背景:智障人士的健康状况比一般人群差。在荷兰,支持工作者在满足智障人士的健康支持需求方面发挥着关键作用。研究智障人士及其支持工作者如何体验支持工作者在预防,识别,跟进智障人士的健康需求很少。为了加强对智障人士的健康支持,我们必须了解如何在日常实践中提供健康支持。因此,这项研究调查了智障人士和支持工作者在智障人士的健康支持方面的经验。
方法:数据收集包括六个焦点小组(FG)讨论,有4至6名参与者(N=27)。FG由三组支持人员组成(n=15),两组参与者患有轻度至中度智力障碍(n=8),以及一组以家庭成员为代表的代理线人,代表其亲戚患有严重至严重的智力残疾(n=4)。按主题分析了与卫生支持有关的数据。
结果:我们确定了与智障人士的健康支持相关的三个主要主题:1)对健康支持的依赖,2)卫生支持方面的沟通实践,3)卫生支持的组织背景。对健康支持的依赖意味着支持工作者满足智障人士无法满足自己的需求的方式,和通信实践和组织背景被确定为进行健康支持的系统。
结论:本研究从智障人士和支持工作者的角度调查了智障人士的健康支持经验。我们讨论了智力障碍者的依赖性以及日常实践中健康支持的复杂性。我们提供了实际意义,可以加强支持工作者在日常实践中为智障人士提供健康支持。这项研究的结果强调,智障护理提供者组织需要围绕支持人员的一致性制定政策,以便更容易识别和跟踪健康需求,以及支持人员可以发展其有关沟通实践的专业知识的环境,生活方式的选择,并确定和跟踪健康需求。
BACKGROUND: People with intellectual disability have a poorer health status than the general population. In The Netherlands, support workers play a key role in meeting health support needs of people with intellectual disability. Research on how people with intellectual disability and their support workers experience the support worker\'s role in preventing, identifying, and following up health needs of people with intellectual disability is scarce. To enhance health support of people with intellectual disability it is crucial that we understand how health support is delivered in everyday practice. Therefore, this study investigated experiences of people with intellectual disability and support workers with the health support of people with intellectual disability.
METHODS: Data collection consisted of six focus group (FG) discussions with between four and six participants (N = 27). The FGs consisted of three groups with support workers (n = 15), two groups with participants with mild to moderate intellectual disability (n = 8), and one group with family members as proxy informants who represented their relative with severe to profound intellectual disability (n = 4). The data was analysed thematically on aspects relating to health support.
RESULTS: We identified three main themes relevant to the health support of people with intellectual disability: 1) dependence on health support, 2) communication practices in health support, and 3) organizational context of health support. Dependence on health support adresses the way in which support workers meet a need that people with intellectual disability cannot meet themselves, and communication practices and organizational context are identified as systems in which health support takes place.
CONCLUSIONS: This study investigated experiences with the health support of people with intellectual disability from the perspectives of people with intellectual disability and support workers. We discuss the dependence of people with intellectual disability and the complexity of health support in everyday practice. We provide practical implications that can strengthen support workers in the provision of health support for people with intellectual disability in everyday practice. The findings of this study emphasize the need for intellectual disability care-provider organizations to establish policies around consistency in support staff to make it easier to identify and follow up health needs, and an environment where support staff can develop their expertise concerning communication practices, lifestyle choices, and identifying and following up health needs.