Understanding Family Caregivers’ Needs to Support Relatives with Advanced Progressive  Disease at Home: An Ethnographic Study in Rural Portugal

Abstract

Background: Family caregivers play an important role supporting their relatives with advanced progressive disease to live at home. There is limited research to understand family caregiver needs over time, particularly outside of high-income settings. The aim of this study was to explore family caregivers’ experiences of caring for a relative living with advanced progressive disease at home, and their perceptions of met and unmet care needs over time. Methods: An ethnographic study comprising observations and interviews. A purposive sample of 10 family caregivers and 10 relatives was recruited within a rural area in the north of Portugal. Data were collected between 2014-16 using serial participant observations (n=33) and in-depth interviews (n=11). Thematic content analysis was used to analyse the data. Results: Five overarching themes were yielded: (1) provision of care towards independence and prevention of complications; (2) perceived and (3) unknown caregiver needs; (4) caregivers’ physical and emotional impairments; and (5) balancing limited time. An imbalance towards any one of these aspects may lead to reduced capability and performance of the family caregiver, with increased risk of complications for their relative. However, with balance, family caregivers embraced their role over time. Conclusions: These findings enhance understanding around the needs of family caregivers, which are optimally met when professionals and family caregivers work together with a collaborative approach over time. Patients and their families should be seen as equal partners. Family-focused care would enhance nursing practice in this context and this research can inform nursing training and educational programs.

Rol del cuidador familiar novel de adultos en situación de dependencia: Scoping Review

“…El rol del cuidador es cada vez más complejo, ya que implica brindar asistencia diaria en actividades básicas, proporcionar ayuda relacionada con la atención de salud 54 , tomar decisiones subrogadas, dar apoyo emocional entre otras 63 ; lo que puede desencadenar en el cuidador sobrecarga y afectación de su desempeño 64 , aunque los cuidadores noveles asumen una amplia gama de roles y responsabilidades, generalmente lo hacen sin suficiente educación, capacitación o apoyo. La investigación actual, muestra que la disponibilidad y la preparación de los cuidadores pueden afectar la calidad y el curso de la atención que reciben los pacientes en el hogar, por lo que el profesional de enfermería, debe identificar las habilidades del cuidador novel, brindar soporte de forma continua y coordinada, con el fin de que este pueda implementar medidas tempranas tendientes a la restauración de aspectos funcionales, psíquico, educacional, social, profesional y ocupacional de la persona dependiente y a su vez propender por su propio cuidado 65 .…”