Attitudes and preferences towards palliative and end of life care in patients with advanced illness and their family caregivers in Latin America: A mixed studies systematic review

Mariana Dittborn*, Pamela Turrillas, Matthew Maddocks, Javiera Leniz Martelli

*Corresponding author for this work

Research output: Contribution to journalReview articlepeer-review

13 Citations (Scopus)

Abstract

Background:
Achieving universal access to palliative care is considered a global and equity priority. Understanding patients and caregivers’ attitudes and preferences towards palliative and end-of-life care in Latin America is essential to develop person-centred services in the region.

Aim:
To synthesize and appraise the evidence about patients with advanced illness and their caregivers’ attitudes and preferences towards palliative and end-of-life care in Latin America.

Design:
Mixed studies systematic review with sequential exploratory synthesis (thematic and narrative synthesis). Quality was assessed using the Mixed-Methods Appraisal Tool.

Data sources:
MEDLINE, Embase, PsychINFO, Lilacs, Web of Science, Scielo and Scopus to March 2021. Empirical studies examining patient or caregiver attitudes and/or preferences towards palliative and end-of-life care were included.

Results:
Of 3575 records screened, 45 articles were included, comprising 7 countries and a total of 1220 patients and 965 caregivers (26.8% non-cancer-related participants). Data were organized around seven themes: Symptom management and nutrition; End-of-life medical decisions; Communication patterns; Place of end-of-life care and death; God and religious community as source of hope and support; Caregiver’s role; and Mixed understandings of palliative care. Main findings include; conflicted views around palliative care and pain relief; patients’ preference to be informed about their condition contrasting with caregivers’ reluctance to discuss this with patients; common preference for shared decision-making; and overburdened caregivers lacking professional home-care support. Methodological flaws were found in general.

Conclusion:
Core themes provide context-specific evidence to inform the design of culturally sensitive palliative and end-of-life care services, models and public policies in Latin America.
Original languageEnglish
Pages (from-to)1434-1451
Number of pages18
JournalPalliative Medicine
Volume35
Issue number8
DOIs
Publication statusPublished - Sept 2021

Fingerprint

Dive into the research topics of 'Attitudes and preferences towards palliative and end of life care in patients with advanced illness and their family caregivers in Latin America: A mixed studies systematic review'. Together they form a unique fingerprint.

Cite this