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What contributes to family carers’ decision to transition towards palliative-oriented care for their relatives in nursing homes? Qualitative findings from bereaved family carers’ experiences

Published online by Cambridge University Press:  24 August 2020

Silvia Gonella Open the ORCID record for Silvia Gonella [Opens in a new window] ,
Marco Clari ,
Ines Basso  and
Paola Di Giulio
Silvia Gonella*
Affiliation:
Department of Biomedicine and Prevention, University of Roma Tor Vergata, Roma, Italy Azienda Ospedaliero Universitaria Città della Salute e della Scienza di Torino, Torino, Italy
Marco Clari
Affiliation:
Department of Public Health and Pediatrics, University of Torino, Torino, Italy
Ines Basso
Affiliation:
Department of Public Health and Pediatrics, University of Torino, Torino, Italy
Paola Di Giulio
Affiliation:
Department of Public Health and Pediatrics, University of Torino, Torino, Italy
*
Author for correspondence: Silvia Gonella, Department of Biomedicine and Prevention, University of Roma Tor Vergata, Via Montpellier 1, 00133Roma, Italy; Azienda Ospedaliero Universitario Città della Salute e della Scienza di Torino, Corso Bramante 88-90, 10126Torino, Italy. E-mail: silvia.gonella@unito.it
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Abstract

Objectives

Family carers (FCs) of nursing home (NH) residents are best placed to notice deteriorations that signal impending death in their relative, which can open a conversation with healthcare professionals (HCPs) about adjusting the care plan. We explored contributors to bereaved FCs’ decision to transition towards palliative-oriented care for their relatives in NHs.

Methods

This qualitative descriptive study used a phenomenological design. Thirty-two bereaved FCs across 13 Italian NHs completed semi-structured interviews. Additional data were collected on NH referrals to palliative care services (PCS) in the 6 months before study start and treatments provided in the last week of life. Content analysis with a combined inductive and deductive approach was applied to identify codes and fit them into an a priori framework. When codes did not fit, they were grouped into new categories, which were finally gathered into themes.

Results

FCs reported four types of “trigger events” that made them doubt that their relative would recover: (1) physical deterioration (e.g., stopping eating/walking or swallowing problems); (2) social confirmation (e.g., confirming their relative's condition with friends); (3) multiple hospitalizations; and (4) external indicators (e.g., medical examinations by external consultants). A “resident-centered environment” helped FCs recognize trigger events and “raise awareness of the possibility of death”; however, the “need for reassurance” was pivotal to a “gradual transition towards palliative-oriented care”. When participants did not recognize the trigger event, their relative continued to receive curative-oriented care. NHs that referred residents to PCS discussed palliative-oriented care more frequently with FCs, had a lower nurse-to-resident and nurse aide-to-resident ratio, and administered more palliative-oriented care.

Significance of results

Trigger events represent an opportunity to discuss residents’ prognosis and are the starting point for a gradual transition towards palliative-oriented care. Adequate staffing, teamwork, and communication between FCs and healthcare professionals contribute to a sensitive, timely shift in care goals.

Keywords

CommunicationNursing homesOrganizational culturePalliative careQualitative research
Type
Original Article
Information
Palliative & Supportive Care , Volume 19 , Issue 2 , April 2021 , pp. 208 - 216
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Copyright
Copyright © The Author(s), 2020. Published by Cambridge University Press

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