Avazeri Axelle, Bonin Juliette, Maneval Axelle, Vorilhon Philippe
Department of General Practice, Université Clermont Auvergne, UFR Medicine, Clermont-Ferrand, France.
Université Clermont Auvergne, UR ACCePPT, Clermont-Ferrand, France.
Health Expect. 2025 Apr;28(2):e70221. doi: 10.1111/hex.70221.
Health restrictions resulting from COVID-19 made it more difficult for families to mourn. The death announcement is a significant moment for families. The aim of this study was to explore the experiences, perceptions and expectations of families who were informed of the death of a close relative in the hospital, at home or in a care home for dependent elderly people (EHPAD) during the COVID-19 pandemic.
This qualitative study was based on interpretative phenomenology and involved individual semidirected interviews with families of patients who died in 2020 in the Auvergne region, in hospitals, at home and in establishments for dependent elderly people, with double analysis.
Three themes emerged from the 17 interviews. Families' experiences of the announcement of the death of a loved one were complex due to the pandemic as well as the corresponding health restrictions and new forms of communication, thus leading to fear, helplessness, frustration, sadness, anger, guilt and loneliness. High-quality communication with caregivers, both at the announcement of death and beforehand, was essential. The families highlighted various areas for improvement: family visits with the patient, effective telecommunication, close emotional support after the announcement, reflection by caregivers on their own defence mechanisms in response to death, and a care system that revalues 'taking care'.
Families' experiences with receiving news regarding the death of a close relative during the pandemic depended on the quality of their communication with caregivers, which could mitigate the traumatic impacts of health measures and relational deprivation. Adjustments are necessary in the event of similar pandemic situations.
The conception of our study was based on discussions with families in hospitals or general practice who reported their difficulties and suffering at the time of the death of a close relative during the COVID-19 pandemic. We reasoned that understanding the experiences of people who had experienced the death of a loved one in this health context would enable us to determine whether relationships with caregivers met their expectations or whether they needed to be adapted. To place the experience of families at the centre of this research, a participatory research method with a qualitative approach was used. The families of patients who died in 2020 in the Auvergne region during the COVID-19 pandemic were included in the study. A list of families has been established from the healthcare software of a hospital, a home for dependent elderly people and two multiprofessional primary care practices. Twenty-six relatives of patients were contacted, and 17 interviews were conducted. Seven people refused to participate, one person did not participate in the follow-up, and one person could not be contacted. Based on discussions with relatives of deceased patients and a literature search, we established an interview guide. The families approached volunteered to share their experiences and subsequently validated the study data.
新冠疫情带来的健康限制使家庭更难悼念亲人。死亡宣告对家庭来说是一个重要时刻。本研究的目的是探讨在新冠疫情期间，那些在医院、家中或养老院得知近亲死亡的家庭的经历、看法和期望。
本定性研究基于解释现象学，对2020年在奥弗涅地区医院、家中及养老院去世患者的家属进行了半结构化的个人访谈，并进行了双重分析。
17次访谈中出现了三个主题。由于疫情、相应的健康限制和新的沟通形式，家庭在得知亲人死亡时的经历很复杂，从而导致恐惧、无助、沮丧、悲伤、愤怒、内疚和孤独。在死亡宣告时及之前与护理人员进行高质量沟通至关重要。家庭强调了多个需要改进的方面：与患者的家庭探访、有效的远程通信、宣告死亡后的密切情感支持、护理人员对自身应对死亡防御机制的反思，以及重视“照顾”的护理系统。
疫情期间家庭在得知近亲死亡消息时的经历取决于他们与护理人员沟通的质量，这可以减轻健康措施和关系剥夺带来的创伤性影响。在类似疫情情况下有必要进行调整。
我们的研究构思基于与医院或全科医疗中的家庭进行的讨论，他们讲述了在新冠疫情期间近亲死亡时的困难和痛苦。我们推断，了解在这种健康背景下经历过亲人死亡的人们的经历，将使我们能够确定与护理人员的关系是否符合他们的期望，或者是否需要进行调整。为了将家庭的经历置于本研究的中心，采用了定性的参与式研究方法。纳入了2020年在奥弗涅地区新冠疫情期间去世患者的家属。从一家医院、一家养老院和两家多专业初级医疗诊所的医疗软件中建立了一份家庭名单。联系了26名患者亲属，进行了17次访谈。7人拒绝参与，1人未参与后续跟进，1人无法联系到。基于与已故患者亲属的讨论和文献检索，我们制定了一份访谈指南。参与的家庭自愿分享他们的经历，随后对研究数据进行了验证。
