Virole Louise, Gabarro Céline, Ricadat Elise
URMIS, Université Paris Cité, Paris, France.
CERIES, Université de Lille, Lille, France.
Sociol Health Illn. 2025 Jan;47(1):e13845. doi: 10.1111/1467-9566.13845. Epub 2024 Sep 21.
Chronic illness requires a web of actors, both professional and familiar, who constitute the support network of the chronically ill. This article aims to analyse how the COVID-19 pandemic has impacted on the delicate balance of these supports. Qualitative research was conducted among people with four types of chronic diseases in France: cystic fibrosis, kidney disease, haemophilia and mental disorders. Data on social support was collected using an innovative methodology combining semi-directive interviews (n = 54) and drawings (n = 32). During the first French lockdown (March-May 2020), the chronically ill were mainly supported by the usual support actors of their primary network: spouse and/or family. However, the COVID-19 health crisis has led to several changes in their support network; health-care professionals diversified their support roles and new supporting actors emerged, especially non-human entities and patient organisations. The chronically ill have received an interweaving of emotional, instrumental and informational, formal and informal and human and non-human support. Our study highlights the multiple and dynamic ties between these types of support and argues in favour of a comprehensive approach to social support of the chronically ill, both in social science theory and in practice of care.
慢性病需要一个由专业人员和熟悉的人组成的关系网,他们构成了慢性病患者的支持网络。本文旨在分析新冠疫情如何影响这些支持因素之间的微妙平衡。对法国患有四种慢性病(囊性纤维化、肾病、血友病和精神障碍)的人群进行了定性研究。使用一种创新方法收集社会支持数据,该方法结合了半指导性访谈(n = 54)和绘图(n = 32)。在法国首次封锁期间(2020年3月至5月),慢性病患者主要由其主要网络中通常的支持人员提供支持:配偶和/或家人。然而,新冠健康危机导致他们的支持网络发生了一些变化;医疗保健专业人员的支持角色多样化,新的支持人员出现,特别是非人类实体和患者组织。慢性病患者得到了情感、工具性和信息性、正式和非正式以及人类和非人类支持的交织。我们的研究强调了这些支持类型之间的多重和动态联系,并主张在社会科学理论和护理实践中采用全面的方法来为慢性病患者提供社会支持。