The Role of Informal Caregiver Knowledge and Health Literacy in Home Hospice Pain Management

Informal caregivers play a crucial role in managing pain for home hospice patients, yet they often feel inadequately prepared for this responsibility. An informal caregiver's lack of health literacy may impact their pain management knowledge and skills, potentially contributing to higher intensity of patient pain. The purpose of this study was to describe the health literacy of informal home hospice caregivers and examine associations between their health literacy, pain knowledge, and patient pain intensity. Our secondary data analysis of the e-PainSupport randomized clinical trial found that 20.6% of hospice caregivers had limited health literacy. Significant associations were found between caregiver health literacy and pain knowledge; however, there was no significant association between caregiver pain knowledge and patient pain intensity. These findings suggest that improving caregiver pain knowledge by providing additional support to those with limited health literacy is important, but it may not be sufficient on its own to reduce patient pain intensity. Further research is needed to explore other factors that may contribute to effective pain management, as unrelieved pain remains prevalent at the end of life.