• Jinsook Kim and Jennifer A Gray.
• School of Health Studies, Northern Illinois University , DeKalb, Illinois.
• J Palliat Med. 2018 Aug 1; 21 (8): 1094-1099.

BackgroundAs 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.ObjectiveThe purpose of this study was to explore DCWs' experience with palliative care and challenges they faced.DesignThis study was an exploratory, descriptive study using qualitative methods.Setting/SubjectsFifty-four DCWs participated in nine focus groups at five nonprofit community-based organizations that provided residential and day programming services for PWIDD.MethodsParticipants 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.ResultsChallenges 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.ConclusionsThe 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.

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