Division of Psychiatry and Applied Psychology, School of Medicine, University of Nottingham, UK.
Department of Psychiatry, Federal University of São Paulo (UNIFESP), São Paulo, Brazil.
Gerontologist. 2019 Sep 17;59(5):e501-e511. doi: 10.1093/geront/gnz029.
Family carers often experience difficulties managing their own needs, which can lead to ill health. This study aimed to explore the views of carers and other stakeholders about the factors related to health-promoting self-care behavior in family carers of people with dementia.
This multimethod qualitative study involved three consultation events with multiple stakeholders (n = 46) and four focus groups with carers (n = 27). Anonymous notes were collected from the consultation events. Focus group discussions were tape recorded and transcribed verbatim. Inductive thematic analysis was used to analyze the data.
Two overarching themes were identified and labeled "Services" and "Individual factors." Poor service organization and coordination, lack of respite breaks, lack of continuity of care, poor staff attitudes, as well as difficulty to prioritize own needs, health impact, financial impact, and relationships and feelings were related poorer carer health-promoting self-care behavior. Limited health-promoting self-care often led to situations of crisis, which were related to carers' health issues, need for emergency services, and unanticipated care home placement. Carers require high-quality respite to have more time to themselves, support from better coordinated and compassionate services, and more education and awareness about their own needs.
There are several factors that may limit carers' involvement with health-promoting self-care activities, which may affect their own health, on the care provided to their relatives and on service use. Future research and policy need to consider how to better support cares to manage their own health issues.
家庭照顾者在照顾患者的过程中常常难以兼顾自身需求,这可能会导致他们的健康状况恶化。本研究旨在探讨照顾者和其他利益相关者对与痴呆患者家庭照顾者促进健康的自我护理行为相关因素的看法。
这是一项多方法定性研究,包括与多个利益相关者(n=46)进行的三次咨询活动和与照顾者(n=27)进行的四次焦点小组讨论。咨询活动中收集了匿名笔记。对焦点小组讨论进行录音并逐字转录。使用归纳主题分析对数据进行分析。
确定并标记了两个总体主题,分别为“服务”和“个体因素”。服务组织和协调不善、缺乏喘息休息、缺乏连续性护理、工作人员态度不佳,以及难以优先考虑自身需求、健康影响、经济影响以及关系和感受,均与较差的照顾者促进健康的自我护理行为有关。有限的促进健康的自我护理行为通常会导致危机情况,这与照顾者的健康问题、对紧急服务的需求以及意外的养老院安置有关。照顾者需要高质量的喘息时间来照顾自己,需要更好协调和富有同情心的服务支持,以及更多关于自身需求的教育和认识。
有几个因素可能会限制照顾者参与促进健康的自我护理活动,这可能会影响他们自身的健康、对其亲属的护理以及服务的使用。未来的研究和政策需要考虑如何更好地支持照顾者来管理自己的健康问题。