School of Health Studies, Northern Illinois University , DeKalb, Illinois.
J Palliat Med. 2018 Aug;21(8):1094-1099. doi: 10.1089/jpm.2017.0555. Epub 2018 Apr 19.
As people with intellectual and developmental disabilities (PWIDD) are living longer and experience chronic health conditions, there is greater likelihood that direct care workers (DCWs) will need to provide palliative care services.
The purpose of this study was to explore DCWs' experience with palliative care and challenges they faced.
This study was an exploratory, descriptive study using qualitative methods.
SETTING/SUBJECTS: Fifty-four DCWs participated in nine focus groups at five nonprofit community-based organizations that provided residential and day programming services for PWIDD.
Participants completed a short demographic questionnaire before each of the focus group sessions. In the focus group sessions, participants were asked to describe their experiences of providing palliative care in the workplace and whether they had any difficulties providing palliative care. The focus group discussions were digitally recorded, transcribed professionally, and de-identified for analysis.
Challenges DCWs faced and strategies they employed to meet PWIDD's needs were described using two main themes: "challenges" and "meeting PWIDD's needs." The first theme encompassed difficulties in communicating with clients, anxiety of anticipating death, and limited organizational resources or support. Empathy, extra attention, adaptation in care, and peer support comprised the second theme.
The results indicate some intellectual and developmental disability service agencies and DCWs are not equipped to care for PWIDD with palliative care needs, and DCWs try to meet PWIDD palliative care needs through individual efforts and peer support. These findings can inform training development for DCWs, as well as necessary organizational efforts to support DCWs.
随着智障和发育障碍人士（PWIDD）寿命的延长和慢性健康状况的出现，直接护理人员（DCWs）更有可能需要提供姑息治疗服务。
本研究旨在探讨 DCWs 提供姑息治疗的经验以及他们面临的挑战。
这是一项采用定性方法的探索性描述性研究。
设置/研究对象：54 名 DCWs 参加了五个非营利性社区组织的九次焦点小组，这些组织为 PWIDD 提供住宿和日间服务。
参与者在每次焦点小组会议前完成一份简短的人口统计问卷。在焦点小组会议中，参与者被要求描述他们在工作场所提供姑息治疗的经验，以及他们在提供姑息治疗方面是否有任何困难。焦点小组讨论被数字记录下来，专业转录，并进行去识别化以进行分析。
使用两个主要主题描述了 DCWs 面临的挑战和他们为满足 PWIDD 的需求而采用的策略：“挑战”和“满足 PWIDD 的需求”。第一个主题包括与客户沟通困难、对死亡的焦虑以及有限的组织资源或支持。同理心、额外的关注、护理的适应性以及同伴支持构成了第二个主题。
结果表明，一些智障和发育障碍服务机构和 DCWs 没有能力为有姑息治疗需求的 PWIDD 提供护理，而 DCWs 通过个人努力和同伴支持来满足 PWIDD 的姑息治疗需求。这些发现可以为 DCWs 的培训发展以及支持 DCWs 的必要组织努力提供信息。
