Jansen Leontien, Eecloo Lieze, Vanwing Anneleen, Schoenmakers Birgitte
Department of Public Health and Primary Care, Academic Centre for General Practice, KU Leuven, Leuven, Belgium.
Health Soc Care Community. 2019 Mar;27(2):375-382. doi: 10.1111/hsc.12655. Epub 2018 Sep 6.
Little is known about the dynamics of a group of people giving informal care together. The aim of this study was to investigate the characteristics of an informal care group, the obstacles the informal care group experiences, the needs and desires they have and how the informal care group can be supported by general practitioners (GPs) and other professionals. Nine informal care groups were interviewed based on a questionnaire that was preapproved by the six Flemish official informal caregiver organisations. The results were analysed using open coding. A survey was conducted among 137 caregivers who were part of a group. Univariate analysis was performed. Informal care group usually consist of close relatives of the patient, with often the partner of the patient as the main caregiver. The size of the informal care group depends on the size of the family. If there are more caregivers in a group, the perceived burden of the individual caregiver decreases. The support of the other caregivers in the group increases capacity. The cooperation and agreements are often spontaneously organised and few problems are reported. There is a large variation in the expectations of support from the general practitioner, ranging from availability in emergencies to information about the possibilities of formal home care. This study depicts a positive image of the informal care group. Being part of a caregiver group both decreases burden and increases capacity. Informal care groups usually function well without a need for formal agreements within the group, and they rarely need a third party to coordinate with them or intervene.
对于一群人共同提供非正式护理的动态情况，人们了解甚少。本研究的目的是调查非正式护理群体的特征、该群体所面临的障碍、他们的需求和愿望，以及全科医生（GP）和其他专业人员如何为非正式护理群体提供支持。基于一份由六个佛兰芒官方非正式护理者组织预先批准的问卷，对九个非正式护理群体进行了访谈。使用开放式编码对结果进行了分析。对作为群体一部分的137名护理者进行了一项调查。进行了单变量分析。非正式护理群体通常由患者的近亲组成，通常以患者的伴侣作为主要护理者。非正式护理群体的规模取决于家庭规模。如果群体中有更多的护理者，单个护理者感受到的负担就会减轻。群体中其他护理者的支持会提高能力。合作和协议通常是自发组织的，报告的问题很少。全科医生提供支持的期望差异很大，从紧急情况下的可及性到有关正式家庭护理可能性的信息。本研究描绘了非正式护理群体的积极形象。成为护理者群体的一员既能减轻负担又能提高能力。非正式护理群体通常运作良好，无需在群体内部达成正式协议，而且他们很少需要第三方与他们协调或干预。
