David L. Albright

Hospice Caregiver Depression: The Evidence Surrounding the Greatest Pain of All

Terminal illness affects the entire family, both the one with the illness and their loved ones. These loved ones must deal not only with the loss but with the challenges of managing daily care. The purpose of the systematic review of the peer-reviewed literature was to identify and explore depression and related interventions for caregivers of hospice patients. While the prevalence of depression reported in the identified studies of hospice caregivers ranges from 26–57%, few interventions specific to this population have been tested and the research methods have been only moderately rigorous.

Hospice Caregivers' Experiences With Pain Management: “I'm Not a Doctor, and I Don't Know if I Helped Her Go Faster or Slower”

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.

A multimethod analysis of shared decision-making in hospice interdisciplinary team meetings including family caregivers.

Background: Much of the existing research on shared decision-making in hospice and palliative care focuses on the provider–patient dyad; little is known about shared decision-making that is inclusive of family members of patients with advanced disease. Aim: We sought to describe shared decision-making as it occurred in hospice interdisciplinary team meetings that included family caregivers as participants using video-conferencing technology. Design: We conducted a multimethod study in which we used content and thematic analysis techniques to analyze video-recordings of hospice interdisciplinary team meetings (n = 100), individual interviews of family caregivers (n = 73) and hospice staff members (n = 78), and research field notes. Setting/participants: Participants in the original studies from which data for this analysis were drawn were hospice family caregivers and staff members employed by one of five different community-based hospice agencies located in the Midwestern United States. Results: Shared decision-making occurred infrequently in hospice interdisciplinary team meetings that included family caregivers. Barriers to shared decision-making included time constraints, communication skill deficits, unaddressed emotional needs, staff absences, and unclear role expectations. The hospice philosophy of care, current trends in healthcare delivery, the interdisciplinary nature of hospice teams, and the designation of a team leader/facilitator supported shared decision-making. Conclusion: The involvement of family caregivers in hospice interdisciplinary team meetings using video-conferencing technology creates a useful platform for shared decision-making; however, steps must be taken to transform family caregivers from meeting attendees to shared decision-makers.

Caregiver Evaluation of the ACTIVE Intervention “It was Like We Were Sitting at the Table With Everyone”

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.

Effects of School-Based Interventions With U.S. Military-Connected Children: A Systematic Review

Objective: To examine the effects of school-based interventions on the well-being of military-connected children (i.e., dependents of U.S. military service members, veterans, or reserve component members) who attend public or private elementary or secondary schools with parental deployment, parental reintegration, parental military-related trauma or death, or frequent moves. Method: Systematic review methods were employed to search, retrieve, select, and analyze studies that met inclusion criteria. Results: Over 1,400 citations were reviewed and 22 full-text reports were screened. One study met criteria for inclusion in this review. Effects on anxiety, self-esteem, and internalizing and externalizing behaviors were not significant. Discussion: The paucity of intervention research in this area is surprising, given the increased awareness and research on the stresses and impacts of military deployment and other unique stressors related to military life on children. The results of this systematic review support the need for further development and testing of school-based interventions that address the needs of military-connected children.

The Stress of Sadness The Most Stressful Symptoms for Hospice Family Caregivers

A family member or friend is often a hospice patients primary caregiver and, as such, may face a significant number of stressors, including challenges related to managing patient symptoms. This study investigated the most stressful patient symptoms as reported by 111 hospice family caregivers of cancer (n=66) and cardiopulmonary (n=45) patients. Researchers calculated the mean level of stress caregivers attributed to 32 different patient symptoms commonly encountered at end of life. They found the symptoms perceived as most stressful for caregivers were psychological in nature. Study findings suggest that members of the hospice interdisciplinary team should connect patients and their caregivers to various types of support to address psychological symptoms, benefitting patients and caregivers alike.

An Exploratory Study of Student Service Members/Veterans’ Mental Health Characteristics by Sexual Orientation

Abstract. Objective: Explore the mental health differences of student veterans by sexual orientation. Participants: Student service members/veterans (N = 702) from the Fall 2011 National College Health Assessment. Methods: Descriptive statistics and 2-sample proportion and mean tests were used to compare mental health characteristics. Results: Student veterans who identify as lesbian, gay, bisexual, or unsure had higher levels of mental health symptoms and treatment. Conclusions: Results suggest a need for continued examination of student service members/veterans as related to disparities in mental health by sexual orientation.

Wounded bonds: A review of the social work literature on gay, lesbian and bisexual military service members and veterans

Summary The repeal of Don’t Ask, Don’t Tell (DADT) allows people who identify as gay, lesbian and bisexual (GLB) to serve openly in the U.S. Military. Military officials are taking great efforts to include GLB service members. This article reviews the historical accounts of the military’s treatment of people who identify as GLB, emphasizing the importance of understanding this history for the social work profession. The article also reports on the review of content related to GLB service members and veterans in 13 journals of social work, identifying implications for social work. Findings Based on the applicability to topic and population, ‘journal impact factor’ was utilized to identify the 13 primary journals of social work from 1992–2013 for content related to GLB and military or veterans. Within the 13 journals only eight articles were published during this period relevant to this population. Applications Results suggest a strong need to provide more scholarly literature and research with military and veterans that identify as GLB. More information is needed to understand the needs and inform social work education and practice.

Reaction to Caregiving by Hospice Caregivers Upon Enrollment

Significant research exists demonstrating the challenges faced by informal family caregivers as they care for their loved ones. How caregivers react to this experience, especially in the case of a terminal illness, is less understood. This study explores the reactions of hospice caregivers to their caregiving experience prior to enrollment in hospice and identifies potential stressors associated with those reactions. Results found anxiety to be a significant predictor in the reaction of caregivers to their caregiving experience upon hospice enrollment.

Testing the factorial validity of scores from the caregiver pain medicine questionnaire.

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.