Cuidado humanizado en pacientes con cáncer avanzado. Una perspectiva desde la diada paciente-familia / Palliative care and quality of life in patients with cancer during the terminal phase. A family/patient perspective

Objetivo: Explorar el significado del cuidado humanizado percibido por el cuidador familiar y la persona con cáncer avanzado. Método: Para realizar este estudio cualitativo, con enfoque fenomenológico interpretativo, se recopiló la información a través de entrevistas en profundidad y diarios de campo. Para el desarrollo de la interpretación hermenéutica se asumió la perspectiva de Heidegger, por lo que se siguieron las etapas de intencionalidad, reducción y constitución. En cuanto al análisis del discurso se utilizaron los constructos de Bardin: preanálisis, codificación, categorización e interpretación. Resultados: Se consideraron 17 diadas (paciente-familiar). Las percepciones del cuidado humanizado de enfermería se centraron en la relación transpersonal y los discursos recopilados refirieron una ausencia de cercanía entre enfermería y el paciente, cuyas principales expresiones eran la falta de comprensión emocional y la insatisfacción de necesidades. De dichos hallazgos se derivaron temas basados en la generación de una relación transpersonal de forma prioritaria, pasando por la satisfacción de las necesidades y el acompañamiento empático fundamental para el bienestar emocional. Conclusión: El cuidado humanizado desde las diadas abordadas contempla aspectos intangibles del cuidado, para lo cual enfermería requiere trabajar de manera colaborativa con sus colegas, con otros profesionales de la salud y también de forma interprofesional, incluyendo a las instituciones involucradas en la atención. Se requiere profundizar en la materialización de estas acciones.

Objective: To explore the meaning of palliative care as perceived by the family caregiver and the patient with advanced cancer. Method: Information was collected through in-depth interviews and field diaries to conduct this qualitative research study, with an interpretative phenomenological approach. We adopted Heidegger's perspective for the development of hermeneutic interpretation, and therefore followed the stages of intentionality, reduction, and constitution. We used Bardin's constructs of pre-analysis, coding, categorisation, and interpretation for the discourse analysis. Results: Seventeen patient-family caregiver dyads were considered. The perceptions of palliative nursing care focused on transpersonal relationships and the discourses referred to a lack of closeness between nursing staff and the patient. This was mainly expressed as a lack of emotional understanding and unmet needs. Themes were drawn from these findings based on developing a transpersonal relationship as a priority, including meeting needs and providing the empathic accompaniment that is fundamental for emotional well-being. Conclusion: From the perspective of the dyads, palliative care covers intangible aspects of care. This requires nursing staff to work collaboratively with colleagues, with other health professionals and interprofessionally, including the institutions involved in care. Further work is required to implement these actions.(AU)

Palliative care and quality of life in patients with cancer during the terminal phase. A family/patient perspective.

OBJECTIVE: To explore the meaning of palliative care as perceived by the family caregiver and the patient with advanced cancer. METHOD: Information was collected through in-depth interviews and field diaries to conduct this qualitative research study, with an interpretative phenomenological approach. We adopted Heidegger's perspective for the development of hermeneutic interpretation, and therefore followed the stages of intentionality, reduction, and constitution. We used Bardin's constructs of pre-analysis, coding, categorisation, and interpretation for the discourse analysis. RESULTS: Seventeen patient-family caregiver dyads were considered. The perceptions of palliative nursing care focused on transpersonal relationships and the discourses referred to a lack of closeness between nursing staff and the patient. This was mainly expressed as a lack of emotional understanding and unmet needs. Themes were drawn from these findings based on developing a transpersonal relationship as a priority, including meeting needs and providing the empathic accompaniment that is fundamental for emotional well-being. CONCLUSION: From the perspective of the dyads, palliative care covers intangible aspects of care. This requires nursing staff to work collaboratively with colleagues, with other health professionals and interprofessionally, including the institutions involved in care. Further work is required to implement these actions.