Tomando decisões na atenção à saúde de crianças/adolescentes com condições crônicas complexas: uma revisão da literatura

Fernandez, Herminia Guimarães Couto; Moreira, Martha Cristina Nunes; Gomes, Romeu

doi:10.1590/1413-81232018246.19202017

Cited by 5 publications

(4 citation statements)

References 55 publications

(136 reference statements)

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“…We introduce the idea of sociomedical networks to interrogate the idea that medical decision-making is better understood from a theory of assemblages, than from theories of rational choice. On the one hand, EBM firmly maintains that the proper systematization of evidence can lead to health professionals and patients making better health decisions, while on the other hand systematization has not been the sole explanation for decision-making issues in health and medicine (Charles et al, 1999;Fernandez et al, 2019;Schöngut-Grollmus and Energici, 2021).…”

Section: Understanding Health Care Decisions Through a New Materialist Approach: Assembling Sociomedical Networkmentioning

confidence: 99%

“…A medical decision involves a cognitive and intellectual judgment when an individual is presented with different and complex medical alternatives. These alternatives often incorporate different variables that lead to a specific form of action ( Fernandez et al, 2019 ). Most of the time decisions are made under the uncertainty of the results, which “creates the need for probabilities and other mathematical/statistical tools to help guide decision-making” ( Mark, 2008 , p 16).…”

Section: Understanding Health Care Decisions Through a New Materialist Approach: Assembling Sociomedical Networkmentioning

confidence: 99%

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COVID-19 and Dispositions of the Chilean Healthcare System: Sociomedical Networks in Care Decisions of Chronic Illnesses

Schöngut-Grollmus

Energici

2021

Front. Sociol.

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This article is an empirical work on decision-making processes in the case of persons with chronic illnesses in the COVID19 pandemic context, regarding their medical care and self-care. Medical decisions are processes that guide the production of a health diagnosis or treatment, using the available information, where the patients’ preferences are often incorporated. This article tackles the impact of the pandemic on chronically ill patients’ medical decisions when the care system has been significantly altered by it. Considering that health decisions are importantly embedded in social and economic conditions, the pandemic affects a precarious care system and constrains individual possibilities. Chile has a weak support infrastructure for caregivers and a health care system that promotes private health and a low-quality public health system. Hence, the pandemic is an adverse context for chronically ill patients and it alters the conditions in which medical decisions are taken. We performed 10 interviews with chronically ill patients who took responsibility for their own health decisions: five patients diagnosed with common chronic diseases and five patients diagnosed with rare chronic diseases. After Reflexive Thematic Analysis, the results show that the Chilean health system is extremely precarious and that not many alternatives are or have been offered to chronically ill patients in the COVID19 context.

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Section: Understanding Health Care Decisions Through a New Materialist Approach: Assembling Sociomedical Networkmentioning

confidence: 99%

Section: Understanding Health Care Decisions Through a New Materialist Approach: Assembling Sociomedical Networkmentioning

confidence: 99%

COVID-19 and Dispositions of the Chilean Healthcare System: Sociomedical Networks in Care Decisions of Chronic Illnesses

Schöngut-Grollmus

Energici

2021

Front. Sociol.

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“…Because they are at home, their caregivers have more decision-making autonomy than when hospitalized, although these decisions are built and negotiated in pediatric outpatient clinics. Conflict is part of this decisionbuilding process, which can often turn the so-called "shared care" into a tool for convincing others to do what is best for them, without discussing the clinical scene's asymmetries (FERNANDEZ et al, 2019).…”

Section: Introductionmentioning

confidence: 99%

Negotiations in the Care of Chronically Ill Children: Building Possibilities in a Setting of Uncertainty

Fernandez

Moreira

2021

Physis

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Interested in exploring the construction of the negotiations present in the decision relationships in complex chronic care in pediatric outpatient settings, we approach Anselm Strauss and the concept of negotiated order and Annemarie Mol with the concept of decision logic associated with Latour actor-network theory. We used an ethnographic perspective of health research in the pediatric and stomatherapy outpatient clinics of a hospital located in the city of Rio de Janeiro, from July to December 2017. The interpretation of the field converged to two major axes: diagnosis and therapeutic itineraries, where care was performed through negotiation networks. These concerned the organization of the lives of people related to this care. This whole negotiation process took place in a hybrid scenario, marked by blurring across borders, where caregivers constantly negotiated the recognition of their children. Depending on the spaces and times of interaction, the actors moved through different identities, in a negotiation between how they recognized themselves and how they were recognized by people in complex chronic care. Negotiations in the observed care relationships took place between the uncertainties inherent to the health condition and the possibilities of living with that diagnosis.

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“…In this service, the nursing staff's work process is based on shared decision and linked to a family-centered care model for care therapeutic planning provided to children with chronic urinary and bowel diseases symptoms. Nurses are the professionals referred to carry out this function (16) .…”

Section: Introductionmentioning

confidence: 99%

Family experience of living with children and adolescents with bladder and bowel dysfunction

2020

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Objective: to understand the experience of families of living with children and adolescents with bladder and bowel dysfunction. Methods: a qualitative phenomenological interpretive research carried out through an in-depth open interview with parents of children and adolescents linked to Advanced Practice Nursing clinic in pediatric urology. Results: the following representative categories of the families’ experiences emerged: Knowledge and learning: building family knowledge; Living with the children’s BBD: symbolic representations; Management and adaptation to the children’s BBD: reorganizing family life. Final considerations: the experience of families related to positive and negative meanings, presence or absence of previous experiences, information gaps, learning process and access to specialized professional follow-up. Follow-up by nurses is important in pediatric urology care for the learning and consolidation of specific knowledge about bladder and bowel dysfunction.

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Tomando decisões na atenção à saúde de crianças/adolescentes com condições crônicas complexas: uma revisão da literatura

Cited by 5 publications

References 55 publications

COVID-19 and Dispositions of the Chilean Healthcare System: Sociomedical Networks in Care Decisions of Chronic Illnesses

COVID-19 and Dispositions of the Chilean Healthcare System: Sociomedical Networks in Care Decisions of Chronic Illnesses

Negotiations in the Care of Chronically Ill Children: Building Possibilities in a Setting of Uncertainty

Family experience of living with children and adolescents with bladder and bowel dysfunction

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