ArticleBMC palliative care2020
Understanding family caregivers' needs to support relatives with advanced progressive disease at home: an ethnographic study in rural Portugal.
Article in BMC palliative care, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers, 1 of them a synthesis that pooled it.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
11 citing papers in PubMed, 1 synthesis or guideline pooled it, 36 citations in OpenAlex.
- Effectiveness of interventions for informal caregivers of people with end-stage chronic illness: a systematic review.Systematic reviews · 2024Pooled it
- Social Determinants Influencing Internet-Based Service Adoption Among Female Family Caregivers in Bangladesh: A Sociodemographic and Technological Analysis.Health science reports · 2025Article
- Determinants of quality of life decrease in family caregivers of care-dependent patients: a longitudinal study.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Article
- The needs of family caregivers providing palliative home care in Portugal: a multi-stage mixed methods study protocol.Frontiers in public health · 2025Article
- Assessing the Impact of Multidisciplinary Collaboration on Quality of Life in Older Patients Receiving Primary Care: Cross Sectional Study.Healthcare (Basel, Switzerland) · 2024Article
- Validating interRAI Chinese self-reported carer needs (SCaN) assessment and predicting caregiving distress among informal Chinese caregivers of older adults.BMC geriatrics · 2024Article
- Advance care planning with older Norwegian adults in their homes: a narrative ethnographic study.BMC palliative care · 2024Article
- Family-Centered Care Experiences in Elderly with Chronic Diseases in Communities: Qualitative Study of Patients, Families, Nurses, and Volunteers.Health equity · 2024Article
- Exploring the needs and coping strategies of family caregivers taking care of dying patients at home: a field study.BMC palliative care · 2023Article
- "A proof of life" through transition from hospital to home after a stroke in a Portuguese setting - a multi-perspective, longitudinal qualitative study.International journal of qualitative studies on health and well-being · 2023Article
- Exploring the Support and Involvement of Family Caregivers for Reablement Programs: A Qualitative Study.Journal of multidisciplinary healthcare · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors at 4 institutions in 2 countries.
Funding
Abstract
backgroundFamily 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.
methodsAn 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.
resultsFive 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.
conclusionsThese 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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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.