Incerteza dos cuidadores familiares na doença de pacientes sob cuidados paliativos e fatores associados

Abstract

Objective to describe the level of uncertainty in illness in family caregivers of palliative care patients and detect associations between the profile of the caregiver and the levels of uncertainty.Method descriptive correlational study conducted with 300 family caregivers of hospitalized patients. The sociodemographic characterization of caregiver and patient was used to assess the caregiver profile, as well as the Uncertainty in Illness scale for family caregivers. Spearman’s Rho correlation test was applied to detect associations.Results the average score of illness uncertainty was 91.7 points. The analysis showed significant correlations between the level of uncertainty and patient dependence (r=0.18, p=0.001), symptom assessment (r=0.312, p<0.001), length of service as a caregiver (r=0.131, p=0.023), perception of support from health professionals (r=-0.16, p=0.048), family (r=-0.145, p=0.012) and religious support (r=-0.131, p=0.050).Conclusions there were high levels of uncertainty in caregivers about their patient’s illness. These levels are associated with the health condition and symptoms of the patient who is cared for, the length of service as a caregiver and the perceived support from health professionals, family and religion.

Existential transformations in the process of facing amyotrophic lateral sclerosis by the family caregiver

“…One of the strategies used by family caregivers who experienced this process was not to anticipate the suffering of the loss, not to focus on the next events, to live one day at a time, seeking to meet the demands at the moment they arise, which was perceived as a way to uncomplicate and mitigate the suffering inherent to the experienced process: The family caregiver opted to gradually enter the worldof-ALS, demonstrating awareness of its evolution, without anticipating stages that would bring suffering in the future. In the chronic disease, a high level of uncertainty is common to family caregivers, before and in the progress of the disease and with an increase in the proximity of finitude (9) . Thus, the world-of-ALS was not restricted to the disease's carrier, as their family members accompanied and experienced their devastating progress and, in view of this circumstance, the family caregiver persisted in enabling comfort through small attitudes that were within their reach:…”

“…It is observed, then, that as the disease progresses and the end of life is perceived, the people responsible for providing care need to make changes and restructure their lives so that they can adapt to a new reality of insertion in the world, which supports a process of building new meanings, representations and attitudes (9) .…”

“…Religiosity was used as a way to encourage hope for healing and restructuring of life during treatment. Religious support is presented as an inverse association with uncertainties, which the disease causes in caregivers' lives, showing the importance of religious environments for family support at the end of life (9) . Fearing for, is another Heideggerian conception where you can be afraid instead of another, which makes you fear also with the other, not removing your own fear.…”

“…It is observed that, as the disease progresses and the end of life is perceived, the people responsible for providing care need to make changes and restructure their lives so that it is possible to adapt to a new reality of insertion in the world, which supports a process of construction of new meanings, representations and postures (9) . Resignification is a process of subjectification by which the person appropriates his condition, an act that causes a reorganization, changes and a new conception of life for that is able to situate itself in the current existential context caused by the disease.…”

Uncertainty Towards the Disease of Family Caregivers of Patients in Palliative Care: A Scoping Review

“…midió el nivel de incertidumbre en cuidadores de pacientes con cáncer de próstata y encontró una media de incertidumbre de 60 sobre 140 puntos; sin embargo, dichos valores son menores a los encontrados en otro estudio (16), que halló un nivel medio de incertidumbre de 92 puntos sobre 155 en cuidadores de pacientes en cuidado paliativo. Los estudios sugieren que estos niveles se dan por aspectos como las características específicas del contexto de los cuidados paliativos, la falta de apoyo adecuado a los cuidadores, la discontinuidad de la atención y la falta de habilidades profesionales para identificar las necesidades del cuidador, además de una escasa planeación y evaluación de los objetivos del cuidado del paciente (17)(18).…”