Perceptions of care and family support for patients and caregivers during the COVID-19 pandemic: A phenomenological study in Spain.

Abstract

Since March 2020 with the declaration of the COVID-19 pandemic and during the health crisis, health authorities recommended restriction measures to minimize the risk of contagion and avoid the collapse of health centers. The restrictive health and safety measures conditioned the way in which patients were cared for, as well as their social and family life. The study aimed to explore the perceptions of patients and family caregivers about family care and support during hospitalization in the context of the COVID-19 pandemic in a Regional Hospital. Using a qualitative phenomenological approach, the study collected data through 30 semi-structured interviews with patients and caregivers and field diaries. Thematic analysis was used to identify themes and subthemes, ensuring rigor through multiple coding and systematic comparisons. The findings underscore the profound emotional toll patients and their caregivers experienced due to restricted visitation policies during the pandemic. Limited family support led to feelings of loneliness, isolation, and emotional distress among patients, exacerbating their vulnerability. Participants highlighted the critical role of family presence in improving emotional stability and physical recovery, emphasizing the importance of fostering psychological resilience in healthcare settings. Additionally, the study revealed inconsistencies in communication and information dissemination, which exacerbated stress and confusion among participants. Clear, consistent, and empathetic communication strategies were considered essential for patient care and satisfaction. Participants expressed gratitude toward healthcare professionals and advocated for a person-centered approach that addresses not only clinical but also emotional and psychological needs. The study highlights the need to improve care for vulnerable populations, such as those at the end of life, to ensure dignified and compassionate care. It also highlights the importance of post-discharge support and follow-up care for patients recovering from serious illnesses. The findings provide valuable information to improve patient-centered care and inform future healthcare protocols amid health crises such as COVID-19. WHAT IS ALREADY KNOWN ABOUT THIS TOPIC The COVID-19 pandemic led to high cases, hospitalizations, and deaths in Spain and the Balearic Islands. We shed light on the severe impact of the initial wave of the pandemic on vulnerable populations, particularly frail and advanced patients, as well as those with dementia, leading to devastating outbreaks in nursing homes. These distressing statistics serve as a testament to the multifaceted costs of COVID-19, encompassing human, social, and economic dimensions, both locally and globally. Vulnerable individuals were disproportionately affected, especially in nursing homes. Stringent isolation measures were advised to prevent overwhelming healthcare facilities, inadvertently affecting patient care, social dynamics, and family lives. Isolation and confinement disproportionately impacted vulnerable individuals, exacerbating their health conditions and resulting in increased psychotropic drug usage, delayed surgeries, and heightened morbidity and mortality rates. WHAT DOES THIS PAPER ADD The findings highlight the emotional toll on patients and caregivers due to restricted visitation during the pandemic. Limited family support led to loneliness and distress, increasing vulnerability. Participants stressed the importance of family presence for emotional stability and physical recovery, emphasizing psychological resilience in healthcare. Our study also revealed communication inconsistencies, increasing stress and confusion. Clear and empathetic communication was deemed essential for patient satisfaction. Participants expressed gratitude to healthcare professionals and advocated for a person-centered approach addressing both clinical and emotional needs. The study underscores the need to improve care for vulnerable populations, like those at the end of life, ensuring dignified care. It also highlights the importance of post-discharge support and follow-up care for recovering patients. WHAT ARE THE IMPLICATIONS This study improves understanding, helping researchers, healthcare professionals and decision-makers to address pandemic challenges effectively in the future healthcare crises like COVID-19.