Humanización del cuidado, vivencias, experiencias y percepciones de personas con enfermedades crónicas en un área sanitaria de la provincia de Sevilla

Résumé

Introduction: The high morbidity and mortality rate for chronic illnesses, as well as their continuing rate of growth, poses a major problem for public health and they may even become socially and economically unsustainable in the future (Ministerio de Sanidad y Consumo, 2013; Organización Mundial de la Salud, 2013; Serra-Sutton et al., 2016). Faced with such a situation, it is recommended that attention be focused on the person with the chronic illness, rather than on the illness itself, amongst other measures. Professionals must address the situation from a multi-disciplinary, holistic and integrated perspective (Department of Health. Local Government of Andalusia, 2012; Sánchez-Martín, 2014), based on bioethics and its principles for taking care of people’s health (Bermejo, 2014; Devesa, Moreno, Bermejo Higuera, & Galán González-Serna, 2014; Torralba i Roselló, 2002). By following this approach, we see a greater level of patient involvement, empowerment and engagement in terms of their illness (Department of Health. Regional Government of Andalusia, 2012; Jimenez-Navascués, Orkaizaguirre- Gómara, & Bimbela-Serrano, 2015; Regional Government of Castilla y León, 2013). Objectives. To explore the experiences and perceptions of chronically ill patients at San Juan de Dios del Aljarafe Hospital, regarding the care received from nursing staff and humanization care. The aim of this is to gain a deeper insight into what can be done to improve healthcare. Methodology. This qualitative study has been carried out using interpretative phenomenological-hermeneutical methodology. This method was chosen as it is the most appropriate for the purpose of this study (Palacios-Ceña & Corral Liria, 2010). A theoretical sample was obtained and completed through saturation with information received from people with multiple chronic pathologies who have been admitted to San Juan de Dios del Aljarafe Hospital (Bormujos, Seville) at least once over the course of the past year. Information was obtained by means of in-depth interviews, semi-structured interviews, and field notes. The computer programme GSR NUDIST-vivo version 11 was used. Results. The analysis was carried out following Van Manen's four lifeworld existentials: lived space, lived body, lived time and lived relation. Those interviewed have brought meaning to humanization care in terms of the characteristics it should have, namely communication, presence, empathy, training, etc. Characteristics which contribute to dehumanization, such as excessive workload and the personality traits of the professionals, are also highlighted. Furthermore, their experiences regarding the illness and how they have impacted upon the patients and their families are analysed. Lastly, their relationships with the professionals and other people who accompany and surround them, in terms of verbal and non-verbal communication, are also analysed, amongst other aspects. Discussion. Often, findings point to the existence of a biomedical model, although patients hope/ask to be treated by compassionate nurses (Escobar Rivero & Lorenzini Erdmann, 2007). It is also common for family members and patients to overestimate the technical abilities and, to a lesser extent, the manner that nurses use to interact with patients (Beltrán Salazar, 2016). These points are contrary to our findings, which demonstrate that ‘it is not only the doing, but also the feeling and the being which count’. We also differ from studies which include professionals and family members stating that they don’t feel there is humanization care (Espinoza Medalla et al., 2010; González-Ruiz et al., 2013; Suarez Baños, 2015). There are studies that corroborate our own findings in terms of the concepts which form part of humanization care, amongst other things. These include positive verbal and non-verbal communication, respect, helpfulness and presence (Espinosa Aranzales et al., 2015). The idea of focusing training on humanism and on skills relating to assistance and communication is also strengthened (Valenzuela Anguita, 2015). This places value on the role of holistic nurses in looking after patients (Clebenson de Oliveira et al., 2015; Hueso Navarro et al., 2012; Lenis-victoria, 2015; Lenis Victoria, 2013). Conclusions. Chronically ill patients admitted to the San Juan del Aljarafe Hospital feel they receive humanization care and describe the intrinsic characteristics that define such care. They recognise and value behind-the-scene care or nursing care. Based on their experiences, we are able to identify the structural aspects of the organisation and its personnel which are necessary to improve hospital stays for patients and their families. Likewise, circumstances that can lead to dehumanization care are identified, in addition to the consequences this can have for the autonomy of chronically ill patients and how they cope with their condition. The focus of this study, carried out from the perspective of patients, has not been found in any other literature in our field of study. Therefore, the data drawn from it will undoubtedly contribute to improving care given to chronically ill patients in the healthcare settings detailed herein.