"Estar tranquila": la experiencia del descanso de cuidadoras de pacientes con demencia avanzada

Abstract

Objective: To understand caregivers’ experience of rest.

Method: We performed a qualitative study guided by grounded theory procedures. This study forms part of a wider study about burden relief in vulnerable situations. Seventeen women family caregivers of patients with advanced dementia were purposely sampled. Data were collected with 17 semi-structured interviews and were analyzed following grounded theory procedures.

Results: Caregivers did not rest as previously, with rest being incomplete and depending on the well-being of the sick relative. In this study, tranquillity emerged as the central element of this new experience of rest. Rest was perceived as an interpreted experience involving organizational and emotional effort. Caregivers created and negotiated conditions that would provide the tranquillity to be able to rest.

Conclusions: The present study provides greater insight into the experience of relief from the burden of care and highlights the moral connotation present in family care. Identifying how caregivers rest and what subjectively enables them to do so will not only help healthcare professionals to support and promote rest, but will also help to avoid blaming caregivers for not being able or wanting to rest. Support services should bear in mind the change that has taken place in the experience of relief in caregivers’ lives.