title: Caregiver evaluation of the ACTIVE intervention: "it was like we were sitting at the table with everyone".
abstract: Central to the hospice philosophy is the belief that the patient/family owns the plan of care. However, barriers prevent the majority of hospice patients/families from participating in the meetings where plans are created and revised. This study evaluates the participant experience of the ACTIVE (assessing caregivers for team intervention via video encounters) intervention, designed to use web conferencing technology to overcome the barriers of participation in development and review of individual care plans. Interviews were done with hospice caregivers following the death of their loved one. Caregivers involved in the intervention reported positive relationships with the hospice staff, felt involved in decision making, and got answers to their questions. Furthermore they reported staff was responsive to their needs and that participation increased their confidence, trust in the team, and provided a feeling of not being alone if they needed help. Challenges included issues with the technology, a feeling of being rushed and a frustration when they did not feel included or involved. Suggestions for improving the intervention included a more frequent meeting time, a need for to train hospice staff how to conduct web-based interactions, and suggestions for additional information for caregivers.
authors.affiliation: 1Department of Family and Community Medicine, University of Missouri, Columbia, MO, USA.
authors.forename: Debra Parker
authors.initials: DP
authors.lastname: Oliver
authors.forename: David L
authors.initials: DL
authors.lastname: Albright
authors.forename: Robin L
authors.initials: RL
authors.lastname: Kruse
authors.forename: Elaine
authors.initials: E
authors.lastname: Wittenberg-Lyles
authors.forename: Karla
authors.initials: K
authors.lastname: Washington
authors.forename: George
authors.initials: G
authors.lastname: Demiris
mesh_terms: D000328:Adult; D000368:Aged; D017028:Caregivers / Q000523:psychology; D005260:Female; D017051:Hospice Care / Q000379:methods* / Q000592:standards; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D010348:Patient Care Team; D057285:Precision Medicine / Q000379:methods / Q000592:standards; D055815:Young Adult
keywords: ACTIVE; caregivers; evaluation; hospice; interdisciplinary; team