Background In the absence of extant recommendations, the aim of this study was to formalise support practices used by an interdisciplinary team in a palliative-care unit (PCU) for the relatives of patients in the agonal phase preceding death. The secondary objective was to understand the expectations of relatives during this phase in terms of the support provided by professionals and volunteers. Methods Thirty-two people took part in this study; all were interviewed through focus groups (FGs). Each FG comprised one category of individuals working in the PCU: nurses, care- assistants, doctors, psychologists, other professionals, palliative-care volunteers, and relatives. Groups were surveyed using an interview guide, and the interviews were recorded and transcribed to enable identification and characterization of all practices. Care practices were classified into four categories: current consensual practices (i.e. performed by all team members), occasional consensual practices, non-consensual practices (performed by one or a few participants), and practices to be developed. Results In total, 215 practices were mentioned by professionals and palliative-care volunteers: 150 current consensual practices, 48 occasional consensual practices, 1 non-consensual practice, 16 practices yet to be developed, and 29 practices for relatives. Many practices were mentioned by different categories of participants; thus, after cross-checking, the number of practices decreased from 215 to 52. A list of practices deemed desirable by all was drawn up and then validated by the entire interprofessional team. These practices were organised around four themes: providing care and ensuring comfort; communicating, informing, and explaining; interacting; and mobilising interdisciplinary skills. Conclusions These results underline the importance of the quality of care provided to patients, the attention given to the relatives themselves, and they highlight the importance of the helping relationship. Following this study, which established a list of varied practices aimed at supporting the relatives of patients in agonal phase, it will be important to set up a broader study seeking to establish a consensus on these practices with an interprofessional group of experts from other PCUs using broad surveys and an adapted methodology. Such studies will make it possible to develop training modules for teams working with relatives.
L’EMDR (désensibilisation et retraitement par les mouvements oculaires) est une approche psychothérapeutique recommandée et validée par les grandes institutions de santé dans le monde, pour traiter les troubles de stress post-traumatique (TSPT). Auprès de patients gravement malades, l’approche EMDR permet de soulager les symptômes tels que l’anxiété en lien avec les traitements et les soins. Nous présenterons à travers des cas cliniques un retour d’expérience d’utilisation de cette approche auprès de patients en situation palliative.
Summary Twenty‐two cases of clinically determined congenital hypothyreosis were examined along with a follow‐up study by means of electroencephalography. All the patients except one were adequately treated and normally developed somatically, but their mental development showed a wide range of variation. In general, the psychically normally developed patient had an EEG with normal frequencies, while those who were most poorly developed mentally seemed to show general cerebral damage reflected in the form of a pathological EEG. The time at which this injury arose will be the object of further study. Résumé Vingt‐deux cas d'hypothyréose congénitale diagnostiqués cliniquement furent examinés par une étude suivie au moyen d'électroencephalographie. Tous les patients sauf un furent traité de façon adéquate, et se sont développés physiquement de façon normale, alors que leur développement mental se montrait très différent. En général le patient développé psychiquement de façon normale avait un EEG à fréquences normales, tandis que ceux qui étaient moins bien développés mentalement semblaient présenter des atteintes cérébrales générales se manifestant sous la forme d'un EEG pathologique. L'époque à laquelle ces lésions apparaissent sera l'objet d'études ultérieures. Zusamrnenfassung 22 Fälle von angeborener Hypothyreosis wurden klinisch verfolgt und elektroencephalographisch untersucht. Alle diese Patienten ausser einem waren adäquat therapeutisch behandelt und waren physisch normal entwickelt, ihre geistige Entwicklung zeigte dagegen grosse Differenzen. Im allgemeinen hatten die psychisch normal Entwickelten ein normal Aussehen des Elektroencephalogramms mit normaler Frequenz. Dagegen zeigten die geistig Zurückgebliebenen allgemeine cerebrale Schädigungen in Form eines pathologischen EEG. Der Zeitraum in dem diese cerebralen Schädigungen beginnen soll ein Objekt weiterer Studien sein. Sumario 22 casos de hipotiroidismo congénito diagnosticados clinicamente, fueron examinados y seguidos con estudios electroencefalograficos. Todos los pacientes con ecepción de uno recibieron el tratamiento adecuado, y alcanzaron un desarrollo somatico normal, pero en su desarrollo psiquico demostraron un margen de variaciones muy amplias. Como regla general al paciente con desarrollo psiquico normal presento un electroencefalograma con frecuencias normales, mientras que los que tenian un desarrollo mental mas insuficiente, parecian mostrar lesiones cerebrales generales, reflejadas en forma de un electroencefalograma patologico. El momento de aparición de estas lesiones, sera objeto de nuevos estudios.
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