Palliative care needs of direct care workers caring for people with intellectual and developmental disabilities

Abstract

Accessible summary Palliative care is a holistic model of care that lessens suffering and improves quality of life for individuals who are very sick. As people with intellectual and developmental disabilities (PWIDD) get very sick, direct care workers (DCWs) are more likely to provide palliative care. Researchers need to know more about what palliative care training DCWs need. One hundred and forty‐nine (149) DCWs filled out surveys about their palliative care training needs. The research showed that DCWs need more training in certain areas, such as cultural competence, effective communication, post‐death logistics and legal matters. AbstractBackgroundDirect care workers (DCWs) caring for people with intellectual and developmental disabilities (PWIDD) provide palliative care, but research indicates DCWs are ill‐equipped to do so. This study aimed to assess DCWs’ palliative care experience and training and their perceived training needs.Materials and MethodsStaff trained as DCWs (n = 149) in organisations that serve PWIDD were surveyed in suburban and rural areas of a U.S. Midwestern state. Descriptive statistics were run, including t tests, analysis of variance, Scheffe's tests for pairwise comparison, Pearson's correlation, Fisher's exact tests and chi‐square tests.ResultsParticipants reported limited experience in legal matters, yet had substantial experience in assisting PWIDD with pain, distress and bereavement. Training was inadequate but desired for cultural competence, effective communication, post‐death logistics and legal matters. Rural DCWs reported less palliative care experience and training than suburban counterparts.ConclusionsThe results demonstrate the need for specific types of palliative care training among DCWs caring for PWIDD and that such training should be prioritised in rural agencies. Future research can explore ways to maximise training effectiveness.