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1.  Patient Safety Incidents in Hospice Care: Observations from Interdisciplinary Case Conferences 
Journal of Palliative Medicine  2013;16(12):1561-1567.
Background: In the home hospice environment, issues arise every day presenting challenges to the safety, care, and quality of the dying experience. The literature pertaining to the safety challenges in this environment is limited.
Aim: The study explored two research questions; 1) What types of patient safety incidents occur in the home hospice setting? 2) How many of these incidents are recognized by the hospice staff and/or the patient or caregiver as a patient safety incident?
Design and Methods: Video-recordings of hospice interdisciplinary team case conferences were reviewed and coded for patient safety incidents. Patient safety incidents were defined as any event or circumstance that could have resulted or did result in unnecessary harm to the patient or caregiver, or that could have resulted or did result in a negative impact on the quality of the dying experience for the patient. Codes for categories of patient safety incidents were based on the International Classification for Patient Safety.
Setting/Participants: The setting for the study included two rural hospice programs in one Midwestern state in the United States. One hospice team had two separately functioning teams, the second hospice had three teams.
Results: 54 video-recordings were reviewed and coded. Patient safety incidents were identified that involved issues in clinical process, medications, falls, family or caregiving, procedural problems, documentation, psychosocial issues, administrative challenges and accidents.
Conclusion: This study distinguishes categories of patient safety events that occur in home hospice care. Although the scope and definition of potential patient safety incidents in hospice is unique, the events observed in this study are similar to those observed with in other settings. This study identifies an operating definition and a potential classification for further research on patient safety incidents in hospice. Further research and consensus building of the definition of patient safety incidents and patient safety incidents in this setting is recommended.
PMCID: PMC3868266  PMID: 24160741
2.  A Systematic Review of the Evidence Base for Telehospice 
The use of telehealth technologies to overcome the geographic distances in the delivery of hospice care has been termed telehospice. Although telehospice research has been conducted over the last 10 years, little is known about the comprehensive findings within the field. The purpose of this systematic article was to focus on available research and answer the question, What is the state of the evidence related to telehospice services? The article was limited to studies that had been published in the English language and indexed between January 1, 2000 and March 23, 2010. Indexed databases included PubMed and PsycINFO and contained specified key words. Only research published in peer review journals and reporting empirical data, rather than opinion or editorials, were included. A two-part scoring framework was modified and applied to assess the methodological rigor and pertinence of each study. Scoring criteria allowed the evaluation of both quantitative and qualitative methodologies. Twenty-six studies were identified with the search strategy. Although limited in number and in strength, studies have evaluated the use of a variety of technologies, attitudes toward use by providers and consumers, clinical outcomes, barriers, readiness, and cost. A small evidence base for telehospice has emerged over the last 10 years. Although the evidence is of medium strength, its pertinence is strong. The evidence base could be strengthened with randomized trials and additional clinical-outcome-focused research in larger randomized samples and in qualitative studies with better-described samples.
PMCID: PMC3306588  PMID: 22085114
telehealth; technology; telemedicine; home health monitoring
3.  Comparing Face-to-Face and Telehealth-Mediated Delivery of a Psychoeducational Intervention: A Case Comparison Study in Hospice 
This case study compared the delivery of a psychoeducational intervention with hospice caregivers, delivered in person and via videophone. This study demonstrates the feasibility of using telehealth tools to deliver interventions in hospice and identified ways or protocols that can be adapted for telehealth delivery. The caregiver expressed satisfaction with the telehealth experience, supporting the value of video communication. The results have laid the framework for further implementation of an ongoing, randomized clinical trial examining the use of telehealth tools for delivery of psychoeducational interventions with hospice caregivers.
PMCID: PMC2930881  PMID: 20575616
hospice; telehealth; videophones; psychoeducational interventions; problem-solving therapy
4.  Comparing Face-to-Face and Telehealth-Mediated Delivery of a Psychoeducational Intervention: A Case Comparison Study in Hospice 
Telemedicine Journal and e-Health  2010;16(6):751-753.
A comparative case study comparing the delivery of a psychoeducational intervention with hospice caregivers, delivered in person and via videophone, was conducted. The caregiver expressed satisfaction with the telehealth experience, supporting the value of video communication.
This case study compared the delivery of a psychoeducational intervention with hospice caregivers, delivered in person and via videophone. This study demonstrates the feasibility of using telehealth tools to deliver interventions in hospice and identified ways or protocols that can be adapted for telehealth delivery. The caregiver expressed satisfaction with the telehealth experience, supporting the value of video communication. The results have laid the framework for further implementation of an ongoing, randomized clinical trial examining the use of telehealth tools for delivery of psychoeducational interventions with hospice caregivers.
PMCID: PMC2930881  PMID: 20575616
hospice; telehealth; videophones; psychoeducational interventions; problem-solving therapy
5.  The Role of the Hospice Medical Director as Observed in Interdisciplinary Team Case Reviews 
Journal of Palliative Medicine  2010;13(3):279-284.
The purpose of this study was to observe the roles played by six hospice medical directors from two hospice programs during interdisciplinary team case reviews.
The study analyzed videotapes of case reviews in two hospice agencies over a two year period. The results indicate that the roles and levels of participation vary. Medical Directors were observed reviewing and assisting with care plans, acting as a liaison with primary physicians, educating staff, consulting with attending physicians, participating in quality assurance activities, and dealing with budget issues.
Medical Directors did not make home visits or assume the role of attending physician during the observation period.
The study demonstrates variance in roles among medical directors and raises new questions for future research.
PMCID: PMC2883496  PMID: 20078244
6.  Barriers to Pain Management: Caregiver Perceptions and Pain Talk by Hospice Interdisciplinary Teams 
As patients are cared for in their home by family caregivers, several challenges arise in effective pain and symptom management. Despite hospice’s reputation as the gold standard for terminal care, there is still a need to improve pain management practices including challenges that caregivers face, related to pain assessment, reluctance and fear of administering medication, noncompliance with pain medicine regimens, and hesitance to report pain. The hospice philosophy of care promotes service for both patients and their family by an interdisciplinary team, and total pain management is a goal of this care. The aim of this control phase of a larger National Cancer Institute-funded mixed methods study was to understand the current practice of hospice assessment and collaboration on informal caregiver issues related to pain management. This study of 30 hospice caregiver/patient dyads from one rural hospice found that 87% of caregivers indicated concern with at least one question on the Caregiver Pain Medicine Questionnaire (CPMQ). Interdisciplinary team discussions for 23 of the dyads were recorded over nine months for a total of 86 sessions. Although caregiver concerns were identified with the CPMQ by the research team, there was only one discussion of caregiver pain related concerns during the hospice team meeting. This despite the finding that 38% of the time involved in a patient discussion is spent on pain related talk. These findings indicate an opportunity for improvement by hospice teams through focusing on caregiver assessment and intervention.
PMCID: PMC2581443  PMID: 18495415
Caregiver Pain Medicine Questionnaire (CPMQ); hospice; pain management; interdisciplinary teams
7.  Exploring the Collective Hospice Caregiving Experience 
Journal of Palliative Medicine  2014;17(1):50-55.
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.
PMCID: PMC3887433  PMID: 24351126
9.  Exploring Oral Literacy in Communication with Hospice Caregivers 
Journal of pain and symptom management  2013;46(5):10.1016/j.jpainsymman.2012.11.006.
Low oral literacy has been identified as a barrier to pain management for informal caregivers who receive verbal instruction on pain medication and pain protocols.
To examine recorded communication between hospice staff and informal caregivers and explore caregiver experiences.
Using transcripts of interactions (n=47), oral literacy features were analyzed by examining generalized language complexity using the Flesch-Kincaid grading scale and 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.
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=.67, p<.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=.61, p<.01), suggesting that passive voice was not an accurate indicator of language complexity. Caregiver understanding and comfort with administering pain medications (r=−.82, p<.01) and caregiver quality of life (r=−.49, p<.05) were negatively correlated with dialogue pace.
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.
PMCID: PMC3695037  PMID: 23522518
caregivers; pain management; hospice team; health literacy
10.  Hospice caregiver depression: The evidence surrounding the greatest pain of all 
Journal of social work in end-of-life & palliative care  2013;9(4):10.1080/15524256.2013.846891.
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.
PMCID: PMC3849709  PMID: 24295096
hospice; caregiving; depression
11.  Family caregiver participation in hospice interdisciplinary team meetings: How does it affect the nature and content of communication? 
Health communication  2012;28(2):110-118.
Collaboration between family caregivers and healthcare providers is necessary to ensure patient-centered care, especially for hospice patients. During hospice care, interdisciplinary team members meet bi-weekly to collaborate and develop holistic care plans that address the physical, spiritual, psychological, and social needs of patients and families. The purpose of this study was to explore team communication when video-conferencing is used to facilitate the family caregiver’s participation in a hospice team meeting. Video-recorded team meetings with and without family caregiver participation were analyzed for communication patterns using the Roter Interaction Analysis System. Standard meetings that did not include caregivers were shorter in duration and task-focused, with little participation from social workers and chaplains. Meetings that included caregivers revealed an emphasis on biomedical education and relationship-building between participants, little psychosocial counseling, and increased socio-emotional talk from social workers and chaplains. Implications for family participation in hospice team meetings are highlighted.
PMCID: PMC3382048  PMID: 22435889
12.  Targeting communication interventions to decrease oncology family caregiver burden 
Seminars in oncology nursing  2012;28(4):262-270.
The goal of this paper was to articulate and describe family communication patterns that give shape to four types of family caregivers: Manager, Carrier, Partner, and Loner.
Data Sources
Case studies of oncology family caregivers and hospice patients were selected from data collected as part of a larger, randomized controlled trial aimed at assessing family participation in interdisciplinary team meetings.
Each caregiver type demonstrates essential communication traits with nurses and team members; an ability to recognize these caregiver types will facilitate targeted interventions to decrease family oncology caregiver burden.
Implications for Nursing Practice
By becoming familiar with caregiver types, oncology nurses will be better able to address family oncology caregiver burden and the conflicts arising from family communication challenges. With an understanding of family communication patterns and its impact on caregiver burden, nurses can aid patient, family, and team to best optimize all quality of life domains for patient as well as the lead family caregiver.
PMCID: PMC3489276  PMID: 23107184
13.  Conveying empathy to hospice family caregivers: Team responses to caregiver empathic communication 
The goal of this study was to explore empathic communication opportunities presented by family caregivers and responses from interdisciplinary hospice team members.
Empathic opportunities and hospice team responses were analyzed from biweekly 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.
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.
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.
PMCID: PMC3414649  PMID: 22554387
empathy; hospice; family caregiver
14.  Stress Variances Among Informal Hospice Caregivers 
Qualitative health research  2012;22(8):1114-1125.
Care interventions are not routinely provided for hospice caregivers, despite widespread documentation of the burden and toll of the caregiving experience. Assessing caregivers for team interventions (ACT) proposes that holistic patient and family care includes ongoing caregiver needs assessment of primary, secondary, and intrapsychic stressors. In this study, our goal was to describe the variance in stressors for caregivers to establish evidence for the ACT theoretical framework. We used secondary interview data from a randomized controlled trial to analyze hospice caregiver discussions about concerns. We found variances in stress types, suggesting that caregiver interventions should range from knowledge and skill building to cognitive-behavioral interventions that aid in coping. Family members who assume the role of primary caregiver for a dying loved one need to be routinely assessed by hospice providers for customized interventions.
PMCID: PMC3559181  PMID: 22673093
caregivers/caregiving; coping and adaptation; end-of-life issues; illness and disease; life-threatening/terminal; psychosocial issues
16.  Technologies to Support End of Life Care 
Seminars in oncology nursing  2011;27(3):211-217.
To describe the current level of utilization of informatics systems in hospice and palliative care and to discuss two projects that highlight the role of informatics applications for hospice informal caregivers.
Data sources
Published articles, web resources, clinical practice and ongoing research initiatives.
There are currently few informatics interventions designed specifically for palliative and hospice care. Challenges such as interoperability, user acceptance, privacy, the digital divide and allocation of resources all affect the diffusion of informatics tools in hospice.
Implications for nursing practice
Caregiver support through use of IT is feasible and may enhance hospice care.
PMCID: PMC3143374  PMID: 21783012
informatics; hospice; palliative care; information technology; Internet
17.  Sharing atrocity stories in hospice: A study of niceness message strategies in interdisciplinary team meetings 
Progress in palliative care  2011;19(4):172-176.
The telling of atrocity stories offers therapeutic benefits to healthcare providers. Transcripts of hospice interdisciplinary team (IDT) meetings were used to analyze strategies for telling atrocity stories in the performance of symbiotic niceness through criticism. Symbiotic niceness draws upon niceness messages to establish reciprocal niceness by others in order to facilitate emotional labor. In IDT meetings the two predominant strategy types used were indirect and direct criticism. Nurses and medical directors engaged in niceness message strategies mostly about patients and other healthcare professionals. The study concludes that hospice IDT meetings are a venue for team members to communicate symbiotic niceness through emotional labor.
PMCID: PMC3167176  PMID: 21909193
team meetings; atrocity stories; hospice; interdisciplinary team
18.  Use of videophones to deliver a cognitive-behavioural therapy to hospice caregivers 
We investigated the feasibility of videophones for the delivery of problem-solving therapy (PST) for informal hospice caregivers. Informal hospice caregivers were randomly assigned to receive PST from researchers using videophones, instead of communicating in face-to-face sessions. Outcome measures included caregiver anxiety, quality of life and problem-solving abilities, technical quality of videosessions and satisfaction of participants (including both subjects and researchers). A total of 42 hospice caregivers were enrolled (mean age 62 years). A total of 112 videocall attempts were documented. Of these, 100 (89%) resulted in successful videocalls and 12 (11%) were cases in which a call was not established. The average videocall duration was 38 min (range 18–84 min). The overall technical quality of the videocalls was very good. Caregivers reported a slightly higher quality of life post-intervention than at baseline, although this was not significant. Caregivers reported lower levels of anxiety post-intervention than at baseline (P = 0.04). The subjects were generally satisfied with the videophones during their exit interviews.
PMCID: PMC3093969  PMID: 21303934
19.  Family Perspectives on the Hospice Experience in Adult Family Homes 
Growing numbers of terminally ill older adults receive hospice services in adult family homes (AFHs); however, little is known about the provision and receipt of end-of-life care in such environments. This paper reports findings from a qualitative exploration of family members’ perspectives of the hospice experience in AFHs. Analysis of data obtained during interviews of fifteen residents’ family members exposed significant challenges associated with transition to an AFH, highlighted the importance of AFH and hospice staff in family members’ assessment of overall quality of care, and emphasized the critical nature of communication in AFH settings.
PMCID: PMC3023972  PMID: 21240714
hospices; long-term care; adult family home; family
20.  Reciprocal Suffering: Caregiver Concerns During Hospice Care 
For many hospice caregivers, the constancy and difficulty of caregiving impact their physical quality of life and cause depression, psychological distress, guilt, loneliness, and restrictions on social activities.
Deviating from traditional unidimensional research on hospice caregivers, this study explored the transactional nature of reciprocal suffering by examining caregiver concerns through four dimensions: physical, psychological, social, and spiritual.
Researchers analyzed audiotapes of intervention discussions between hospice caregivers and research social workers.
Results indicated that of the 125 pain talk utterances, the majority referenced psychological concern (49%), followed by physical (28%), social (22%), and spiritual (2%). Reflections on concerns revealed a global perspective of caregiving, which highlighted the patient’s needs juxtaposed to the caregiver’s recognized limitations.
By examining the reciprocal nature of suffering for caregivers, this study reinforced the need for assessing caregivers in hospice care, with specific emphasis on the importance of providing caregiver education on pain management.
PMCID: PMC3053049  PMID: 21146356
Caregiver; pain management; hospice; suffering; caregiver burden; caregiver quality of life
21.  Caregiver Participation in Hospice Interdisciplinary Team Meetings via Videophone Technology: A Pilot Study to Improve Pain Management 
This paper discusses a pilot study testing a videophone intervention enabling hospice patients and caregivers to remotely participate in interdisciplinary team meetings, with the goal of improving pain management. The aim of this study was to test potential outcome measures, and combine the data with qualitative observations to assess the overall feasibility and promise of the intervention. The outcomes evaluated included hospice patient quality of life, caregiver perceptions of pain medications, caregiver quality of life, and caregiver anxiety related to team participation. The pilot study showed that caregiver participation in the care planning process is feasible and may change caregiver perceptions of pain medication, potentially improving pain management for hospice patients.
PMCID: PMC2890035  PMID: 20299692
Hospice; CPMQ; caregivers; interdisciplinary team; caregiver quality of life
22.  The Use of Videophones for Patient and Family Participation in Hospice Interdisciplinary Team Meetings: A Promising Approach 
European journal of cancer care  2010;19(6):729-735.
Inclusion of patients and caregivers in decisions related to the delivery of care is inherent in the hospice philosophy. Telemedicine technologies offer a potential solution to the challenges presented by the geographic distance between team meetings and the home environment. While inclusion requires additional coordination by the hospice team, it also offers an important opportunity to improve communication between the team and the patient and family. A modified conceptual model based on two previous frameworks is outlined to support patient and family involvement in hospice team meetings. Further research is suggested to determine the structural feasibility of patient and family involvement via videophone as well as the structural and procedural changes resulting from this inclusion. Finally, clinical outcomes and family evaluation of the inclusion experience need to be thoroughly researched before final conclusions may be reached.
PMCID: PMC2891692  PMID: 19832889
Hospice; Interdisciplinary Teams; Patient and Family Involvement
23.  Interdisciplinary Collaboration in Hospice Team Meetings 
Journal of interprofessional care  2010;24(3):264-273.
Hospice and palliative care teams provide interdisciplinary care to seriously-ill and terminally-ill patients and their families. Care teams are comprised of medical and non-medical disciplines and include volunteers and lay workers in healthcare. The authors explored the perception of collaboration among hospice team members and actual collaborative communication practices in team meetings. The data set consisted of videotaped team meetings, some of which included caregiver participation, and team member completion of a survey. Findings revealed that the team’s reflection on process was most likely to occur in team meetings, however least likely to occur when caregivers were present. Although team members had a high perception of interdependence and flexibility of roles, this was less likely to be enacted in team meetings with and without the presence of caregivers. Caregiver participation in team meetings had a positive impact on collaborative communication and the potential benefit of caregiver inclusion in team meetings is explored.
PMCID: PMC2854854  PMID: 19995271
end-of-life care; interdisciplinary collaboration; mixed methodology
24.  Question asking by family caregivers in hospice interdisciplinary team meetings 
This paper reports findings from a pilot study that enabled family caregivers to use videophone technology to participate in hospice interdisciplinary team meetings. The goal of the study was to ascertain which issues were important to caregivers and the hospice team. A qualitative content analysis of video-recorded team meetings between team members and caregivers was conducted. In a sample of 12 caregivers in 36 discussions, caregivers asked a total of 137 questions, with the majority as Yes/No questions (45.5%) mainly used to seek clarification (19.7%). Hospice staff asked 396 questions, with the majority of questions consisting of Yes/No questions (66.6%) mainly used to ask about the overall condition of the patient (17.2%). Data from this study suggest that when given the opportunity to participate in hospice team meetings caregivers will ask questions of hospice staff. Additionally, in light of prior research, this study’s findings suggest that caregivers may have questions that go unaddressed, specifically in regards to pain and medication.
PMCID: PMC2860630  PMID: 20415357
caregivers; end-of-life care; communication
25.  Exploring Interpersonal Communication in Hospice Interdisciplinary Team Meetings 
In health care teams, lack of collaboration or inability to collaborate undermines the goal of providing holistic and comprehensive geriatric care. This study examines relational communication control used by hospice interdisciplinary team members in their attempt to share information and contribute to decision making in team meetings. Eighty-one hospice team discussions were coded for message control types. Analysis of the data found that the nurse’s role as primary reporter implicitly created a struggle for relational control among other team members within the meeting. This study concluded that a majority of interpersonal communication in the team meetings was aimed at gaining control of the information exchange. Future attention should be given to organizational policy aimed at shaping the structure of team meetings.
PMCID: PMC2727068  PMID: 19650622

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