Palliative Care Experiences and Needs of Direct Care Workers

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.

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.