Improving Breast Cancer Family Caregivers' Palliative Care Literacy: A Pilot Randomized Trial.

Self- and family management (SFM) refers to patients' and family caregivers' activities to co-manage illness. Two barriers to SFM are low palliative care literacy and lack of goals of care communication, which potentially result in SFM activities that are unsupportive of patients' goals. Managing Cancer Care: A Caregiver's Guide (MCC-CG) aims to improve palliative care literacy and communication within a SFM training program. In this pilot randomized trial, we enrolled breast cancer family caregivers and collected data at 0, 1, and 3 months on palliative care literacy, SFM engagement, communication, transitions management, uncertainty, caregiver burden, and caregiver competence/personal gain. Participants (n = 35) had a mean age of 54 (range: 18-81) and were 66% white and 34% racial/ethnic minorities. Intervention participants improved their palliative care literacy and SFM engagement, reduced uncertainty and caregiver burden, increased competence/personal gain, and had more goals of care conversations over time. MCC-CG has preliminary efficacy, warranting further study.

Distress and self-care among chaplains working in palliative care.

BACKGROUND: The prevalence of burnout and distress among palliative care professionals has received much attention since research suggests it negatively impacts the quality of care. Although limited, research suggests low levels of burnout or distress among healthcare chaplains; however, there has been no research among chaplains working in specific clinical contexts, including palliative care. OBJECTIVE: This study explored the distress, self-care, and debriefing practices of chaplains working in palliative care. METHOD: Exploratory, cross-sectional survey of professional chaplains. Electronic surveys were sent to members of four professional chaplaincy organizations between February and April 2015. Primary measures of interest included Professional Distress, Distress from Theodicy, Informal Self-care, Formal Self-care, and debriefing practices. RESULT: More than 60% of chaplains working in palliative care reported feeling worn out in the past 3 months because of their work as a helper; at least 33% practice Informal Self-care weekly. Bivariate analysis suggested significant associations between Informal Self-care and both Professional Distress and Distress from Theodicy. Multivariate analysis also identified that distress decreased as Informal and Formal Self-care increased. SIGNIFICANCE OF RESULTS: Chaplains working in palliative care appear moderately distressed, possibly more so than chaplains working in other clinical areas. These chaplains also use debriefing, with non-chaplain palliative colleagues, to process clinical experiences. Further research is needed about the role of religious or spiritual beliefs and practices in protecting against stress associated with care for people at the end of life.

Chaplains Working in Palliative Care: Who They Are and What They Do.

BACKGROUND: Palliative care (PC) programs utilize chaplains to address patients' spiritual care needs; however, there is no comprehensive description of chaplaincy in PC programs nationally. OBJECTIVE: To describe chaplains working in PC across the United States, including their integration on the PC team and visit content. DESIGN: National online survey conducted February-April 2015. SUBJECTS: We invited participation from hospital-based chaplains belonging to four national professional chaplain associations who spent 15% or more of their working hours with PC teams. Measure(s): We developed a 41-item survey to investigate main outcomes of chaplain demographics, practice information, integration into the PC team, and visit content. RESULTS: 531 valid responses were received. We report on respondents who were full-time chaplains (n = 382). Almost half were women (46%), and the majority was Protestant (70%). The average number of PC patients seen per day was 5.2 (SD = 3.5, range 1-30). Half (52%) reported frequently participating in PC rounds. Primary chaplain activities were relationship building (76%), care at the time of death (69%), and helping patients with existential issues or spiritual distress (49%). Over half (55%) reported addressing goals of care 60% of the time or more. DISCUSSION: This survey provides the first description of chaplains working in PC across the United States. We describe chaplains' critical role in attending to relationship building, care for the dying, and goals of care conversations. Our results highlight how the chaplains' level of involvement in PC affects the content of their visits. Our study suggests that when chaplains are more involved in PC teams, they provide more comprehensive support to PC patients and their families.