Abstract
ABSTRACT Families experience significant emotional, physical, social and psychological difficulties and challenges at the end of life at home. Healthcare professionals’ care is key to the family's ability to continue to care for the ill person and fulfil dying wishes at home. This study aimed to comprehend families’ experiences concerning the end-of-life care attention received from health professionals at home. A narrative study was carried out with families cared for by the Primary Care System of a region of Pamplona, Spain. Nine families participated, including a minimum of two and a maximum of four people per family. Group and individual narrative interviews were conducted (9 family interviews and 23 individual interviews). These interviews were transcribed and analyzed using thematic narrative analysis. The themes identified were (1) experiencing the need to be cared for; (2) taking responsibility for the patient's care; and (3) missing continuity in patient care. This research revealed the deficiencies in health care experienced by families during end-of-life care. A change in the health care paradigm is necessary to ensure that professionals work together with families in patient care and include them in their care if the highest quality end-of-life care at home is to be achieved.
Published Version
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