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BMC Palliative Care

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01-12-2020 | Care | Research article

Understanding family caregivers’ needs to support relatives with advanced progressive disease at home: an ethnographic study in rural Portugal

Authors: Maria João Cardoso Teixeira, Wilson Abreu, Nilza Costa, Matthew Maddocks

Published in: BMC Palliative Care | Issue 1/2020

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 and 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.

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Title: Understanding family caregivers’ needs to support relatives with advanced progressive disease at home: an ethnographic study in rural Portugal
Authors: Maria João Cardoso Teixeira
Wilson Abreu
Nilza Costa
Matthew Maddocks
Publication date: 01-12-2020
Publisher: BioMed Central
Keyword: Care
Published in: BMC Palliative Care / Issue 1/2020
Electronic ISSN: 1472-684X
DOI: https://doi.org/10.1186/s12904-020-00583-4

Keynote webinar | Spotlight on sleep in brain health

Springer Medicine

Understanding family caregivers’ needs to support relatives with advanced progressive disease at home: an ethnographic study in rural Portugal

Abstract

Background

Methods

Results

Conclusions

Keynote webinar | Spotlight on sleep in brain health

Springer Medicine

Abstract

Background

Methods

Results

Conclusions

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