboration have broad transferability. We encourage survey researchers working on chronic illness and in other contexts of marginalization and inequality to adopt them.
Asunto(s)
COVID-19 , Humanos , Brasil , Femenino , Masculino , Persona de Mediana Edad , Adulto , Síndrome Post Agudo de COVID-19 , Encuestas y Cuestionarios , Accesibilidad a los Servicios de Salud/estadística & datos numéricos , SARS-CoV-2 , Participación del Paciente/estadística & datos numéricos , Equidad en Salud , Estudios Longitudinales , Anciano , Necesidades y Demandas de Servicios de Salud , Calidad de Vida , Disparidades en Atención de Salud/estadística & datos numéricos , Diversidad, Equidad e InclusiónRESUMEN
Large-scale (e.g., national) programs could strengthen safety culture, which is foundational to patient safety, yet we know little about how to optimize this potential. In 2013, Brazil's Ministry of Health launched the National Patient Safety Program, involving hospital-level safety teams and targeted safety protocols. We conducted in-depth qualitative case studies of National Patient Safety Program implementation in two hospitals, with different readiness, to understand how program implementation affected enabling, enacting, and elaborating processes that produce and sustain safety culture. For both hospitals, external mandates were insufficient for enabling hospital-level action. Internal enabling failures (e.g., little safety-relevant senior leadership) hindered enactment (e.g., safety teams unable to institute plans). Limited enactment and weak elaboration processes (e.g., bureaucratic monitoring) failed to institutionalize protocol use and undermined safety culture. Optimizing the safety culture impact of large-scale programs requires effective multi-level enabling and capitalizing on the productive potential of interacting national- and local-level influences.
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Seguridad del Paciente , Administración de la Seguridad , Brasil , Hospitales Públicos , Humanos , Investigación CualitativaRESUMEN
BACKGROUND: Maternal morbidity and mortality are still serious public health concerns in Brazil, and access to quality obstetric care is one critical point of this problem. Despite efforts, obstetric care quality problems and sub-optimal/poor outcomes persist. The study aimed to identify contextual elements that would potentially affect the implementation of an obstetric care quality improvement intervention. METHODS: A qualitative study was conducted in three public maternity hospitals of a large Brazilian city, with high annual volume of births and buy-in from high-level managers. Individual interviews with doctors and nurses were conducted from July to October 2015. Semi-structured interviews sought to explore teamwork, coordination and communication, and leadership, being open to capture other contextual elements that could emerge. Interviews were recorded and transcribed, and the categories of analysis were identified and updated based on the constant comparative method. RESULTS: Twenty-seven interviews were carried out. Extra-organizational context concerning the dependence of the maternity hospitals on primary care units, responsible for antenatal care, and on other healthcare organizations' services emerged from interviews, but the main findings of the study centered on intra-organizational context with potential to affect healthcare quality and actions for its improvement, including material resources, work organization design, teamwork, coordination and communication, professional responsibility vis-à-vis the patient, and leadership. A major issue was the divergence of physicians' and nurses' perspectives on care quality, which in turn negatively affected their capacity to work together. CONCLUSION: Overall, the findings suggest that care on the maternity hospitals was fragmented and lacked continuity, putting at risk the quality. Redesigning work organization, promoting conditions for multi-professional teamwork, better communication and coordination, improving more systemic accountability/lines of authority, and investing in team members' technical competence, and fitness of organizational structures and processes are all imbricated actions that may contribute to obstetric care quality improvement.
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Maternidades , Servicios de Salud Materna/organización & administración , Enfermería Obstétrica/organización & administración , Obstetricia/organización & administración , Mejoramiento de la Calidad , Anestesiólogos , Brasil , Comunicación , Conducta Cooperativa , Atención a la Salud , Femenino , Hospitales Públicos , Humanos , Liderazgo , Servicios de Salud Materna/normas , Neonatólogos , Enfermeras y Enfermeros , Enfermería Obstétrica/normas , Obstetricia/normas , Grupo de Atención al Paciente , Médicos , Embarazo , Atención Prenatal , Investigación CualitativaRESUMEN
In this article, we present a psychosocial theory of partnership, illustrated with case studies from Cambodia and Brazil. Partnerships are conceptualised as encounters with the knowledge of self and others, entailing processes of representation and communication between all stakeholders involved, and shaped by institutional and sociocultural contexts. We argue that partnership is an evolving practice that requires critical reflection and the creation of enabling institutional contexts. As such, it must be understood not as a tool for intervention, but as part of the intervention and definition of success.