Nieuwenhuijse A M, Willems D L, van Goudoever J B, Olsman E
Section of Medical Ethics, Department of General Practice, Amsterdam UMC, Academic Medical Centre, University of Amsterdam, Amsterdam, The Netherlands.
Omega, Day Care Centre for Persons with PIMD, Amsterdam, The Netherlands.
Int J Dev Disabil. 2020 Mar 14;68(2):190-197. doi: 10.1080/20473869.2020.1737469. eCollection 2022.
Persons with Profound Intellectual and Multiple Disabilities (PIMD) are supported by professional caregivers for a large part of their lives. However, the perspectives of professional caregivers on good or poor Quality of Live (QoL) of persons with PIMD have hardly been explored. To explore the perspective of professional caregivers on QoL of persons with PIMD, we performed a qualitative study, conducting semi-structured interviews with eleven professional caregivers and thematically analysed them. In the interviews, these professional caregivers described examples of good and poor QoL. Good QoL was mostly described in emotional terms such as happiness, pleasure and enjoying things. Poor QoL was mostly described in physical terms such as pain, sickness and shortage of breath. The capability of persons with PIMD to influence the environment was described as an element of good QoL. Furthermore, these professional caregivers described how they assessed QoL. They 'sensed' QoL, they tested it (trial and error) and discussed QoL of persons with PIMD with colleagues. Participants emphasized the dependency of persons with PIMD on professional caregivers. Furthermore, these professional caregivers described feelings of failure and powerlessness if they could not assess or fulfil the needs of persons with PIMD. We conclude that these professional caregivers use their (tacit) knowledge to understand QoL of persons with PIMD. The relationship between QoL of persons with PIMD and professional caregivers needs more investigation, because of its consequences both for the persons with PIMD and the professional caregivers.
重度智力和多重残疾者（PIMD）一生中大部分时间都由专业护理人员照料。然而，专业护理人员对PIMD患者生活质量好坏的看法却鲜有探讨。为了探究专业护理人员对PIMD患者生活质量的看法，我们开展了一项定性研究，对11名专业护理人员进行了半结构化访谈，并进行了主题分析。在访谈中，这些专业护理人员描述了生活质量好与差的例子。生活质量好大多用情感方面的词汇来描述，如幸福、愉悦和享受事物。生活质量差大多用身体方面的词汇来描述，如疼痛、疾病和呼吸急促。PIMD患者影响环境的能力被描述为生活质量好的一个要素。此外，这些专业护理人员还描述了他们如何评估生活质量。他们“感知”生活质量，通过试错来测试，并与同事讨论PIMD患者的生活质量。参与者强调了PIMD患者对专业护理人员的依赖。此外，这些专业护理人员还描述了如果他们无法评估或满足PIMD患者的需求时的失败感和无力感。我们得出结论，这些专业护理人员利用他们的（隐性）知识来理解PIMD患者的生活质量。由于PIMD患者和专业护理人员都会受到影响，PIMD患者的生活质量与专业护理人员之间的关系需要更多的研究。
