Abstract
Background: High emergency care use in Portugal, particularly in low-density, highly dispersed population areas, like the Alentejo coast, challenge health services into a transition toward a model of care that prioritizes prevention, proximity, comprehensiveness, coordination, and sustainability. In late 2021, the Local Health Unit of Litoral Alentejano, prioritized redesigning its emergency services, employing a process-based approach to enhance continuity and user-centered care through the active engagement of both healthcare professionals and users. This study synthesis evidence on user experiences navigating emergency care, focusing key mechanisms that shape it: user goals and expectations, communication, continuity of care, and user-involvement.
Approach: A qualitative study used pre-tested, semi-structured interviews, with ethical approval from the health unit's ethics committee. Sampling followed a quasi-random quota approach, considering age groups and Manchester triage categories. A multi-stage sampling strategy identified users at two time points. Participants had to be aged 18 or older and to have experienced at least one emergency care episode within the 15 days preceding recruitment. Data were collected from March 30 to May 27, 2022, via in-person and phone interviews, involving 10 users, 4 informal caregivers, and 1 formal caregiver. A thematic analysis was made for the full corpus of the interviews and results were presented to interviewees for interpretation validity.
Results: Data analysis highlighted inconsistent experiences through emergency care influenced by team composition, care practices, and demand intensity, and eleven key categories were identified associated to those experiences: informational, management, and longitudinal continuity; informing and listening; shared decision-making and self-management; physical and emotional comfort; humanized interpersonal relationships and humanization at both the organizational and system levels.
Users brought evidence to a poor collective memory system to ensure seamless information flow between specialists, care levels, and emergency events, often leaving them to mediate and repeatedly provide their medical histories. Inconsistent recommendations among multiple providers, poor collaborative care, weak follow-up mechanisms, and referral issues were linked to negative experiences. Proactive and timely communication, as active listening and clear information on procedures, waiting times, diagnoses, treatment plans, and follow-ups, was also identified as valued.
The humanization of care—particularly the quality of interpersonal relationships with healthcare teams—and responsiveness to physical and emotional needs of users emerged as a significant factor impacting user experience. Interviewees tended to downplay negative experiences to systemic shortcomings related to the local health unit or the broader healthcare system, citing issues such as time constraints, staff shortages and stress. The findings also underscored users as vigilant observers, showing empathy toward the more vulnerable and understanding prioritization of urgent cases, which helps them contextualize and accept longer waiting times.
Implications: The findings emphasized both the intrinsic and instrumental value of user engagement in healthcare redesign. On one hand, it acknowledges the complementarity of users' experiential knowledge, offering a deeper understanding into the challenges of integrating and personalizing care, while fostering more trusting relationships between communities and healthcare organizations. On the other hand, inclusive collaboration provides practical guidance for implementing interventions that are relevant, context-sensitive, and sustainable over time.