RESUMO
In Chile, local normative and guidelines place patient-centred care (PCC) as a desirable means and outcome for each level of health care. Thus, a definition of PCC is provided, and for the first time shared decision-making (SDM) is included as an intended practice. During the past five years the country has shown progress on the implementation of PCC. A large pilot study was conducted in one of the Metropolitan Health Services, and now the health authority is committed to escalate a PCC strategy nationwide. From the practice domain, most of the work is being placed on the training of health professionals. Patients' preparation for the clinical encounter is scarce, thereby limiting their potential to participate in their care. At the research domain, the country shows a strengthened agenda that has advanced from a diagnostic phase (including the exploration from social sciences) to a purposeful stage which involves the development of training programs, patient decision aids, international collaborations, and other PCC interventions. The country is now positioned to secure new initiatives to empower patients and allow them to take an active role, as a key component of PCC and SDM.
Assuntos
Tomada de Decisões , Participação do Paciente , Chile , Alemanha , Humanos , Projetos PilotoRESUMO
OBJECTIVE: To assess decisional conflict and knowledge about prematurity among mothers facing extreme premature delivery when the counseling clinicians were randomized to counsel using a validated decision aid compared with usual counseling. STUDY DESIGN: In this randomized trial, clinicians at 5 level III neonatal intensive care units in the US were randomized to supplement counseling using the decision aid or to counsel mothers in their usual manner. We enrolled mothers with threatened premature delivery at 220/7 to 256/7 weeks of gestation within 7 days of their counseling. The primary outcome was the Decisional Conflict Scale (DCS) score. One hundred mothers per group were enrolled to detect a clinically relevant effect size of 0.4 in the Decisional Conflict Scale. Secondary outcomes included knowledge about prematurity; scores on the Preparedness for Decision Making scale; and acceptability. RESULTS: Ninety-two clinicians were randomized and 316 mothers were counseled. Of these, 201 (64%) mothers were enrolled. The median gestational age was 24.1 weeks (IQR 23.7-24.9). In both groups, DCS scores were low (16.3 ± 18.2 vs 16.8 ± 17, P = .97) and Preparedness for Decision Making scores were high (73.4 ± 28.3 vs 70.5 ± 31.1, P = .33). There was a significantly greater knowledge score in the decision aid group (66.2 ± 18.5 vs 57.2 ± 18.8, P = .005). Most clinicians and parents found the decision aid useful. CONCLUSIONS: For parents facing extremely premature delivery, use of a decision aid did not impact maternal decisional conflict, but it significantly improved knowledge of complex information. A structured decision aid may improve comprehension of complex information. TRIAL REGISTRATION: Clinicaltrials.gov: NCT01713894.
Assuntos
Cuidadores/psicologia , Aconselhamento/métodos , Técnicas de Apoio para a Decisão , Lactente Extremamente Prematuro , Pais/psicologia , Adulto , Feminino , Idade Gestacional , Humanos , Recém-Nascido , Doenças do Prematuro/diagnóstico , Doenças do Prematuro/enfermagem , Terapia Intensiva Neonatal , Masculino , Gravidez , Taxa de Sobrevida , Resultado do Tratamento , Estados UnidosRESUMO
Background: There is a vast body of literature on deliberative, participative, or engaged democracy. In the area of health care there is a rapidly expanding literature on deliberative democracy as embodied in various notions of public engagement, shared decision-making (SDM), patient-centered care, and patient/care provider autonomy over the past few decades. It is useful to review such literature to get a sense of the challenges and prospects of introducing deliberative democracy in health care. Objective: This paper reviews the key literature on deliberative democracy and SDM in health care settings with a focus on identifying the main challenges of promoting this approach in health care, and recognizing its progress so far for mapping out its future prospects in the context of advanced countries. Method: Several databases were searched to identify the literature pertinent to the subject of this study. A total of 56 key studies in English were identified and reviewed carefully for indications and evidence of challenges and/or promising avenues of promoting deliberative democracy in health care. Results: Time pressure, lack of financial motivation, entrenched professional interests, informational imbalance, practical feasibility, cost, diversity of decisions, and contextual factors are noted as the main challenges. As for the prospects, greater clarity on conception of public engagement and policy objectives, real commitment of the authorities to public input, documenting evidence of the effectiveness of public involvement, development of patient decision supports, training of health professionals in SDM, and use of multiple and flexible methods of engagement leadership suited to specific contexts are the main findings in the reviewed literature. Conclusion: Seeking deliberative democracy in health care is both challenging and rewarding. The challenges have been more or less identified. However, its prospects are potentially significant. Such prospects are more likely to materialize if deliberative democracy is pursued more systematically in the broader sociopolitical domains. (AU)