Author:
Mélin M.,Amieva H.,Frasca M.,Ouvrard C.,Berger V.,Hoarau H.,Roumiguière C.,Paternostre B.,Stadelmaier N.,Raoux N.,Bergua V.,Burucoa B.
Abstract
AbstractBackgroundIn 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.MethodsThirty-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.ResultsIn 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.ConclusionsThese 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.
Publisher
Springer Science and Business Media LLC
Reference50 articles.
1. Hanus M. Les deuils dans la vie, deuils et séparations chez l’adulte et chez l’enfant. Paris: Maloine; 2006.
2. Bacqué MF. Le deuil à vivre. Paris: Odile Jacob; 2000.
3. Aoun SM, Ewing G, Grande G, Toye C, Bear N. The impact of supporting family caregivers before bereavement on outcomes after bereavement: adequacy of end-of-life support and achievement of preferred place of death. J Pain Symptom Manag. 2018;55(2):368–78.
4. Gagnier J-P, Roy L. La rencontre patient-famille-soignants dans le contexte de la maladie grave. Cah Crit Ther Fam Prat Reseaux. 2016;57(2):49–71.
5. Wentlandt K, Seccareccia D, Kevork N, Workentin K, Blacker S, Grossman D, et al. Quality of care and satisfaction with care on palliative care units. J Pain Symptom Manag. 2016;51(2):184–92.
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