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

Author(s): Empeño, J., Raming, N.T., Irwin, S.A., Nelesen, R.A. and Lloyd, L.S.

Published In: Journal of Palliative Medicine, 14 (5): 593–597

Study Aim/Purpose: This study sought to measure the impact and level of hospice respite benefits used in the Hospice Caregiver Support Project, designed to provide in-home support services to unpaid, primary, at-home informal caregivers of hospice patients. 

Summary of Methods: During the ten month project period, caregivers referred by project social workers to respite care were asked to complete a questionnaire and data analyses were primarily based on matched pre- and post-survey results completed by 23 caregivers. The survey included the Pearlin Role Overload Measure (ROM) and opportunities for open-ended responses on the benefits of and satisfaction with respite care. Questionnaires were completed immediately after their respite care was approved and again approximately 2 weeks after respite service ended. Caregivers were also asked to provide qualitative information in response to the open-ended question: “Is there anything you would like to share with us?” 

Summary of Key Results: After receiving respite services, mean self-reported caregiver stress levels decreased by 52%. Qualitative responses focused on the benefits of respite care and general appreciation of the services. The most common reported benefit was that respite “allowed the caregiver to get out of the house or take a break.” Other benefits cited by multiple caregivers included: “relieved stress”, “allowed the caregiver to sleep/relieved exhaustion”, and “felt safer/comforted.” Fifteen of the 23 caregivers provided mixed (positive and negative) or negative comments about the quality of the service provided. 

Study Limitations (as cited by authors): None noted. 

Authors’ Discussion/Conclusions: The authors closed by stating that: “These findings show that the provision of additional services through this project reduced the need for hospice patients to be removed temporarily from their home due to caregiver overload, thereby reducing the distress experienced by patients and family members.” They also called for, “more research on the cost-efficiencies of supportive services versus inpatient hospice respite benefit days.”