The hospice caregiver support project: providing support to reduce caregiver stress

The vast majority (80%) of care provided to hospice patients is given by informal and unpaid caregivers, who are often family members. They may be responsible for everything from management of the household and finances to medical and personal care. Providing this kind of care to a loved one at the end of life can contribute to increased stress, health problems, and decreased quality of life.

Hospice social workers referred caregivers identified as needing additional support into a special project that funded services not covered by hospice and that the family could not afford to purchase. There were no restrictions on the types of services that could be requested. The Pearlin role overload measure (ROM) was administered and the family selected a service provider from an approved list of agencies. Upon completion of the service period, the ROM was re-administered. Use of the hospice respite benefit by any hospice patient during this study was compared with use before the project began.

Self-reported caregiver stress, as measured by the Pearlin ROM pre- and post-services, decreased by 52% (t(122) = 10.254; p < 0.0001). Use of the hospice respite benefit requested by any hospice patient caregiver decreased during the project period (χ(2), p < 0.02), and when respite was requested fewer days were used as compared with the same time period prior to the project (χ(2), p < 0.0043).

The project results show that offering such services relieved caregiver stress, reduced use of respite, and reduced the number of respite days used.