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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]