Most community-dwelling adults did not mention the major components of palliative and hospice care in their definitions, implying a low level of awareness of these services, and misinformation is common among community-dwelling adults. Palliative and hospice care education initiatives are needed to both increase awareness of and reduce misperceptions about these services.

Background-Although home hospice organizations provide essential care for and support to terminally ill patients, many day-today 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-today 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

Context. Rates of psychological symptoms for patients with serious illness are high, but there has been limited research investigating psychological symptoms at the very end of life (EOL). Objectives. To better understand the prevalence, severity, and correlates of psychological distress at the very EOL. Methods. This retrospective cross-sectional study utilized caregiver proxy interviews. Caregivers were contacted after their care recipient recently died while receiving home hospice care and invited to participate in a brief interview with a trained research assistant. Patient, caregiver, and hospice utilization data were also abstracted from electronic medical records, and caregiver burden scores were assessed via interview. Results. A total of 351 caregivers were included in the study. According to caregivers, 46.4% of patients had moderate-to-severe anxiety, as assessed with a score of ≥4 on the Edmonton Symptom Assessment Scale and 43% had moderate-to-severe symptoms (Edmonton Symptom Assessment Scale score ≥ 4) of depression in the last week of life. Symptoms of anxiety and depression were significantly associated with caregiver burden scores and inversely associated with patient age. Conclusion. Psychological symptom management at the very EOL is essential to providing comprehensive hospice care. Our study revealed that nearly half of all home hospice patients experience moderate-to-severe symptoms of anxiety and/or depression in the last week of life. Future research is needed to improve psychological symptom management at the very EOL to improve the quality of life for both patients and their families.

A substantial majority of informal caregivers voiced receptivity to using mHealth apps and expressed interest in features that enhance communication and provide information to improve patient care. Although more research is needed to examine how to incorporate this technology into existing home hospice care, our study suggests that informal caregivers are likely to use this technology they feel will help enhance home-based EoL care delivery.

Background: Many older adults receive help from both family caregivers and home care workers. We aimed to understand family caregivers’ perspectives on home care workers. Methods: This qualitative study took place at an academic medical center in New York, N.Y. We interviewed family caregivers of community-dwelling older adults about their experiences with home care workers. We analyzed transcripts thematically. Results: We interviewed 17 family caregivers and identified four major themes: (a) home care workers provide functional and emotional support; (b) home care is logistically challenging; (c) finding the right fit between home care workers, older adults, and families is essential; and (d) home care workers and family caregivers coordinate care well beyond the initiation of home care. Conclusion: Despite its logistical challenges, home care benefits patients and family caregivers. Given the growing prevalence of caregiving, clinicians and family caregivers might benefit from training and support about working with home care workers.