Home Hospice Caregivers’ Perceived Information Needs

Abstract

Background: Although home hospice organizations provide essential care for and support to terminally ill patients, many day-to-day caregiving responsibilities fall to informal (ie, unpaid) caregivers. Studies have shown that caregivers value receiving clear information about end-of-life (EoL) care. Meeting the information needs of this group is critical in improving their experience in hospice. Objectives: To identify the information needs of informal home hospice caregivers. Design: One hundred five semi-structured phone interviews with informal caregivers were conducted. Study data were analyzed using a standard qualitative method (ie, content analysis). Participants: Informal home hospice caregivers whose loved ones have been discharged (death or live discharge) from an urban, nonprofit hospice organization. Measured: Participants’ information needs were ascertained by assessing whether information regarding hospice was or was not fully explained or whether there was information they wished they knew prior to the hospice transition. Results: Among study participants, 48.6% had unmet information needs related to (1) general information about hospice (n = 17, 16.2%), (2) what to expect at the EoL (n = 19, 18.1%), and (3) support provided by hospice (n = 30, 28.6%). Specifically, caregivers expressed the need for more information on what hospice is, caring for a dying patient, and the day-to-day care hospice provides. Conclusion: Our study indicates that approximately half of the informal caregivers had unmet information needs. Further research is needed to identify efficacious strategies to best meet the information needs of this group. Specific topics that need emphasis include what hospice care is, what to expect at the EoL, and what level of support hospice offers.