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. 2020 May 25;19(1):73.
doi: 10.1186/s12904-020-00583-4.

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

Maria João Cardoso Teixeira  1 , Wilson Abreu  2 , Nilza Costa  3 , Matthew Maddocks  4
Affiliations

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

Maria João Cardoso Teixeira et al. BMC Palliat Care. .

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.

Keywords: Advanced disease; Ethnography; Family caregiver; Home; Interviews; Needs; Nursing; Observations; Qualitative research.

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Conflict of interest statement

The authors declare that have no competing interests.

Figures

Fig. 1
Fig. 1
Family Caregivers’ Needs to Support of Relatives with Advanced and Progressive Disease at Home
See this image and copyright information in PMC

References

    1. Kunst A, Stronks K, Agyemang C. Non-communicable diseases. Migration and health in the European Union. 2011. p. 116.
    1. Smith S, Brick A, O’Hara S, Normand C. Evidence on the cost and cost-effectiveness of palliative care: a literature review. Palliat Med. 2013;9:2013. doi: 10.1177/0269216313493466. - DOI - PubMed
    1. Associação Portuguesa de Cuidados Paliativos . Desenvolvimento dos Cuidados Paliativos em Portugal. Lisboa: Associação Portuguesa de Cuidados Paliativos; 2016.
    1. Gomes B, Calanzani N, Curiale V, McCrone P, Higginson IJ. Brito Md. Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers. Sao Paulo Med J. 2016;134(1):93–94. doi: 10.1002/14651858.CD007760.pub2. - DOI - PMC - PubMed
    1. Sarmento VP, Higginson IJ, Ferreira PL, Gomes B. Past trends and projections of hospital deaths to inform the integration of palliative care in one of the most ageing countries in the world. Palliat Med. 2016;30(4):363–373. doi: 10.1177/0269216315594974. - DOI - PMC - PubMed