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Background: Collective caregiving, performed by caregivers working in pairs (informal primary and secondary caregivers working together), is common in the hospice setting. Research suggests that caregiving pairs may experience different caregiver outcomes. However, little is known about how caregiving pairs differ from solo caregivers (informal primary caregivers) on outcome measures. Objective: The goal of this study was to determine whether being in a caregiver pair affected caregiver anxiety and depression and how outcomes changed over time. Design: A mixed model analysis was used. Setting/subjects: Hospice caregivers (260 solo caregivers and 44 caregivers in 22 pairs) who participated in a larger, randomized controlled trial completed caregiver measures upon hospice admission and periodically until the death of the patient or hospice decertification. Measurements: Measured were caregiver quality of life, social support, anxiety, and depression. Results: Caregiver pairs had higher anxiety and depression scores than solo caregivers. Emotional, financial, and physical quality of life were associated with decreased depression, whereas only emotional and financial quality of life were correlated with lower levels of anxiety. Social support was associated with lower levels of depression and anxiety. Conclusions: Despite assumptions that social support is positively facilitated vis-a-vis collective caregiving, caregiving pairs may be at higher risk for anxiety and depression. Future research is needed to address why individuals become anxious and/or depressed when working as part of a caregiving pair. [ABSTRACT FROM AUTHOR]

Objective Even though more than 25% of Americans die in nursing homes, end-of-life care has consistently been found to be less than adequate in this setting. Even for those residents on hospice, end-of-life care has been found to be problematic. This study had 2 research questions; (1) How do family members of hospice nursing home residents differ in their anxiety, depression, quality of life, social networks, perceptions of pain medication, and health compared with family members of community dwelling hospice patients? (2) What are family members’ perceptions of and experiences with end-of-life care in the nursing home setting? Methods This study is a secondary mixed methods analysis of interviews with family members of hospice nursing home residents and a comparative statistical analysis of standard outcome measures between family members of hospice patients in the nursing home and family members of hospice patients residing in the community. Results Outcome measures for family members of nursing home residents were compared (n = 176) with family members of community-dwelling hospice patients (n = 267). The family members of nursing home residents reported higher quality of life; however, levels of anxiety, depression, perceptions of pain medicine, and health were similar for hospice family members in the nursing home and in the community. Lending an understanding to the stress for hospice family members of nursing home residents, concerns were found with collaboration between the nursing home and the hospice, nursing home care that did not meet family expectations, communication problems, and resident care concerns including pain management. Some family members reported positive end-of-life care experiences in the nursing home setting. Conclusion These interviews identify a multitude of barriers to quality end-of-life care in the nursing home setting, and demonstrate that support for family members is an essential part of quality end-of-life care for residents. This study suggests that nursing homes should embrace the opportunity to demonstrate the value of family participation in the care-planning process. [ABSTRACT FROM AUTHOR]

Objective: This study aims to examine the technical quality of videoconferencing used in hospice to engage caregivers as 'virtual' members of interdisciplinary team meetings and their impressions of telehealth. Furthermore, it aims to compare the quality of plain old telephone service (POTS) and Web-based videoconferencing and provide recommendations for assessing video quality for telehealth group interactions. Materials and Methods: Data were obtained from an ongoing randomized clinical trial exploring Web-based videoconferencing and a completed prospective study of POTS-based videoconferencing in hospice. For the assessment of the technical quality, an observation form was used. Exit interviews with caregivers assessed impressions with the use of telehealth. A retrospective analysis of video-recorded team meetings was conducted rating attributes essential for the quality of videoconferencing (e.g., video artifacts, sharpness). Results: In total, 200 hospice team meetings were analyzed, including 114 video-recorded team meetings using Web-based videoconferencing and 86 meetings using POTS videophones. A direct comparison between the two modalities indicates the superiority of Web-based video in image quality but less so in audio quality. Transcripts of 19 caregiver interviews were analyzed. Caregivers found the use of videoconferencing to be a positive experience and a useful and essential tool to communicating with the hospice team. Conclusions: This study highlights the potential of telehealth to improve communication in hospice and the need for new tools that capture the quality of video-mediated communication among multiple stakeholders and strategies to improve the ongoing documentation of telehealth group sessions' technical quality. [ABSTRACT FROM AUTHOR]

Context: Family caregivers play a vital role in managing the pain of hospice patients with cancer; however, caregivers' knowledge of pain management principles and experiences as pain managers vary widely. Differences in cultural values and access to resources suggest that rural and urban hospice family caregivers may differ with regard to their pain knowledge and experience, but this has not been empirically investigated.Objectives: We sought to determine if rural and urban hospice family caregivers differed in terms of their knowledge of cancer pain management principles and their experiences managing cancer pain.Methods: Our study consisted of a secondary analysis of baseline, cross-sectional data from hospice family caregivers (N = 196) participating in an ongoing cluster randomized crossover pragmatic trial. We performed multivariable regression to model associations between caregivers' demographic characteristics and their scores on the Family Pain Questionnaire (FPQ), which included subscales measuring pain knowledge and experience.Results: When controlling for other demographic variables, rural caregivers' scores on the FPQ knowledge subscale were worse (P = 0.01) than their urban counterparts. FPQ experience subscale scores and FPQ total scores were not statistically significantly different between the two groups.Conclusion: Rural hospice family caregivers report greater pain knowledge deficits than urban hospice family caregivers, although the two groups report comparable pain management experiences. Additional research is needed to better explain observed differences. [ABSTRACT FROM AUTHOR]

Context: Family caregivers play a central role in the care of those in hospice care. Little is known about the social support networks for those providing this day-to-day care without training.Objectives: The purpose of this study was to explore changes in family and friend social networks among hospice caregivers over the course of the hospice stay.Methods: Data on social support networks were collected as part of a multisite randomized controlled trial and analyzed using structural equation modeling.Results: A statistically significant decline in the caregivers' family network subscale score was found over the four week period during which they received hospice services, reflecting a possible weakening of their family networks.Conclusion: This result illustrates the potential importance of ongoing comprehensive assessment of caregiver networks and attention to interventions that may assist in capitalizing on both the quantity of support (numbers of individuals asked to help) and the quality of social support (attending to issues of support burden). [ABSTRACT FROM AUTHOR]

Abstract: Context: Those caring for their loved ones in hospice experience tremendous stress, being faced with numerous decisions as they work to manage the pain experienced by their loved one. Although hospice care teams create pain management strategies, it is the role of the caregiver to implement these plans. Objectives: The purpose of this study was to further understand the hospice caregiver experience relating to pain management. Methods: Semistructured interviews with 146 caregivers provided data for the study. Responses to seven questions asking for a ranking of end-of-life pain management indicated a less than ideal experience. Available narratives from 38 caregivers were analyzed for themes related to further understanding of the concerns. Results: Five themes were identified in the data including difficulty with administration of pain medicines, concerns about side effects of medications, insecurity with pain assessment, frustrations with communication among health care team members, and memories of unrelieved pain. Conclusion: These findings should raise concern among hospice professionals, whose commitment is to the management of pain, including emotional pain, with a focus on both the patient and the family as a unit of care. These data clearly suggest that hospice providers have an opportunity to be sensitive to perceptions held by caregivers regarding pain management. Effective planning for pain control must incorporate the values and beliefs not only of each patient but also of the family caregiver. [Copyright &y& Elsevier]

Abstract: Context: Low oral literacy has been identified as a barrier to pain management for informal caregivers who receive verbal instructions on pain medication and pain protocols. Objectives: To examine recorded communication between hospice staff and informal caregivers and explore caregiver experiences. Methods: Using transcripts of interactions (n = 47), oral literacy features were analyzed by examining the generalized language complexity using the Flesch-Kincaid grading scale and the dialogue interactivity defined by talking turns and interaction time. Means for longitudinal follow-up measures on caregiver anxiety, quality of life, perception of pain management, knowledge and comfort providing pain medication, and satisfaction were examined to explore their relationship to oral literacy. Results: Communication between team members and caregivers averaged a fourth-grade level on the Flesch-Kincaid scale, indicating that communication was easy to understand. Reading ease was associated (r = 0.67, P < 0.05) with caregiver understanding of and comfort with pain management. Perceived barriers to caregiver pain management were lower when sessions had increased use of passive sentences (r = 0.61, P < 0.01), suggesting that passive voice was not an accurate indicator of language complexity. Caregiver understanding and comfort with administering pain medications (r = −0.82, P < 0.01) and caregiver quality of life (r = −0.49, P < 0.05) were negatively correlated with dialogue pace. Conclusion: As the grade level of talk with caregivers and hospice teams increased, associated caregiver anxiety increased. Caregivers with higher anxiety also experienced greater difficulty in understanding pain medication and its management. Specific adjustments that hospice teams can make to improve caregiver experiences are identified. [Copyright &y& Elsevier]

Background: Although there is poor communication about pain management between informal caregivers and hospice providers, little research has examined these interactions. Objective: This study explored communication between informal caregivers and hospice team members by investigating the use of medical words in care planning discussions. Design: Transcripts of clinical communication between caregivers and hospice team members were reviewed for use of medical words, word placement (statement or question), whether or not the word was explained, and the caregiver's response to the word. Setting/subjects: As part of an ongoing randomized clinical trial in the midwestern United States, informal hospice caregivers participated in recorded hospice care planning discussions. Measures: A selection of videorecorded interactions from an ongoing study was analyzed. Results: Hospice team members used six times as many medical words compared to caregivers. The majority of medical words used by caregivers and team members were drug names. Medical words were predominantly used as statements rather than questions that sought clarification. Three-fourths of medical words used by team members were not explained to caregivers. Caregivers provided little response to medical word use, indicating a lack of understanding. Conclusions: The propensity to use medical words during clinical communication with family caregivers is cautioned. In order to recognize the caregiver as a contributing team member, clinicians should limit the use of medical words, provide lay explanation alongside medical terminology, and use questions to check for understanding. More research is needed to determine assessment tools to capture the caregiver's level of understanding of medication and pain management protocol. [ABSTRACT FROM AUTHOR]

Abstract: Objective: The goal of this study was to explore empathic communication opportunities presented by family caregivers and responses from interdisciplinary hospice team members. Methods: Empathic opportunities and hospice team responses were analyzed from bi-weekly web-based videoconferences between family caregivers and hospice teams. The authors coded the data using the Empathic Communication Coding System (ECCS) and identified themes within and among the coded data. Results: Data analysis identified 270 empathic opportunity-team response sequences. Caregivers expressed statements of emotion and decline most frequently. Two-thirds of the hospice team responses were implicit acknowledgments of caregiver statements and only one-third of the team responses were explicit recognitions of caregiver empathic opportunities. Conclusion: Although hospice team members frequently express emotional concerns with family caregivers during one-on-one visits, there is a need for more empathic communication during team meetings that involve caregivers. Practice implications: Hospice clinicians should devote more time to discussing emotional issues with patients and their families to enhance patient-centered hospice care. Further consideration should be given to training clinicians to empathize with patients and family caregivers. [Copyright &y& Elsevier]