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Objective: We present the protocol of a study aiming to examine the efficacy of a technologically-mediated storytelling intervention called Caregiver Speaks in reducing distress and grief intensity experienced by active and bereaved hospice family caregivers of persons living with dementia (PLWD). Design: The study is a mixed-method, 2-group, randomized controlled trial. Setting: This study takes place in 5 hospice agencies in the Midwest and Northeastern United States. Participants: Participants include hospice family caregivers of PLWD. Intervention: Participants are randomized to usual hospice care or the intervention group. In the Caregiver Speaks intervention, caregivers engage in photo-elicitation storytelling (sharing photos that capture their thoughts, feelings, and reactions to caregiving and bereavement) via a privately facilitated Facebook group. This intervention will longitudinally follow caregivers from active caregiving into bereavement. The usual care group continues to receive hospice care but does not participate in the online group. Outcomes Measured: We anticipate enrolling 468 participants. Our primary outcomes of interest are participant depression and anxiety, which are measured by the Patient Health Questionnaire (PHQ-9) and the Generalized Anxiety Disorder screening (GAD-7). Our secondary outcomes of interest are participants' perceived social support, measured by the Perceived Social Support for Caregiving (PSSC) scale, and grief intensity, which is measured by the Texas Revised Inventory of Grief Present Subscale (TRIG-Present). [ABSTRACT FROM AUTHOR]

Context: There is a need for brief measurement instruments that do not cause burden to hospice caregivers. The Caregiver Quality of Life Index (CQLI) has been used in several studies, but assessment of its psychometric properties has been minimal. The CQLI-R (revised) instrument was found to have equivalent properties but also has had minimal testing in small samples.Objective: This study sought to evaluate the reliability and validity of the CQLI-R.Methods: Data were used from three hospice clinical trials. Reliability was assessed using test-retest and an item analysis. Construct validity was evaluated by comparing items to similar items within the same data set.Results: Test-rest and item analysis found moderate-to-good reliability. Construct validity found significance in comparison of CQLI-R items with those of similar instruments.Conclusions: The CQLI-R is an easy-to-use instrument to assess caregiver quality of life. Despite adequate reliability and construct validity, further evidence is needed to support content validity. [ABSTRACT FROM AUTHOR]

Context The Caregiver Pain Medicine Questionnaire is designed to measure caregiver agreement with statements regarding pain management. However, little testing has been done to determine its reliability and validity. Objectives The objective of the study was to test the factorial validity of scores from the Caregiver Pain Medicine Questionnaire as hypothesized by the original study authors. Methods Confirmatory factor analysis was conducted to assess whether the subscales postulated by the instrument authors could be replicated in external data. Results Fit statistics reveal an unsatisfactory fit between the hypothesized model and the observed data. Conclusion The theoretical model hypothesized by the original study authors was not confirmed. Results lead us to conclude that the instrument is poor and should not be used. Further research is needed to define content domains and validate the items developed to assess them. [ABSTRACT FROM AUTHOR]

Central to the hospice philosophy is the belief that the patient/family owns the plan of care. However, barriers prevent the majority of hospice patients/families from participating in the meetings where plans are created and revised. This study evaluates the participant experience of the ACTIVE (assessing caregivers for team intervention via video encounters) intervention, designed to use web conferencing technology to overcome the barriers of participation in development and review of individual care plans. Interviews were done with hospice caregivers following the death of their loved one. Caregivers involved in the intervention reported positive relationships with the hospice staff, felt involved in decision making, and got answers to their questions. Furthermore they reported staff was responsive to their needs and that participation increased their confidence, trust in the team, and provided a feeling of not being alone if they needed help. Challenges included issues with the technology, a feeling of being rushed and a frustration when they did not feel included or involved. Suggestions for improving the intervention included a more frequent meeting time, a need for to train hospice staff how to conduct web-based interactions, and suggestions for additional information for caregivers. [ABSTRACT FROM PUBLISHER]

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]

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]

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. [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]