This study examined the perceptions of preparedness and support of informal caregivers of hospice oncology patients. Respondents included co-residing, proximate, and long distance caregivers. Thematic analysis was used to analyze the qualitative data from two caregiver surveys, one administered prior to the care recipient’s death and another completed three months post-death. Respondents (N=69) interpreted “preparedness” broadly and identified multiple sources of support including hospice personnel, family, friends, neighbors, and spiritual beliefs. Additionally, informational support, such as education, information, and enhanced communication were considered essential for preparing and supporting caregivers. Implications for social work research and practice are provided.

There are an estimated 5–7 million long distance caregivers in the United States, but relatively little is known about this growing subpopulation of caregivers. This study systematically reviewed the existing empirical literature on long distance caregiving and critically examined 15 identified studies: 8 quantitative, 2 mixed-method, and 5 qualitative. Although studies defined long distance caregiving very differently, a composite description of who long distance caregivers are and what they do is presented. Long distance caregivers make substantial contributions to care in terms of physical, financial, and social support. Distance complicates the exchange of information about the care recipient’s health and care needs, as well as the types of care that can be provided. Related to this, geographic separation can exacerbate care-related stressors. Implications for future research are also identified.

To better understand the process and outcomes of family involvement for long-term care residents with varying stages of dementia, we analyzed family and staff data for 467 residents of 24 residential care/assisted living and nursing home settings. Adjusted analyses found that although the amount of family visitation did not significantly vary by resident cognitive status (15 versus 20 visits/month to persons with and without dementia, respectively), the nature of the visit did. Families of cognitively intact residents spent more time in activities related to social and community engagement, such as taking residents on trips and calling and writing letters (p<0.001), while families of more impaired residents spent more time on care-related activities, including tasks related to nutrition (p<0.027), mobility (p=0.001), and discussing care with staff (p=0.007), the latter of which was associated with greater burden (p<0.001). Staff identified similar patterns, but perceived less family involvement.

Context Nursing homes are an important site for end-of-life care, yet little is known about the perspectives of the frontline staff who provide a majority of this care. Objective To describe, from the staff perspective, positive/negative experiences related to caring for dying residents. Methods Qualitative analysis using survey data from staff working in 52 Indiana nursing homes. Results A total of 707 frontline staff who provide nursing, nurse aide, and social work services responded to open-ended prompts. Study data included responses to open-ended prompts asking participants to describe one positive experience and one negative experience caring for a dying patient. A thematic content analysis was conducted using the constant-comparative method. Respondents were largely female (93%), white (78%), 31–50 years (42%), and 53% had >5 years of nursing home work experience. Experiences were described from three perspectives: 1) first-hand experiences, 2) observed experiences of dying patients, and 3) observed experiences of family members. Selected themes for positive experiences include the following: creating close bonds; good patient care; involvement of hospice; being prepared; and good communication. Selected themes for negative experiences consisted of the following: challenging aspects of care; unacknowledged death; feeling helpless; uncertainty; absent family; painful emotions; and family discord. Conclusion Findings reveal the richness and many complexities of providing end-of-life care in nursing homes and have implications for improving staff knowledge, coordination of care with hospice, and social support for patients.

Context Concerns about pain medications are major barriers to pain management in hospice, but few studies have focused on systematic methods to address these concerns. Objective We conducted a pilot cluster randomized controlled trial with four hospices to test preliminary efficacy of the EMPOWER intervention which included: hospice staff education; staff screening of barriers to pain management at admission; and discussion about misunderstandings regarding pain management with family caregivers and patients. Methods 126 family caregivers (55 intervention; 71 control) were interviewed at two weeks post-admission. If patients survived three months post-admission, caregivers were re-interviewed. Results At two weeks, caregivers in the intervention group reported better knowledge about pain management (p=.001), fewer concerns about pain and pain medications (p=.008), and lower patient pain over the past week (p=.014); and trended toward improvement in most other areas under study. Exploratory analyses suggest EMPOWER had a greater effect for Black subjects (vs. Whites) on reducing concern about stigma. At three months, the intervention group trended better on most study outcomes. Conclusion EMPOWER is a promising model to reduce barriers to pain management in hospice.

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Objectives: This study investigated treatment fidelity in social work research. Method: The authors systematically reviewed all articles published in five prominent social work journals over a 5-year period. Sixty-three outcome studies were identified and reviewed for how well treatment fidelity was monitored using eight review criteria. Results: Seventy-one percent of reviewed studies defined each independent variable but more than two thirds lacked information on control measures for the interventions.Only two studies addressed all eight of the fidelity criteria, while five articles provided sufficient information on seven of the criteria. Nearly half (49%) were identified as primarily effectiveness studies. Slightly fewer (43%) were identified as efficacy studies. Conclusions: Greater attention needs to be paid to fidelity in social work intervention research.

Despite relatively high hospice awareness and favorability, myths and misperceptions about hospice still abound--and may drive ethnic disparities in end-of-life care. Educational interventions and future study are needed.