Coudin Geneviève
Laboratoire de psychologie sociale, Institut de psychologie, Université René Descartes, Paris V.
Psychol Neuropsychiatr Vieil. 2004 Dec;2(4):285-96.
Health and social care services attempt to meet Alzheimer family caregivers' needs. However, these services are underutilized. To understand this reluctance, we propose to broaden the theoretical perspectives on family care. In the literature, family care has been analyzed considering professional care according to the stress-coping paradigm. It has contributed in discovering caregivers' burden, coping strategies and needs, but at the same time it gives a negative view on family care. Current services have been developed based on the above theory built on analogy with professional care, but they neglect the "caring about" aspect of caring. New perspectives stemming from sociology have taken this aspect into account. First, family care has to be contextualized in family history, disease trajectory as well as in cultural values. Second, the main task of "caring about" consists of maintaining the self-image of the demented subject as long as possible. This fight to maintain the identity of the demented by the caregivers is not addressed in the current literature and in the present support services. In a qualitative study, we interviewed 27 main caregivers, having controlled for socio-demographic characteristics as well as the dementia severity. Results show that underutilization of services is mainly due to the type of services offered, and that reluctance can be global or selective. Caregivers also experience conflict between contradictory needs: instrumental and identity maintenance of the demented. The discussion focuses the role of, among others, gender, family history and cultural norms in the caregivers' reluctance.
健康和社会护理服务试图满足阿尔茨海默病患者家庭照顾者的需求。然而,这些服务未得到充分利用。为了理解这种不情愿的态度,我们建议拓宽对家庭护理的理论视角。在文献中,家庭护理是根据压力应对范式,结合专业护理来进行分析的。它有助于发现照顾者的负担、应对策略和需求,但同时也对家庭护理持负面看法。当前的服务是基于上述与专业护理类比建立的理论而发展起来的,但它们忽视了护理中“关爱”的方面。来自社会学的新视角已经考虑到了这一方面。首先,家庭护理必须置于家庭历史、疾病轨迹以及文化价值观的背景中。其次,“关爱”的主要任务包括尽可能长时间地维持痴呆患者的自我形象。照顾者为维持痴呆患者身份的这场斗争在当前的文献和现有的支持服务中并未得到探讨。在一项定性研究中,我们采访了27名主要照顾者,并控制了社会人口学特征以及痴呆的严重程度。结果表明,服务未得到充分利用主要是由于所提供服务的类型,而且不情愿的态度可能是全面的,也可能是有选择性的。照顾者还经历了相互矛盾的需求之间的冲突:痴呆患者的工具性需求和身份维持需求。讨论重点关注了性别、家庭历史和文化规范等因素在照顾者不情愿态度中所起的作用。