ArticleBMC palliative care2021
The relationship between proxy agency and the medical decisions concerning pediatric patients in palliative care: a qualitative study.
Article in BMC palliative care, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
4 citing papers in PubMed, 1 synthesis or guideline pooled it, 11 citations in OpenAlex.
- Physician decision-making process about withholding/withdrawing life-sustaining treatments in paediatric patients: a systematic review of qualitative evidence.BMC palliative care · 2022Pooled it
- Relational autonomy in pediatric healthcare: A scoping review.Nursing ethics · 2026Review
- How are agency and autonomy understood in children's palliative and end-of-life care?: A narrative review.Palliative care and social practice · 2026Review
- Ethical Issues in Care and Treatment of Neuronal Ceroid Lipofuscinoses (NCL)-A Personal View.Frontiers in neurology · 2021Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors at 4 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe children's agency and that exercised by parents and health professionals in palliative care, along with structural limitations imposed by the conditions of inequality, will provide a new perspective from medical anthropology and biomedicine to improve pediatric palliative care in complex therapeutic scenarios. The main purpose of the study was to analyze the ways in which pediatric patients have agency in relation to their parents and palliative care (PC) professionals within the hospital setting, as well as the structural circumstances that constrain said agency.
methodA hospital ethnography (by means of non-participant observation and interviews) of the palliative care (PC) unit in a children's hospital was conducted over the course of six months. A thematic analysis was performed using the ATLAS.ti software .
resultsThirteen cases were reconstructed of underage patients of both sexes patients together with their families; five health professionals were interviewed. The analysis identified the following 6 thematic axes, around which this article is organized: 1. The relationship between the exercise of proxy agency and the medical decisions concerning underage patients. 2. Negotiating agency and support in decision-making. 3. Child autonomy. 4. The experiences of health professionals. 5. Limitations of palliative care. 6. Bureaucratization of palliative care.
conclusionsIn pediatric palliative care, agency is a process whereby different agencies intertwine: lack of pediatric patients 'agency, the parents' agency, the parents' agency as representatives of their children (proxy agency), and the agency of health professionals. The concept of relational agency is proposed, defined as a set of group actions and decision-making centered around the pediatric patients's agency and the proxy agency.
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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.