“A True Human Interaction”

CONTEXT: Home hospice providers are concerned with family caregiver perceptions about the quality of care and support offered. More research is needed to understand experiences of family caregivers and what "support" means to these family members. OBJECTIVE: We compared perceptions of caregiver needs from the family caregiver and the nurse case manager. METHODS: Former family caregivers and hospice nurses participated in focus groups. Discussions were audio-recorded, transcribed, inductively coded and qualitatively analyzed to describe patterns and themes. RESULTS: Both groups described information, honesty, trust, respect, and control as important to caregivers feeling supported, and to the development of positive relationships between hospice and family. Caregivers and nurses, however, talked about the concepts of caregiver needs, relationship building, and effective support differently, which suggested two themes that captured these contrasts while highlighting the importance of relationship-building to both groups: "Breaking it down to build it up" and "Doing to, doing for, doing with". CONCLUSION: Caregivers and nurses cited similar elements necessary for successful relationships between caregivers and the hospice team, but how they described them differed and these differences shape perceptions of support. Greater understanding of similarities and differences could inform and improve training and education programs for hospice teams.